Alex-

Your post mentions so many issues that I am curious about I can only say to please keep us posted-

"  I will be getting my test results next week."

David

I was increasing my circumin to 3 grams when I started beaking out in the bend in my knees and elbows- just got hot enough for sweating here- I have stopped all circumin for the present and intend to go back to 1600 mg. after the breakout goes away. I believe it was coming out in my sweat and irritating my skin. It has been aout 5 days wwithout circumin and the rash is gone but I would classify it as a severe break out- small red bumps close together covering 3-4 inch patches, sort of like hives which I have never had. Anyone else have anything like this? My allergies have exploded since my diagnosis with MGUS and the accompanying neuropathy.

Hey Portlandrose, my friend, I just read a report online about curcumin side effects, which DO include hives or skin rashes (to my surprise). You are the first curcumin-taker in my acquaintance to report that side effect. I also just read that our body temperature can rise on high doses of curcumin (which 3 grams is not). Well, well, I learn something every day. I hope this rash side effect was just a fluke! I guess I am one of the luckier curcumin-takers (I say that while knocking on wood!), since I have had only good side effects. Margaret, Florence, Italy

I have started taking curcumin myself (I am a caregiver, not a MM person) in the hopes of harnessing its anti inflammatory power for a nasty back problem that has had me flat on the floor in agony for a few days. I started taking about 5 gms a day, without any buildup. When I hobbled into my doctor's office she commented on red blotches on my legs; i was in too much pain to pay much attention, but then today I noticed that I have red blotches on my chest area too. In the meantime I also took a few conventional drugs, and had a truly nasty reaction to one of them, but I suspect the rash is linked to the curcumin since the rash appeared before I took any other drugs. the rash doesn't bother me at all: doesn't itch or anything. I wouldn't have known it was there if I hadn't looked in the mirror.

Meanwhile, my husband has been taking 8 grams a day of curcumin without any side effects at all except positive ones. (Once we switched over to a decent brand of curcumin that was actually getting absorbed, he reported that his thalidomide side effects got less and almost disappeared).

Now here is something I could not do on the acor listwhat brand of curumin was it Lisa? I tried of curcumin from the Vitamin Shoppe, and the diarrhea from that brand was terrible. I have tried Turmeric Force, which does not have much curcumin. (There are probably other things in turmeric that are good beside the curcumin). I had not side effects from that brand, but to get the right amount of curcumonoids from that brand would just be too expensive. I am now using the brand used before in M.D. Anderson study, and it is better but I still have problems. I think it is in either the capsules themselves or the bioperine. I will eventually try the bulk brand with fat, and I do love avocado. But I hate to give this up, as it has very positive effects outside of diarrhea. If I were a consturction worker, I could probably not do this of course.
But at least to me, the small price that even such a large quantity as I use and the side effects are certainly better than crippling effect of PN. It is beyond me why anyone would choose lifelong and crippling PN over diarrhea, but I guess that is his or her choice.

I have been taking Doctor's Best for almost three years. No rash, no diarrhea. It comes with bioprene and is not that expensive. Hope this helps.

Mary Jo

Re brand: We are using Nutraceutical Sciences Institute brand from Vitacost (they don't ship to Cyprus so I have to have someone send it on to me). We started with plain turmeric extract with Bioperine and next wil try the Curcumin C3 complex with bioperine.

Unrelated but possibly of interest to some: I put a clay poultice on my husband's back last night, at his surgery site (where the tumor is). He had been having a lot of pain in that area; he described it as bone pain. He suffered the clay pack somewhat resignedly; I think he was just thinking this was one more of my "ideas" (some of which he thinks hold water, others of which he doesn't!) But this morning he woke up to greatly reduced pain, so much that he was very glad to have me put another clay poultice on tonight.

