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
Hi Jay,
We're glad our book was helpful to you! We hope you're recovering well from your surgery.
There are a few things you can consider when there is no confirmed tumor:
1) High omega 3/ low omega 6 regimen and/or the ketogenic diet -- Patient DH did not do any chemo, radiation or surgery for his widespread sarcoma lung tumors, and he achieved remission solely on the omega 3/omega 6 regimen. My lung tumors stopped appearing after I started both the omega3/ omega 6 regimen, and short courses of the ketogenic diet. In Chapter 15 we discuss the science behind the high omega 3 and low omega 6 regimen and the ketogenic diet.
2) Go to Cancer Research Institute's clinical trial finder. They have a service where a person will help you to find suitable immunotherapy trials. In the past, there have been immunotherapy trials for people with no evidence of disease. Refer to Chapter 16 for information on them. It is very hard to get a single protocol clinical trial without the support of your oncologist, who does not seem to be familiar with immunotherapy.
3) If the lung nodules continue to grow and the radiologist or oncologist thinks it may be tumor, it may be worthwhile to cryoablate the lung tumor to kill it and for an immune effect (see Chapter 14, section "Deja vu: Debating Cryo Versus Surgery"). For more immune effect, the cryoablation can be followed by off-label PD-1 checkpoint inhibitor (see Chapter 16, section "What I would do if my cancer returns")
Note: The Coley's Toxins that I received was made by MBVax, a Canadian company. We trust their formulation of Coley's Toxins. Unfortunately, the company did not have enough funding to continue producing Coley's Toxins. So we do not know if the Coley's Toxins available now are from reliable sources, so we cannot comment on it. But now there are modern immunotherapies available via off-label or clinical trials (Chapter 16)
Thank you so much for such detailed response. I will digest those paragraphs slowly.
You did not mention NY-ESO-1 vaccine much -- is it because you think it's not that effective if it's used alone without PD-L1/PD-1 inhibitor ? or cryoablation can actually achieve the similar effect as NY-ESO-1 since it help immune T cell to find the target? In your book the story of Heather is very inspiring and seems like she use the NY-ESO-1 solution ONLY without any others (i.e PD-L1/PD-1 inhibitor), right?
Cryoablation will essentially generate a whole tumor vaccine, versus the NY-ESO-1 vaccine, that I got, is a vaccine against a single protein found in my tumor.
Heather had gotten NY-ESO-1 adoptive T cell therapy (not the NY-ESO-1 vaccine), which introduces a large army of T cells that target NY-ESO-1 in the tumor. Even though Heather's tumors regressed with the NY-ESO-1 adoptive T cell therapy, eventually some tumors grew back -- most likely these tumors did not contain NY-ESO-1, so NY-ESO-1 adoptive T cell therapy was not effective against those tumor cells.
If there is a clinical trial offering an NY-ESO-1 vaccine, it is worth doing, as there are very little side effects (I got a fever once after the vaccine). But in your situation where you are NED, it will be hard to find. But do reach out to the Cancer Research Institute's clinical trial finder service.
Hi Rene,
I finally started executing #1 as you suggested (Omg3 vs Omg 6) - for the first time in my life I started calculating calorie/omg3,6 for the food I eat. I am taking about 8.8g Omg3 per day, trying to limit Omg6 below 6g. I also studied the paper about patient DH (the paper mentioned he did surgery to remove other type of tumor , while using Omg3 to cure Sarcoma tumor in lung; so I am wondering why other type of tumor is not impacted by Omg3...)
I also did some research on ketogenic diet, but i saw some articles on web which disagree with it. (1) there are not successful story; (2) cancer stem cell (not the cancer cell) may be adaptive to avoid the impact of ketogenic diet. (http://beatcancer.org/blog-posts/can-a-ketogenic-diet-cure-cancer-part-two/, http://www.chrisbeatcancer.com/dr-gonzalez-dismantles-ketogenic-diet-for..., Bonuccelli G, Tsirigos A, Whitaker D et al. Ketones and lactate “fuel” tumor growth and metastasis. Cell Cycle. Sept. 2010 9(17):3506-3514 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3047616/).
