Hi,
Your book is a "must read"... so much that I insisted my husband and my parents read it. Thank you fir writing it!
My 16 year old son has recently been diagnosed with Epitheliod Sarcoma.
He had a bump on his right thumb. Dr's thought it was a cyst. Many years later (about 5 years) we had it removed and they found it to be Sarcoma. He had surgery (UCLA) to resect and was able to clear margins. Chest CT was clear and they did a sentinel node biopsy that was negative. Just this month he got his first scans 4 months after surgery and chest and hand/arm were clear.
I am thrilled it is currently clear and hope and pray we stay that way forever, however, I feel the need to be prepared just in case. For that reason, these are my questions:
1. We were told at this point to only do scans every 3 months. Is there anything else you think we should/could be doing to help ensure it doesn't come back? Any systemic (chemo?) treatments?
We already changed diet to mostly plant based organic whole foods, minimal processed, minimal sugars, reduced meat and dairy. We plan to add omega 3/reduce 6, but what's right ratio amount for active 16 year old that is currently NED? (He rides Motocross so too thin blood might not be good)
2. We have not yet done genome testing. His tumor was very small so I need to make sure I get as much information as possible in case there is not enough for multiple samples. Should we do it now? Or wait in case they come up with more new markers that we would've wanted tested?
Do you know who/where/what is the best testing place? Foundation One?
3. if you were diagnosed TODAY with Epitheliod Sarcoma, and you had surgery that cleared margins, what treatment protocol would you do in the following situations:
1. Solid tumor recurrence in original location (No mets)?
2. Metastasized to lungs?
3. Metastasized to lymph nodes?
Thank you so much for your time and support. You two are the best!!!!
Kim
1. Systemic treatments when NED -- the oncologists can comment if there are any systemic treatments that are effective for his cancer. Do press for numbers to see how effective the treatment is. Personally, if I was in your son's situation, I would do the omega 3/6 regimen seriously (Chapter 15). The ratio of omega 3/6 is up to what you're comfortable with.
Patient DH lowered his omega 6 to 10g/day, and took 17g omega 3.
I lowered my omega 6 to 10g, and took 24g omega 3. I stopped the high omega 3 when I showed signs of bruising, and resumed after a few days (but kept up with the low omega 6). (This depends on the risk vs. reward in each person's situation... for eg, if someone is fighting active tumors, getting bruised more easily after high omega 3 may not be a strong enough factor to stop omega 3). I always stop the high omega 3 one week before scans, in case I have to go for surgery or cryoablation afterwards.
One thing to bear in mind: if one's prior diet consisted of high omega 6, it may take a while to reverse the effects of the omega 6.
2. Genetic testing -- We did do genetic testing on my tumor, but the oncologist couldn't make use of the information as she could not prescribe the recommended non-FDA approved drugs for my sarcoma based on the genetic test (Chapter 3, section "Exploring other ways to kill my cancer", pg 47-48). It may be a good idea to save the tumor for any future immunotherapy clinical trials that may require testing with the tumor sample.
3. What we would do if cancer recurs -- Chapter 16 "What I would do if my cancer returns" (pg 281-282) details this.
THANK YOU!!!! Not only for your quick response, but for sharing all your knowledge!! Your book has given me so much hope and drive to fight this!
I told our pediatric sarcoma onc at UCLA about your book today. He hasn't read it yet but was interested. So I already ordered one and shipped it to him today! I also asked his nurse if she wants a copy. If so, I'll be ordering another and get it shipped asap as well. I hope it helps with collaborating with them in my son's care plans.
I'll definitely start implementing omega 3/6 diet changes. Are the amounts DH took ok to take if you are NED? How long should we keep him at those amounts?
Are there any other things we can do to improve/strengthen his immune system so we are "better armed" for a fight?
I have so much appreciation and gratitude for your contributions and continued support!!!
This is a very valuable time when your son is NED -- to learn what conventional treatments and immunotherapies are available for him if the cancer ever returns. Carefully evaluate the pros + cons of these treatments, get definitive numbers (how many % survival after 5 years, 10 years) from the oncologists (Chapter 3).
We found that having a plan in place gave us the greatest peace of mind when the chance of recurrence was still high. We also recommend establishing relationships with doctors/clinical trials at this time, as it's an investment for the future. It's a tremendous stress-reliever to have these relationships established before you need treatment from these doctors. It also makes it much quicker to make the appointment when you do need treatment, as you'll be an established patient. We've established relationships with some doctors for many years, but we haven't obtained treatment from them yet.
There is no formula for the amount of omega 3 to take. One needs to weigh the pros + cons and determine what one feels most comfortable with.
We decided to take more omega 3 than what DH took because we were very desperate to stop the tumors from growing. We did what was sustainable, and that my stomach/body could handle. (Some people have indigestion/ gas with fish oil. Taking it with food and/or digestive enzymes will avoid this.)
The ratio of omega 3 to omega 6 is the most important thing to calculate. Start with a small amount of fish oil, then ramp up. Also, do look up the reference to the case study of patient DH. We constantly referred back to the paper as we went through the omega 3/6 regimen -- it gave us the details we needed, and encouragement when it was hard to do. The details on the brands of fish oil and DHA (algae oil) that I took to attain 24g omega 3 -- read post #2 "I took a concentrated liquid" - http://curingcancerbook.com/three-questions-fish-oil