Wednesday, April 13, 2016

The Alternative/Conventional Internal "Battle"

I know I will never get by all the skeptics, but I want to put something straight for those who think I'm "deciding to die" by doing alternative therapies (and think my husband should be "putting his foot down" and forcing me).

I am not willy nilly looking at people selling snake oil and impossible promises. I am researching -through NIH articles and other such reliable sources, as well as other doctors consultations and recommended web information -  BOTH conventional and alternative therapies. I have two oncologists. I have spoken with both of them. 

Conventional Options:

Stem Cell Transplant  - this is not a choice I will take. It NEVER has been. I have done immense amounts of research (We ALSO chose to not put our child through this treatment - we were told later it was a good thing because it WOULD NOT have worked). This is not a point of discussion. 

Brentuximamb and Vendotin - This is an approved drug that is a chimeric monoclonal antibody connected to a chemotherapy. This means that it is less toxic to healthy cells than normal chemo, but still comes with some side effects that are typical of chemotherapy and has the potential to induce other cancers later. This drug has been shown to put patients into SHORT TERM remissions (average is about 6-9 months - this is directly from data from my oncologist!) - and is often used as a prep for stem cell transplant. This is my emergency option as it is approved and I can be put on it within about 48 hours if I need to be, and it can be done by my home oncologist and hospital. 

Nivolumab and other PD-1 inhibitors - This is the ONLY conventional drug out there that I have any true interest and faith in. I am not a fan of the trial designs I have seen, nor am I qualified for many of them as I refuse to do a SCT. This drug still has some very dangerous side effects attached to it, and the trials have an overwhelming overuse of radiation containing scans that I am not in favor of. I have spoken to my oncologist at Dana Farber (the one who is in charge of these trials for Hodgkin's). This is the only drug that he recommends for me based on my history and beliefs. THERE IS NOT AN OPEN TRIAL FOR THESE DRUGS IN BOSTON CURRENTLY - THEY WILL OPEN SOME MORE IN 3-6 MONTHS. So there's that. It will be there down the line. This is NOT a non toxic therapy, although it is less toxic than any of the others currently available. It also has not been used on Hodgkin's for long enough to have "cure rate" statistics - though it is showing promising remissions in many many patients. (to my knowledge of personal acquaintances - the longest I have heard was 1 year 8 months and going strong). 

Alternative Options:

Tong Ren - Based in traditional chinese medicine, and with a focus on cancer as a metabolic disease (which it is) and a blockage of bioelectricity transferring properly through the body, this is the treatment that has been keeping me going for the past 2 years. The practitioners have been practicing this system for over 25 (if not over 30) years and have had amazing success with many many many many cancer patients. (I watched a girl with DIPG - a tumor that has a 0% cure rate with conventional therapy - get better in two months and start going back to her normal life!) There are patients there who should have died ten years ago (in fact one was saying that he is the ONLY person with his sarcoma left alive since he was diagnosed 10 years ago compared to his oncologists other patients who did chemo). A doctor who now works at Tufts University - Dr. Michael Levin (who was healed as a child by Tom Tam, the director and creator of the Tong Ren system) - is now putting this into true study on cancer. He is about 20 years behind what Tom is doing at his centers.

Hyperthermia - Hyperthermia (which means “elevated temperature”) destroys cancer cells by raising the tumor temperature to a “high fever” range, similar to the way the body uses fever naturally when combating other conditions. In the US, this is FDA approved for some cancers to be done in conjunction with other conventional therapies to increase their effectiveness. In alternative centers it is used by itself as well as in conjunction with other anti-cancer treatments. It can also have a synergistic action with a Ketogenic diet as it increases the ketones in the body.

Ketogenic Diet - A very low-carbohydrate, high-fat, adequate protein diet. Properly administered, it will decrease circulating glucose and increase ketone bodies, which are a good alternative source for fuel in our bodies and are produced when the liver breaks down fat. The goal is to starve the cancer of it's preferred fuel source, glucose. Cancer cells cannot metabolize ketones for fuel.

Cannabis Oil - Marijuana in oncology may have potential for use as an antiemetic, for refractory cancer pain, and as an antitumor agent. However, much of the data are based on animal data, small trials, or are outdated. Only recently has cannabis become legal in many states, and it still is not completely cleared at the federal level. This (in my opinion) inhibits medical studies. Other information and studies I have found are using SYNTHETIC and derived individual cannabinoids, rather than whole plant or oil derived from whole plant, which (in my opinion) defeats the purpose of studying as synergistic effects of the over 80 cannabinoids found in marijuana will have much to do with its effectiveness and anti-tumor actions. It is proven to help with tumor pain and appetite stimulation - two things that are beneficial to any cancer patient (although much of my pain is gone, I could use to eat more most of the time). There are many groups who have seen evidence of anti-tumor effects in their members and patients.

Massage - We all know that stress can be a major contributor to cancer growth and that reduction of stress is a huge component to healing. I don't think I need to post any articles on this one. Massage = relaxation = lower stress. Enough said. 

I am sharing this in an effort to explain to those I don't speak with often what I am doing and why and how I have come to my decisions. It's not about debating evidence, or seeking advice, it's about sharing my pathway on this journey and allowing others to understand my footsteps. Thank you to everyone who has continued to support our family through this time. We are truly grateful and love you all. 

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