Many things I want to discuss with you, later...
Jay
That's great that you're taking action with the omega 3/ 6. I decided to take a higher dose of omega 3 than Patient DH, so I took Carlson's Medomega, which is a concentrated liquid fish oil. 1 tablespoon of Medomega has 7.2g of DHA and EPA. We find that liquid fish oil is fresher than the fish oil pills.
Chapter 15 has references for the scientific research on how a short course of ketogenic diet can remove the "bad" immune cells, which was why we decided to do a short course of the ketogenic diet.
Thanks for the information that Medomega has 7.2g of DHA and EPA - wow that's amazing! I bought bottle of liquid fish oil (Carlson brand) it only has total of 1.6g Omg3 with 0.5g DHA per tbsp. I will get Carlson Medomega.
For my situation - I had my 8.5cmx5cmx5cm tumor surgically removed (it's margin clean and successful). My oncologist (actually same oncologist Rene used then not used) suggested me to do chemo and radiotherapy after surgery to kill all the microscopic cancer cells - it took me 2 months research and decided I will not do that. I found immunotherapy after bought your book - I visited one oncologist in MSK to ask for immunotherapy treatment - and she told me I have no cancer or no visible tumor for immunotherapy to kill (then why some oncologist ask patient to use chemo to kill invisible cancer cell after surgery? and she suggested me to do chemo --- ). the CT scan I did before surgery show 2 small nodules in my lungs (8mm and 3mm) but not diagnosed yet.
so for me, no chemo, no immunotherapy, Omg3/6 is my only weapon now. what's your suggestion how much omg3 (especially DHA) I should take on daily basis? I plan to follow DH and Rene to do Omg3/6 for long term - at least 12 years.
We understand the difficulties in trying to get immunotherapy when there is no detectable tumor. That was our struggle too after first-line treatment. Most likely the doctor that recommended chemo instead of immunotherapy for your situation is thinking in terms of immunotherapy clinical trials, where usually one needs to have at least 1 tumor to track the effectiveness of the treatment. However, we have seen immunotherapy trials that treat patients without visible tumors ("prophylactic treatment") and they track whether any tumors appear after that treatment. These are very rare though. Check with Cancer Research Institute to see if there are any such trials for you.
I tried to follow patient DH's ratio of EPA and DHA. To get more DHA, I took algae oil DHA supplements (Neuromins DHA, 200mg, either Source Naturals brand or Nature's Way). As for the amount, if you do not have any bleeding risk (from upcoming surgical procedures, prescription medications such as blood thinners), you can try to achieve Patient DH's amounts of EPA and DHA. The higher the ratio of omega 3 to omega 6, the faster the effect will be. I was very aggressive with my initial omega 3/ 6 ratio, taking about 24g omega3 (with similar ratio of EPA to DHA as Patient DH) to 10g omega6. Daily I took 2 tablespoons Medomega liquid fish oil and 20 Neuromins pills (200mg each) to achieve this. Took these with my meals, spread out over the day.
Since you have small lung nodules, it is very important to track any growth with scans so that you can treat the lung tumors right away if they grow and behave like sarcoma metastases. I was scanned every 3 months for my aggressive synovial sarcoma (recommended by MDA).
I also suggest you to get in touch with a cryoablation doctor regarding your lung nodules now, to see if the 8mm nodule can be treated now, if it needs to be larger or show signs of growth for treatment, and whether that area can be treated with cryoablation. We highly recommend getting in touch with doctors even before you need the treatment. It greatly lowers the stress when the tumors eventually grow.
Really appreciate it deeply from my heart - i will write you email soon today - when i read your book and found you mentioned another rare disease which i also had many years ago - I felt surprised how come such extremely low probability similarity existed (even we have different sub-type of sarcoma). (i did not use Facebook for long time, will set it up as well).
Hi Rene and Eddy,
Happy New year! Thanks again for all the info.
a few questions to discuss:
(1) the risk of further metastasis caused by cryoablation on the metastasis tumor when it did not kill all tumor cell (I also worried biopsy may cause potential metastasis as well) - how do you guys think about this? same for surgery if the surgery is not radical or complete.
