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Head and Neck Network's Posts (163)

Auckland is not the only centre holding head and neck cancer support meetings. As far as we know there are regular meetings in Nelson and Christchurch. We are not sure about Wellington. Does anyone know?

Here, committee member Cosette Calder reports on the most recent Christchurch meeting. 

On Thursday 19th of October Christchurch held its 6 weekly meeting. This meeting was about  “patient stories” where patients tell their story to the group.

Our first speaker was diagnosed with base of tongue cancer five years ago and our second speaker spoke of throat cancer diagnosis two years ago. These stories brought up many issues faced by our head and neck community. Particularly swallowing issues, lose of taste and hearing impairment.

The stories led to a group discussion on these topics with others sharing their similar experiences.

Although we did share experiences of trauma there were some lighthearted comments and laughs as well which made for an informative, relaxed social evening. A place for our patients and caregivers to feel supported, and that they are not on this journey alone.

If you would like to join our Christchurch group, please contact Pene Clifford from the Cancer Society 03 3795835 and view the Canterbury West Coast Cancer Society website where you can find a list of support groups and times. 

https://canterbury-west-coast.cancernz.org.nz/how-we-can-help/want-support/support-groups-and-programmes/

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Kathryn is one of our regular contributors. Her husband Greg was treated for adenoid cystic carcinoma not long after the loss of their daughter to cancer. I asked her if she had wisdom to share on how to deal with the suffering that cancer causes us. Here are her words.

The top illustration is of their happy place, their farm just out of Whangarei, rolling country dotted with native bush. There's one of the Parnell Rose Gardens, one of Greg fixing his car with his youngest son and of the Auckland Domain. 

Once the jagged edges of shock and devastation settle a little, we all develop our own ways of coping with a cancer diagnosis and the harrowing journey that follows.  Navigating our way through the long and tumultuous road of cancer affects us all differently.  It is our own personal experience and as such we learn coping strategies that are unique to us.

I asked Greg to think about what helped him to cope during the time of his diagnosis, as well as the period of surgery and radiation therapy that followed.  He struggled to recall much of that miserable time 12 months ago.  It seems that often our greatest stresses in life get relegated to deep distant parts of our memory bank where gradually, over time they diminish a little bit though of course never completely.  He did recall however, that during his dark post op days, it was the little things that meant the most.  It sounds like an old cliché, but in this instance, for him, that’s really how it was.  Small and sometimes inconsequential things that previously he may have taken for granted or overlooked the significance of.  He remembers feeling a sense of relief at hearing my footsteps along the hospital corridor floor every morning and knowing that meant that he didn’t have to cope with the long, arduous day ahead alone.  Other things too, visits from his kids, a new hospital room complete with a view.  Being able to leave his hospital bed and have a walk around the ward.  And, during the long nights when sleep eluded him, the realisation of just how precious his life had suddenly become.

During RT, he was grateful that for almost all of his treatment duration he felt able to get out and about and do things, as well as go for the odd jaunt around Auckland.  We both appreciated that during this time he felt well enough to leave Domain Lodge and escape almost certain cabin fever by venturing outdoors every day to have a stroll through the Domain, and one day even an afternoon exploring the Parnell rose gardens and the pretty bays beyond.

 It was appreciation to Maggie from the Whangarei Cancer society who organised us a room change at the lodge so we could sleep alongside each other again; it was appreciation of his medical team and all of those involved in his care.  It was the deep contentment of being home on Friday.   It was the relief when yet another week was ticked off and the finish line loomed nearer.

Though many days were far from smooth sailing, these things collectively contributed to tiny steps forward and helped us to cope with the day to day reality of being a cancer patient (and his wife) in another city and away from all that was familiar to us.

My brief was ten things that have helped us to cope.  I’ve thought about this and talked to others I know that have been affected by cancer but I’ve only come up with 9!   Maybe we can add to this list as a group …

  1. Having the love and support of family.  For Greg and I, this has to be on top of the list.  And indeed it came through often with everyone I spoke to.   When we experience extreme stress, discomfort or anxiety, all we really want is the familiarity and comfort of our nearest and dearest.   We want family and loved ones close by to be our voice and our advocate.  We want reassurance and guidance from them.  Often we also require emotional support, like quiet company at the bedside; or during procedures and appointments.  Sometimes it can be a seemingly insignificant act of reaching out that can make a difference to a patient; like a hug or a hand squeeze when the time is right.
  2. Practical assistance from the wider family network, friends, work colleagues, neighbours.   The call or visit that offers useful support, by way of taking care of tasks that need attention.  Errands that need to be done; animals that need to be fed.  The mail box that needs clearing. A home cooked meal delivered when you weren’t expecting it; a ride to an appointment or procedure so you don’t need to stress about the traffic or parking; your prescriptions being collected from the pharmacy, or a book from the library.  Errands and incidentals.  Little things mean a lot.  
  3. Agencies such as the Cancer Society and in our case the Head and Neck Support Network are only a call or a message away.  How humbling it is to know that people genuinely care about you and your experiences.   It can be a comfort to share your story with others that have had the same or similar experiences, and from that a sense of camaraderie and companionship can follow.
  4. Being able to escape.  It can be exhausting, overwhelming and depressing aboard the cancer train.  Whilst Greg was undergoing treatment at Auckland Hospital we sought refuge at the Domain as often as we could.  Sometimes we braved the traffic and ventured over the bridge to visit family and our dogs that were being cared for on the shore.   Once we even caught the train to an unknown destination.  A journey or even a gentle stroll around the block was the best medicine for body and mind.   As well as that, it was helpful to have some time together to reconnect as a couple; cancer can place enormous stress on relationships. For some it is having a quiet and peaceful place to retreat to.  A sanctuary when it all feels just too overwhelming.   Everyone I spoke to told me that they had a special place of refuge.  It was the beach, their garden, their own room or perhaps their own bed.  It’s different for all of us.
  5. The internet.  Knowledge.  While sometimes Dr Google can cause more harm than good, nevertheless, having access to the internet during and after cancer treatment was incredibly helpful.  At the touch of a button it links us to others globally who are experiencing or have experienced the same or similar.  For some people there is a huge need to information gather, especially in the early days.  Having access to the internet for info and for linking up with others is a big coping factor for some patients and their supporters.
  6. Having a plan.  Unfortunately, we don’t all get this one, or sometimes perhaps we don’t feel in control of our plan, but for those of us that do, it can be motivating and empowering.  Having some direction or a pathway forward and knowing that you, your carers and your health providers are all on the same page is a sound way to hold one’s own.
  7. Faith.  We all have our own unique values and beliefs. For some of us, having a faith in a greater being or of an everlasting life is a comfort during times of uncertainty. It can sustain us and give us hope.
  8. Time.   Thanks to Andrew for this one.  He described feeling utterly wretched and miserable whilst undergoing treatment.  It was difficult and almost impossible to look beyond the situation he was in.  The days all merged together in an overwhelming blur.   It was hard to imagine a time beyond where he was currently at.  But over the following months and years, slowly he improved, became fit and well again and life has resumed almost as it was prior to his cancer diagnosis.   So, endeavour to remember that things won’t always be as bad as they are today.  Ride out the storm and hope that time will make things better.
  9. Alternative or complimentary treatments and therapies.  Acupuncture, massage, reiki, herbal products and supplements.  Whilst some patients prefer hospital only treatment, some feel that alternative regimes can work together with or alongside their conventional treatment. Not for everyone, but we all have the right to choose. 

Coping is something that we learn and perhaps get better at with practice.  I have lost count of the times over the last five years that this comment, which there is no response for, has been said: “I don’t know how you cope with what’s happened”.   It’s not until we stand on the other side of the fence that we truly understand how soul destroying that statement is.  Life doesn’t always offer us a choice, and some days we simply can’t cope or don’t cope.   But mostly we try to, because we have to.  We find ways and means that work for us.  We get up in the morning and face another new day and, in the words of the infamous Dory from Nemo, we hold our head a little bit higher and we just keep swimming.

 

 

 

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Knowledge is power – know your enemy – is generally good advice but it can also become overwhelming when trying to `know’ a subject as diverse, complicated and downright evasive as cancer. Being a qualified doctor or researcher with years of study behind you can help, but for those less academically inclined today’s lead is a layman’s look at immunotherapy.

Followed by a piece emphasising again that there’s profit in every misfortune.

Meanwhile:
# Without a good education it would be hard to understand the value of a good education.
# We should collectively spread the superstition that the bones of poachers cure impotency.
# If an octopus loses a tentacle does it become a septopus?

https://www.reddit.com/r/Showerthoughts/

Immunotherapy designed to release the brakes
(U.S.)The human immune system is both clever and powerful. But it is often foiled by cancer’s wily ways.

A new approach to cancer treatment — immunotherapy — aims to unmask the disease for the deadly threat it is, then direct the full force of the immune system on malignancies that would otherwise grow and spread unchecked.

Our multilayered immune defenses spot most foreign invaders and crush them decisively. But cancer, arising out of one or more mutations in our DNA, is a home-grown threat with a deceptively reassuring look. Even as cells multiply and spread, malignant cells cloak themselves in innocent garb.

Confused, the immune system pulls back its talons. And cancer has its way with us.

Immunotherapy can change this.

It stems from a growing understanding of how cancers start, grow and protect themselves from both medicines and our bodies’ natural defenses. It also capitalizes on researchers’ efforts to unpack the exquisite complexity of the immune system, including when and why it retreats from a fight.

The first generation of immunotherapy drugs is designed to release the “brakes” that inhibit the immune system from attacking cancers. By various means, they block an antibody that spares cancer cells from a sentence of “programmed death” issued by the immune system.

These so-called PD-1 blockers are the first of a class of immune checkpoint inhibitors. They are used to treat a wide range of advanced malignancies, including melanomas and cancers of the lung, breast, colon, bladder, thyroid and endometrium.

The first checkpoint inhibitor, a medication called Yervoy (ipilimumab), was approved for U.S. patients in 2011. The drug improved survival time for patients with metastatic melanoma from an average of six months to 10 months. Next came Opdivo (nivolumab) in 2014, which extended survival for patients with certain head and neck cancers, small-cell lung cancers, Hodgkin lymphoma, and some advanced colorectal cancers.
Half a dozen more immunotherapy drugs followed, including Keytruda (pembrolizumab) for lymphoma, metastatic head and neck cancers, non-small cell lung cancers and advanced melanoma.

