My dad (age 64) was recently diagnosed with stage four GBM. We are still awaiting pathology information regarding MGMT, etc. He had a biopsy, but the tumor is inoperable at this time. He started chemo and radiation on Friday, but I want to start him on additional supplements and medications to improve his chances. I am sifting through the blog and more.
Could you outline your suggestions for first steps please? I have already ran into opposition with his neuro-oncologist, so I am frustrated and overwhelmed and looking for where to start.
I truly appreciate all of the information you have already made available.
Thank you.
Stephanie
Did you take multiple opinions, particularly from leading major hospitals about the surgery option. Why is it inoperable? how big is it? where is it located? The likes of UCSF, Duke, UCLA, etc will do the surgery that many local places won't. Click on the "cocktails_gbm" tag on the right side of this page and you will see what people are taking. Don't worry about Neuro-Oncologist. Get more than one in your area for consultations. More importantly, get a very cooperative primary doctor who can also work with you for different prescriptions as well as to manage his symptoms and side effects. Read through Stephen's website - http://astrocytomaoptions.com/radiation/
ReplyDeleteFeel free to email me on Jradadia@gmail.com if you need any help on herbs and supplements.
Thank you. I will be in touch.
DeleteHi Stephanie - you sound just like me :-) My Dad is 64, inoperable due to the area of the brain (speech). Here's what I started with: http://btcocktails.blogspot.ca/2015/09/updated-cocktail-63-yo-male-with-gbm.html Though I'm certain there are others on here much wiser than I am :-)
ReplyDeleteIf you ever want to chat I'm also a caretaker of a 60 something father. Hope you're doing OK.
xoxo Annie anniescates@gmail.com
Thank you, Annie. You are very kind.
DeleteStephanie,
ReplyDeleteI'm a newbie to this, my wife was diagnosed just 6 weeks ago. I'll share a few thoughts.
I wouldn't expect any licensed physician to endorse any alternative treatment. Just give the NO the opportunity to veto things you do, but veto for a reason, one hopes.
When fighting cancer, it's rare that a single modality can be expected to cure. This is especially true for gliomas, which are essentially incurable with surgery+radiation+chemo. New and adjunctive treatments hold promise, but we should all recognize that in using alternatives, we're all more or less flying by the seat of our pants. If they'd been adequately tested in controlled clinical trials, they wouldn't be "alternative," they'd be standard. Trying to sort out the wheat from the chaff among the alternative approaches is overwhelming.
But among the promising possibilities (and there are MANY), it would make sense to try to make use of this narrow window of time where he gets radiation+chemo in an intensive way. Some of the alternatives show some sign that they may work additively (or synergistically) with radiation and/or chemo. Adding these ASAP may be especially important.
I might put #1 as a ketogenic diet:
http://www.ncbi.nlm.nih.gov/pubmed/26180675
I might put #2 as curcumin/turmeric:
http://www.ncbi.nlm.nih.gov/pubmed/26637846
There's a massive body of literature on curcumin and cancer--it's really very promising.
The "longvida" brand of curcumin seems pretty clearly to have far better absorption than other supplement types. Note, however, that curcumin is NOT the only componenet of turmeric with anti-tumor properties. I'd recommend both whole turmeric AND a longvida curcumin, used together.
I might put #3 as Vitamin D:
http://www.ncbi.nlm.nih.gov/pubmed/11349882
An aspirin a day may merit discussion here. I'm impressed by the laboratory findings of aspirin in glioma. Too much may be counter-productive. An enteric-coated baby or regular aspirin may be worth considering. It may also help prevent blood clots, which glioma patients are especially prone to. HOWEVER, aspirin can promote bleeding, and gliomas can bleed, fatally. I'd discuss this option with the NO, in relaton to real medical risks/benefits. My wife is on an enteric-coated regular aspirin daily (with NO approval).
There are non-aspirin salicylates that don't have strong anti-platelet activity (OTC Doan's pills, e.g.). This topic also relates to the value of NSAIDs and COX2 inhibitors (like celebrex).
Note that plain old tylenol seems to sensitize glioma cells to radiation, a finding I've not seen much discussion of:
http://www.ncbi.nlm.nih.gov/pubmed/?term=glioma+acetaminophen+radiation
My wife takes 1000 mg of tylenol along with the temozolomide, an hour before radiation Tx.
I believe there are many other agents that may have additive effect with radiation/chemo, but these are the ones that I'm most immediately familiar with.
Best wishes,
Steve C
The problem with most in vitro studies is that they test drugs at far higher concentrations than can be achieved in vivo. This applies to at least 95% of all in vitro cancer studies that see publication, I would estimate. Some of the worst offenders are publishing studies showing "promising" results with drugs tested at 1000-fold or more higher concentrations than are achievable in the body. With acetaminophen I'd say 100 micromolar would be a generous estimate for what is achievable in plasma, based on the pharmacokinetic studies I could find, less than the 500 micromolar used in this study combined with radiation. In most cases, in vivo evidence is far more convincing than in vitro. Another interesting in vivo study supporting acetaminophen (though not combined with radiation in this study):
Deletehttp://www.ncbi.nlm.nih.gov/pubmed/26508095
I uploaded the above study to folder 2 of the Library.
Deletethank you so much.
DeleteAs you start to build our your tailor-made cocktail, I personally found this page particularly helpful: http://btcocktails.blogspot.com/p/w-hat-has-come-to-be-known-as-drug.html
ReplyDeleteJinesh already provided this link to a page I compiled on Astrocytoma Options:
ReplyDeletehttp://astrocytomaoptions.com/radiation/
I recently divided this evidence into human, and rodent evidence. As discussed on that page, some kind of COX-2 inhibitor (most folks are using Celebrex) is important, as the increased production of prostaglandin E2 (which requires the COX-2 enzyme) is one of the major ways the tumor responds to radiation treatment.
Note that mixing of Celebrex with a non-selective COX inhibitor like aspirin probably isn't advisable due to increased risk for damage to the gastrointestinal lining. I usually advise choosing one or the other, but not both.
ReplyDeleteHi Stephanie,
I agree with others' thoughts above and in hindsight, I wish I had been prescribed/advised to take Valproic Acid, Cannabis Oil (THC and CBD), pterostilbene, and melatonin during the radiation/chemo period.
Regards,
Mike B.
Hi Stephanie,
ReplyDeleteI know that you said that it is inoperable because it was in the speech area but have you had a 2nd opinion from a brain tumour centre? Would an awake craniotomy be of any use? There is also fluorescent dyes that can be used to highlight cancer cells enabling accurate resection. Not sure if this would be useful in your dad's case but worth checking out. Best wishes
I appreciate everyone's feedback and suggestions. It is tremendously helpful.
DeleteWe went to Dana Farber in Boston for a second opinion. They concur that it is inoperable at this time, but they say there is the chance/hope that it may be operable in the future, after treatment.