(2) if not doing biopsy before cryoblation - no way to be sure what kind of cancer it is. it may be benign mass.
(3) do you think NY-ESO-1 vaccine can be used together with cryoblation? or it's duplicated effects for immune system.
Thanks,
Jay
1) Metastasis due to incomplete cryoablation or biopsy --
Biopsy:
At MD Anderson, with my cancer, if the biopsy revealed tumor cells, it is routine to surgically remove the biopsy tract to remove tumor cells that have seeded along the biopsy tract. (I don't know what the standard procedure is for other types of cancer other than mine.)
Cryoablation:
An experienced cryoablation doctor will put the needles adjacent to the tumor, so that the cryoablation needles will not touch the tumor or seed tumor cells along the needle tract. In Chapter 11 "Debating Cryoablation Versus Surgery" we discuss the pros and cons of cryoablation, which addresses concerns about tumors growing adjacent to the cryoablated area. These are the risks that one has to debate for their particular situation.
2) Without a biopsy, determining whether the tumor is malignant or benign will rest on the expertise of your oncologist in analysing the progression of the tumor via scans. We trust Rene's oncologist at MD Anderson's judgement, so every time before her cryoablation, no biopsy was done. This was to minimize the chance of seeding tumor due to biopsy, as that would cause even more problems that would be very hard to deal with. We weighed it against the pros of doing a biopsy beforehand, but in Rene's case it was more advantageous to do the cryoablation without biopsy.
3) The NY-ESO-1 vaccine has the advantage that it will most likely cause a strong immune response against the single NY-ESO-1 protein. On the other hand, cryoablation generates a comprehensive tumor vaccine (all the proteins of the tumor will become a vaccine after cryoablation), but there is no guarantee that there will be a strong immune response afterwards. So if possible, these two can be used in succession, as they each have differing advantages.
Thanks for explain - I understand 1) and 2).
for (3) about NY-ESO-1, I remember in your book Rene started using NY-ESO-1 vaccine even long before the metastasis was detected. I thought about this more, and curious whether it's is still safe to ingest NY-ESO-1 vaccine (or NY-ESO-1 vaccine plus PD-1 inhibitor) if the body indeed has NO cancer cell at all (or the suspicious mass is actually benign, not a malignant tumor).
Most likely the option of getting the NY-ESO-1 vaccine or NY-ESO-1 + PD-1 will be through a clinical trial.
To qualify for such a clinical trial, they will usually require a biopsy of your mass to confirm that it is cancerous + expresses NY-ESO-1.
If you don't get a biopsy, you'll need to weigh whether you want to go through the potential side effects of the treatment (NY-ESO-1 vaccine or NY-ESO-1 + PD-1) even if your mass is benign.
I was willing to go through the potential side effects of the NY-ESO-1 even though I had no detectable tumors by scans. I knew that there was a high probability that I had microscopic tumors, so I was willing to go through the vaccine.
Thanks. Got it. Yes there is a clinical trial going on ( actually it is NY-ESO-1 vaccine plus a PD-L1 inhibitor, not PD-1). Biopsy may not be required. I did some research, NY-ESO-1 side effect is minimum, but PD-L1 side effect is many.....
still investigating the small mass on spine (it's frustrating and hard to find Neurosurgeon who also know sarcoma to investigate; also will do CT chest to check whether the 2 nodules in lung has grow or not.
I still did not find a good solution (1) is NY-ESO-1 vaccine effective ? seems not. even there is a few clinical trial but i did not find definitive answer; (2) for PD-L1 inhibitor, my subtype of sarcoma may not have PD-L1 expression on tumor cell (only < 30% has it), and 10% has PD-1 on T cell. so the PD-L1 inhibitor or PD-1 inhibitor may not work.
I am not optimistic on immunotherapy can fix problem(still early stage), and at the end I will still count on surgery and cryoblation to solve the problem (hope the metastasis location is not that bad).