These drugs tend to help more patients than standard therapy does, and with less punishing side effects. They extend average survival in large groups of patients — sometimes just by months, but generally by spans that are considered meaningful.

And for a small subset of patients whose prognosis is bleak, these drugs can drive cancer into outright remission. This is what instills the greatest hope in cancer doctors.

Full story:
http://www.latimes.com/science/healthy-living/la-he-hl-cancer-immunotherapy-20171012-story.html

Cashing in on cancer-diagnostics

(U.S.) Agilent Technologies ( A ) is an original equipment manufacturer (OEM) of a broad portfolio of test and measurement products serving multiple end markets. The company's portfolio and increased focus on segments with higher growth potential is a big positive. The company also enjoys a robust presence in the health care market.

A few recent developments bode well for the company's growth.

One such development is the FDA's approval for a cancer diagnostic, PD-L1 IHC 28-8 pharmDx. The test will be used in cases of urothelial carcinoma ("UC") and squamous cell carcinoma of the head and neck ("SCCHN").

The PDL1 IHC 28-8 pharmDx test has already been approved for melanoma as well as non-squamous, non-small-cell lung cancer ("NSCLC"). It has now been approved for UC and SCCHN patients too. The test enables physicians in the United States to identify UC and SCCHN patients, who still have disease progression on or after platinum-based chemotherapy and are most likely to benefit from treatment with Opdivo.

We are encouraged by the company's efforts to develop new assays for cancer treatment.The new assay will help Agilent to cash in on the fast-growing health care cancer-diagnostics segment..

Full story:
http://www.nasdaq.com/article/why-you-should-add-agilent-a-to-your-portfolio-right-now-cm858252

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Between relative newcomers like immunotherapy and robotic surgery along with the more traditional radiation, chemotherapy etc, it could be tempting to think cancer is on the run. It’s true the battle has heated up, but it will go on for a while yet and collateral damage is often extensive. However, as the stories below indicate, progress is being made.

Meanwhile:

# Imagine how out of hand things would get if we didn't get hungover.
# If rats ever gain planet-of-the-apes style intelligence, they are going to inherit some amazing medical knowledge for their society.
# Are cats sometimes allergic to themselves?

https://www.reddit.com/r/Showerthoughts/

Novel approach Reduces Treatment Toxicities in Patients With HPV-Related Oropharyngeal Cancer

(U.S.) The incidence of mouth and throat cancer is on the rise due to transmission of the human papilloma virus (HPV), but physicians at Memorial Sloan Kettering (MSK) Cancer Center (original building pictured above) have managed to significantly reduce the intensity of treatment and improve quality of life for these patients.

The most common treatment modalities for oropharyngeal cancer (OPC) include concurrent chemoradiation therapy, robotic surgery with postoperative radiation or chemoradiation, and induction chemotherapy followed by chemoradiation therapy — a combination known as trimodality (using three modes of treatment) therapy. Trimodality therapy can leave patients with debilitating side effects, including long-term issues with speech and swallowing.

At MSK, fewer than 8% of oropharyngeal cancers are treated with trimodality therapy compared with the North American average of 41%.2

This massive decrease is due to a number of factors, but has occurred primarily because MSK employs a multidisciplinary approach to treatment planning as well as careful upfront patient selection for robotic surgery or nonsurgical treatment. Importantly, although HPV-related OPC is a “rapidly emerging disease,” HPV-positive status is associated with a more favorable prognosis compared with HPV-negative disease.

HPV-positive OPC shares histologic features with HPV-negative OPC, but there are fundamental biological differences. For example, HPV-positive OPC exhibits activated mutations of PIK3CA, a loss of TRAF3, and amplification of E2F1. 7 This has important implications for targeted therapy.

In 2014, MSK’s Head and Neck Service began convening surgery, radiation oncology, and medical oncology specialists for a weekly disease management team (DMT) review of every patient case involving a diagnosis of squamous cell carcinoma of the oropharynx. Pathology and radiology results are assessed prior to case review by a multidisciplinary tumor board, and an individualized treatment plan is designed for each patient by team consensus.

Robotic surgery now allows for tumors from the back of the throat to be surgically removed in a minimally invasive fashion with optimal visualization through the open-mouth transoral robotic surgery (TORS) system. At MSK, a formal radiology review is performed to identify factors that lead to postoperative chemoradiation, including extra capsular spread and being at high risk for positive margins.

Only specifically selected patients who meet these criteria are offered TORS.

Full story:
http://www.onclive.com/publications/oncology-live/2017/vol-19-no-19/novel-approach-reduces-treatment-toxicities-in-patients-with-hpvrelated-oropharyngeal-cancer

Vaccine making medical history in Southampton

A POTENTIALLY life-saving cancer vaccine is being trialled for the first time in Southampton.

Michael Knowlton made medical history as the first person in the world to test a vaccine for his head and neck cancer, HPV 16, as part of an immunotherapy clinical trial by the University of Southampton.

It was an irritating cough which first prompted the 63-year-old, a company director, to visit his doctor in 2014, and tests later confirmed it was cancer. What followed was a procedure to remove the tumour from the back of his tongue which left him in intensive care.

At the end of gruelling rounds of chemo and radiotherapy he was told should the cancer return, his options for further treatment were limited.

It was then that Michael was referred to the clinical trial by the University of Southampton.

Michael took part in the first phase of the trial which recruited disease-free patients to see how they reacted to the vaccine in terms of side effects and to establish dose levels.

The trial was funded by Cancer Research UK. The vaccine ‘kick-starts’ the immune system to recognise the HPV16 cancer and destroy it before it has a chance to develop.

University of Southampton research sister Cristiana Goncalves said: “People like Michael are really special, these patients are all volunteers and Michael is currently disease-free. He doesn’t need to do this, it is purely for research which makes them even more special.”

Full story:
http://www.dailyecho.co.uk/news/15582559.Vaccine_making_medical_history_in_Southampton/

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I am very impressed by the recent Make Sense Campaign run by the European Head and Neck Cancer society (EHNS). 

Here is an infographic they put out in September for the European Head and Neck Cancer Week.

(I used Docufreezer to convert the graphics below from PDF form so that you could see them without having to click.)

The Make Sense campaign is one of a series of head and neck cancer awareness movements that have taken place in the world this year. They are all using social media to advertise their causes and its through social media that we became aware of them or reinforced our connection. Here is another interesting graphic from Make Sense. You can see these in their original PDF form together with other top notch resources on their webpage. https://www.ehns.org/site/

Together with the Swallows Charity in the UK and Beyond Five in Australia they are doing a sterling job of publicizing the warning signs of head and neck cancer and advocating for prevention and better treatment.

Swallows is a patient-led charity, like ours, but much bigger,  while Beyond Five and Make Sense are, or are part of, organisations run by medical experts. All of them make plentiful use of infographics, something we are emulating in our group by using committee member Olwen Williams’ skills.

You can see Olwen's infographics on this website under Printables. She can make graphics to order. This is a work in progress, started for WHNCD 2017 in July and undergoing constant improvement. 

The Swallows group has also produced some graphics which have inspired us but which your Investigator cannot find right now. Here is a photo of their banner with World Head and Neck Cancer Ambassador, Chris Curtis, on the right.  You can see our beautiful banner under About Us/Photos on this website. 

Beyond Five is famous for it's very clear and informative 3D animations of head and neck cancer anatomy. Do have a look at their website, if you find it hard to understand medical terms and procedures. They make it very clear.  https://www.beyondfive.org.au/

The patient-led group called Head and Neck Cancer Support Australia made an Australian patients' book which also contains New Zealand stories. Chris Curtis from the UK, above, pioneered the book, while Marty Doyle from Brisbane and Julie McCrossin from Sydney compiled the Australian version. Links Healthcare printed the book and recently sent us another 270 copies so that many new patients in New Zealand can receive them in a patient care pack. Here is a picture of the boxes delivered to my place last week: a welcome bounty. 

It used to be a lonely road that was walked by  head and neck cancer patients and their carers, especially if they had ongoing issues after treatment. But now there is a worldwide movement to connect us all and allow us to support each other and learn from each other. 

Maureen

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There are a range of cancer treatments with mix and match combinations usually the approach of the day. Understanding how they work however is a challenge for the layman though the lead story this week offers a pretty good and accessible explanation for immunotherapy.

That’s followed by a few words of caution and a British celebrity success story.

Meanwhile:
# We must be truly exceptional at curing diseases in mice by now
# Never be afraid of failure. Remember, you can always be used as a bad example.
# It is impossible to dig only half a hole

Immune Therapies Take Center Stage in the War Against Cancer: Tips for Patients
The missiles doctors send to fight cancer in a patient have a new ICBM: immunotherapy. This revolution in cancer treatment has serious implications for patients and people wanting to prevent cancer.

For years the standard attack plan to fight cancer was catch it early, at stage I when it is most curable, and use surgery, radiation and chemotherapy to get the highest cure rates. But for the past several years and especially in the last few months, doctors and patients have new therapies to use to control the cancers. These new therapies are immunotherapy, and targeted treatments, precision drugs, improved hormonal agents, and biotherapies.

The most exciting of these new treatments are the FDA approved immunotherapies. For a long time, scientists have recognized that the body’s immune system has been sluggish to fight cancer once it has appeared.

Beginning in 1990 new types of treatments were developed that enhanced the immune system to overcome its otherwise low activity. The first was the drug ipilimumab (Yervoy), which targeted immune system blockade (CTLA-4) and resulted in increased immunologic T cells in the body to more effectively kill cancer cells. This was initially approved for advanced metastatic melanoma, but today it is also used in localized melanoma at high risk of recurrence, and is showing remarkable anti-cancer effects in combined treatments of lung cancer and other tumors. It was approved by the FDA “way back” in March 2011.

Then, another class of immunotherapy drugs was discovered that targeted another biological pathway (PD1-PDL1) that kept the immune system in check, preventing it from fighting cancer. The first 2 drugs used to stimulate the immune system nivolumab (Opdivo) and pembrolizumab (Keytruda) were found to produce remarkably long remissions in some patients with melanomas and kidney cancers. Today, these drugs are approved by FDA for use in many different cancers (lung, bladder, head and neck cancers). You have probably seen television ads for them without realizing that they represent the immunology of the future.

