Today I’m publishing three blog reader queries that were posted on my blog’s Facebook page. Ah, for those who don’t know: yes, my blog is on Facebook (when you’re on Facebook, simply look up Margaret’s Corner, smoldering myeloma…I have a link here on the blog, too…look on the right).
Anyway, I thought perhaps some of you could help out. Here are the salient points (I did some editing/summarizing):
1) Hi Margaret, I have had MGUS since 2008. I didn’t really take much notice of this diagnosis only having to attend yearly appointments until recently. Unfortunately my paraproteins have increased rapidly and I’ve been upgraded to smouldering! I am only 49 and finding it hard to get my head around it all. I am being considered for a trial of Siltuximab (anti – IL 6 monoclonal antibody); have you or any of your followers got any views about being part of a trial? I would be most grateful for your thoughts.
Has anybody here participated in a monoclonal antibody trial?
2) The second blog reader wanted to “meet” someone who might have some experience with kidney cancer and curcumin. His 40-year-old cousin had one of his kidneys removed five years ago. Unfortunately, the cancer seems to have returned now. This blog reader would therefore like to find out if curcumin might help in this situation. I don’t know much, if anything, about kidney cancer, and that is why I am turning to you guys…Can you help?
3) This blog reader became scared and depressed after reading about myeloma online…all the statistics and so on. I think many of us have BEEN THERE, so we can relate, unfortunately. She wrote that she tries to be optimistic, but at times it’s hard (that part comes after the “it was a big relief for us”). Here are a few excerpts from two of her messages:
My mom was diagnosed with SMM a couple of months ago. […] It was the most difficult moment in my life. We were left then with only two options: it’s either SMM or myeloma. So when we finally got the diagnosis of SMM, it was a big relief for us. […]
I just want someone to hug me and say that everything is going to be ok….
In a second message, she asks a question (which I have already answered, but it would be great for others to help, if possible):
Dear myeloma experts, I need your knowledge! We just got the first set of lab results since the diagnosis. The m-spike hasn’t changed, but the total IgG is up. Is it good or bad? It seems to me that if the m-spike hasn’t changed and the total IgG is up, then the “good” IgGs are up… Am I right? Thanks!
Thanks (in advance) for any and all comments!!! 🙂
Hi Margaret, I tried to participate in the Novartis DKK-1 antibody study at Moffitt but did not qualify because of low progression probability and low Beta 2 Microglobulin. Thinking that the trial of an antibody does not involve introduction of foreign toxic chemicals into my system, and reading about other antibody trials that indicate few side-effects, I concluded that there was little downside risk and a huge potential upside benefit. There is a member in one of these groups who is in that DKK-1 trial and his input would also be valuable.
Don’t know anything about curcumin and kidney cancer. Expecting a tumorous cancer as opposed to our blood cancers, I’d be inclined to research anti-angiogenesis foods and supplements.
For the 3rd question, I can only give a layman’s view based on the stuff I’ve read. My understanding is that I am IgG because my mutated stem cells produce only IgG antibodies. My normal stem cells continue to produce normal levels of antibodies, including IgG. A rise in the IgG number may be due to some infection or it may be due to an increase in mutated cells.
My interpretation of the m-spike is that it can indicate how many of the antibodies produced are totally identical, meaning they come from the same cancerous mutated monoclonal stem cells. If the m-spike is increasing then more aberrant cells are producing antibodies, so maybe in this case the steady m-spike indicates that the rise in IgG was a normal bodily response and not caused by an increase in the cancer.
I’m not a medical person, so confirmation or correction to my thoughts is welcome. Still learning something new every day.
My m-spike varies between 1.0 and 1.5 g/dL. My IgG varies from 1376 to 1673. Sometimes knowing how others read can help put better perspective on our readings.
Hi Margaret,
I might be able to help with the 3rd question because it confused me for some time. In good health we produce a range of antibodies. However, when we have MGUS/MM a large proportion are of one type (monoclonal – bad guys).
When I was first diagnosed in 2005 they simply measured total IgG but the blood tests eventually became more sophisticated and now they only measure the monoclonal component. However, in the US they measure both total IgG and M-spike (bad guys). The difference between the two will be the good guys.
If the M-spike is constant but total IgG has increased it means that there are more good guys in the blood, presumably fighting an infection.
I am not medically trained but that would be my understanding of the situation.
Paul
Hi Margaret, I am also highly interested in the first question. I was diagnosed smoldering since feb 2010 (learned that I hade MGUS in 2005 and went to regular check ups). Started on curcumin late 2010 which I believe has helped me to stay smolderng.I am also 49 years old. Now, I am also considered for the trial of Siltuximab. Do not know anything about it and would really appreciate to know more about it. Would I have to stop taking the curcumin if I join the trial? I want to continue taking curcumin since I believe that it has been very good for me.
Nina, that was my first question when I applied for the DKK-1 trial. I was assured that I could continue taking curcumin, quercetin & bromelain, cod liver oil, blackseed oil and all other supplements I was taking. Upon that assurance I continued with my application. You need to be totally up front and honest with the trial clinicians. You need to get your answers from them.
Hi Margaret,
I have asked you several questions on an older posting from you and have not received any response yet. Therefore I am re-posting it here:
Hi Margaret, Can you please tell us what your protocol is for now? Are you still using Doctor Best’s C3 Complex? When during the day are you taking curcumin and the other capsules? Have you stopped taking quercetin? If yes, what is the reason for this? Have you been taking curcumin since 2005 everyday without any breaks? I am asking these because a very close friend of mine is suffering from MM, we also would like to start with Curcumin ASAP. She has already started taking curcuma powder every morning since 3 days and she says she feels much better (less bone pain). I would be very thankful for your help. Also, thank you so much for this wonderful blog, you are really helping the others! So so much appreciated! Emine
UPDATE: Very recently she has started taking GNC Turmeric Curcumin. Do you have any experience with these? I am actually planning to order for her the Doctor’s best C3 Complex, would you agree?
