Hi Rene,
My husband has Myxofibrosarcoma in the neck region and surgery is not an option right now. He is in chemotherapy but his tumor is not responding so well.
His doctor is recommending more chemo to maintain his tumor. I am looking into all options out there. In addition to immunotherapy, I was wondering what is your thoughts on oncolytic virus. There is some clinical trials wondering if you have any info about how it is.
Thanks,
Sun Mi
Is there a certain trial you are looking at? It depends if the results from previous studies (in humans or pre-clinical) show the virus is able to target and destroy myxofibrosaroma tumor cells. Side effects also need to be kept in mind. Scholar.google.com is a good resource to look for these results.
What is the location and size of the current tumor(s)?
We're wondering if you've considered cryo +PD1? (Cryo might enable release of all tumor antigens, allowing T cell targeting to the tumors regardless of NY-ESO-1 status.)
Also, have you considered omega3?
We have been trying to find a strategy for my husband's tumor and we and to rule out NY-ESO-1 as we found that my his tumor is NY-ESO1 negative.
We are trying to use different methods to treat his tumor and since you know a lot of people, I was wondering if you had communicated with anyone who has used regional hyperthermia alone for sarcoma and has worked. Also if you know anyone who would know any doctor who would do hyperthermia in NYC. Also whether you could recommend any holistic or alternative doctors in NYC. I think you would agree that one should treat the tumor from multiple angles, targeting one pathway or target is not going to be enough… We are thinking that my husband should try different things (I.e. Intravenous Vit C, hyperthermia or hyperbaric oxygen ). Since he already did the frontline chemo drugs (AIM and Gemcitabine/Docetaxol) and nothing has worked, we feel we need to try different things that can decrease this tumor even a little so that he can have surgery even though its not clear margin. Then doing additional treatment such as radiation or immunotherapy can give a better chance. Hope you can help us. Thanks again Rene. We really appreciate it.
It seems like shrinking the neck tumor to enable surgery is your current goal. Some thoughts:
1) Surgery: Is it for certain that the neck tumor cannot be operated on? We recommend getting a second, or even third surgical opinion. We recommend MDA head and neck surgery. We have seen Dr. Ehab Hanna at MDA, but we do not know if he specializes in the neck region.
2) Radiation: Have the oncologists commented on the efficacy and side effects of radiation for your husband’s tumor? Is there a reason why they are not recommending it now to try to shrink his tumor?
3) Cryoablation: Since his tumor is NY-ESO-1 negative, it is important to find a way to target the immune system to the tumor. The most comprehensive way of doing this is with cryoablation, as a cryoablated tumor will be the source of all tumor antigens. Radiation is also known to do this, but it is not as favorable as cryoablation for it’s immune effect.
4) Clinical trials for sarcoma at MD Anderson (Houston, TX):
Please note the 2 sarcoma oncologists to consult with in the beginning of post #6 in this thread, and the current sarcoma immunotherapy trials at MDA:
http://www.curingcancerbook.com/where-can-we-get-slides-tested-ny-eso1-e...
5) Radiation + PD1: If all of the above are not possible or there is no time to wait for clinical trials, we would recommend a small dose of radiation (not to completely kill the tumor, but to release antigen), followed by off-label PD1. If there is no way to get radiation, it’s worth it to try PD1 alone. We know a patient who was able to get PD1 off-label in New Jersey (Dr Neil Morganstein, Summit Hospital, New Jersey). Do note that getting off-label PD1 requires time as well, so best to establish a relationship with the doctor asap, even before you need the treatment.
With regards to holistic/alternative treatments:
6) We feel holistic/alternative treatments may be useful for helping the body to recover from damage caused by chemo/radiation, but we would not recommend it when the goal is to actively shrink tumor. Chapter 4 recounts our struggle when we were trying to find alternative cancer cures - many of the treatments pointed us to the immune system. We recommend focusing on physical methods to kill/remove the tumor, combined with immunotherapy (Points #1-5 above).
7) Hyperthermia: We did explore this during chemo, as literature seemed to suggest that hyperthermia in combination with chemo made chemo more effective. However, there were no hyperthermia facilities where I was getting chemo.
8) Hyperbaric oxygen: We decided against using hyperbaric oxygen, as the potential for promoting angiogenesis could lead to tumor growth.
9) Intravenous Vit C: We tried intravenous high dose Vit C for a few weeks after chemo, but we did not do it long enough to know if it had any benefit in killing the cancer.
8) Diet: In between treatments, we would recommend a serious consideration of the high omega 3/ low omega 6 regimen, along with the ketogenic diet. (Chapter 15)
Thanks so much for your reply. We have surgeons at Sloan Kettering and DF and both said it inoperable at current state which we could understand after seeing the MRI, as there is no space margin at all between tumor and artery. We were told by radiologist at DF that for this type of cancer it will unlikely shrink the tumor but can maintain it so we were discouraged at that idea. Also cryoablation is not possible in this area. I think maybe the next option will be trying radiation and PD1...