Most surprisingly, the FDA has even approved pembrolizumab for use not based on the type of cancer which a patient has (the standard approval mechanism in the past), but instead based on whether a cancer (regardless of cancer origin, like breast cancer or like lung cancer) shows unstable DNA changes (called microsatellite instability high, or MSI high). This is a first for the FDA, and a welcome change based on improved scientific discoveries.
Because of the success of nivolumab and pembrolizumab, other drug companies have produced drugs which also attach the PD1-PDL1 immune pathway and are now approved by the FDA, including atezolizumab (Tecentriq), avelumab (Bavencio) and durvalumab (Imfinzi). Oncologists and patients have many choices.

Thanks to pioneering work in laboratories, scientists have also been able to take the body’s immune cells and enhance them in test tubes to fight cancer or leukemia in a patient’s body. Inside a patient, immune T cells can kill cancer, but in the past were not active enough to control the cancer. By using special protein antigens, the activity of these T cells can be improved. The system is called CAR T cell therapy. On August 30, 2017, , the FDA approved the first CAR T cell immunotherapy of this type, called trisagenleleucel (Kimriah), to produce long remissions (probably cures) in children or young adults with acute lymphoblastic leukemia. Today, other antigens are being used to stimulate T cells to fight other leukemias, myeloma, lymphoma, and solid tumors like glioblastoma, to further extend CAR T cell therapy.

Immunotherapy is established as a very active part of anti-cancer treatments. Be sure you have the latest information to help you choose the best treatment for you. And remember to get your cancer preventive vaccines.

Full story:
http://www.huffingtonpost.com/entry/immune-therapies-take-center-stage-in-the-war-against_us_59cebfe4e4b034ae778d4a7e

Cancer cure is ‘pipe dream’, says world renowned doctor


(U.K.) A WORLD renowned cancer specialist says finding a cure for the disease is a “pipe dream” but that the future for cancer sufferers is positive.
Dr Siddhartha Mukherjee, 47, won the Pulitzer Prize for non-fiction in 2011 for his book The Emperor Of All Maladies: A Biography Of Cancer.

He told Desert Island Discs how the intricacies of the illness make it unlikely that we will ever be able to eradicate it completely.

Dr Mukherjee is the Assistant Professor of Medicine at the Columbia University Medical Centre in New York and studied at Stanford, Oxford and Harvard.
The father-of-two said: “This disease, I think, is not going away. The idea that we will erase it from the face of human history I think is a pipe dream. It is part of us."

“That’s not to be nihilistic about the treatment of cancer but it is to recognise that part of the complexity of treating cancer is that there are very few diseases where the fundamental of the disease is so locked in with the fundamental of who we are.”

Despite this, he still sees a positive future for cancer treatment.

He said: “In the next 10 years we are going to try to deploy [what we have learned about cancer] and it is like living on the edge of an experiment. We are going to ask the question if we do this systematically in cancers can we learn to treat cancers in a more rational and reasonable way.”

Full story:
http://www.express.co.uk/life-style/health/860762/Cancer-cure-pipe-dream-doctor-interview-desert-island-disks

Danny Baker. Not one for brooding


(U.K.)Danny Baker says: “Couldn’t be better,” when our waiter asks him how he is today. “Giving off sparks!” And, with the exception of the months he spent undergoing intense and gruelling treatment for the cancer of the head and neck that was diagnosed in 2010, the odds on him replying in precisely the same way on nine days out of 10 are high.

The radio presenter, comedy writer and one-time punk correspondent for the NME, was last contestant in and first voted out (“a tremendous joke in and of itself”) of the last I’m a Celebrity Get Me Out of Here! This excoriator of the “pin-headed weasels” and bean-counters of his radio employers BBC London, and chronicler of his upbringing in Bermondsey, south London, has one main aim in life: “To live for pleasure alone.”

But not everything can be turned into a joke. He always knew this book would be about his illness, from which he fully recovered – aside from an extreme sensitivity to spicy food that even today leaves his eyes streaming over his lunch – after a period of treatment during which he was unable to eat or drink, or even to turn his head from side to side.

“My first thought was to make it funny,” he says, and there’s no way you can do that, otherwise people will feel cheated, they’ll say you’re hiding stuff.” The upside, he’d been told, was that he had a good chance of survival; the downside was the severity of the cure. “You cannot take even a sip of water,” they said. “And the one lasting image I had was running a tap – when I could still get to the bathroom – and watching it run and overflow and just look at it and look at it.”

He says he doesn’t know what his wife will make of his account of his illness, although he’s told her “it’s a bit strong”; as a family, they rarely discuss it now that it’s in the past.

“I didn’t really learn any lesson out of it,” he tells me. “Terrible I know. I don’t appreciate life more, but then I couldn’t have appreciated life more.”

Full story:
https://www.theguardian.com/media/2017/oct/01/danny-baker-interview-going-on-the-turn

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The above picture comes from the Macmillan website. It doesn't relate directly to this post but might tease the mind to figure out some controllable causes of cancer. 

Whether a patient, family member or friend, finding a perspective on cancer is always going to be difficult and the reams of stories, updates, advice and analyses probably don’t help.

The lead article below from the Economist offers one of the few `world view’ summations around and is worth a quick read through.

 Meanwhile:

#The first piece of a puzzle is always correctly placed.
# Home is where you know which light switch to press.
# Jury duty is really the only time it is socially acceptable to judge someone as a group.

Closing in on cancer, Economist

(U.S.) THE numbers are stark. Cancer claimed the lives of 8.8m people in 2015; only heart disease caused more deaths. Around 40% of Americans will be told they have cancer during their lifetimes. It is now a bigger killer of Africans than malaria.

But the statistics do not begin to capture the fear inspired by cancer’s silent and implacable cellular mutiny. Only Alzheimer’s exerts a similar grip on the imagination.

Confronted with this sort of enemy, people understandably focus on the potential for scientific breakthroughs that will deliver a cure. Their hope is not misplaced. Cancer has become more and more survivable over recent decades owing to a host of advances, from genetic sequencing to targeted therapies. The five-year survival rate for leukaemia in America has almost doubled, from 34% in the mid-1970s to 63% in 2006-12. America is home to about 15.5m cancer survivors, a number that will grow to 20m in the next ten years. Developing countries have made big gains, too: in parts of Central and South America, survival rates for prostate and breast cancer have jumped by as much as a fifth in only a decade.

From a purely technical perspective, it is reasonable to expect that science will one day turn most cancers into either chronic diseases or curable ones. But cancer is not fought only in the lab. It is also fought in doctors’ surgeries, in schools, in public-health systems and in government departments. The dispatches from these battlefields are much less encouraging.

First, the good news. Caught early, many cancers are now highly treatable. Three out of four British men who received a prostate-cancer diagnosis in the early 1970s did not live for another ten years; today four out of five do. Other cancers, such as those of the lung, pancreas and brain, are harder to find and treat. But as our Technology Quarterly in this issue shows, progress is being made. Techniques to enable early diagnosis include a device designed to detect cancer on the breath; blood tests can track fragments of DNA shed from tumours. Genome sequencing makes it ever easier to identify new drug targets.

The established trio of 20th-century cancer treatments—surgery, radiation and chemotherapy—are all still improving. Radiotherapists can create webs of gamma rays, whose intersections deliver doses high enough to kill tumours but which do less damage to healthy tissue as they enter and leave the body. Some new drugs throttle the growth of blood vessels bringing nutrients to tumours; others attack cancer cells’ own DNA-repair kits.

Cancer may be relentless; so too is science.

The greatest excitement is reserved for immunotherapy, a new approach that has emerged in the past few years. The human immune system is equipped with a set of brakes that cancer cells are able to activate; the first immunotherapy treatment in effect disables the brakes, enabling white blood cells to attack the tumours. It is early days, but in a small subset of patients this mechanism has produced long-term remissions that are tantamount to cures. Well over 1,000 clinical trials of such treatments are under way, targeting a wide range of different cancers. It is even now possible to reprogram immune cells to fight cancer better by editing their genomes; the first such gene therapy was approved for use in America last month.

Yet cancer sufferers need not wait for the therapies of tomorrow to have a better chance of survival today. Across rich and poor countries, the survivability of cancer varies enormously. Men die at far higher rates than women in some countries; in other countries, at similar levels of development, they do comparably well. The five-year survival rate for a set of three common cancers in America and Canada is above 70%; Germany achieves 64%, whereas Britain manages a mere 52%. Disparities exist within countries, too. America does well in its treatment of cancer overall, but suffers extraordinary inequalities in outcomes. The death rate of black American men from all cancers is 24% higher than it is for white males; breast-cancer death rates among blacks are 42% higher than for whites. A diagnosis in rural America is deadlier than one in its cities.

Variations between countries are partly a reflection of health-care spending: more than half of patients requiring radiotherapy in low- and middle-income countries do not have access to treatment. But big budgets do not guarantee good outcomes. Iceland and Portugal do not outspend England and Denmark on health care as a proportion of GDP, but past studies show wide variation in survivability in all cancers.

Taxes and budgeting are a lot less exciting than tumour-zapping proton beams and antibodies with superpowers. But the decisions of technocrats are as important as the work of technicians. Cancer kills millions of people not simply for want of scientific advance, but also because of bad policy.

Full story: https://www.economist.com/news/leaders/21728893-science-will-win-technical-battle-against-cancer-only-half-fight-closing

 Labour (Ireland) wants the HPV vaccine to be rolled out to boys sooner rather than later

(Ireland) The plan was originally to roll the free vaccine out to boys – but this has yet to happen.

Labour’s Alan Kelly has said his party will table a motion calling for the HPV vaccine to be extended to boys.

Speaking at the party’s think-in in Athy in Kildare, Kelly said he has been working with Health Minister Simon Harris on the initiative.

From the years 2014 -2015, there was an 87% uptake in the HPV vaccine – the highest since the programme began in 2010. However, immunisation rates have now fallen below 50%.

The health minister, along with other politicians, have attributed the fall-off in the uptake to misinformation being circulated from anti-vaccine campaigners.

Full story:
http://www.thejournal.ie/labour-hpv-vaccine-3590938-Sep2017/

 New Zealand has had free HPV vaccines for boys since January

New treatment for head and neck cancer gets approved
(U.K.)Scottish patients will be the first in the UK to benefit from potentially life-extending immunotherapy treatment for head and neck cancer on the NHS.