Millions of thanks for your answers.
Emine
Thank you for your responses. Nina are you in the UK? It was interesting to hear you were following a similar path to me and were also considering taking part in the drugs trial. At the moment I am thinking I will go for it and definitely get back on the Curcumin.
Best wishes
Deborah
I have already posted (before or during the summer, as I recall, and nothing has changed since then) about what I’m currently taking: 7 grams of curcumin (I’m trying a slightly lower dose) and nothing else, really. Occasionally, some vitamin D; hmmm, and I also grind Nigella sativa over almost everything we eat. But, to be honest, I’m too busy with my translation (deadline fast approaching) to experiment with anything new. I will do that, but only next month, when I’ve handed in my work and things have gone back to normal. I also need to go for blood tests (next month, probably).
I recommend the C3 Complex curcumin for the only reason that it has been used in the MD Anderson MM-curcumin trial and the MGUS-Australian trial. And it has worked well for me. I take the Doctor’s Best brand because I bought a large supply of it, and it used to be the cheapest source around (not so sure of that now…prices have really skyrocketed lately!).
I don’t know anything about the GNC brand. Sorry.
Yes, I have been taking curcumin every day since January 2006 without any major breaks. I did go without curcumin for about a week in the spring of 2006, and occasionally, very rarely, mind you!, I don’t take it for, say, 24 hours (for instance, I didn’t take it while we were in Milan recently).
I take it all at once, in the evening. Nothing has changed in my intake, Emine. If I plan to make a MAJOR change in my regimen, I’ll announce it on the blog. No worries!
Be careful: curcuma powder is not the same as curcumin. Curcuma, or turmeric, is the spice from which curcumin, the active ingredient, is extracted. I use turmeric in my cooking whenever possible, but I also take curcumin in its concentrated form (capsules).
Anyway, I hope this has answered most of your questions. Best of luck! 🙂
Deborah, I sent you a message on Facebook. Tell me if you did not receive any. Met with the trial doctor today. I can continue taking curcumin. It is an interesting study but I have to gather more information before I decide if I will join or not.
Hi Nina
Sorry I have spotted it now and sent you a response.
Kind Regards
Deborah
Hi Margaret,
First many thanks for your wonderful blogs. I must admit I am only part way through all the material as a relatively new reader, but I am a bit confued on your curcumin intake. I have read some of the wonderful ideas you have had with curcumine in various milk, ganache, oil combinations, but then in the above you say you take curcumine in capsule form. Do you take both powder and capsules.
Hoping you many more years of smouldering – Don NZ
Hi Don, I can see why you’d feel a bit confused–there’s a huge amount of material to go through (using the Search box might help you get started; I use it, too, I confess when I have to look up something but get overwhelmed…overwhelmed by my own humongous blog, hehe!!!).
As for my current intake, first let me explain that I don’t have much free time, especially right now. In addition to teaching English for a living (and, occasionally, doing some translating = not my favorite thing at all!, but the money can be good), I have a rather full social life 🙂 . Plus, last but certainly not least!, I spend as much time as possible with Stefano and the cats (oh, and I do tedious stuff like housework, grocery shopping blablabla…amazing how much time all that can take!). And lately I’ve had some extra stuff added on…I’ll be posting about THAT soon…
This (above) is to explain why I’m not experimenting with curcumin powder (or anything else, for that matter) right now. I just don’t have the time to do anything extra. It’s so much easier (and quicker!) just to swallow capsules…
So here is my current intake: D. Best capsules, 6.5-7 grams (I’m curious to know what impact the dose reduction will have on my numbers…I’m having tests done soon).
I also take 2-3000 IUs vit D3 (cholecalciferol), and I sprinkle Nigella sativa on almost everything we eat. If I feel a cold coming on, I take some Manuka honey (do a search of my blog for more info on Manuka, if you want). I think that’s about it.
Hope this makes things a bit clearer…
would like to correspond with anyone taking apigenin or parsley on a daily basis, to discuss what may be an excellent supplement to take with curcumin or alone in people who can’t take curcumin
Hi Margaret ,
Love your funny posts and anything about life in Italy:)
But I just went off rev/dex, and started 1000 mg of dr. Bests . I’m not in CR, but my protein was at .18 last month, now at .23
So what do you think is the minimum I can take?
I don’t want to do too much, first couldn’t afford it and when I go back on drugs not sure what I’d do. But for now I want to try it. Suggestions?
Thanks so much, Chris in Northern California !
Hi Margaret, As a smolderer for some time now, diagnosed in 2004, I wanted to share an option that has helped maintain me in the smoldering stage for almost nine years now. The Seattle Cancer Treatment and Wellness Center is who first recommended Tattva’s Herbs to me. I use the Turmeric Curcumin Tri Force product. The folks there are great. I just appreciate the fact that it has helped me, seriously in 2004 I was looking at some very concerning statistics! Which, by the way, I now skim over. Thank You Margaret for all that you do in your research for all of us to learn from! Happy Holidays! Debi
Here is the website if anyone is interested:
http://www.tattvasherbs.com/servlet/-strse-191/turmeric,-supercritical-turmeric,-curcumin,/Detail