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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;
See attached flyer for further details. Invitation Tracheostomy Patient and Family On Line Forum.pdf
Please forward this invitation to others.
Click this version to print.
This week they have released their updated New Zealand Cancer Action Plan, David saying it better reflects the voices of people whose lives are ...
The detection of circulating tumor DNA (ctDNA) in human papillomavirus (HPV) with an experimental blood test has been associated with high positive ...
Business Wire (press release)WALTHAM, Mass.--(BUSINESS WIRE)--A novel blood test can detect recurrent Human Papilloma Virus (HPV)-related head and neck (oropharyngeal) ...
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 ...
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.
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.
Pharmac Funded Breast Cancer Drug Ibrance
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.
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.
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.
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...
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...
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...
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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