Before I get started, I have been receiving emails and comments defending glucosamine.
I understand! I had been taking glucosamine for years. It helped my knee pain improve measurably. But Danny Parker convinced me to drop-it-off my long–and now shrinking–supplement list.
Danny emailed me several times yesterday. Allow me to share a few of his thoughts:
Pat-
Here is the reference which sounds ominous to me.
http://www.jbc.org/content/276/18/14728.full
“Because HA is a major component of the bone marrow extracellular matrix, these data support the idea that HA could play a major role in the survival and proliferation of myeloma cells in vivo. “
Read this, too:
http://natmednews.blogspot.com/2011/11/1.html
Glucosamine may help with a beautiful complexion and keeping tendons youthful, but I don’t recommend it.
Fair enough. Before we move-on to supplements which can actually help Velcade (and Revlimid, too!) work better, Danny has compiled a list of supplements that myeloma patients should consider avoiding:
– EGCT or Green tea during Velcade treatment
– L-glutamine immediately after SCT
– Alpha Lipoic acid
– Hyaluronic acid
– L-glutamine
– Glucosamine
– Alpha Lipoic acid
I would add any concentrated antioxidant supplement to the list–but Danny and I don’t agree about that.
Here is a list of supplements with clinical data showing that they may help arrest myeloma proliferation or help conventional myeloma therapies to work better. However, only take these with caution:
– Curcumin
– Pterostilbene
– Ursolic acid
– Resveratrol
– Black seed cumin
– Papain
– DHEA
– Fish oil
In my opinion, curcumin and ursolic acid are the two “must take” supplements for most any myeloma patient; ursolic acid for those of us currently undergoing active therapy and curcumin for all.
But Danny reminds us to “only take supplements where your doctor is informed of your actions, and only add supplements singly and slowly to see if there are any problems with tolerance, with CBCs etc. Always be cautious!”
I think that we have added enough disclaimers for one day! But you get the idea.
This is destined to be an ongoing thread, so stay tuned for periodic updates. And please don’t hesitate to jump-in with questions or comments!
In the end, all of this may do little more than help us feel that we have some control over our cancer. That alone may be worth the price we pay for all of the capsules, pills and potions.
Feel good and keep smiling! Pat
August 28th, 2012 at 11:50 am
Steve can’t take curcumin while on the MLN 970 study. His numbers keep going down slightly and everthing else is good everytime he is checked but he hates the chemo–especially the steroids–so much that he is talking transplant to get off of them. My thoughts are if he could take the curcumin, the Velcade woulld work better and his numbers would drop faster and he would feel better but i do understand that when on a study, they want to see how the study is working without the help of curcumin. Also after a transplant you still are on chemo so why have one even though I do know that the chemo works better after the transplant but maybe he would do just as well adding curcumin back in because that has always been so good for him. He is going to Italy for two weeks and wants to be off all chemo. One week is his normal week off but he wants to take another week along with that. He should definately take the curcumin then —that is if his doctor alows him to take the extra week off. I need to know what you think about all of this. Mikie
August 28th, 2012 at 12:04 pm
Thanks for reminding me, Mikie! Most clinical trials do not allow use of supplements while a patient is on a study for obvious reasons. I should have mentioned that.
I used to feel that way about SCTs. Why bother if you are going to need maintenance anyway? But I would not be on maintenance if my numbers would have been better following my SCT. I didn’t have a choice – the SCT didn’t work well. I was a perfect candidate and it should have dropped my numbers like a stone. But it did hit the “re-set” button and Revlimid seems to be working again for me.
Steve definitely should not use curcumin while on the study – even when traveling to Italy. Let me know what the doctors say about him taking an extra week off…
August 28th, 2012 at 2:01 pm
Pat: This is that squeaky wheel. You can’t even discuss supplements without discussing the dose (amount). Some patients can tolerate a lot…some a little.
There are no “average” patients and the discussion seems to focus on this non existent population. To decide on the utility of a supplement you kneed to know the “therapeutic” window; the amount below which there is no benefit and the amount above which you affect Velcade performance. Without this information you are blowing smoke. To get it requires money and patient advocates.
August 28th, 2012 at 2:13 pm
So as much as you hate to hear it, Gary, best we can do now is guess! In that case, should one skip all supplements? What are your thoughts?
August 28th, 2012 at 3:18 pm
Had an auto four years ago. Still in remission(or whatever they call it for MM). I take no supplements, except for Vit. D. in the winter. Not even a multivitamin. Have been on no maintenance chemo. Just had another great check up–so three more months of let the good times roll:)
I get lots of exercise, keep my weight correct, and don’t allow people around me that stress me.
I guess I am the control group:)
August 28th, 2012 at 4:45 pm
A reader who gets my posts through email just sent this to me:
Pat.
Thanks for the information.
But I do want to add that fish oil is good but big but it also thins out your blood. So please careful. And let other know if the are taking aspirin or any other blood thinner. Talk to there Doctor.
Karen
Here is my response:
I wasn’t aware of that, Karen. Adding it to my regimen didn’t seem to effect my INR, but there are other ways blood can be thinned, right? Thanks for the tip! I will make sure to share that!
August 28th, 2012 at 4:49 pm
JC-
Glad you are doing so well. And you are doing it right, if you ask me! Keep eating those berries and sprinkling lots of oregano on your whole grain pasta!