I was very interested in learning more about Joe's brief comment in his post of reading about combining feverfew and curcumin. I'll list precautions I found, but I'm going to add it to my supplements for now, starting at low dose. I even somehow had an unopened bottle of organic feverfew, possibly bought on sale recently. I found this article, old but related to topic
http://www.denvernaturopa...
In search of the many sites regarding interactions... you do have to be careful with feverfew if allergic to plants, like ragweed, etc., possible same allergic reaction. And also be careful to take if platelets are low. ///////I think the in the same link that Joe gave groupekurosawa.com, also mentioned the anti cancer benefit feverfew with SULINDAC, (Class: Nonsteroidal Anti-inflammatory, NSAID, Risk Factor: B*, sulindac alone). And if you search you will find complementary med sites that say not to take together, because of the bleeding and low platelet potential. And I'm sure Margaret already knew this, but found Pub Med links I think, about curcumin protecting the GI tract from the NSAID irritiation. I didn't find anything about taking all three together the feverfew, solindac, and curcumin, perhaps truly a low platelet and bleeding risk, all three together. So my plan is to add in low dose feverfew until its gone with current curcumin, then look for Bachelor Button plant seeds, the leaves the source of feverfew. ////////Also, found this resveratrol article being specific about MM in March 2007 Pub Med, maybe redundant for those of you who read the research frequently, but I thought good. There were more than 1800 research articles on resveratrol all the way up to June 2007. http://tinyurl.com/2eq2jj
Linda

Thanks, yes. I'm mixing my curcumin in 4% yogurt or cottage cheese or coconut milk, along with the flax oil or fish oil supplement; so will just also add the feverfew. This also keeps down stomach upset, I think. I'm not going to get more labs until Oct., so there's no way of knowing if helps for now, but will give me time to try the low dose first. I'm reading more of the research and makes my brain feel like about to implode. So anyone also interested in this topic please read the research for yourself (lots of it in the article in previous post and don't depend on what I'm getting out of it. What I am getting out of it so far is only from past few hours of reading. ///////Something else interesting found in re reading the article from the Denver Naturopath. (note: Parthenolide that is spoken of here, is the active part of the feverfew) Quotes from the research: " the effect of Feverfew on cancer cells is stopped by N-acetyl-cysteine (NAC) a nutritional supplement that increases glutathione levels. Patients using Feverfew should not take N-acetyl-cysteine or over emphasize supplements which increase glutathione levels. "N-acetylcysteine, a precursor of GSH synthesis, ...completely blocked parthenolide-induced apoptosis. On the contrary, pretreatment of buthionine sulfoximine, an inhibitor of GSH synthesis sensitized the cell to apoptosis. These data clearly demonstrate that the intracellular thiols and calcium equilibrium play a critical role in parthenolide-induced apoptotic cell death.".....
glutathione--- http://en.wikipedia.org/w...
///So, this is all overwhelming to try feverfew... but at least the research is out there to read and is interesting. A quick search of supplements which will increase Glutathione is Vit.C and selenium and Vit. B2 and the supplement mentioned above. http://tinyurl.com/ywxcqb So glutathione is a good thing normallly, but apparently not (according to this research) if trying feverfew for apoptosis of the cancer cell. Also, have to stop feverfew two weeks in advance of any surgery, even minor, due to anticoagulant effect.
whew...

I received my first bottle of carao today from Costa Rica. It says on the bottle it is delicious. I get someone must like a salad of coconut and old smelly socks--because that is what it tastes like.

I got my hemoglobin checked today be cause I felt terrible. I thought I was just imagining it. It was 7.0 actually, and I will be having a tranfusion tomorrow.

Most likely I will use Velcade, so I need to build up my hemoglobin before it cuts it down again.

I am unsure if maybe..I hate saying this..the things I have been doing have been responsible for such a swift drop in hemoglobin--from 8.9 to 7.0 in week and a half.

Hard to know, so I will do some research.

Alex
a.maas@cox.net

Joe,

I think you made several comments that may be incorrect. They may also be correct, but let us take a look at them. First, my oncologist had told me that synthetic erythropoetin (Epogen, procrit, and Aranesp) do not do much for mm patients in his experience. People from the acor list have said otherwise, but I have learned from the nurses at the infusion clinic that this may indeed be correct for at least some of us. Your hemoglobin might be exactly the same without the drugs. Also, if the supplements have caused my anemia, that is not necessarily bad. Velcade and Revlimid can do exactly the same thing. My greater worry is that the myeloma is causing the anemia.

Dr. Berenson is out of town for a month, so I will probably have to go forward without his advice, depending on numbers.

