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Job
T- cell reaction with chemo and hyperthermia vs cryo

Dear Rene and Edwar,

Thank you so much for writing such an inspiring book, hope you all doing well!

At this moment I feel my synovial sarcoma is growing, I'm considering chemo, because I think it takes to long for getting PD-1 and Cryo, I would just win some time and prevent the tumor from invade other bone and tissue. Since I don't have detectable metastasis it's hard to get immunotherapy.

Q1: Still I think the chemo could spread the cancerous cells easily by suppressing the immune system. This is just a guess because every story I've read about synovial sarcoma treated with chemo, recurrence or metastasis occurs.

Q2: Since doxorubicin an ifosfamide will destroy all the cells, how could any T-cell recognise the dead cancer cells, so they can kill other cancer cells?

Q3: Are all the immune remembering T-cells destroyed after chemo, so I will get sick from a flu which I was already resistant for, also do I need to get new vaccines against Hepatitis etc?

Q4: Could hyperthermia get the same results as cryo? As far as I understand it works basically in the same way, while hyperthermia is easier to obtain and much cheaper. My tumor invaded my sitbone and is growing towards my anus, so I would also be able to use a thermo pad for locally heat the cancerous area.

Could you please give me some answers, I would really appreciate it!

All the best,
Job

Rene and Edward Chee
synovial sarcoma thoughts

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.

Job
Cryo after chemo and vitamins/diet during chemo

Can't thank you enough for such detailed answers and advice!

Sorry for having so many questions, hope I can do something back in the future!

1) I'm just thinking about how the cryoablation could have effect by freezing some dead cancer cells, I mean they are already dead so why aren't those T-cells recognising and removing these cells in the first place?
2) Also if the dead cancer cells are destroyed by chemo, do they still have their same genes as before? Otherwise the immune system won't be able to fully detect the genetic of the cancer cells, so it could be less effective, I suppose.

3) I've read good stories about, vitamine C, carrot juice, Reishi and CBD/THC oil. I'm considering to use those vitamins/supplements while having chemo. Do you think this will effect the chemo from doing it's work?
4) Could the use of omega 3/6 regimen and the ketogenic diet be supportive during chemo?

5) Did you already take cold showers, ice baths and sauna's for supporting your immune system and chronic fatigue?

I'm taking a cold showers after a warm one for years now, and haven't been sick since then. It supports the blood flow and the immune system, The 'Ice man' inspired me in this. I'm also curious about intermitted fasting, which could also gain your immune system in a better state. For all this above I'm not sure if it's a good idea to do this during the chemo period?

I already followed your radiation advice, I also use anti-radiation stickers on my electronic devices.

All the best,
Job

Rene and Edward Chee
clarification

I need to clarify that the immunotherapy thoughts in the previous reply apply only when visible tumor returns. There will hopefully be no more visible tumor after chemo/surgery.

Ideally, one would start with immunotherapy, but since you mention there is not enough time to find a cryoablation doctor and secure PD1 or to look for an immunotherapy trial, the next best thing may be to see what conventional treatment you can do to buy time.

We would be very cautious to do anything during chemo, as supplements/treatments can counteract the action of chemo on the cancer cells. Supplements and supportive treatments can be done after chemo to help your normal cells recover. Also, during chemo, you may not want to stimulate your immune system, as whatever cells are actively dividing will be killed by the chemo.

We haven’t looked into cold showers. We have use the infrared sauna (dry) to help with the immune system.

Chapter 15 goes into the dietary strategies we chose to use that have effect on the immune system. I did not do any of these dietary strategies during chemo, but afterwards.