Curing Cancer With Immunotherapy - Immunotherapy Clinical Trials READ-ONLY due to excessive spam

Synovial Sarcoma with no HLA A2-6+

Lorenzo77 — Mon, 14 May 2018 15:06:37 +0000

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Dear Rene and Eddie,
I read your book and it was an inspiring and full of amazing information. I was surprised to realize how my story is similar to Rene's as I was diagnosted with SS at the base of the tongue (head & neck), same size.
Unfortunatly, after three years of surgery, radio, ifosfamide, doxo, trabectedin and pazopanib, I now have several mets at the pleura, lung, mediastin.
I tried to pursuee immunotherapy but in Italy was basically impossible for sarcoma. I went a couple of times to MSK in NYC and i have been tested for HLA but i m not positive, so i am out most of the trials for NY-ESO-1.
Do you know any trial for NY-ESO-1 which does not require HLA 2-6+? the only one I know is the CMB305 but it is not recruiting yet as far as i understand and I am running out of time.
What would you do in my situation? I m quite disperate to find a trial for my SS.
Thanks in advance for your reply.
Lorenzo

Clinical Trials - Patient with Metastatic Undifferentiated Pleomorphic Sarcoma in Canada

Jamie — Mon, 29 Jan 2018 00:24:41 +0000

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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.
Sincerely,
Jamie

CMB305

Dadoona — Tue, 17 Oct 2017 02:08:12 +0000

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Hi Edward and Rene
Just wondering what your thoughts are on the CMB305 clinical trials at MD Anderson for synovial sarcoma? Is it something you would consider in the future should you have further disease progression?
Also did your tumour have NY-ESO? Bisaphic or Monosaphic? and was your fusion type SSX1 or SSX2? ours is Bisaphic SSX1 which i believe is less favourable.
Many thanks again for your time!

Where can we get slides tested for NY-ESO1 expression?

Rene and Edward Chee — Thu, 30 Mar 2017 01:10:48 +0000

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Hi Rene,
My husband was diagnosed with Myxofibrosarcoma six months ago and is current under chemotherapy (Doxo/Ifosfamide/Mesna). Although the tumor has not increased in size but the chemo has failed to shrunk it. We are looking into what options are out there and I found that there was a report that 30% of patients with this type of cancer has expression for NY-ESO1. The pathology dept at MSKCC do not do this type of staining and sends them out to NIH. I was wondering if there is a way to get the tumor slides tested for NY-ESO1 expression.
The doctor here is pretty negative about the T cells adoptive transfer therapy, and says my husband cannot enter clinical trial for this type therapy because its only for synovial and other types not myxofibrosarcoma. I think its worth to know if it has NY-ESO1 expression so that it can open another option in the future. Do you know anyone or any companies that can help us. Any advise will be greatly appreciated.

single patient protocol for NY-ESO-1 vaccine

Jay — Fri, 28 Oct 2016 19:51:20 +0000

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Hi Rene and Eddy,

I feel so lucky to find your book and I have bought and studied the book. It's extremely helpful and valuable.

I was diagnosed with Myxoid round-cell liposarcoma (high grade round cell > 25% - it has NY-ESO-1 expression) a few months ago and did a surgery to removed the tumor
( I found your book after surgery). My oncologist suggested to do chemo after the surgery.I did some research that the chemo can improve 5-yr survival rate, but can not change the chance of metastasis, in my case it's 40-70% of chance it will metastasis. After reading your book, I decided to not to do chemo but try to pursue the immunotherapy solution. But in the past few weeks I feel helpless on how to make immunotherapy a reality for me - that's why i come here for help from you guys.

I am not qualified for all the immunotherapy clinical trial since I have no tumor now (CT scan show 2 small nodules in my right lung which is 8mm and 2mm - it's has not been diagnosed yet, not sure what they are). As you mentioned in the book, now it's the time to aggressively pursue immunotherapy to
kill the microscopic cells before it become visible in CT scan. From the book I learned the "single patient protocol" to get the NY-ESO-1 vaccine, I want to follow the process (I am studying the FDA doc for the paperwork process). Unlike Rene, I do not have Dr. Lloyd Old to help me. My oncologist do not know immunotherapy. could you give me some advice how I can proceed to get the NY-ESO-1 vaccine ingestion? I researched there are NY-ESO-1 vaccine drugs from some bio-companys in clinical trial, but I am not qualified, any advice on how I can get the NY-ESO-vaccine is appreciated.

Beyond NY-ESO-1 vaccine, do you think I should try Coley's Toxin as well for my situation?

Thanks,
Jay

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Synovial Sarcoma with no HLA A2-6+

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Clinical Trials - Patient with Metastatic Undifferentiated Pleomorphic Sarcoma in Canada

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Where can we get slides tested for NY-ESO1 expression?

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single patient protocol for NY-ESO-1 vaccine

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