Hi Rene and Edward,
I have read your book in its entirety and it greatly assisted me in learning about potential treatment options, being your own advocate when dealing with the medical profession and much, much more. I felt it so beneficial that I ordered a second copy for my parents to read. So thank you!
My father was diagnosed with Metastatic Undifferentiated Pleomorphic Sarcoma in mid December 2017. 70 year old male in otherwise healthy physical condition, no pre-existing conditions, no history of previous disease, etc. The primary site is his knee and has progressed to his lungs (around 30 mets).
He received 10 days of radiation to the knee, ending January 3rd. The primary tumor had shrinkage in the initial week of radiation of around 1 cm. (Now approximately 14 cm across.) No treatment was done on the lungs as the number of mets and spread meant any type of resection, lobectomy or radiation, etc were not options. There was no abscopal effect from the radiation seen within the lungs, as confirmed by a recent repeatChest CT showing growth in size and increase in number of lung mets.
We finally had our appointment with the medical oncologist on Friday, who provided him with two potential treatment options:
1) Doxorubicin + Olaratumab
2) Clinical trial of Durvalumab and Tremelimumab (NCT02879162)
The doctor essentially said that any treatment option or clinical trial is a roll of the dice with this cancer. In terms of progression free survival, no treatment option has shown a significant improvement/results.
I had done much reading prior to the appointment and had not heard of Durvalumab and Tremelimumab in my travels. The doctor said that Durvalumab "was similar to Pembrolizumab in that it was a PD-1 inhibitor" and Tremelimumab "was similar to Ipilimumab as it was a CTL-4 inhibitor". This trial is a Phase II study of patients with advanced rare tumours, not specifically targeting sarcomas, and the combination of drugs had been tried on only 250 people.
1. Have you heard of these drugs before and is "similar" just as effective as the big names that I have heard about (vs. Pembro and the Ipilimumab, among others.)? I am wondering if we should be seeking other clinical trials, even if that means travel to the USA. (We are based in Edmonton, Alberta, Canada.) Perhaps there are trials of drugs that are more widely recognized that may prove beneficial?
2. What are your thoughts on treatment options? Have you heard of anything else that may be worth us looking into?
3. I have tried looking into cryoablation, but have not received a call back from Dr. Littrups office and have had little luck reaching someone in Canada that provides this treatment. (I tried seeking out Dr. David Liu, but had no luck in reaching anyone that knew of him or cryoablation.) Do you have contact numbers for either of these doctors and/or could you suggest another doctor in Canada that provides this treatment? Also, do you know if 30 mets is an untreatable amount? (I don't believe John German doctor that lasered away his 130 mets is an option in our case.)
4. Your omega 3/6 diet is something I should look further into. Are there any specific, reliable websites that you could send me to for recipes, supplements recommended, etc.?
Thank you so much for your time! Your contribution is truly appreciated.