Our greatest gift for Deborah, is to give her more time... and to overcome this rare type of cancer and achieve remission.
Nationwide
Late 2017 Deb was devastatingly misdiagnosed and was left untreated for cancer for many months. During this time, she endured unnecessary pain, discomfort and hardship.
Specialists eventually diagnosed her with a very rare cancer called Endometrial Stromal Sarcoma (ESS). Her cancer is high grade, stage IV and has metastasised to her lungs, it had likely developed a year earlier in 2016. The annual incidence of ESS is 1–2 per million women.
She was treated with palliative chemotherapy and radiation and has been hospitalised on numerous occasions due to symptoms and infections from these treatments. She is unable to return to work due to her reoccurring and ongoing illness.
UPDATE
The Immunotherapy treatment Pazopanib has run it’s course and no longer working. Latruvo is also not an option due to its very disappointing results in its third trial.
A mutant gene was discovered after Deb paid for a genome test to be carried out in the hope that she would be eligible to participate in a trial. The trial wasn’t an option for Deb in the end, however, it did reveal a “Basal Cell Carcinoma” mutation. So, with the possibility of this mutant gene driving her ESS, she was prescribed itraconazole, interestingly, an anti-fungal tablet which has been shown to inhibit the same part of the metabolic hedgehog pathway that vismodegib (expensive immunotherapy drug) does. There is evidence that this treatment works in patients with basal cell carcinomas. UPDATE … After a month of no change on the itraconazole and her tumors actually increasing in size and severely restricting her ability to breath, the oncology team decided she needed emergency radiation to shrink the tumors in her lungs and to stop the bleeding in her uterus. She was given 6 fractions of radiaion over a week in Christchurch. She has been more than 3 weeks recovering from the radiation and infections and was too sick to be allowed to go home. She was transferred back to Timaru hospital after a another week to be closer to home. They eventually agreed she could be released. I’m pleased to report she seems to have finally turned a corner and is feeling a lot stronger.
NEW
With the idea coming from the oncologists suggesting of using off label drugs such as the intraconazole to fight cancer, along with a lot of research, Deb is now being guided by Jane McCleland’s book “How to Starve Cancer”. Deb will be following Jane’s theory of inhibiting metabolic pathways used by cancer.
There are around 200 off label drugs that are generally easy to access and are prescribed for other medical issues. The aim of using off label re-purposed drugs is to inhibit the metabolic pathways that allow cancer stem cells to proliferate. The main fuel sources of most cancers are glucose, glutamine, fatty acids, ketones, saturated fat. If one source is inhibited the cancer can usually change to another source. Hence, by cutting all fuel sources to the cancer, will effectively starve the cancer.
Fortunately this approach will not be as expensive as immunotherapy treatments, however, the required supplements and drugs are at a reasonably high cost to Deb. We have decided her Givealittle page will remain open to allow donations to assist funding of her above..
Deb is very much loved by her family and friends. She is a shining light with a brave and fighting spirit. Our greatest wish is for her to overcome this cancer and achieve remission.
Debbie is Karen's and my sister who has been diagnosed with a rare type of Cancer. Her family and friends are all working towards helping Debbie raise the funds she needs to get unsubsidized health care.
To fund the non-funded drug called Pazopanib (funded in NZ for kidney patients only), currently costing approx $5000 per month. We need approx $200,000 to fund the ongoing cost of Pazopanib, the future need for Latruvo (Olaratumab), and possible surgery
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