T- cell reaction with chemo and hyperthermia vs cryo

We're very sorry you're battling synovial sarcoma. We're glad we're able to connect, as synovial sarcoma a very rare cancer, and we hope we can help you as we know how hard it is.

Thoughts about Initial treatment:
If we were in your situation, without easily accessible immunotherapy and with a growing tumor, the usual treatment for synovial sarcoma would be to first treat with chemo to try to shrink the tumor. Synovial sarcoma often has microscopic tentacles invisible on scans, growing from the main tumor mass visible on scans. The chemo tries to shrink these tentacles, and perhaps even shrink the tumor a little bit. When the tumor is shrinking, then surgery is done, for a better chance of removing all the cancer. Due to synovial sarcoma’s aggressive nature, usually an en-bloc surgery is done, where the surgeon removes as large an area surrounding the tumor (sometimes including bone and muscle planes) as possible, without disturbing the tumor at all.

You will need to see if this treatment strategy is possible for your situation.

If we could go back in time, with all the knowledge we have about synovial sarcoma from our experiences, the best first treatment to do, if I was correctly diagnosed with synovial sarcoma in the very beginning, would have been to do some chemo to try to shrink the tumor, then the largest surgery possible - to remove the tumor “en-bloc” along with the jaw bone and surrounding muscles, without cutting near the tumor. It would have been a very very difficult decision to make at the start of my battle, but looking back, doing chemo and that big surgery may have been curative for me. I ended up having to do the big surgery years later, but in a much more dangerous situation with recurrent jaw tumors and metastatic lung tumors as well.

The longer the primary tumor is allowed to grow, the higher the chance of cancer cells spreading to other parts of the body. So, time is of essence.

Chemo fears:
- Chemo does suppress the immune system, but usually the immune system will recover. Your exisiting immunity to certain bacteria and viruses will not be lost after chemo. In my experience, prior vaccines do not need to be repeated.
- Also recall my experience -- after chemo (doxorubicin and ifosfamide), even though my immune system was weakened (even until now), with the combination immunotherapy treatments I got, I believe there is immune control over my cancer. The immune system is very complex.
- Preserving the immune system should be a high priority, but it needs to be weighed with the available treatment that will give the best chance of survival. As I explained above, there is a valid purpose to chemo before surgery, to make the surgery a possibly curative one (this needs to be discussed with your oncologist and surgeon to see if this is possible in your case).

Immunotherapy:
But while you’re doing the initial treatment, it is a good idea to plan for an immunotherapy strategy:

1) Generating T-cells against the cancer:

a) Look for clinical trials that target the cancer antigen NY-ESO-1. This is the cancer antigen highly expressed in synovial sarcoma (Chapter 6). If there is a clinical trial, they will test your tumor to see if it has NY-ESO-1. Some possible NY-ESO-1 treatments to look for:
* adoptive T-cell therapies targeting NY-ESO-1 (very powerful immunotherapy)
* NY-ESO-1 protein vaccine

b) Cryoablation -
Chapter 11 explains cryoablation in detail, especially it's advantage with an immunotherapy strategy. Doctors will usually only do this cryoablation there are just a few tumors that can be killed easily with cryoablation. Cryoablation usually is not done when tumors are widespread, or in difficult to reach locations. It also depends on the experience of the cryoablation doctor. Cryoablation doctors are usually interventional radiologists, not surgeons.

If cryoablation of a small portion of your tumor can be done before surgery, that may help to generate T cells against the tumor. However, whether a doctor is willing to do this depends on his/her philosophy. Sometimes it helps to explain your thinking and scientific basis to the doctor, to see if they are willing to go along with you.

If cryoablation cannot be done, radiation is the next best treatment to generate cancer antigens (see Chapter 11). However, radiation of certain areas (lung, rectal area) can have detrimental side effects, so that needs to be considered.

We personally would not substitute hyperthermia for cryoablation, radiation or surgery to kill the tumor. We’ve used hyperthermia for supportive reasons, but not as a primary treatment to kill the tumor.

2) Removing tumor defenses:
PD-1 - Find a doctor that will prescribe this, or a clinical trial for PD-1. PD-1 should be done soon after treatments that generate T cells against the cancer. (See Chapter 16) Disadvantage of clinical trials is that it’s restrictive of what treatments are done before and during the trial (actually no other treatments are allowed to be done during trials).

3) Diet changes:
Only when you are not going to surgery or procedures where bleeding is a concern (like cryoablation or certain medications), something to look closely at is the omega 3/6 regimen (Chapter 15 and links under the "Diet" tab on this website). If you’re able to sustain the omega 3/6 diet, adding a 2-3 week course of the ketogenic diet has strong effects on the immune system (Chapter 15).

4) Avoiding all sources of radiation
Often sites of sarcoma are correlated with radiation exposure or previous damage to the area. After being diagnosed with sarcoma, I avoided radiation sources. I avoid standing near the microwave when it's running and I don't put my cell phone near me (using wired headset or speaker). If the cell phone is near me at bedtime, I turn off the wifi, cellular and put it on airplane mode.

Wishing you much strength, peace and hope in your upcoming decisions.