If I can talk my doctor into it (which usually I can), I will ask for Velcade at 1.5 mg/meters squared Body Surface Area, and thalidomide at a max of 50 mg every other day or 25 mg per day. The approved dose for Velcade is 1.3, but research reports have shown it to be more effective at higher doses. There is enough in a vial for an even higher dose, but that is enough. Someone on the acor list had alerted to me to her father's use of Velcade, which was similar. It seems that you can take it at a higher dose once a week without the hematological side effects, being reduced platelet counts and hemoglobin. Then you do not take the week off every two weeks. For other cancers, once a week is standard, but I do not know thd dose or the types of cancer. The thalidomide I have great hesitation about.
I just talked about it with my girlfriend, and she told me if I do ANY thalidomide she wants me on an antidepressant. I have no problem with that, but Zoloft never really seemed to help me much. I still have a full bottle. Maybe with curcumin resveratrol and vitamin D, the combination would put my numbers down. This time I would also be more careful about diet and stop smoking (I am just kidding about the smoking). Finally, I might ask to use Trisenox, which is arsenic trioxide, in a 3 pronged approach. I think the natural equivalent to Trisenox is pau d'arco, but it would take a lot of research to find out a pau d'arco supplement that comes from the right tree and does what you want, which is eseentially poison all your cells slightly.

About Vincent..I was not very impressed with what you sent me that he put out, and I doubt insurance would cover it. I have too many other expenses already. I will keep him in mind though.

I do not want to offend anyone by posting about this side effect of Carao, so I will just point you to this link
http://forum.bodybuilding... You or your mate (if you are a woman) may or may not want this side effect.

It seems that if this supplement works to build hemoglobin, it may do it without iron, but now I have seen conflicting reports. I found one research report from Nicaragua that says it does works for some people but not everyone.

I will have a whole lot of information about it eventually, and I will see if it works for me. I do not think ths erythropoetin shots work for me, and they are outrageously overpriced, (even though my insurance pays for them), so I think this is worth a shot. The ridiculous prices of these drugs is why the FDA is making a new policy, allowing these shots only for people whose anemia was caused by chemotherapy and not by cancer.

I emailed about a dozen mm specialists to try to influence this new policy , and, to my surprise, some were kind enough to write me back and agree. Dr. Richardson from Dana Farber was one example.

At any rate, you can see why I would be interested in this supplement.

God knows what would happen if I were to post about it on the acor list. Unlike resveratrol or curcumin, there is little information at all about it available in English.

Alex
a.maas@cox.net

Alex mentioned antidepressants...When my GP wrote me a prescription for zoloft recently (what can I say, my husband's diagnosis depressed me), I thought about it, and then did some research and found a book called The Mood Cure: Take Charge of Your Emotions in 24 Hours Using Food and Supplements. By Julia Ross. Essentially she says fish oil and amino acids will do the trick. As far as I can tell she is mostly right. The days I take my fish oil and various amino acids (and throw in a couple of curcumin capsules as well, unless we're running low, in which case my husband gets priority of course!)I feel much more stable. The days I forget about it (because I'm too busy running that blasted juicer, or driving to the other side of town trying to track down organic carrots) are the days I need to go hide in a closet somewhere so my kids don't see me losing it. Drugs have their place, but if something natural will do the trick, I'll always try that first.

I do not think I made myself clear about one thing Joe. But, you are right, it is impossible to sort it all out. What I meant was it could be that my myeloma is getting my hgb down and it is getting worse and worse. And the supplements are doing nothing. It could be that my hemoglobin is going down because the supplements are causing bone marrow suppression, but they are actually fighting the myeloma. Revlimid and Velcade both do exactly this. Or it could be-and this is not what I meant nor you, I know--that the supplements are causing my hgb level to drop and doing nothing against the myeloma. I find that really unlikely.
I will be going on Velcade,which will cause my hgb to drop more.I had the shots the last time, and the hgb dropped and dropped without a stop (a la Dr. Seuss). I do not think the shots worked at all, Sam,
even with green eggs and ham.
The smell of carao is quite disgusting, but it tastes a little better actually. I have found more and more about it, which I will post eventually.