Thank you for writing this book. We gained understanding of the basics of the immune system (which we've since studied further), your experiences interacting w/ doctors, viewing scans yourself, etc. Amazed at what you went through.
My wife is an LMS patient, following hyst last yr, had recurrence in abdomen. After chemos found ineffective, now planning on IGRT. Don't know at this point if surg will follow. We'll be finding out a lot next week w/ all this.
We've read about & are aware of synergy of RT w/ immuno but not sure how to obtain it as a complementary treatment (or if we gain NED after RT will we need it/how to get it). We're at a sarc ctr but immuno hasn't been part of the plan so far. We will however be mtg w/ the immuno office soon to see if they have a trial for us. But are those trials ideal for us is a question in my mind.
Would appreciate your thoughts.
Thank you
Hi!
We're so sorry to hear your wife is in the middle of fighting leiomyosarcoma.
Our thoughts about:
1) strategy:
If her cancer has spread (metastatic), and chemo has been ineffective, it may be worth it to pursue radiation and immunotherapy, to harness the immune system against her cancer. The 2 main purposes of immunotherapy (Figure 35) are 1) creating T cells against the cancer (which radiation can achieve, Chapter 11, section "Radiation: An Immunotherapy Accessible to All"), and 2) removing tumor defenses (checkpoint inhibitors such as CTLA-4 and PD-1, described in Chapter 7 "How Tumors Evade the Immune System"). We go through the basis behind combining treatments to achieve these two goals of immunotherapy in Chapter 11, "Combining Immunotherapy for Better Results".
If there is an immunotherapy trial available at your hospital, you'll need to ask the immunotherapy oncologist what the purpose of the immunotherapy treatment is -- does it make T cells against the cancer, or does it remove the tumor defenses, or does it do both.
Immunotherapy may not be 100% effective, so after pursuing immunotherapy, you can consider consolidative surgery to remove any remnant cancer, whether or not there is tumor detectable (Chapter 13 "Taking No Chances: Consolidative Surgery").
2) obtaining immunotherapy after radiation
After radiation, she has 2 options to get immunotherapy, clinical trials or off-label treatment.
If there is no immunotherapy trial at your current cancer center, you may consider searching for other clinical trials at other locations in the US. Unfortunately sarcomas are rare, and as a result, immunotherapy clinical trials for sarcomas are even rarer. If your wife can travel, it may be worth considering an immunotherapy clinical trial at other locations in the US.
If she is NED after radiation, she will not qualify for clinical trials that require a tumor to track the effectiveness of the treatment. But, off-label treatment is also an option, see Chapter 16, section "Think out of the box"
If she gets into a clinical trial, there will be a "wash-out" period, a set amount of time where she doesn't receive any treatment. So, you'll need to be willing to wait for that amount of time with no treatment after the radiation treatment.
During that period of time with no treatment or even starting now, you can consider utilizing some of the dietary strategies that we talk about in Chapter 15 "Diet-Based Immunotherapy", as it can make a difference in weakening the tumor and strengthening the immune system against cancer.
Take care,
Rene and Eddy
Rene & Eddy,
Thanks so much for your very thoughtful reply. We'll check back w/ those chapters you mentioned.
We did go with some of the dietary things in your book. We added more oily fish meals & cut down on nuts. What do you think of flaxseed oil (sorry if its already mentioned in the book - we'll probably re-read it tomorrow)?
Flaxseed oil consists of ALA. ALA is a precursor to EPA and DHA, the two active components in fish oil that are shown to have various effects on cancer cells. It would not hurt to take flaxseed oil, but the conversion of ALA into EPA and DHA is not complete in our bodies. So, for the most effect against cancer, we would focus on fish oil (EPA+DHA) and algae oil (DHA) as the main sources of EPA and DHA. Patient DH, mentioned in Chapter 15 "Diet-based Immunotherapy", took both fish oil and algae oil supplements while lowering the omega 6 in his diet, to achieve his dramatic regression of metastatic malignant fibrous histiocytoma (MFH, a type of sarcoma) over 10 years. That is what Rene focused on too. This is the paper detailing patient DH's omega 3-6 regimen: http://www.thedcasite.com/Omega3_Fatty_acids/Nutritional_Intervention_Wi...
Hi Rene and Eddy,
I read your tremendous and I'm inspired by what your determination and will to live was able to accomplish. It really gave me hope that I too can achieve NED.
My story is that I was diagnosed with low grade unclassified spindle cell sarcoma. I was told this cancer has a 95% cure rate and I'd be fine as it was superficial and we got clean margins. That was back in 2014. As of last Monday I'm being told I have 6 nodules in my lungs with the largest being 2.6 cm. I had a recurrence last year and did surgery and radiation.
I think I have a strong grasp of your multi pronged approach for therapy and I will be reviewing that with the oncologist at Dana Farber where I am getting my second opinion on Tuesday.
My concern is that since the sarcoma I've been plagued with is low grade with I'm guessing mean less mutations, are there immunotherapies out there that can help me?
Also are there any specific studies on low grade sarcomas or unclassified?
Is there a doctor that specializes in low grade sarcomas that have metastasized?
I'm not sure how to research and find the info I need. It's all so overwhelming.
Your help/advise/opinion is greatly appreciated. I have a young family (husband, 3.5 year old son and 10 month old son) I'm fighting for.
Have you heard of the rgcc test? Do you think that would be beneficial?