Supplements for gbm

[GBMsibling]

A while back I promised to post a list of supplements my sister is taking. Sorry it's taken me so long. Ordinarily this list would go in the complementary meds forum, but I have administrator permission to post it here since it's really specific to glioblastoma.

Before I post it, a few cautions, especially for the lurkers:

1. The things I'm going to list are legal over-the-counter in the US. They may not be legal in other countries, or may require a prescription.

2. It's very, very important to consult your neuro-oncologist and any other doctor currently treating your GBM (radiation oncologist, for example). Give him or her the names of the supplements and the dosages.

3. Don't start taking a bunch of new things all at once. Add only one new supplement a week to your regimen. Be on the lookout for side effects. Supplements can also interact with each other or with the drugs you're taking.

4. Research before you buy. Look the supplement up online; make sure it won't aggravate any other conditions you may have.

[GBMsibling]

Okay, here's the list. For the most part the dosage has been 2 capsules of whatever's in the bottle. For those that come as a powder, we put them in applesauce which she has before meals.

Almost all of the items on this list were selected by my brother, some of them based on growth factors expressed in my sister’s tumor, which is (probably) a mesenchymal subtype, associated with NF1 (neurofibromatosis type 1, a fairly common genetic disorder).


apigenin (comes from grapefruits)
boswellia
curcumin (turmeric)
quercetin (supposed to slow down cell replication)
genistein (soy isoflavones) (he says do *not* take this if you have breast cancer)
astaxanthin (vitamin A that crosses blood-brain barrier)
bromelain (supposed to increase permeability of blood-brain barrier)
berberine (absolutely do *not* take if pregnant—can cause birth defects)
silibinin (milk thistle)
EGCG (green tea extract) (do *not* take if taking Brotezomib, or if you have leukemia)
PSK versicolor turkeytail mushroom
reishi red mushroom
sulforaphane (broccoli sprouts in a pill)
papain
melatonin (there's research to support 20 mg of melatonin a day in GBM patients, but some suggestion it may cause seizures)
grape seed
resveratrol
inositol hexaphosphate (the non-toxic DCA substitute)
borage oil
algae fish oil replacement (can use fish oil instead; much cheaper)
selenium (has been shown to increase risk of prostate cancer in men)
ginkgo biloba (may cause seizures, see chiarosel's post below)
folic acid
vitamin C
flax seed oil

I'm not offering this as a cure, of course. It isn't. What happened in my sister's case is that growth rate of her tumor slowed significantly when the doctors expected it to accelerate, and this correlates with the time she started taking most of the supplements (those nearer the top of the list). Correlation doesn't indicate causality, there could be other explanations, your mileage may vary, consult your doctor, etc.

Edited to add: This is along with Avastin.

Edited again to add:

We discontinued the gingko after Chiarosel pointed out the seizure risk. I googled this and s/he's quite right.

NikosF posted this link in another thread, great resource for researching herbals and interactions:

http://www.mskcc.org/cancer-care/int...other-products

[NikosF]

Thank you!

[GBMsibling]

You're welcome; sorry it took me so long!

[Lboy]

After the 30 days of chemo/radio for GBM 4 I gave my wife the following daily:

Evening primrose or borage seed oil (high in linoleic acids)

Omega 3 fish oils (cod liver oil or similar)

Maitake mushroom extract (high in the polysaccharide krestin)

Milk thistle tablets

Vitamin D3

Also soya milk and green tea as part of diet.

All recommended by Ben Williams, and supported by our NO, whose hospital was planning a clinical trial on micronutrients . Point is, even if the above do no good, they won't do any harm, not a bad idea for healthy people to take them

In the subsequent two months her (inoperable) tumour shrank, then she got pneumonia from lowered immune system (from the chemo, not the supplements!), stopped supplements when in hospital and on strong antibiotics. Tumour came back, strongly.

Coincidence? Perhaps, given that the next round of Temodal had to be postponed as well, but who knows. Fight the beast with all weapons, as the tumour cells adapt to single weapons so readily.

[GBMsibling]

Fight the beast with all weapons, as the tumour cells adapt to single weapons so readily.

Yes they do. And I suspect the cells overcome the supplements, in time, just as they overcome the drugs. I just wish there'd be more research done on this. But there's not much money for it. Glad to hear your N-O's hospital's getting involved in it.

Our N-O has just been nodding along with my brother, but after the last MRI he did get interested.

Thanks for sharing your wife's regimen.

[Chiarosel]

I read an article that said that you have to be careful with some of the herbals if you are taking anti-seizure meds. Some of the ones specifically mentioned were evening primrose and ginkgo because they can induce seizure activity. It was from the Journal of Neuroscience Nursing by Kristen Smith titled The Management of Seizures in Brain Tumor Patients. Since my NO has put my on AEDs for life, I figured I'd better read up on what to expect and what to avoid.

Chiaro

[GBMsibling]

Thank you. I'll edit my list to reflect that info.

[urstar_2]

FYI, there are a few more supplements that 10-year GBM survivor Rebecca Libutti tried and mentioned in her book called This is Unacceptable.

aloe vera juice
acidophilus/bifidophilis (for calming stomach)

liquid chlorophyll (build up blood)
super vitamin C (7 different subtypes of C)
multivitamin
essiac tea
shark cartilarge

[ChemoMan]

Hi

Essiac tea has been investigated by the US FDA, the ACS and NCI and it has been found to be ineffective. The FDA described essiac as a fake cancer cure that should be avoided.

Re Shark cartilage the theory behind this is that Sharks do not get cancer. The only problem is they do !

Good luck