The Scottish Medicines Consortium (SMC) have approved nivolumab for these types of cancer that are difficult to treat and often require many invasive and complex therapies. Studies have shown that double the number of patients treated with nivolumab were still alive after one year, compared with those treated with standard chemotherapy.

Head and neck cancer was the sixth most common cancer diagnosis in Scotland in 2015 with 1,283 and was within the top ten cancer related deaths at 452 people.

Gregor McNie, Cancer Research UK’s senior public affairs manager in Scotland, said: “Head and neck cancer is very difficult to treat once it has relapsed or spread, and options, including surgery and radiotherapy, are limited. So it is fantastic news that nivolumab will be available for some patients in Scotland with this devastating disease.

“Around 1,300 patients are diagnosed with head and neck cancer in Scotland every year.
 

Full story:
http://www.scotsman.com/news/uk/new-treatment-for-head-and-neck-cancer-gets-approved-1-4557269

Queenslanders in wealthy areas less likely to get head and neck cancer
(Australia)Wealth has been revealed to be a major driver in cases of head and neck cancer in Queensland with those in disadvantaged areas 1.7 times more likely to be diagnosed than affluent areas.

According to data from Cancer Council Queensland, living in remote areas was another factor, with 20 in every 100,000 people diagnosed with head and neck cancer, compared to 14 in every 100,000 in metro areas between 2010 and 2014.

Cancer Council Queensland chief executive Chris McMillan said this type of cancer often went undiagnosed because the symptoms were easy to miss.

“You think I’ve just got a sore throat because it’s hung around or I’ve just got a hoarse voice because it’s hung around and that could be early warning signs of cancer,” she said.

Distance to health services was another factor which contributed to the differences.

Full story:
http://www.smh.com.au/national/health/people-in-wealthy-areas-less-likely-to-get-head-and-neck-cancer-20170912-p4yvvm.html

 

 

 

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Network News 18 September, 2017

Responding to patients' post treatment concerns


As I recover from my own surgery, I read the Facebook discussions of our members. One topic that continues to arise, and where patients, carers, and family express dissatisfaction, is the period of time where patients are post treatment. Concerns expressed cover issues of psychological support, dental care and rehabilitation, surveillance of ongoing health and well being, access to services, and clinicians, and the role of general practitioners in post treatment. 

The national Standards of Service Provision for Head and Neck Cancer details the services patients will receive throughout their cancer journey. Standard Nine details the services for follow up and surveillance. There are two parts to the standard:

        9.1 Patients with head and neck cancer have access to a care coordinator and to a range of experienced rehabilitation professionals throughout the course of their cancer journey, in conjunction with their GP. 

The rationale for the standard states:

Patients with head and neck cancer are a heterogenous group likely to present with complex or long-term needs. Early access to rehabilitation services is associated with better outcomes and can prevent secondary disability. 

       9.2 Follow-up plans include clinical review by appropriate members of the Multi Disciplinary Team (MDT), working in conjunction with the patient, the family/whanau and their GP.

This rationale states:

Patients with head and neck cancer are at risk of: persistence of disease after treatment, local and regional recurrence, new disease. Persistent recurrent or new disease may present to any member of the MDT as symptoms or functional deterioration.  Early detection of and intervention for new problems lead to better outcomes. 

Each patient needs to be able to contact, and communicate with their care coordinator on a regular basis to ensure they access the rehabilitation support. You should have a copy of your follow up plan which details when you will be followed up and how your cancer will be monitored.

Do you have the name and contact details of your care coordinator?

Do you have a follow up plan? 

For each region we have created a group with details of the care coordinators and their contact details. http://headandneck.org.nz/groups

 If we have missed anyone, please let us know and we will update the information. It is critical that every patient, carer, and family/whanau member has access to this information. 

Ask for a copy of your follow-up plan. If your MDT does not have a model available, you can download and print one here, and give to your clinician. https://www.instituteforquality.org/cancer-survivorship-care-plan-template

Network News

Our Network continues to grow. We are delighted to have 514 Twitter followers, 182 people in our Facebook group, 106 website members, and 395 LinkedIn contacts. If you want to connect with us through any of these channels you can do so here. Our website, http://headandneck.org.nz/, Facebook Group, Twitter, https://twitter.com/HeadNeckNZ, LinkedIn, https://www.linkedin.com/in/headnecknz/

New Members

We welcome to our community, Jay Maxwell, Rochester, MN, Heather Jean Anderson, Timaru, Janet Brill, New Plymouth, Emma Wilkins, Staffordshire, Sharon Agger, Rotorua, Jane Gregory, Hamilton, Mere Manning, Napier and Ian Sell, Auckland.

As you know, you can click on the names to send a message to each of these people, and welcome them to our Network. 

Popular Posts
As new people join our network or are diagnosed with head and neck cancer they access a number of our articles and resources. For the last two weeks these were the most read posts. 

Tuesday Health News - Mental Health and Vaccinations

Mental health has featured this week as political parties made promises to provide funding, and there was suicide prevention day on Sunday.  National Party MP for Tamaki, Simon O'Connor made a mistake when he seemed to equate suicide and euthanasia, which earned him a rebuke from PM Bill…

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Monday Guest Editorial

This weeks Guest Editor is the Network Chair, Diana Ayling, these are her Notes from Mill Island

Cancer. The very word is intimidating, and strange. What does it actually mean when they tell you, "you have life threatening cancer."? It means you are growing some mutant, and dangerous cells that intend to grow structures which will prevent vital aspects of your bodily functions to continue. So really,…

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I'm an atheist, but ... Thursday Investigator

After my cancer treatment three years ago I was living alone in a new town, looking for ways to give back and to connect to my community. Like plenty of cancer survivors and carers before me I volunteered to help at the local Hospice. 

What  sticks in my mind about my Hospice volunteer stint is a conversation I heard during the three-day orientation course. We were addressed by a spiritual adviser. This’ll be good, I thought. I love a bit of philosophising. After…

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Ka kite ano,

Diana Ayling

Chair

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General Practice Funding Fiasco

Why do some GPs charge so much more than others? It's all to do with a faulty funding formula which both major parties have promised to fix. Looks as if they still don't get it. We asked one of our members, Dr Andrew Miller, to comment. 

How you ever wondered why some general practices charge adults $18 and others charge anywhere from $35-65?. Well it's because the general practices are given different levels of government subsidy based on a historic and grossly inequitable funding formula which our current government has refused to review for the last nine years. Surprise, surprise but the election circus has seen Labour promise to review the general practice funding fiasco and National has followed suit.

However, neither major party seems to have any understanding about how funding is actually allocated so are both still way off the mark. It may be hard to believe but funding isn't based on the need of the patient. Funding is given to general practices for everyone enrolled in that practice not whether they can afford to pay for access or not. This system has 700,000 high needs patients paying high fees and 700,000 wage and salary earners paying low fees - nothing to do with the actual need or income of the patient. The better funded practices offering cheaper visits are called Very Low Cost Access. The lower funded practices charging the higher fees are called Access Practices.

Some practices have as low as 8% of their population deemed high needs/low income but can give the other 92% of their patients cheap visits. On the other hand some practices have close to 50% of their patients high needs/low income but don't get extra funding for these patients and have to charge them higher fees. This is clearly ludicrous and unjustifiable.

So what are the major parties promising? Both have said they'll give extra funding to all practices to give all high-needs/low income patients additional funding to allow cheaper visits. National would set the cheaper visit at $18 and Labour at $8. This is a really good idea but then both parties' policy promises unravel because they're going to leave the 700,000 wage and salary earners in the historically better funded practices still getting cheaper visits. So if Labour get in they've said some practices can offer $8 visits for all patients (regardless of need or income) and some practices can offer $8 visits for their higher needs patients and $32 for everyone else. National is $18 for all high needs patients and $35-65 for the rest. This remains grossly inequitable, illogical and may see the bankruptcy of about half of all general practices in NZ. If you fill your car up in one place for $1 but it cost $4 down the road I wonder where you'd decide to fill the tank? Don't you just love politicians!

Dr Andrew Miller

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A few weeks ago we had a post containing pics of animals we acquired to help us get through treatment. We also have pets of the past that have given people pleasure as they travel through this head and neck cancer-affected life. Here are some beautiful pet pics I could not fit in last time.

Here are Molly's beloved dogs, Frostie and Petey.

Another pair of dogs belonging to Kathie and Greg who live on a farm near Whangarei.

What about Diana's rescue cat Gina who is a real character? She steals the neighbour's things with one of her favourites being microfibre cloths. 

Tina's cat takes pride of place.

Ann looked after her son's dog during treatment and he followed her around everywhere

Narelle and Shane's dog loves selfies. 

And finally, Pat and Bernard with a lovable ball of fluff a fair few years ago

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A constant annoyance in reading through reports for this column is the tendency of so many writers to use terminology that can likely be interpreted only by a minority of experts. Coming from a profession that insisted any writing be understood by the average, literate 12-year-old, it’s an annoying habit.

However the news, once deciphered, is usually encouraging…..`dysphagia’ by the way means `difficulty swallowing’.

Meanwhile:

# You become much less afraid of things going bump in the night after you get a cat.

# All art was "modern art" when it was created.

# Future me has a lot of stuff to do.

Swallowing Exercise May Improve Chronic Dysphagia

(Netherlands) — A novel rehabilitative swallowing exercise program aids long-term head and neck cancer survivors with chronic dysphagia, according to a study published in Head & Neck.

Sophie AC Kraaijenga, MD, PhD, from The Netherlands Cancer Institute in Amsterdam, and colleagues evaluated an intensive strength training program in 17 head and neck cancer survivors with chronic dysphagia. Swallow and non-swallow exercises were performed for 6-8 weeks, allowing for progressive muscle overload, including chin tuck, jaw opening, and effortful swallow exercises.

The researchers found that the program was feasible, with an 88% completion rate. Exercise compliance was 97%. After the training period, there were substantial

improvements in chin tuck, jaw opening, and anterior tongue strength. All but one patient reported benefiting from the exercises.

"Some objective and subjective effects of progressive load on muscle strength and swallowing function could be demonstrated," the authors wrote.

