› Forums › General Melanoma Community › Unconventional medication whilst on clinical trials
- This topic has 10 replies, 4 voices, and was last updated 12 years, 9 months ago by
shellebrownies.
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- July 11, 2011 at 10:18 am
Hi,
I have recently been diagnosed with stage IV melanoma, mets in brain and smaller ones thoughout my body. Today I learned I was BRAF positive, so will hopefully be joiing a BRAF inhibitor trial starting early next week.
On reading the documentation for the study, I learned I could not eat grapefruit or oranges etc, must avoid herbal supplements (curcumin, geistein EGCG etc.). Does anyone know why this is? I could possibly imagine some reasons. I was thinking of doing IV vitamin C, though this obviously rules this out.
Hi,
I have recently been diagnosed with stage IV melanoma, mets in brain and smaller ones thoughout my body. Today I learned I was BRAF positive, so will hopefully be joiing a BRAF inhibitor trial starting early next week.
On reading the documentation for the study, I learned I could not eat grapefruit or oranges etc, must avoid herbal supplements (curcumin, geistein EGCG etc.). Does anyone know why this is? I could possibly imagine some reasons. I was thinking of doing IV vitamin C, though this obviously rules this out.
I would love to know if it is indeed harmful to be taking supplementation while on the trial.
Thank you for your help,
Ben.
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- July 11, 2011 at 10:56 am
I think it has to do with the absorption rate of the medication (at least for the citrus fruit) or an interaction. I know about 2 years ago when the first b-raf trials came out they had different arms. I believe on one you could have the fruits and the other you could not. It's just like on many of the cholesteral medications you cannot have grapefruit juice or grapefruits.
If your going to be in a clinical trial you have to follow their rules. They are trying to determine the safest way to give the medications. Different supplements actually carry different amounts of the herbs. They are not FDA regulated. You could cause yourself harm.
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- July 11, 2011 at 10:56 am
I think it has to do with the absorption rate of the medication (at least for the citrus fruit) or an interaction. I know about 2 years ago when the first b-raf trials came out they had different arms. I believe on one you could have the fruits and the other you could not. It's just like on many of the cholesteral medications you cannot have grapefruit juice or grapefruits.
If your going to be in a clinical trial you have to follow their rules. They are trying to determine the safest way to give the medications. Different supplements actually carry different amounts of the herbs. They are not FDA regulated. You could cause yourself harm.
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- July 11, 2011 at 10:56 am
Hi Ben,
First let me say, I'm sorry you've been diagnosed with this beast, but it's good to hear you are BRAF positive.
I took a boatload of vitamins and supplements when I was diagnosed – curcumin, EGCG, Inositol, green drinks and regular high dose vitamins. When I started dacarbazine 4 weeks ago, I had to stop everything because they simply don't know how it will interfere with the medicine since most have never been tested. Vitamin C actually protects cancer cells while on chemo. Green Tea and Curcumin can cause bleeding and pass through the liver (where most drugs pass through first). My naturopath said I could take everything still, except Curcumin and Green Tea, but my oncologist said he wouldn't care if I took a multi vitamin – just no high dose regimens.
It sucks because we know Melanoma needs a strong immune system, however, I'd rather the drug work then me cause a reason for it not to.
Talk to your Dr before you start eliminating or taking any supplements. Because these BRAF drugs are very new and under experiments, you don't want to be the human guinea pig headed for disaster.
All the best to you!
Lisa – Stage 4 lung mets.
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- July 11, 2011 at 11:29 am
Thank you very much for your reply Lisa.
I am (was) in a simlar boat to you re taking a lot of supplements etc., anything that showed some small promise of slowing disease progression. It is definitely not my intention to do myself harm or compromise the efficacy of the treatment! I was just wondering if the reasons for the exclusion of supplements while on BRAF inhibitors are well known or is due to being prudent.
Thanks again and good luck!
Ben.
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- July 11, 2011 at 12:30 pm
My naturopath said she hopes one day that oncologists and naturopaths can work together, but who knows because they both have very different opinions. Most oncologists don't believe any of the supplements, etc will do much good, but I don't fully believe that theory. Like you, I was trying to slow the cancer from coming back, but it didn't work. It's not to say that it didn't work at all, because it could have been worse.
Oncologists obviously don't want to be liable for something that could go wrong.
We'll both beat this Ben!
Lisa
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- July 11, 2011 at 12:30 pm
My naturopath said she hopes one day that oncologists and naturopaths can work together, but who knows because they both have very different opinions. Most oncologists don't believe any of the supplements, etc will do much good, but I don't fully believe that theory. Like you, I was trying to slow the cancer from coming back, but it didn't work. It's not to say that it didn't work at all, because it could have been worse.
Oncologists obviously don't want to be liable for something that could go wrong.
We'll both beat this Ben!
Lisa
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- July 11, 2011 at 11:29 am
Thank you very much for your reply Lisa.
I am (was) in a simlar boat to you re taking a lot of supplements etc., anything that showed some small promise of slowing disease progression. It is definitely not my intention to do myself harm or compromise the efficacy of the treatment! I was just wondering if the reasons for the exclusion of supplements while on BRAF inhibitors are well known or is due to being prudent.
Thanks again and good luck!
Ben.
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- July 11, 2011 at 10:56 am
Hi Ben,
First let me say, I'm sorry you've been diagnosed with this beast, but it's good to hear you are BRAF positive.
I took a boatload of vitamins and supplements when I was diagnosed – curcumin, EGCG, Inositol, green drinks and regular high dose vitamins. When I started dacarbazine 4 weeks ago, I had to stop everything because they simply don't know how it will interfere with the medicine since most have never been tested. Vitamin C actually protects cancer cells while on chemo. Green Tea and Curcumin can cause bleeding and pass through the liver (where most drugs pass through first). My naturopath said I could take everything still, except Curcumin and Green Tea, but my oncologist said he wouldn't care if I took a multi vitamin – just no high dose regimens.
It sucks because we know Melanoma needs a strong immune system, however, I'd rather the drug work then me cause a reason for it not to.
Talk to your Dr before you start eliminating or taking any supplements. Because these BRAF drugs are very new and under experiments, you don't want to be the human guinea pig headed for disaster.
All the best to you!
Lisa – Stage 4 lung mets.
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- July 11, 2011 at 12:38 pm
I know that specifically grapefruit is bad because it causes other medicines to be absorbed more than norm (creating possible overdose scenarios) and dissipate quicker, affecting its effectiveness. Supplements in general do not have FDA approval for some of their uses, so there is less control on dosing and effectiveness from brand to brand or even batch to batch in some cases.
In a study, their goal is to keep as many variables as possible the same, so I could understand why they would want you to discontinue anything that they are not sure about interacting with.
Michelle, wife of Don
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- July 11, 2011 at 12:38 pm
I know that specifically grapefruit is bad because it causes other medicines to be absorbed more than norm (creating possible overdose scenarios) and dissipate quicker, affecting its effectiveness. Supplements in general do not have FDA approval for some of their uses, so there is less control on dosing and effectiveness from brand to brand or even batch to batch in some cases.
In a study, their goal is to keep as many variables as possible the same, so I could understand why they would want you to discontinue anything that they are not sure about interacting with.
Michelle, wife of Don
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