Hi Rene and Edward.. I read your book with great interest . Your journey was and is inspiring. My 18 year old daughter was diagnosed with synoval sarcoma (primary in scapular area under the supraspinatus muscle) and bilateral lung metastasis ( largest is 9mm). Her oncologist quickly had her start chemo doxoifos) and she has completed 2 cycles of 5. The team will then decide on radiation before surgery or surgery then radiation. All aspects of your jpourney were very educational. I was especially interested by the omega 3 diet. I have been taking small doses of omega 3 for years but did not realise the ratio of omega 3 to omega 6 was so distorted. We would like to repeat your experience with your omega 3 diet and reduce sugars from her diet. We will discuss this with her oncologist but are worried that she will deny the importance. What are your thoughts on using high doses of omega 3 and reducing omega 6 during her chemo cycles. It seems that Patient DH's experiment with omega 3 would have spurred doctors to try this protocol. We have also been looking at clinical trials. One for the NY-ESO-1 by Adaptimmune, another is IMRT radiation of the lungs at MSK ands a few others. We have also looked at Coley's as a friend of ours is now in remission from his incurable lymphoma after Coley's treatments in the Bahamas (they now are using Site Specific Immunotherapy) Any thoughts would help considering your knowledge and experience with synovial sarcoma.
Thank you
We're so sorry your daughter is fighting synovial sarcoma. One very positive sign is that her oncologist is shrinking the tumors with chemo and perhaps radiation before removing it surgically. I was misdiagnosed, so my tumor was not shrunk with chemo or radiation before surgery, leading to my tumor spilling during surgery and a worse prognosis.
Omega 3 / diet -- The thing to note with fish oil and the ketogenic diet is it can thin the blood (ketogenic diet is stronger as a blood thinner). For myself, before I went for cryoablation, where needles are inserted into my lungs, I stopped both fish oil and the ketogenic diet 2-3 weeks before the procedure for safety precautions. Although, there have been cases where patients on fish oil have gone through surgery safely (see reference in Chp 15).
Also, digestion will most likely be impaired during doxoifos, so the fish oil may be hard to digest. I had this chemo regimen as well, and remember having poor digestion.
What can be done now is to lower the omega 6 fats in the diet and decrease sugars/ carbs (see "Diet" in this website for a table of common foods and their nutritional values to get an idea of the omega 6 content and carb content). When the chemo, radiation and surgery are done, when bleeding is not a risk, then the high omega 3 and ketogenic diet can be added on.
Unfortunately, a single case study (like Patient DH's case study) is usually not brought through clinical trials. And doctors will usually not try something unless it's been proven through a clinical trial. But Patient DH's case convinced us, as he did not have any surgery, chemo or radiation, and there is a clear correlation between increasing the dosage of omega 3 and tumor shrinkage, if you read the paper (http://www.thedcasite.com/Omega3_Fatty_acids/Nutritional_Intervention_Wi...) Note: we changed the patient's name to "Patient DH" in this thread to preserve his anonymity.
NY-ESO-1 TCR (Adaptimmune) -- This is an adoptive T cell procedure, targeting the NY-ESO-1 antigen in the tumor. We prefer doing cryoablation to generate the whole spectrum of tumor antigens, versus adoptive T cell procedures, which only target 1 tumor antigen. Also, side effects may be more with adoptive T cell procedures (Chp 6)
Lung tumors -- We're not fond of IMRT for lung tumors, due to side effects and radiation-resistant cancer cells that could remain and grow. Cryoablation of lung tumors is our preferred way of killing lung tumors and generating an immune effect (see Chp 11). I had 3 lung tumors cryoablated, each about 1cm or less. I walked out of the hospital a few hours after the procedure. Temporary numbness due to surrounding nerves being affected. The sensation gradually comes back. None of my cryoablated lung tumors have grown back.
We hope your daughter does well - do let us know if you have any other questions or thoughts.
Thanks for your perspective. Have you heard of Salvestrols as an alternative treatment. Seems to attack the cancerous cells but not sure if it helps the immune system.
Any thoughts..
We haven't looked into Salvestrols, so can't comment meaningfully on it.
Did you try LDN and Metformin? How much and for how long?
I did try LDN and Metformin at different times. I tried LDN for a very short period of time. I took Metformin (at 500mg daily) longer, but stopped when I started doing the omega 3/6 regimen and ketogenic diet seriously.