Full story:
http://www.neurologyadvisor.com/general-neurology/swallowing-exercise-improves-chronic-dysphagia/article/681035/

From bed to bench and back to bed: Mimicking how HPV-positive cancer responds to treatment

(U.S.) Patients with head and neck squamous cell carcinoma who are positive for human papilloma virus (HPV-positive) have been observed to respond significantly better to chemo-radiotherapy than HPV-negative patients. This observation is surprising because HPV infection leads to an increased risk of developing oropharyngeal cancer. To date, the reason for this dichotomy has not been well understood.

In an article in the August 2017 issue of EMBO: Molecular Medicine, researchers and clinicians at the Medical University of South Carolina (MUSC) Hollings Cancer Center report having identified one of the underlying mechanisms—expression of the viral protein E7 leads to cell death through mitophagy, a process that destroys the mitochondria. They went on to develop a novel peptide that mimics this pathway and improves therapeutic intervention in HPV-negative head and neck cancers.

"This study looked at both the clinical aspects as well as the mechanistic and therapeutic aspects of oral cancer. We are very excited about these findings because they represent what is happening in the clinic," says Besim Ogretmen, Ph.D., senior author for this study, director of the Lipidomics Shared Resource Center and professor of Biochemistry and Molecular Biology at MUSC.

Ogretmen's laboratory has a history of studying mitochondria as well as a specific lipid, ceramide. Association of ceramide with mitochondria elicits a decrease in energy production as well as an increase in the production of toxic molecules called reactive oxygen species. The findings described in their recent work bridges these two areas of study and describes a mechanism of cell death termed ceramide-induced mitophagy, which plays an important role in killing oral cancer cells.

Ceramide-induced mitophagy is a two-pronged approach to killing cancer cells. The first prong involves treating cancer cells with cisplatin, a chemotherapeutic agent that mimics ceramide. The treated cells accumulate ceramide at the mitochondria. The second prong involves the viral protein E7. The E7 protein liberates the cellular protein E2F5, which is then capable of binding another cellular protein called dynamin related protein 1 (DRP1). This complex is then targeted to the mitochondria. Importantly, it is the combined presence of ceramide and DRP1 at mitochondria that prompts mitochondrial degradation and ultimately cell death.

Having described the mechanism by which HPV-positive cancer cells succumb to chemotherapy, the Ogretmen lab next wanted to determine if they could apply these findings to HPV-negative cancers, since patients with these cancers are much more likely to succumb to their disease relative to patients with HPV-related cancer.

"Based on these mechanistic findings, we developed a peptide that can mimic the HPV effects without the HPV infection," says Ogretmen.

In order to accomplish this, they developed a peptide that mimics the interaction of the cellular proteins E2F5 and DRP1. Treatment of HPV- oral cancer cells with cisplatin and this novel peptide led to increased cell death in a manner that was similar to treatment of HPV-positive cancer cells with cisplatin. Further experiments showed that this peptide was effective at killing HPV cancer cells in a mouse model.

Future studies are aimed at better understanding the mechanism by which ceramide is incorporated into mitochondria. How does ceramide enter the cell? How is ceramide transported to the mitochondria? Better understanding of this pathway may provide further avenues for improved treatment with cisplatin or other ceramide-like compounds.

Overall, these results demonstrate that chemotherapy is much more effective in HPV-positive cancer cells and that this improved efficacy can be achieved in HPV-negative cancer cells through co-treatment with an E2F5 peptide.

"We are very excited about the potential therapeutic aspects of this peptide; however, developing a drug and taking that drug to the clinic takes a lot of effort and a lot of funding," says Ogretmen.

There are many hurdles that have to be overcome before this novel treatment becomes available in the clinic. One of the first hurdles is manufacturing large quantities of the peptide using good laboratory practices, which is a requirement of the Food and Drug Administration

Full story:

https://medicalxpress.com/news/2017-09-bed-bench-mimicking-hpv-positive-cancer.html

New cancer drug reduces tumor size by 'up to 50 percent'

(U.K.) New research from the University of Southampton in the United Kingdom investigates the way in which cancer takes over certain cell types and uses them as a life support. Finding a way to target these turncoat cells could help to reduce a tumor's success.

One of the many reasons that cancer is so difficult to treat is its ability to hijack normal cellular components and switch them from useful to deadly. Cancer can therefore turn vital, natural cell types against the body.
As Dr. Aine McCarthy, Cancer Research UK's senior science information officer, says, "Some cancers are incredibly difficult to treat and can use the body's own cells to help them grow, evade treatment, and spread around the body. Researchers have been trying to unlock the secrets behind this for many years."

The findings of the most recent study in this field, carried out by researchers at the University of Southampton, are published this week in the Journal of the National Cancer Institute.

An example of the repurposing of the body's biological mechanisms involves fibroblasts. Normally, these cells make a range of products, such as collagen and elastic fibers, helping to fix organs and cells together.

However, cancer can utilize these cells for its own purpose, turning them into cancer-associated fibroblasts (CAFs).

CAFs support a tumor as it grows and can help it spread. Earlier studies carried out at the University of Southampton have demonstrated that increased CAF levels are associated with poorer survival rates in a number of cancers, including bowel and head and neck cancers.

They have also shown that CAFs protect cancer cells from chemotherapy and suppress the immune system's anti-cancer response.
The relationship between CAF levels and survival could make them a potential target for pharmacological intervention. To date, however, attempts to interact with them have been unsuccessful.

Full story:
http://www.medicalnewstoday.com/articles/318812.php

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September Meeting Report

It was good to see two new members at our meeting this morning: Susan and Kevin, both from Northland and both receiving radiotherapy here in Auckland. 

Dr Kim Gear was unable to attend but we discussed the dental situation at some length. This is an ongoing project of ours with the next step to hear from Kim about her "survivorship" hospital and my intention to follow up a suggestion that I contact the Dental Association. 

We talked about the election year promises and what we would like to see come out of new health spending. Yes, more funding, a more patient-centred service and a shorter waiting time for surgery. One of our members has a fractured jaw but might have to wait four months for surgery. 

But our two most substantial topics were end of life choices and the Australian version of the patient book published by the Swallows Charity in the UK.

End of Life Choices

Dr Mary Panko, a lecturer at Unitec, is also the secretary of End of Life Choices, the new name for the Voluntary Euthanasia Society. They no longer like the word euthanasia and prefer to look at the subject of choice. There are two aspects to this. What advance care directives can we make legally? And, should the law be changed to allow assisted dying. (David Seymour has presented a bill to parliament.)

Mary reported the following statistics: 

  • 30,000 people die each year in New Zealand. 
  • 5 - 8% of these people have what we might call a "bad" death. That would be 550 people. 
  • 606 people committed suicide in the last 12 months. 10% of these people were over 65 - that amounts to over 60 people. 

How can we provide people with more choice at the end of life, choice for a peaceful death?

She emphasized that we must respect everyone's choices. Those who do not wish to have a choice at the end, those with a strong religious belief, need to be utterly respected.  However,  many of us want some control over the way we die. You could argue that our wishes need to be respected too. She said she was largely in favour of David Seymour's bill (the only thing she agreed with him on). But many of the issues will need to be discussed if it goes ahead. 

David Seymour's End of Life Choice Bill 

http://www.legislation.govt.nz/bill/member/2017/0269/latest/DLM7285905.html

The following website summarizes his bill. 

 http://euthanasiadebate.org.nz/resources-2/end-of-life-choice-bill/

David Seymour’s End of Life Choice Bill proposes that any New Zealand citizen or permanent resident 18 years or older will be eligible for ‘assisted dying’ if he or she suffers from:
 

  • a terminal illness or other medical condition that is likely to end his or her life within 6 months; or
  • a grievous and irremediable medical condition; and
  • is in an advanced state of irreversible decline in capability;
  • experiences unbearable suffering that cannot be relieved in a manner that he or she considers tolerable; and
  • has the ability to understand the nature of assisted dying; and the consequences for him or her of assisted dying.

Ideas from other countries

One member pointed out that Oregon had a very successful law which allowed people to have medication at hand to take when they were ready. The majority, she said, did not take the medication but they could have it in their cupboard for when it was needed. There are many safeguards written into the legislation. Washington State and California have similar laws and Canada has carried out a thorough review of the ethics of assisted dying. 

Links here:

http://www.oregon.gov/oha/PH/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3265521/

Mary maintained that she did not like the idea of medications in the cupboard. However, there was so much discussion among the people in the group that we did not clarify this. 

What we can do now: Advanced Care Directives

Even without a change of law, there are many choices we can make in advance by writing an advance care directive. There is a more substantial list than merely Do Not Resuscitate. Mary said that a woman she knew tattooed her "rules" on her body: do not resuscitate, no antibiotics etc. She thought it was much more practical to write these conditions in a legal document.

Their document is called "Guide to Dying - Your Way". Here is an extract from their site. (They have drawn up a legal document which you can download for $15. You can order a hard copy for $25.) 

When thinking about dying, it’s easy to forget that you may be in a situation where you are unable to speak for yourself, unable to communicate what you do and don’t want – for example, after a head injury, stroke or heart attack – or you may be suffering from Alzheimer’s disease, dementia or other health issues that could alter your quality of life.

An Advance Directive (AD) is literally specifying what you do and don’t want, written down, witnessed and signed. Your Agent is the person you have chosen to speak for you if and when necessary. Someone who knows and understands you and is prepared to argue for what you want.

Your completed Advance Directive acts as an important guide for your Agent who will communicate your choices. This is extremely helpful for the medical team who may not be familiar with your case, but want to provide the best care possible. It is also very helpful for your family members who otherwise may not agree with one another as to the best course of action.

https://ves.org.nz/guide


A big thank you to Mary for talking to us. We really only scraped the surface of the issue. The discussion was lively and made it hard to keep up with the note-taking.

Mary talks to many schools and retrement homes. She is undaunted when she has the whole audience against her as she did a Muslim girls' school recently. It is her warmth and humanity that make a somewhat uncomfortable subject an affirmation of life and compassion rather than a focus on death. 

Readings from the Swallows Book

Thanks to Dr David Grayson we recorded four live readings from parts of this book. I read a passage on the need for psychological support by Julie McCrossin, while David Stevenson, Judy and Marlene read other parts. We added our voices to the chorus of people who want to support people affected by head and neck cancer. It's best to view this on Twitter. Our Twitter address is @HeadNeckNZ. 