I believe there is high chance that microscopic tumors in the body, like "seed and soil" - it depends on the soil. need to figure out how to keep the soil in a condition which prevent the seed growing....
I may need your help in next few days/weeks for a decision.... Thanks again!
NY-ESO-1 vaccine effectiveness:
- The purpose of the NY-ESO-1 vaccine is to generate T cells against NY-ESO-1, so I would not measure the effectiveness of the vaccine in terms of tumor regression. I would not count on the vaccine by itself to cause tumor regression (see Chapter 11, section "Devising a combination strategy")
- In my experience with the NY-ESO-1 vaccine (NY-ESO-1 protein along with Montanide and polyIC - these are the immune stimulants in my particular vaccine), I was able to generate T cells against NY-ESO-1. In that sense, the vaccine did what it was supposed to do for me. You'll need to examine if the NY-ESO-1 vaccine in that particular trial was able to successfully generate T cells against NY-ESO-1.
PDL1:
- The side effects of PDL1 are much less compared to PD1, as it targets a smaller subset of cells. These are mainly autoimmune side effects, or itchy skin. These can all be reversed with steroids when caught early.
Neurosurgeon:
- Have you reached out to MD Anderson? Their surgeons will have more experience with sarcomas because they see more sarcoma patients than other cancer centers.
Immunotherapy:
- We've outlined in our book how we came to have a strong conviction of the curative potential of immunotherapy, and the abundance of options that are available now via clinical trials and off-label, compared to when we were fighting a few years ago.
Environment for tumor to grow:
- This is covered in Chapter 15.
Thanks. a few more questions need clarification.
(1) NY-ESO-1 vaccine effectiveness: does this mean NY-ESO-1 vaccine alone can only can generate additional T cell in the body to find the cancer cell with NY-ESO-1, but the T-cell can not kill the cancer cell after finding cancer cell? (I understand if the cancer cell has PD-L1, and the T-cell (generated from NY-ESO-1 vaccine) has PD-1, then the killing will not happen. what if the generated new T-cell from vaccine has no PD-1, and the tumor call has no PD-L1, in that case, the T-cell from vaccine should be able to find and KILL the cancer cell, right? even from my biopsy of tumor report - it show T cell (CD8, CD4) in the tumor biopsy - this mean immune system has found the cancer cell - killing or not is unknown.
(2) thanks for suggestion of contact MD Anderson, I probably has to make that move. I already feel more and more frustration on the limited sarcoma expertise and experience in my local area. I have to do lot of research by myself, rather than rely on oncologist.
(3) Good news is my recent CT chest scan show no growth of the 2 nodules (stable in size). (so we still do not know what it is .... ); beyond CT chest, MRI is the most and only sensitive tool for my subtype of sarcoma to check other parts of body (bone scan, PET scan is not sensitive due the tumor of my subtype does not absorb glucose that much). I think it's extremely important to early detect any of the new tumor in the body to increase the success rate of surgery/cryoblation. the challenge for my subtype is that it tends to spread to unusual place (abdomen, bone, spine,pelvis etc) and the correct MRI detection mechanism is important. do you guys have suggestion on how to find good radiologist on MRI ? (the university hospital i used do not allow patient to talk to radiologist directly, and doctor who order the MRI do not has much knowledge on the subtype of sarcoma).
Thanks.
1) The interaction between the immune system and cancer is extremely complex. Scientists at the cutting edge are still trying to understand it. For example, lack of PDL1 expression in tumor does not mean that that tumor will not respond to anti-PD1 treatment. Doctors have seen PDL1 negative tumors respond positively to anti-PD1 treatment. Layering treatments that target various aspects of the immune response have shown better responses. We talk about this in Chp 11 and 16.
2) The more scans a radiologist reads, the more experienced they are. Find a cancer center where they have seen many many cases of your cancer. For sarcoma, we recommend MD Anderson.
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.
Hi Sun,
We moved your thread to:
http://www.curingcancerbook.com/where-can-we-get-slides-tested-ny-eso1-e...
We've answered your questions there,
Rene and Eddy