Thanks. We will give the Omega3/6 diet a serious look. We have brought her sugar and omega 6 down and will increase omega 3 once her treatments are done. Encouraging results wth chemo as of the 2nd cycle, her lung nodules have been reduced from 15 to 4 and primary is reduced in size by 25%.
Hello Rene. Congratulations on your book and thank you for sharing your story and many helpful
details regarding your Immunotherapy treatments.
On reviewing the literature on the effect of fish oils on the tumor micro environment, and more specifically on the regulatory t-cell population( tregs), the data in very, very inconsistent with
many articles suggesting an increase in tregs with increased omega 3 intake. What sources have you relied upon to conclude that there is in fact a reduction in tumor associated tregs?(no reference is provided in the book).
Also with regard to your use of fish oils prior to your cryoablation. In the book the sense I get is that you were using the oils to promote an increase in the inflammatory reaction from the planned ablation(t killers>tregs) , and stopped one week prior only due to a spontaneous bruise. But your recent comments suggest you were use it as an anti-Inflammatory. If it does work to promote tumor infiltrating Helper or killer lymphocytes and decrease tregs, this would be a local pro-inflammatory effect.
Please comment. Thanks again for your efforts.
JB
Hello JB,
Thank you for your thoughtful comments.
Yes, studies suggest that omega-3s increase Tregs and thereby may even help with autoimmune diseases (by suppressing the immune system).
With regards to the effect on Tregs within the tumor microenvironment specifically, there are fewer studies to rely on.
We did not choose omega-3-6 to promote inflammation within the tumor. In our book, we describe going for omega-3-6 based on Patient DH's success. Secondly, we also describe trying to quell excessive inflammation that may have been inadvertently induced by "too much" Coley's Toxins (that resulted in cachexia-like symptoms etc).
Back to the issue omega-3-6 effect on intratumoral Tregs. While it is true that a survey of the literature may lead one to deduce that omega-3-6 may be counterproductive to immunotherapy, the issue is likely more complex.
Chronic inflammation is thought to be detrimental (perhaps even for immunotherapy). This contrasts with acute inflammation induced by modalities such as cryoablation.
Secondly, many/most of the omega-3 studies are limited in nature. For example, in-vitro cell studies aren't the same as in-vivo. And mouse studies aren't the same as humans.
Thirdly, many, if not all of the actual human studies were severely flawed in that omega-6 dietary intake was not limited. (For example, what is the effect of omega-3 intake on intratumoral Tregs on a body saturated with omega-6, versus one that has balanced omega-3-6??)
We were acutely aware of these limitations leading up to our decision to try omega-3. We deliberately prioritized human studies above all. And, despite the single-case nature, Dr. Pardini's report on Patient DH was key, because he carefully controlled omega-6 intake.
Regarding your question about references for intratumoral Treg reduction by omega-3 ... human (not in-vitro or in-vivo) studies that measure its effect on Tregs, let alone intratumoral Tregs were rare, if not impossible to find. The closest we found measured peripheral Tregs (not intratumoral). We did provide a reference in our book to that study .... Chapter 15, Reference #33, Gogos et al.
The Gogos paper does not address intratumoral Tregs, only peripheral. In Chapter 15, we also talk about Dr. Vikas Sukhatme's research showing that the ketogenic diet reduces intratumoral MDSCs in mice.
We wish there were more human studies we could have referenced, but that was all we had to work with at the time. There are interwoven thoughts and unanswered questions. Ultimately, we had to make a best-guess decision. Hopefully this brings some context to your questions.
Best,
Edward & Rene
Dear Rene
I have been reading your book and I am fascinating by it. I wish I knew about it earlier when my sarcoma came back the very first time. Well your book was not published then :-) I am not sure if I have enough time to find the right oncologist etc. I will be starting with fish oils and I wanted to ask you about the dose. In your book you mentioned you were taking 24 grams of fish oil per day.
I got Mollers fish oil that in 5 ml contains 1.2 g of omega 3. Could you confirm that you were taking 100 ml of fish oil per day? Or were you using more concentrated oil?
Thank you in advance
Urszula
For the amount of omega 3 (EPA and DHA) I took, please refer to http://curingcancerbook.com/omega-3-dosages (read our reply under "1) We do not recommend taking")