 

 

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Radiation and chemotherapy remain the first line of attack against head and neck cancer – unfortunately they don’t always work and surgery becomes a necessity.  Even there though technology continues to provide major advances with robotic surgery looking good. The article below is a beginner’s introduction to the technique, followed by a bit of HPV caused cancers and a reasonably novel fundraising idea.

(The illustration is of the APOBEC3 enzyme mentioned in story 2.)

Meanwhile:

A werewolf that doesn't know he's a werewolf would be an unawarewolf.

The person who invented the snooze button had to be the most motivated-to-be-lazy person in history.

The term "raw sewage" seems to imply there is an alternate, cooked version.

Throat cancer: New surgical technique helps you recover faster

(Virginia. U.S.)Robotic surgery is opening new doors in the treatment of head and neck cancer as some patients are able to avoid radiation and chemotherapy – if the disease is caught early. WVU Medicine otolaryngologist Rusha Patel, MD, discusses the benefits of robotic surgery for throat cancer.

What is robotic surgery?
Trans-oral robotic surgery (TORS) is a type of minimally invasive surgery used to operate on areas of the throat with precise robotic instruments. This surgical approach uses a guided endoscope (a tubular instrument that can look deep into the body) to provide 3D images of tumors in the throat, base of the tongue, and tonsils. These tumors were previously challenging to reach with traditional tools.

When is robotic surgery used?
The most common use of TORS is for early cancers in the throat or voice box. TORS is especially helpful for operating on areas at the tonsils and back of the tongue where HPV-related cancers tend to occur. In some cases, TORS may be used to get biopsies from areas in the throat that are difficult to reach. Some patients have benign (noncancerous) growths in their throat, and TORS is useful for examining and operating on them.

What are the benefits?
With TORS, you can avoid external incisions, and your recovery period will be shorter compared to traditional open surgery. Our robotic system gives us access to hard-to-reach areas of the mouth and throat, and TORS makes it possible to operate on tumors that would otherwise need a much longer and riskier surgery. If head and neck cancer is caught early, TORS has the ability to treat cancers in these areas surgically, potentially limiting or avoiding radiation and chemotherapy.

Is robotic surgery safe?
TORS has been FDA approved since 2010, and it is used in many hospitals around the country with a high safety record. The surgeon is always in first command of the robotic system, much like how a pilot navigates an airplane. The robotic instruments are extensions of the surgeon’s own hands, and each motion is controlled by human action.

Full story:
https://medicine.hsc.wvu.edu/News/Story?headline=throat-cancer-new-surgical-technique-helps-you-recover-fast

Why Does HPV Cause Cancer? New Research May Have The Answer

(Colorado) We know that certain behaviors and environmental factors can lead to cancer, such as smoking and exposure to pollution, but new research suggests that sometimes the body’s own immune response to a virus may lead to cancer-causing mutations. The research is still in its early stages, but if it holds over the course of further testing, it could lead to more effective cancer prevention methods.

The study, from the University of Colorado Cancer Center, showed that enzymes created by the immune system in response to an invading virus may cause cancerous mutations, Gen News reported. According to the research, an enzyme called APOBEC3 is released in response to a viral infection and works by scrambling the virus’ DNA in an effort to disable it. However, it may also scramble the person's DNA as well, increasing the risk of cancer. This hypothesis may help to explain why infections with human papillomavirus (HPV) often lead to cancer.

In their study, researchers showed that the APOBEC3 enzyme caused mutations in genes involved with about 40 percent of HPV-positive head and neck cancers, but only 10 percent of head and neck cancers not related to HPV.

Full story:
http://www.medicaldaily.com/why-does-hpv-cause-cancer-new-research-may-have-answer-421678

Bark For Life

 (LIHUE U.S.) —Bark For Life is a fun, ACS fundraiser that honors the benefits of pets and the relationship between dogs and their owners while raising money to help cancer patients and fund research.

Everyone is encouraged to come out. People participate for various reasons: To honor the unconditional love of canines, celebrate cancer survivorship, honor people and pets lost to cancer, and fundraise in support of the American Cancer Society’s mission of eliminating cancer in hopes that one day no one will ever have to hear the words “you have cancer.”

“Everyone will make new dog and human friends at this fun event,” according to a press release.

Registration is $25 for one canine and its human companion, $40 for two, or $100 for a team of five. Those who do not have dogs but want to support Bark For Life may come for the fun and donate.

Full story:
http://thegardenisland.com/news/local/bark-for-life-is-saturday/article_4f6be31c-dd74-56cf-8084-0070144932b3.html

 

 

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Network News, Monday 4 September

Congratulations to our 100th website member, Emma Wilkins of Staffordshire.  We are very pleased that our site has gained so much traction after only 10-11 months. Most of our discussion is over on our closed Facebook group, but the website is doing well too, in terms of viewer-and membership. 

Welcome also to our 101st member, Mere Manning of Napier. Remember that you are all more than welcome to comment under our blog posts or join our forum. 

To Auckland members, a further reminder that this month's meeting is on Thursday 7 September at 9.30 Domain Lodge. I will be bringing along the UK and Australian patient book which was released on WHNCD in Australia and which contains three of our New Zealand stories. David Grayson will record a live reading of part of the book and share it on social media. This is the latest thing, folks. We share visual and video pieces and make contacts around the world in the head and neck cancer community. We are making new friends all the time and with these broader contacts the power of our advocacy increases and the depth of our knowledge. 

When we record parts of our meetings live, they can be shared around the country. 

Big news. Domain Lodge is getting busier and busier. They are finding it hard to accommodate us for parking purposes. Therefore NEXT YEAR, 2018, we will be moving to the somewhat inconvenient time of 11.30 - 1.30  on the first MONDAY of every month. There will be parking. 

Diana, our chairperson is recovering very well from surgery and will be with you for the next Network News. 

Maureen

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Greg's story, an update

We published Greg's story some time ago. It has been a popular post and has now been updated with the latest news and a new photograph of Greg on his farm. This picture shows the side of his face on which the jaw was replaced.

Adenoid cystic carcinoma is a rarer form of head and neck cancer. Therefore, I hope people out there, searching for someone who has experienced the same thing,  will be interested to to read this account. It was written by Greg's wife, Kathryn. It 's a heartrending story, because Greg and Kathryn had recently lost their daughter to cancer. How does a family cope? 

The Story

It’s hard to remember when Greg first started complaining about tooth ache.  I think it was before we lost our beloved Caitlin to a rare cancer at age 21 in February 2014.  During her illness she had always been our main focus and priority, so Greg put his troublesome tooth and associated aches and pains on the back burner.

After Caitlin had passed we were barely surviving, just existing in a black hole of devastation and grief.  However somewhere during this dark time Greg attended several investigatory appointments, and eventually a time was made to have the tooth removed.  We assumed that that would be the end of his on-going discomfort.  

But the pain continued.  He says it was always there, though some days worse than others but that he became accustomed to living with it.  Perhaps the physical and emotional pain all blurred into one.

Eventually, he returned to the dental practice for further investigation.  The dentist decided that the pain must have been coming from a nerve that was destroyed at the time of the extraction of the tooth.  A one in a million kind of an occurrence that there was no treatment for and basically he was to put up with it and expect that it should resolve over time.

Being a typical kiwi guy, he took that as gospel and continued to live with on-going pain and discomfort in his mouth.  As well as this, he was also experiencing an intermittent ear pain.  It was a short sharp stabbing pain in his left ear that would always catch him off guard.  We could be having a conversation or he might be immersed in a task when suddenly he would grab at his ear and wince in pain.  He would say it felt like someone was poking a hot needle into his ear drum.   This would only happen occasionally and of course he could never predict when.  So again it was dismissed as something random and unknown.  We briefly discussed seeing the G.P about it but both agreed that it would be difficult, if not impossible, to diagnose something that was only occurring occasionally and randomly.  We did not ever put the two things together.

Eventually, he went back to the dentist regarding the pain.   We were unsure what to do or who to see next, but it had been suggested to him that he could get a referral to the hospital for more investigations.  It was a relief when finally a time was confirmed for a biopsy to be performed under GA.

Some days later he was called back to the hospital to receive the results.  It was suggested to him that he bring along a support person but he headed off alone having been unable to get hold of me.  I don’t recall being worried about the results; it never occurred to me that there was going to be something sinister to deal with.

He phoned me afterwards and I knew immediately from his voice that it was not good news. He wouldn’t tell me anything over the phone so I left work immediately and with my heart pounding furiously, I raced home.   I endeavoured to prepare myself for bad news but the devastation of another cancer diagnosis, completely overwhelmed me.   He couldn’t remember the type of cancer, only that it was rare.  All details had gone completely over his head.  I cannot describe the shock.  I could not believe that we had been dealt the C card again.  I wondered whether we’d have it in us to get on the cancer treadmill all over again.  

Now in hindsight, it was glaring obvious that something wasn’t right, but he didn’t see it and I didn’t see it.  The tumour might have been there for up to four years the hospital dentist said. The red flag had been billowing for all that time but we failed to notice.

And so just like that once again we were aboard the cancer train, still fragile and shell-shocked after our recent heart-breaking experience with Caitlin.

First, a CT was ordered to see if it was anywhere else.  And then down to Auckland City for a MDM to plan how to go forward.  We were beyond stressed as we had been told by the ENT team that if the cancer had moved upwards to his brain or was anywhere else surgery wouldn’t be offered.

On the day, we met with the Head Fellow who was in one of the two Head and Neck cancer teams in ENT.  We both warmed to him immediately.  He was sincere, approachable and reassuring.   We felt that he had the time to spend with us and answer questions and that nothing was too much trouble.  We knew by now that Greg had some lesions on his lungs so this was discussed during our consultation.  We were informed that a percentage of the population are obliviously walking around with lung lesions that are completely unrelated to cancer.  Of course, we hoped this was the case for Greg.  The lesions were not going to alter the game plan, so surgery was booked for the following month. Mandibulectomy, neck dissection and fibula free flap.

The day of the operation seemed to drag on and on.  I had waited for the call for many hours before it finally came late in the evening.   I needed a few good deep breaths before heading over to the hospital to see him.  I didn’t know what to expect, I didn’t know how disfigured he would be.  I wondered if I had made the right decision asking the kids not to visit for a few days, I thought it would be best to shield them from whatever it was that I was about to see. Though the ICU is intimidating and I was scared, of course it was so good to see him. He was alive and breathing and the relief swept over me as I stood quietly alongside him.  I could not escape however the overwhelming sense of sadness that we were back where we had been just a few short years before. And in the chaos of that austere clinical environment, I gripped his hand and grieved all over again for my precious daughter.

