Head and Neck Network's Posts (319)

Tracheostomy Webinar 11 August 2020

Kia ora,

Melbourne may be in locked down but the desire to help head and neckers remains strong. 

 

Tracheostomy Patients, families, carers and clinicians please plan to attend 

Tracheostomy Patient and Family Forum 2020

Hosted by Austin Health, Melbourne in partnership with 

The Global Tracheostomy Collaborative (GTC)

 A Symphony of Stories 

with Inspiring  Guest Speakers;

Benjamin Northey, Chief Conductor in Residence, 

Melbourne Symphony Orchestra 

and Chief Conductor, Christchurch Symphony Orchestra NA                

Tracheostomy Patients and Family Presentations; 

Daisy Xu, Sally and Jen Messer, Larry and Michelle Green 

 

Tuesday 11th August 2020 11 AM – 12:15 PM via ZOOM

This is a free on line event but registration is required

Please Register via this link;

https://smex12-5-en-ctp.trendmicro.com:443/wis/clicktime/v1/query?url=https%3a%2f%2fzoom.us%2fwebinar%2fregister%2fWN%5fgGLa53rHTVKazwVIlWCsbQ&umid=b4b13997-6918-4550-ba1e-400297351c10&auth=a274b9305a0a6774f29265a98f8f893dbafe8641-7825264964cba2fb2292513d7c5113bc9b9e2441

 

See attached flyer for further details.  Invitation Tracheostomy Patient and Family On Line Forum.pdf

Please forward this invitation to others.

 

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Improved cancer care for Kiwis

SunLive

This week they have released their updated New Zealand Cancer Action Plan, David saying it better reflects the voices of people whose lives are ...

Surveillance of ctDNA in HPV-Positive Head and Neck Cancers May Predict Recurrence

Targeted Oncology

The detection of circulating tumor DNA (ctDNA) in human papillomavirus (HPV) with an experimental blood test has been associated with high positive ...

Newly established Cancer Control Agency recognises World Cancer Day

"The updated New Zealand Cancer Action Plan 2019-2029, which was published yesterday, clearly outlines what we need to do for the future, ...
 

Blood Test Accurately Identifies HPV-related Head and Neck Cancer Recurrence; Prospective ...

Business Wire (press release)

WALTHAM, Mass.--(BUSINESS WIRE)--A novel blood test can detect recurrent Human Papilloma Virus (HPV)-related head and neck (oropharyngeal) ...
 

Botanical drug is shown to help patients with head and neck cancers

EurekAlert (press release)

People with advanced head and neck cancers have a low survival rate and current treatment options such as surgery, radiation and chemotherapy ...
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The petition was launched in the later part of 2019 by Diana Ayling. The petition acheived over 640 signatures, and was presented to David Seymore, Member of Parliament for Epsom in November 2019. The petition was tabled in Parliament on the same day. The petition was referred to the Health Select Committee. The Committee are seeking a written submission before speaking with Diana Ayling at Parliament.

The Committee is meeting 12 February 2020 and will review the Network's written submission. They will decide whether there is value in speaking with our representatives. 

More news to come....

A Rare Disorder Medicine is Funded by Pharmac

After years of campaigning by Kiwi families affected by cystic fibrosis, Pharmac has finally announced plans to fund "breakthrough" drug Kalydeco. It is the first medication that fixes the underlying cystic fibrosis defect, essentially turning off cystic fibrosis for patients with the G551D mutation. Until now, New Zealand has been the only OECD country to not fund Kalydeco, with many patients considering a shift to Australia to gain access to it. Here's our full story from last night's newscast.

https://www.facebook.com/1NEWSNZ/videos/812336745879673/UzpfSTE0OTQ0NzAzMjQ6Vks6MjU0MjA2NjMzNjA3NTk2MQ/

Anders Jansson-Bush's Story

An Auckland cancer sufferer, who gifted sunflowers from his front lawn to try raise $100,000 in donations to fund the anti-cancer drug Keytruda, has died.

Steve Wilson's Story

A Thames man is sharing his experience with cancer drug Keytruda in the hope it will help his children and other New Zealand families.

Sixty-three-year-old Steve Wilson says his life was saved after he paid $100,000 out of his own pocket to receive Keytruda treatment.

Now he wants it made accessible through funding from Pharmac for a number of other cancers including the one he had.

https://www.newshub.co.nz/home/new-zealand/2020/01/cancer-patient-steve-wilson-shares-experience-with-keytruda-in-hopes-of-saving-others.html?fbclid=IwAR2WpUusbJg7CX0xiSAL8T9DEuljlDsq1iYQMeoSnULID5-K7mwC3spqQHg

Pharmac Funded Breast Cancer Drug Ibrance

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12300325&fbclid=IwAR2saDDPSAVGZuv-wyCjOrkIdgsUtYoims4Ge_yN6hyBnleLAuP5p6dSXzk

US doctor saves life of Kiwi woman with cancer after her call for help on Facebook

An Auckland woman has revealed that the advice she was given from a US doctor in a Facebook group saved her life — after being told she only had months to live.

In 2018, Diana Craig was diagnosed with oropharyngeal (throat) cancer that spread to the lymph nodes in her neck.

After the 52-year-old underwent two radical surgeries, one that was life-changing that left her swallowing and eating compromised, and radiation, doctors told her the cancer had gone.

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12271594

Miracle drug' Keytruda approved for use earlier in melanoma treatment

https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12246879

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Potential for new political party as lobby group pushes to increase Pharmac funding

 

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Patient Voice Aotearoa chairman Malcolm Mulholland said the concept of new political entity campaigning for better drug buying policies is gathering support.

Mr Mulholland, whose wife Wiki has terminal cancer, is calling for the doubling of funding to Pharmac.