As for alternative treatment, we had to leave US and had to go back to our country for a short trip and alternative treatments are easily accessible compared to here and my husband was able to do hyperthermia, hyperbaric oxygen and VitC. We didn't see a significant but at least some shrinkage whereas we didn't see anything happened when he was doing chemo. We were surprised as we didn't expect anything but was wondering if he could continue these treatment in addition to kinase inhibitor treatment, he could see get some shrinkage. But it seems very difficult to find places doing these treatments in the US.
I was wondering if you know anyone who has contacted or seen Dr. Raymond Chang at NYC? Wondering if we should see him.
Do you know if PD1 off-label can be covered by insurance? if not roughly how much it could cost?
Thank you again for your response. They are very valuable to us.
1) It's very significant that you saw shrinkage with the hyperthermia, hyperbaric oxygen and vitamin C. We're asking about the availability of hyperthermia, hyperbaric oxygen and vitamin C on the East Coast for you -- will get back to you about that.
2) Has the oncologist commented on the shrinkage? Whether they think it's a late effect of the chemo, or are they ascribing it to the hyperthermia, hyperbaric oxygen, Vit C? Or to make it more complicated, could be the combination of chemo followed by those treatments?
3) Dr. Chang does not do hyperbaric oxygen, hyperthermia or vit C. He specializes in Chinese medicine, using off-label prescription drugs for cancer (easily self-administered drugs, not checkpoint blockade) and dendritic vaccine (in collaboration with Dr. Nesselhut in Germany)
4) PD1 off-label for sarcoma is not covered by insurance (usually treatments that are not FDA approved for your cancer will not be covered by insurance). But, the oncologist we noted above was able to get PD1 free for the patient by petitioning the drug company to give it as compassionate use. It takes a while for this process, so we recommend you contact the doctor we referenced above ASAP to get the process started, and to inquire how much it will cost if the drug company does not give it for free. Timing of treatments is critical, and laying the groundwork for future treatments is important otherwise the difficulty of logistics will prevent one from getting treatment.
5) During this time that you don't have any treatments, do consider an intense course of omega 3/6, along with ketogenic diet, if possible. (Chapter 15) There are epigenetic effects of omega 3/6 (Chapter 15, references 37, 38), that can have significant effect on tumors. When my 3rd lung tumor doubled in 3 months, I started an intense omega 3/6 combining it with the ketogenic diet (we were very desperate at that point). Right before my cryoablation, that lung tumor shrunk slightly, even though it should have grown with the trajectory that it was on.
We don't know why the tumor shrunk slightly but could be the effect of the combination of all things. We haven't met with our oncologist yet but I am sure she will dismiss it as the effect from the chemo. Thank you so much for the info on the doctor and how to get the off label PD1. I could not see Vit C, the hyperbaric Oxygen nor the hyperthermia from Dr. Chang's Website but I feel like we need to see a holistic doctor here in the US and see if they can offer us anything to help with the treatment he is going to get. Do you have any info on any good holistic doctor in the NYC area too? We want to try the omega3 and ketogenic diet but wondering he should do it after we know what the side effects are after he has started his new treatment. Do you think its alright to go on the ketogenic diet long term. There seems like there are different types of ketogenic diet in the internet, wondering if you would recommend a certain type. Thanks again for your help, we really appreciate it.
1) Hyperbaric oxygen in NYC - we were given the name of Dr. Scott Sherr. The clinic he's affiliated seems to have hyperbaric oxygen treatment in Manhattan.
2) Holistic doctors in NYC - We are not familiar with holistic doctors in NYC, but we were told that the medical regulations in NY are very tight, so it is hard to find doctors who do things out of the box.
As we mentioned above, Dr. Chang specializes in Chinese medicine, off-label use of prescription drugs (easily administrated, not checkpoint blockade) and dendritic vaccinations (in collaboration with Dr. Nesselhut in Germany - one would need to go to Germany to start it). Cost is expensive, but he is easily accessible by email/phone/skype and charges by time.
3) Chapter 15 goes into why I did a short course of ketogenic diet (~2-3 weeks). I personally have not done the ketogenic diet long term. Mainly I limited carbs to 20g per day, and used ketone strips to measure ketone levels in urine (available from Amazon, or even drug stores?) to make sure I was in ketosis. I also combined it with the omega 3/6 diet - by limiting the omega 6 oils in my diet. I compiled some common foods' nutritional data here, along with resources: http://curingcancerbook.com/nutrition-facts-low-omega-6-diet-and-ketogen...
The 2 components of the omega 3/6 diet: 1) high omega 3 supplementation can be done when there is no active treatment, 2) low omega 6 diet can be done anytime even when on treatment as it's just a restriction on omega 6 fats in the diet.
Thank you so much for the info. I will contact Dr. Sherr's clinic to see if he can get the treatment there. Thanks again. Will keep you posted.