[ivanm]

Supplements Survey

by ivanm on Wed May 28, 2014 10:49 am

The topic of supplements have been discussed on multiple occasions here and is certainly prevalent on the Internet. However, I do not think the following has been done.

I would like to start a thread where people share their current chemo protocol and the supplements they are taking.

I don't expect some great scientific insight here into supplements, but considering that the topic is in absolute disarray and there is lack of comprehensive research on the issue with respect to multiple myeloma, this forum may be the best we can hope for.

In other words, patients' own experiences aiding other patients.

I realize that no patient is alike and so on and so forth, but people have to go on something. Considering that patient studies, particularly, on interference with chemo therapy, are few and between, again, I believe that sharing here may be as good as it gets. Obviously, the point is to have some insight in interference, utility, or no effect of specific supplement, or a group of supplements.

Here is my approach to supplements. I use kitchen sink with a grain of salt. I use supplements as to which there is some scientific research showing myeloma cell apoptosis. I will grasp for anything. I do not care if it is in vivo, in vitro and so on. I know, I know, but this is my approach. I try to simulate normal eating habits, i.e. take the supplements in moderate doses and randomly. I usually take breaks. Here is what I am on...

Current Myeloma Protocol - 15mg Revlimid (3 weeks on, 1 week off) + Baby Aspirin. On maintenance, soon to be 2 years. For now in CR, for over a year. Throughout period taking:

- Curcumin
- Black Seed
- Shiitake and Maitake Mushroom
- Shark Liver Oil Capsules
- Ashwagandha
- Fotostim (This is something out of Russia - developed post Chernobyl, which I think played a part in my myeloma problem)

* Considering adding Thunder God Vine extract per the several studies on Celastrol coming out of China. Considering also adding Hemp Oil per the various studies on CBD.

My observation - I have been on these for a long time. I do not have any negative side effects and I have not experienced any negative interference with the above mentioned Revlimid protocol. Obviously, my kitchen sink approach would not shed any specific light on whether any of these supplements work. A single one may, a combination of them may, or none of them may work. I do not know. I know that so far I am in CR on this specific regimen. That may, or may not change.

Good luck and please share your experiences. At least we may have some real life insight, albeit inconclusive, on interactions and what works and what doesn't.

[ivanm]

Re: Supplements Survey

by ivanm on Tue Oct 20, 2015 10:18 am

I wanted to bump this up. First time around nobody seemed to care to lay out their supplements protocol. To the supplements I listed above, I am adding honokiol. Beacon Staff, is there some way to add a thread or a sticky or something of the sort where patients could add their supplement protocols and describe their experiences? I don't know if it is just me, but I believe this would be beneficial. I'd not draw scientific inferences from those but at least it could tip other readers to supplements for which there might be myeloma studies (early stage or otherwise), but the readers are not aware of. Thanks.

[wvjim]

Re: Supplements Survey

by wvjim on Tue Oct 20, 2015 9:59 pm

Hi Ivanm,

I like your idea of sharing supplements the readers are using. I am just starting this battle with multiple myeloma, being diagnosed in July 2015. Am on Velcade, Revlimid, and dexa­metha­sone (VRD) three weeks on and one off. Supplements I am taking: curcumin, multivitamin, B12, D3, vitamin C, bicarbonate soda, fish oil, calcium, magnesium, potassium, and sometimes cinnamon caps. After taking all of these I can't eat for hours. Too full. Don't know if any of these helps but worth a try. Thanks everyone.

[ivanm]

Re: Supplements Survey

by ivanm on Wed Oct 21, 2015 10:23 am

Thanks Wvjim,

I forgot to mention that I also added IP6 recently and a few other things. So my full supplement kitchen-sink would look like this:

• Curcumin
• Black seed
• Shiitake and maitake Mushroom
• Shark liver oil capsules
• Ashwagandha
• Fotostim (This is something out of Russia - developed post Chernobyl, which I think played a part in my myeloma problem)
• IP6 (added a few months ago)
• Magnolia extract (90% honokiol+magnolol) (added last week)
• Calcium
• Probiotics (added in last few months)
• Colostrum (added in last few months)

This is a lot of supplements obviously. As I said originally, my approach has been one of random ingestion. In other words, I do not take all of these in one day. I may take one of these Monday, another on Tuesday and so on. Then, following Monday I may take something different. Usually I try to take at least one of these per week. So, sometimes I may take something in the morning and something different in the evening. Also, I should update that I am now on 10 mg Revlimid instead of the 15 mg maintenance I started on.

Good luck everyone.

[Bar-none]

Re: Supplements Survey

by Bar-none on Wed Oct 21, 2015 10:43 am

Hi,

Curcumin:

I take four of the 1 gram tablets of Doctor's Best C3 (Sabinsa) formula and one of the Myodyne 400 mg capsules (Longvida) twice daily. The morning dose is with 2 tablespoons of Barleans organic flax oil (and other meds), and the evening dose is taken with the 10 mg Revlimid.

Quercitin:

500 mg source natural twice daily.

Also, multivitamin, cranberry, calcium, vitamin D3.

Best! BN

[ivanm]

Re: Supplements Survey

by ivanm on Wed Oct 21, 2015 2:59 pm

Bar-none,

So here is a fine example. I personally had not heard of quercetin. I imagine you added it to your supplement protocol based on this study:

Y Ma et al, "Quercetin suppresses the proliferation of multiple myeloma cells by down-regulating IQ motif-containing GTPase activating protein 1 expression and extracellular signal-regulated kinase activation," Leukemia & Lymphoma, 2014 (abstract)

At one point I will probably stop adding supplements to my protocol because my list is getting too long and will start evaluating the ones I am using. I can replace maybe some of the ones I am using with supplements that have shown more promising results than others. In any event, now I have this quercetin on my list to look into.

Thanks once again.

[Bar-none]

Re: Supplements Survey

by Bar-none on Sun Nov 22, 2015 12:19 pm

Ivan,

This is definitely one of the benefits of this forum!

Recently I found myself researching supplements and stumbled on one that you mentioned, ashwagandha.

This one is definitely interesting, and I assume you have read the same studies I found.

How much do you take? What brand? Does it make you sleepy?

Thanks and best! BN

[Gingerbiscuit]

Re: Supplements Survey

by Gingerbiscuit on Mon Nov 23, 2015 6:31 pm

I am currently only at smoldering stage, diagnosed October 2014 (in England). I wanted to feel proactive in trying to keep the disease at bay for as long as possible, researching everything day and night for the first few months following diagnosis. Based on what I found and what others said they have taken, sometimes with success, I started taking this list of supplements:

Daily:

1000 mg curcumin with bioperine
1 IP6 with inositol
1 Pomi-T
750 mg cranberry
50 mg CoQ10

Alternate days:

500 mg red krill oil
100 mg resveratrol
1 multivitamin with iron
200 mg iron

And I drink green tea/white tea at least three times a day.

I have had blood testing since August 2014 (pre-diagnosis) every couple of months, and everything is roughly the same each time. So I'm going to keep on.

Thanks for the thread,
Helen