From Keneisha:
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?
Hi Keneisha,
We are very glad that our book has helped you to gather strength for the fight ahead.
"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?"
How many mutations a tumor has seems to affect how well checkpoint inhibitors (eg - PD-1) work. But this is because tumors with more mutations are more likely to have naturally caused the generation of T cells that recognize the mutations.
Even if your immune system has not generated T cells to your cancer because your tumor has fewer mutations, that is not a problem, because you can try to make T cells against your tumor. Chapter 16 Table 3 lists out the various ways you can create T cells against the cancer. We prefer cryoablation (Chapter 11), but radiation is a more accessible way to generate T cells against the tumor (Chapter 11, section "Radiation: An Immunotherapy Accessible to All").
Another way to generate T cells against your tumor is by a cancer vaccine against a tumor antigen (marker), such as NY-ESO-1, or GD2, which are common markers found in some sarcomas. These markers are actively used in immunotherapy clinical trials to try to target certain cancers.
"Have you heard of the rgcc test? Do you think that would be beneficial?"
I have not heard about the RGCC test, so I can't comment meaningfully on it.
"Is there a doctor that specializes in low grade sarcomas that have metastasized?"
I don't know of an oncologist who specializes in low grade sarcomas that have metastasized, but I would recommend seeing oncologists in MD Anderson (Houston, TX) or Memorial Sloan Kettering (NYC), as they see many sarcoma patients, and they are actively opening immunotherapy trials for sarcoma patients. Dana Farber also sees more sarcoma patients than most hospitals, but I do not know how active their immunotherapy program is for sarcoma patients. So, if the Dana Farber oncologist doesn't have any immunotherapy clinical trial recommendations for you, don't be discouraged. You may need to look for clinical trials yourself, but there are resources to help --
"I'm not sure how to research and find the info I need. It's all so overwhelming."
Finding Immunotherapy Clinical Trials:
The Cancer Research Institute, the organization started by Helen Coley Nauts (daughter of Dr. William Coley), and guided by Dr. Lloyd Old, has a very good immunotherapy trial finder service. You fill in their questionnaire, then there is a person who talks with you on the phone about potential immunotherapy clinical trials. Do remember that sarcomas are very rare, so if there is a suitable immunotherapy trial, it may require travel to another state.
https://platform.emergingmed.com/find-clinical-trials/cri#partnerhome
What can be done now:
In Chapter 15, we describe how dietary changes can drastically affect tumors, and strengthen the immune system to attack cancer. There are 2 things that can be done, and these are the 2 things I've done for the past 3 years that I've been NED:
1) try to cut out as much sugars from your diet (Chapter 15, "In recent years, science has revealed")
2) decrease omega 6 fats from diet
One thing that easily can be done is to lower the omega 6 fat that you eat and drink everyday. If you do not have any bleeding risk or any upcoming surgical procedures, then you can add omega 3 fat supplementation (fish oil). Patient DH had metastatic sarcoma to his lungs (Chapter 15, section "Quenching the Fire with Fish Oil"), and the only things he did was to decrease the omega 6 fats to about 10g in his diet, and increase omega 3 fats to about 17g. I was even more desperate, taking 24g fish oil (EPA + DHA) and algae oil (DHA) daily at one point, while limiting my omega 6 to only 10g a day. I need to emphasize that high omega 3 can make blood less "sticky", so I do not recommend taking high omega 3 if you are due for a surgery or are on any medication that can cause bleeding.
The biggest culprits for omega 6 are:
1) cooking oils - such as soybean oil, cottonseed oil, corn oil, grapeseed oil, peanut oil
2) nuts and seeds - such as walnuts, peanuts, pecans, peanut butter, sunflower seeds
3) mayonnaise (made with soybean oil)
This is how you can figure out how much omega 6 you are taking everyday. Using this website (http://nutritiondata.self.com), you can find the food or drink you had, then make sure to change the setting to the appropriate serving size, then scroll down to "Fats & Fatty Acids", and find the amount of omega 6 in that food or drink. Write that down, then do the same for the next food/drink item. See how much omega 6 you take in a day, and how much omega 3 (fish oil) you'll need to take to counteract that. Ideally, following patient DH's example, he took more omega 3 (~17g) than omega 6 (10g).
Once you do this for a few days, you'll get a sense of which foods to avoid, and which foods are ok. It's hard in the beginning, but you'll find foods that work with the low omega 6 diet, and you won't need to calculate the omega 6 content of everything you eat anymore. I eat out now, but I make sure to compensate for the omega 6s by taking more omega 3s (fish oil).
What can be done for the 6 lung tumors:
We write about this scenario where we imagine what we would do if I had 5 lung tumors, see Chapter 15, section "What I Would Do If My Cancer Returns".
It's a lot of information, but I hope it will help in navigating immunotherapy for sarcomas.
Take care, Rene
Thank you Rene.
I found a place in Santa Fe Mexico who does cyroblation to tumors and then inject anti-ctla4 and anti-pd1 directly into the tumor. they also recommend approximately 3 months of systemic anti-pd-1 infusions for a lasting effect. I wanted to get your opinion on that. They are claiming an 83% cute rate.
Yes, the science does make sense -- to cryoablate, then inject the checkpoint inhibitors into the tumors, then do systemic PD-1. However, there are a few things you should check:
1) the experience of the doctor in cryoablating the area where the tumor is (how many times has he done it in that area, and how many times did the tumor return in that area?)
2) the experience of the doctor in injecting checkpoint inhibitors into tumors. How many patients has he treated with this, and what side effects did the patients have? This is very rarely done in the US.
3) the cost of the complete treatment. Off-label PD-1 for systemic infusion can be very expensive due to hospital mark-up.