August 28th, 2012 at 8:02 pm
It’s tough to makes a decision without any data. But we
May have some subjective data. You always point out thaf you can
Tell your sensitivity to velcade. If you experience toxicities
Soon after velcade administration I would put you in the sensitive category and
Stay clear of supplements. However if toxicities are evident
Iwould use them.
However you forced me. There is really no substitute for two blood draws
To get individualized dosing information
August 28th, 2012 at 8:48 pm
SIGH! Readers, Gary and his research group have such a simple solution to help patients max the benefits–and limit the toxicities–of the drugs we take. “Individual dosing.” Some day, Gary, some day…
August 29th, 2012 at 9:20 am
Pat, great forum topic. Thanks for the kind words. I should add that I have choosen to go the no supplement route because MM caused major kidney damage in my case. While my kidneys are close to normal now, I don’t want to burden them with anything else to filter out. Several vitamins and supplements that are taken, if the body doesn’t need them, must be filtered out thru the kidneys. I did a short stint on dialysis, and I can tell you I protect my kidneys at all costs.
August 29th, 2012 at 9:53 am
No explanation necessary, JC. Choosing not to use a lot of these supplements may turn-out to be a wise decision by any measure; cost, risk of unexpected interaction with medications, the very real possibility that they don’t do much of anything…
August 30th, 2012 at 5:43 pm
Great post Pat. No more Glucosamine Chondroitin for Gary!
August 30th, 2012 at 10:21 pm
I missed it until I substituted the 2 gm ginger and 2 gm curcumin. Seemed to achieve same results…
September 1st, 2012 at 9:19 am
Late post here, but was wondering if anyone heard anything good or bad about taking vitamin D supplements. There is some evidence that D enhances your immune system, and for that reason, I have taken low-level supplements to keep up my ANC from dipping too low. Seems to have helped a bit in my case.
September 1st, 2012 at 2:52 pm
Hey Bob! News on vitamin D has been mixed lately. Of course helps with calcium absorption. But taking a lot of calcium along with it has been proven to significantly increase our risk of heart attack. AND little if any evidence that extra calcium helps our bones, either. Disappointing, since most of our docs are still recommending patients like me with bone damage take a lot of D and calcium. I can’t believe a bit of D will hurt – and it might help…
September 2nd, 2012 at 10:46 am
Thanks Pat! I saw similar coverage on that, and the article seemed to be more of an indictment on calcium and not on Vitamin D. So much for us to navigate, I’m afraid! Thank you for bringing up this important topic.
September 2nd, 2012 at 11:30 am
Yes, it was mostly about Calcium…
September 2nd, 2012 at 9:24 pm
Hi Pat,
Do you (or other commenters) have a recommendation for Ursolic acid brand? Normally I’ve been purchasing the Doctor’s Best brand, but they do not appear to carry Ursolic acid and there are a bunch of brands to choose from.
Thanks!
September 3rd, 2012 at 1:43 pm
I’m using E-Pharm brand. Believe capsules ordered through Amazon…
September 4th, 2012 at 8:17 pm
Thanks for the reply Pat,
Is that sold as Ursobolic and in a red and black container? I’m trying to make sure I’m getting the same product, and also can you comment on your dosage regimen? It’s sold as a diet drug so I’m hoping the 3-6 capsules 3 times a day is WAYYY more than you take. Trying to get my dad to take another handful of pills is not something I look forward to doing!
September 4th, 2012 at 11:40 pm
That’s the stuff! I just make sure I take one capsule with each Revlimid and before and after Velcade infusions. Danny may have a more specific suggestion…
November 10th, 2012 at 12:04 am
My husband was diagnosed with MM last May,2012.Hewas very fragile. RI doc put him onvelcade injectionweekly,zometa once a month and dex weekly. He tolerated treatment welland in August,his blood levels were good.quality of life,good.Then,the pharmacy made a mistakeand he was given a double dose of velcade by injection 12hourslater he was struck by violent, uncontrollable diarhea,vomiting,loss of vision,fell.He was hydrated multiple times in hosp. Got i more dose of velcade and then the double dose came to light.Now it is November, He has lost 20 lbsand has no stamina,feels crummy,discouraged. Blood pressure often low.We went to Dana Farber in Boston.Blood levels still good, he takes megace which has helped him to eat real food again. But he not gaining weight.Nice doctor at Dana Farber said the Velcade must have “wrecked his gut’ but those cells do regenerateand he would get well eventually. Said when he needs medicine again, try revlimid. We are staying in FLA in Gulfport in Dec until late January.Was hoping to contact Moffitand go there for any treatments,help,ideas.Can you recomend a doctor? Any Suggestions?
November 10th, 2012 at 12:23 am
That must be so hard for you–and your husband, Jackie. What a mess! A couple of things. I do know of patients that have violent reactions to Velcade. Its unfortunate, since most of us tolerate it pretty easily. Sounds like you are getting some good advice, although who wants to just “wait for things to get better?” But our guts do turn cells over quickly. But I would see a specialist. At Moffitt? Maybe. You may not want to wait that long. Call and ask to speak with a gastroenterologist. There are three myeloma specialists at Moffitt. Dr. Alsina, Dr. Baz and Dr. Shain. I like them all! I am helping organize a seminar for new patients there on January 28th. No cost to meet docs and decide which one you and your husband might want to work with. Get me your email and I will get you info. Best of luck!