It was late when I left and went out into the cold winter’s night of a city that wasn’t my own.  I struggle to recall a time that I have ever felt more alone. Throughout Caitlin’s illness, Greg and I were always together, always a united front.  We always faced the appointments and the crises as a couple.  So I felt completely lost stepping out into the darkness without him, and I was worried about what lay ahead.

Greg was looked after well in ward 74 but recovery from the surgery was tough and there were some very dark times. Every morning he would tell me he hadn’t slept overnight.  He found his bed extremely uncomfortable and just dozed erratically.  Though too late to be of much use, it was replaced with a brand new one on the day before discharge.  The pureed food he was delivered we struggled to identify and it did nothing for his diminished appetite. Fortunately, our lovely daughter visited every day tempting him with appetising little morsels like mashed avocado and eggs scrambled with cream which was much more palatable and nutritious.

He couldn’t talk with his trachy, and sometimes he felt like he couldn’t breathe.  Even though I was with him for much of the day, I think the nights were a lonely and bewildering time for him.  There were occasions where his bell went unanswered and he thought he was going to die alone in his hospital bed. There were moments in the early days when for the first time in his life, he felt alone and frightened.

The discharge date was awaited like a beacon of light in the darkness.  Finally after two weeks and all the necessary check boxes ticked, we set off at a steady hobble, crutches in situ and a carton load of Fortisip under my arm to Domain Lodge.  We were both anxious to get home to Northland the next day; we had missed the farm and our own quiet sanctuary.

The weeks went by with Greg’s jaw healing well, though the wound on his leg took much longer to repair.  The district nurses came regularly to tend to it which we were hugely grateful for.  Gradually he was able to extend his food repertoire beyond weetbix and scrambled eggs, though as he was now minus most of his teeth on one side, he avoided anything that required much chewing.

Radiation therapy (RT) commenced in October and once again we juggled schedules and moved our lives to Auckland for six weeks.  Some weeks due to work and farm commitments I would stay home and he would live in Domain Lodge on his own. Not one to sit idle, he kept occupied and busy by doing handy man jobs for his nieces on the North Shore during the week days, and looked forward to getting his Friday treatment done and being back home in Whangarei by lunch time.  

Fatigue started catching up with him towards the end of his treatment.  However almost from day one he really struggled to cope with the smell of food, especially food that was cooking.  This prevented him from going near the kitchen at Domain Lodge and sometimes even the hallway was a challenge. Unfortunately that made it hard to interact or be social with the other Northlanders who were staying there.

Somewhere over this time he lost his sense of taste, and that combined with his extreme sensitivity to smell meant that it became a real challenge to tempt him to eat.  Consequently, the weight began to fall off him.

It was a great day when his RT was completed; he felt it would have been a real struggle to do another week.   Our joy at arriving home was somewhat marred by NDHB mail advising of a CT lung scan for the following week.  The timing was unfortunate as Greg was by now completely exhausted on all levels.   I think neither of us were ready to face any more appointments for a while.  However he presented to Whangarei Hospital Imaging department on the following Monday and then we prepared ourselves for the hard part, waiting for the inevitable results.  On Friday, I received a ‘manage my health’ alert email.  Upon investigation I was stunned to see it was the result of Greg’s recent CT scan.  It was a shock as I assumed we would be called in to discuss the result with either the G.P or his Radiation Oncologist.  I endeavoured to wade through the ominous medical terminology but there could be no mistaking the words that said that the lung lesions had grown.  This was devastating news.  I felt sick and couldn’t bear to tell him, even though it was his result and he had a right to know.  I couldn’t say the words.  It was a heavy and dark secret that I carried all weekend.

The next Monday we attended a follow up radiation appointment in Auckland to check on his progress post treatment.  It should have been a standard consultation but at the end I mentioned about the CT scan and the result we were awaiting. I didn’t disclose that I had seen it.   In fairness I could see that I had caught the doctor on the hop.   He read his screen while we watched on and then excused himself and returned with the consultant, Andrew McCann.  Things suddenly became serious as I suspected.  The consultant told us the lung lesions had grown.   Greg had no idea and was ashen.  He went on to say that people can live with lesions such as these for two years.  This was a further shock as prior to surgery we had been advised that if these lesions were secondaries they may cause no trouble for ten years or more.  In a heartbeat Greg had just lost a decade.

It was a harrowing week.  It’s hard to think or function normally when suddenly your hopes are shattered and life becomes measured in months. We couldn’t find the words to tell our kids.  We just existed, with the shock blurring all our senses.  One thing we pinned our hopes on was the fact that at the time of the consultation, only the report was available, not the actual images.  So I hoped that perhaps the reporting might be reviewed in his favour.  We were assured that his images would be taken to their next team MDM.   The following Friday,  Greg was phoned by the Radiation Oncologist  to say that after further review and discussion it was agreed that the lung lesions had in fact changed little, if at all.   After the week from hell, that was heaven sent news.

So that was the lungs sorted for a while; next to tick off was an appointment for a head scan.  Mid-January was the date given at the earlier appointment with Andrew McCann.  It came and went.  So did February.  I was worried about Greg falling through the cracks as we hear sometimes happens.  I found it really hard not having a ‘go to’ person like we did with Caitlin during her illness.  Her medical oncologist was always available by email and it made communication so much easier.  This time I had no idea where to turn for support or advice.  It felt like we were between hospitals and didn’t really ‘belong’ to anyone.  Eventually, I connected with the ENT nurse at Whangarei Hospital.  She was able to tell me that a lung scan for June had been requested but there was nothing else.  I tried to phone Auckland Hospital but was passed on from person to person and got nowhere.  

So we waited for our ENT review booked for the end of February with the ENT consultant and hoped that the time delay would not be detrimental.

As it turns out the next scan is not scheduled until June.  In this situation it feels like a very long time to wait.  It is hard to not know. What we do know is that not all the cancer was able to be removed during surgery; we also know that ACC does not respond to chemo.  Therefore Greg’s future depends on the success of the RT.   It feels like we are in a kind of limbo, always waiting and wondering.  Do we try and move on?  Do we dare to plan things, or would that be tempting fate?

And that is where we are to date.  It’s not over; there is still much ground to cover.  But we are wiser and I think more educated now.  We are getting, I hope, more skilled at navigating our way through the health system.  With each other we have had the hard conversations, but remain always positive and hopeful.

Prior to Greg’s diagnosis head and neck cancers, especially Adenoid Cystic Carcinoma, was a mystery.  I had only known one person, a friend and a colleague, that had a Head and Neck cancer.  His diagnosis was a complete shock and it seems unbelievable that Greg’s followed closely behind.

I would like to acknowledge everyone that has supported us to date; the Whangarei ENT team, the Auckland Hospital ENT surgical team; Ward 74, and of course the wonderful ‘family’ that is the Head and Neckers support network.

Footnote:

It has been a year this month since Greg’s surgery. He had a total of 8 months off work but he’s now back doing full shifts at Fonterra.  Usually 12 hour days, (or nights). He gets tired but sleeps well when he goes to bed.  

He has gained about 5 kilos of the 14 that he lost and is beginning to enjoy food again. There is really nothing that he can’t eat now and sometimes certain foods even taste as they did prior to surgery which is always cause for great excitement. His mouth is good and he has had no issues with bleeding or pain. He attends frequent dental appointments at Whangarei Hospital and has no problems with his teeth currently.

The swelling on the side of his face eventually settled and is now barely visible.  In fact if you didn’t know him you probably wouldn’t notice.

His leg healed eventually and now, apart from the occasional sensitivity, causes him no problem at all.

It took him no time to be back in his gumboots (one boot for the first month or so) and hobbling around the farm. Two months post radiation we were hay making on our property.  It was agreed he could drive the truck to collect the bales, but every time my back was turned he’d be on the ground throwing them onto the deck with the other blokes.  Every day rain or shine he is outside doing something. If anyone needs assistance with anything, he is the first to put his hand up.

The results of his scan from last month showed that the lesions in his lungs remain unchanged and there was nothing of note to report from the images of his head.

We have a leave pass for six months which we are so thankful for, and then it must be done all over again.  The time leading up to these scans is incredibly stressful and worrying, but we are thankful that he is being monitored.

So things are okay.  We’ve been to the dark side, but now we are back.  Goal posts have moved and we are looking at life with fresh eyes and learning to appreciate what’s important.









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Pet therapy: Friendly Friday

People talk about rescue dogs and SPCA kitties but you can turn this concept on its head. Dogs and cats can rescue us when we are at a low point after treatment. 

I asked our Facebook group to share their pet pics to see how true this theory is. There were so many responses that I can eke out two Friendly Fridays from them. 

First up is Diana's sock-stealing cat Gina. Gina's a rescue cat but seems to have brought a lot of mirthful embarrassment to the household due to her kleptomania. 

Julie's Bruno was bought as a post-treatment pick me up for Julie but now cheers everyone up. Seen here on Julie's 92 year old mother's bed. 

Then there's Susan's recent present, an adorable border collie pup called Fizz. 

Tammy and Kris have Bella who seems to have pride of place and is a constant companion. 

And finally, Dynelle's little wagon-riding dog. Loves being pulled around on wheels, an endearing quality. 

More rescue pets for humans next week. And I promise, more cats. 

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Next Auckland Meeting

Thursday, 7 September, 9.30 - 11.30 at Domain Lodge

On the agenda

  • Update on dental issues and recommended dentists
  • The Swallows book full of patient stories including three of ours
  • Our speaker of the day is Mary Panko of Unitec and the End of Life organisation. Mary will speak about advanced care directives, living wills, and how much legal control we can have in terms of achieving a dignified end of life. She will probably speak first. 

I hope this is not a depressing topic for our audience. At my time of life, and with my husband's death last year, I have been thinking about this issue a lot. I have a few notes scribbled down in a folder for my children but really need to get it formalised.

I think I'll keep going for a good while longer yet. I'm feeling inspired by life, but having that part of existence sorted would be a comfort. I'm looking forward to what Mary has to say. 

Speakers for the rest of the year

October: Dr David Vokes. Dr Vokes is a dual specialist in laryngology and head and neck surgery at Auckland City Hospital.

