Dear Lynn-

Welcome to beating-myeloma.org.  In response to your post:

"I am interested in taking this supplement but worry about the immune
factor with MM as in boosting the immune system could also boost the
production of more MM cells.  I tried curcumin and it helpd my MM
numbers but I am near kidney failure and when I was taking the curcumin
my kidney numbers got worse. "

The question of whether antioxidants or immune stimulating supplements help or hurt mm growth is heatedly debated. No one has a definitive answer.

Personally, I supplement with coQ10 and curcumin (in addition to a bunch of other supplements) and I have been in complete remission since 4/99. My kidney function tests normally and my freelight chain numbers are in the normal range.  David

I took coQ10 for years, probably even before MGUS diagnoses, to protect the heart from side effects of statin drugs (taken for cholesterol). Statins are known to deplete coQ10. In the years of MGUS testing the coQ10 alone did not stop the climb of m-spike. I have now stopped taking it. I don't recall details of medical literature very well , but it was something about protectiing the cell membrane that is good for the good cells but also happens in the cancer cells. Don't take that comment as advice not to take the coQ10, just my opinion and experience. I don't think that it was hurting or helping the MGUS, maybe was helping protect my heart. It may be good taken along with other supplements.

I read that adding fish oil or flax oil, 2000 mg daily, half in am and pm is good, maybe more if tolerated. I mention this because I was reading a research document last night that this is also beneficial to the kidneys. Again that was one document, no proof. Any comments from others? I am also convinced that the flax oil straightened out some high enzyme problems with my liver (along with occasional milk thistle supplement).

Linda from NC

I actually have a question on both. I was recently diagnosed and have started both supplements. I was taking the Curumin in the capsule form along with a capsule of flaxseed oil. Along with that I've been taking 300mg of COQ10 a day. However, how much should I be taking of COQ10? Also after my last blood test my numbers did not go the way they were supposed to. I've recently read that I should be taking the Curcumin in powder form and put in a liquid such as water or milk? Does anyone have any suggestions for me?

Tania

Lisa-

My coq10 brand is Life Extension Foundation.

It looks to me that the holding pattern that your husband is in looks pretty good.  You seem to be having modest success working with your onc as I see that your thal dose has come down from 200 to 100 mg per day. Are you winning your onc over?!

Here's hoping that you can continue to lower the daily dose of both thal and dex. There is a good chance that the lower the dose, the fewer the site effects- while remaining in a good pr.

RE the CPS- the cps is currently off the site as we are upgrading the entire site- you can post your results even if you can't conclude specific cause and effects- current and prospective curcumin users like seeing what others are doing.  David 

David,

Unfortunately my husband has not felt comfortable
telling his doctor he reduced his Thal. And now that his M Spike
is very slightly up he feels even less comfortable. This is not what I
had in mind - I wanted him to use a lower dose but wanted full
disclosure with the doc. But, our doc is so difficult (and has been
verbally abusive, too) that it's a touchy matter. Meanwhile, I've been
doing more checking about the other doctor we considered who seemed
like a possible alternative - it sounds like his relationship skills
may be even worse than those of our current doc. Plus, it sounds like
his approach to dealing with patients and relaying information would
make my husband extremely nervous. So, I'm not pushing for a doctor
change at the moment. (I have continued to research, and it seems like
these two egomaniacs are the only real game in town. Alas.)

The
Dex is really doing a number on my husband. I think maybe he should try
a lower dose of Dex. He's using 40 mg for a four day pulse once a
month. It devastates him. Seems to me the effects are worse every
month. It is also affecting his vision although so far his vision does
clear a few days after getting the Dex out of his system. And, either
Dex or Thal is affecting his hearing.

An odd note - he
finds going barefoot helps counter the muscle wasting of Dex. He says
something about stimulating the tiny muscles in his feet seems to help
his leg muscles recover.

Lisa

Thanks so much, David. I do feel wierd to be in this situation. But it's definitely not a normal situation

We
are waiting for MRI results at the moment, but verbal results indicate
that the lytic lesions my husband had on his spine may have disappeared.

i'm currently trying to figure out what next. things are ok, but the anxiety is there.

 Does
it (the anxiety) ever go away? I guess this is a question for any
longer-term MMers or caregivers. How does one live with this anxiety? I
have to say, sometimes I think it affects me (as caregiver) more than
it does my husband (as survivor). 

Lisa