He said patients with a raft of health issues, ranging from cancer to mental health, are being forced to "beg for their lives" when it comes to accessing the latest and most suitable drugs.

At a packed meeting attended by patients and more than 30 advocacy organisations, Patient Voice Aotearoa launched a new campaign called All I Want For Christmas Is To Live.

Read more here and ....

here....

 

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Five Steps to a New Normal: Life After Cancer

This article was written by Jenny Leyh, a mother, freelance writer, cancer survivor and integrative health advocate living in Haddon Heights, New Jersey.

Hearing the words “you have cancer” was devastating. It was a life-altering diagnosis that caused time to stand still. But once a plan was established and the treatment began, the fear and unknowns morphed into empowerment. My medical team kept a close eye over everything I did and it was comforting to know that I wasn’t facing this alone.

 

But once active treatment ended and my calendar went from being filled with appointments to a light schedule of check-ins, the anxiety and fear once again emerged. “You’re cancer-free,” said my doctor, and life was supposed to move on. While everyone around me was celebrating, I once again felt alone and afraid of this new unknown.

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EU approval for Keytruda in head and neck cancer

The European Commission has approved MSD’s Keytruda (pembrolizumab) as monotherapy or as part of a combination, for the first-line treatment of patients with metastatic or unresectable recurrent head and neck squamous cell carcinoma (HNSCC).

The regulatory body says that the approval was based on data from the Phase III KEYNOTE-048 trial, in which the drug, compared with standard treatment (cetuximab with carboplatin or cisplatin plus 5-FU), demonstrated a significant improvement in overall survival (OS) as monotherapy and in combination with platinum and 5-fluorouracil (5-FU) chemotherapy. Read more...

Tipifarnib Yields 100% Disease Control in HRAS-Mutant Head and Neck Squamous Cell Carcinoma

The signal transduction inhibitor (STI) tipifarnib induced disease control in all patients with HRAS-mutant head and neck squamous cell carcinoma (HNSCC) and a high variant allele frequency (VAF), according to preliminary results of a phase II trial presented at the 2019 American Association for Cancer Research–National Cancer Institute–European Organization for Research and Treatment of Cancer International Conference on Molecular Targets and Cancer Therapeutics.1

“We have compelling antitumor activity in the heavily pretreated cohort of patients with recurrent metastatic head and neck cancer with HRAS mutations,” Alan L. Ho, MD, PhD, Geoffrey Beene Junior Faculty Chair at Memorial Sloan Kettering Cancer Center in New York, New York, said during a presentation of the data. “This occurred regardless of previous progression on chemotherapy, immunotherapy, and cetuximab.”  Read more...

UAB launching Sullivan Survivor Program for head and neck cancer in 2020

 

Read more here...

 

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The Patient Voice Aotearoa chairperson says better medication funding is desperately needed

Eight petitions with 48 thousand signatures were presented to parliament - pleading for money for drugs and devices.

Malcolm Mulholland says the organisation has now decided to lodge their own petition.

He says they are calling on the Government to immediately double the PHARMAC budget with plans to triple it in the future, as well as reform the agency. Read more....

 

Petitions Presented: A United Stand for Medicines

Today at Parliament at 12.30 pm, eight petitions are being presented for medicines to be funded for a number of diseases to Members of Parliament from ACT, National, Labour and NZ First. Representatives of the political parties will speak, as well as the petitioners.  Read more...

Cancer warning: Radiation from CT scans linked to increased risk of thyroid cancer

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CANCER currently has no cure, but research is looking into what can increase the risk of it developing and how to prevent it. A new study has found exposure to radiation from CT scans is associated with higher risks of developing thyroid cancer and leukaemia. Read more...

 

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Deputy Prime Minister Admits Pharmac Needs More Money

Patient Voice Aotearoa welcomes the comments made by the Deputy Prime Minister Winston Peters on ‘The Project’ on Friday last week. Peters stated “Right now…we know we are not spending nearly enough on pharmaceuticals and first world drugs…the reality is that Pharmac’s budget is not big enough and we have to face that as a country and make some accommodations to give people the treatment and first world drugs that they deserve. We have a $7.5 billion surplus, so let’s take a look at Pharmac’s funding to ensure that people like that get the treatment they need, at the time that they need it.” Read more....

 
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A Human Right To Life

3715202910?profile=RESIZE_710xThe Universal Declaration of Human Rights is a cornerstone of the modern world. The Declaration gives everyone the right to life, freedom, and safety from harm. In New Zealand we value and respect the Declaration. We promote human rights internationally. So, why are we denying New Zealand citizens right to live through life saving medicines? Head and neck cancer patients facing a life threatening illness should have access to Keytruda a potential life saver. We want to see every person every time having access to the same standard of care. 

We believe all citizens of New zealand have the right to life saving medicines. 

We believe Keytruda should be a fully funded treatment option for any New Zealander that needs it. 

Please sign Diana Ayling’s Petition to fund Keytruda. https://www.parliament.nz/en/pb/petitions/document/PET_89949/petition-of-diana-ayling-for-head-and-neck-cancer-support 

 

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Fair Treatment for all

3715190423?profile=RESIZE_710xUnder Right 4 of the New Zealand Patient Code of Rights, you have the right to receive good care and support that meets your needs. That means that all options for treatment should be available to you. This is even more important if you have a life threatening illness. If you have metestatic head and neck cancer and Keytruda is a treatment option it should be provided to you. If not, why not? 

We believe all citizens of New zealand have the right to life saving medicines. 

We believe Keytruda should be a fully funded treatment option for any New Zealander that needs it. 

Please sign Diana Ayling’s Petition to fund Keytruda. https://www.parliament.nz/en/pb/petitions/document/PET_89949/petition-of-diana-ayling-for-head-and-neck-cancer-support 

 

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