November: Dr David Grayson. Dr Grayson is the clinical director of ENT and Clinical Lead, Patient Safety & Experience at Waitemata DHB. 

(November's meeting will include a short special general meeting as we have to make at least one change to our constitution or "rules" so that it is easier to apply for government grants. We will post more information about this soon.)

December: December's meeting will be social only. Last year we met at the cafe near the Wintergardens in the Domain. Let's hope the weather is fine enough for that again this year. 

Maureen

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The costs of cancer drug research and consequent cost of treatment is fairly obvious and of course there are opportunities for someone to profit from the industry.  Looking at it all from an investor point of view rather than a medical one can provide a whole new (though not necessarily comforting) perspective.

Meanwhile:

#Out of the millions of ways you can die, you've avoided all of them. Look at you go.

#Do my dogs understand my vision limitations at night, or do they think I just enjoy kicking them when I walk to the bathroom in the middle of the night?

#With millions of people world-wide installing cameras in their homes, it is only a matter of time before the mystery of spontaneous human combustion will be solved.

Promise in New Cancer Treatments, for Patients and Investors

Morningstar’s equity analysts find the U.S. market overall somewhat overvalued, but there are pockets of opportunity for long-term investors. Pharmaceuticals are one of those areas, and some key players in the sector are fortifying their moats with emerging immuno-oncology drugs, as discussed in a recent white paper from Morningstar

Co-author Damien Conover, director of pharmaceutical research answers some questions:  

What prompted your recent report on immuno-oncology drugs?

Conover: There are two factors driving our research on immuno-oncology. The ability to innovate new drugs to offset products losing patent protection is really a core element to the wide economic moats for large-cap pharmaceutical and biotechnology firms. When we think about the next generation of products, immuno-oncology drugs are very transformative, with a lot of pricing power, and will likely result in a lot of cash flow for these pharmaceutical firms, helping them to offset some of the patent losses.

What advantages do these drugs have over older-generation chemotherapy treatments?

Conover: Chemotherapy is the core bedrock for most cancers, but it is a blunt instrument. It kills the cancer, but it kills a lot of other living parts of the body around it, and it can have a lot of side effects. And it typically doesn’t have a very good long-term survival rate.

The new oncology drugs try to be more precise with the drug treatment, and they allow the body to work like it’s supposed to.

Pricing power is key to pharmaceutical moats, and the possibility of legislative price limits poses a threat, as do secular trends such as supply chain consolidation. Are immuno-oncology drugs better able to withstand such threats?

Conover: Because of the innovation that they offer and the complexity of the treatment—meaning it’s hard to substitute some products based on how these labels are being developed for each drug individually—it’s very unlikely you’re going to see a massive amount of pricing pressure for immuno-oncology drugs.

There’s more pricing pressure for drugs in areas where there’s less innovation. Any generic drug that hasn’t felt pricing pressure yet will likely feel it. But in the innovative drug space, where there is less interchangeability, that’s where pricing power is probably going to hold up

I understand that these drugs are narrowly targeted, so that a drug for lung cancer would not necessarily be applied to head and neck.

Conover: Cancer used to be just cancer, and one chemotherapy would likely work for all, or at least partially work for a lot of cancer. What we’ve subsequently found is cancer can be broken down by parts of the body and then can be further broken down by biomarkers. Typically speaking, when these drugs work for a type of cancer with a certain type of biomarker, that can sometimes translate into a benefit for other cancers with a similar biomarker. However, that’s not always the case. There is some variability of response rate across the different types of cancer, and certain cancers can be very different.

Full story:
http://news.morningstar.com/articlenet/article.aspx?id=822526

Study boosts hope of ‘liquid biopsies’ for cancer screening(Philadelphia)

Scientists have the first major evidence that blood tests called liquid biopsies hold promise for screening people for cancer. Hong Kong doctors tried it for a type of head and neck cancer, and boosted early detection and one measure of survival.

The tests detect DNA that tumors shed into the blood. Some are used now to monitor cancer patients, and many companies are trying to develop versions of these for screening, as possible alternatives to mammograms, colonoscopies and other such tests. The new study shows this approach can work, at least for this one form of cancer and in a country where it’s common.

“This work is very exciting on the larger scale” because it gives a blueprint for how to make tests for other tumor types such as lung or breast, said Dr. Dennis Lo of Chinese University of Hong Kong. “We are brick by brick putting that technology into place.”

Lo is best known for discovering that fetal DNA can be found in a mom’s blood, which launched a new era of non-invasive testing for pregnant women.

The study involved nasopharyngeal cancer, which forms at the top of the throat behind the nose. It’s a good test case for DNA screening because it’s an aggressive cancer where early detection matters a lot, and screening could be tried in a population where the cancer is most common — middle-aged Chinese men.

The researchers estimate 593 people would need to be screened at a total cost of $28,600 to identify one cancer case. It may be worth it in Hong Kong, but maybe not in places like the U.S. where the disease is rare, and more people would have to be screened at a greater cost to find each case, said Dr. Richard Ambinder of Johns Hopkins School of Medicine, who wrote a commentary in the journal. Still, “this is showing that liquid biopsies have great promise,” he said. “This is an advance that will indeed save lives.”

Full story:
http://wlns.com/2017/08/10/study-boosts-hope-of-liquid-biopsies-for-cancer-screening/

 Cancer-survivor QB Jim Kelly spreads message of hope

GREENSBORO — Jim Kelly wears a blue rubber wrist band on his left forearm.

Ask him about it, and the gregarious Hall of Fame quarterback from the Buffalo Bills will tell you there’s a whole lot more to life than football.

Kelly came to Greensboro to play in the Wyndham Championship Pro-Am and he came to spread a message of hope.

Kelly is 57 years old now. That, in itself, is something of a miracle. He was diagnosed with cancer in his head and neck – squamous cell carcinoma – in 2013, and portion of his upper jaw was removed. Nine months later, tests show cancer in his sinuses. He lost 70 pounds during radiation and chemotherapy treatments.

Doctors gave him a 10 percent chance of survival. But by August 2014, he was cancer-free and recovering.

“I feel pretty good,” Kelly said. “Look, we all have our problems. Everybody has issues they have to deal with. You move on. I’m fine, and I’m here today. That’s all that counts.”

Kelly has gained back some of the weight he lost. His voice is still his own, although the surgeries and treatments have left him with a lisp. He’s lost the sense of taste, and cannot open his mouth wide enough to eat a sandwich.Yet through it all, Kelly remains unfailingly positive.

Full story:
http://www.greensboro.com/sports/golf/wyndham/cancer-survivor-qb-jim-kelly-spreads-message-of-hope-at/article_b5707d7e-82c7-11e7-bde7-c3366ef0d459.html

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After the worrying news that the `wonder drug’ Keytruda may not be living up to its reputation  it’s always good to remember there are many new attack fronts opening up and new treatments being trialled in the cancer war.  A couple of those new and promising developments are detailed below.

Meanwhile;

Scientists find new method to target hard-to-treat head and neck cancers

(U.K.) Researchers at The Institute of Cancer Research, London, and The Royal Marsden NHS Foundation Trust used MRI scans to detect the size and distribution of areas varying in oxygen content, called cycling hypoxia, within head and neck tumours.

They suggest that the amount of variability may be linked to survival and these areas could be targeted by new personalised cancer treatments, such as image-guided radiotherapy where doses can be focused on small areas.

Professor Martin Leach, one of the lead researchers, based at the Cancer Research UK Cancer Imaging Centre at the ICR said: “The unique environment within a tumour is far more complex and changeable than we thought only a few years ago.”

“This is the first time anyone has clinically examined the effectiveness of dynamic Intrinsic Susceptibility (IS) MRI to monitor cyclical changes in tumour oxygenation. The technique has enabled us to learn more about how levels of oxygen vary in tumour cells over time and how this might impact patient outcome.

“If our findings are confirmed in larger studies, then this scan could one day be available at all hospitals with an MRI scanner.”

Anna Perman, Cancer Research UK’s senior science information manager, said: “Patients with head and neck cancers are more likely to have their disease return, because cells with low amounts of oxygen are harder to reach with conventional treatments including radiotherapy and chemotherapy.”

“Being able to image oxygen levels in this level of detail could help develop targeted treatments and improve the chances for patients of surviving their disease.”

Full story:
http://www.icr.ac.uk/news-archive/scientists-find-new-method-to-target-hard-to-treat-head-and-neck-cancers

New cancer drug reduces tumor size by 'up to 50 percent'

(U.K.) New research from the University of Southampton in the United Kingdom investigates the way in which cancer takes over certain cell types and uses them as a life support. Finding a way to target these turncoat cells could help to reduce a tumor's success.

One of the many reasons that cancer is so difficult to treat is its ability to hijack normal cellular components and switch them from useful to deadly. Cancer can therefore turn vital, natural cell types against the body.

As Dr. Aine McCarthy, Cancer Research UK's senior science information officer, says, "Some cancers are incredibly difficult to treat and can use the body's own cells to help them grow, evade treatment, and spread around the body. Researchers have been trying to unlock the secrets behind this for many years."

The findings of the most recent study in this field, carried out by researchers at the University of Southampton, are published this week in the Journal of the National Cancer Institute.

An example of the repurposing of the body's biological mechanisms involves fibroblasts. Normally, these cells make a range of products, such as collagen and elastic fibers, helping to fix organs and cells together. However, cancer can utilize these cells for its own purpose, turning them into cancer-associated fibroblasts (CAFs).

CAFs support a tumor as it grows and can help it spread. Earlier studies carried out at the University of Southampton have demonstrated that increased CAF levels are associated with poorer survival rates in a number of cancers, including bowel and head and neck cancers.

Recently, Prof. Gareth Thomas, who is chair of experimental pathology at the University of Southampton and his team embarked on a new project looking at the potential of a specific enzyme, called NOX4, to interrupt CAFs. This enzyme is essential for the conversion of fibroblasts into CAFs.

The team demonstrated that by blocking NOX4, the size of tumors in mice was reduced by up to 50 percent.

The drug that blocks NOX4 is currently being developed to treat organ fibrosis, which is a condition characterized by the formation of excessive fibrous connective tissue. If follow-up studies go well, it might be a useful medication to be taken alongside existing cancer treatments.

Full story:
http://www.medicalnewstoday.com/articles/318812.php

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