Good morning to all from a soon-to-be-hot-day in Florence! I just found this question and answer (Ask the Nutritionist) thingie on the Dana-Farber website (http://www.dana-farber.or...) and wanted to hear what y'all thought of it. Does this make sense or...? (Not that I have taken Revlimid or anything else conventional, but I wouldn't mind giving a boost to my blood cells, for sure!). Thanks, Margaret
Q: I have active but stable multiple myeloma and am on temporary "vacation" from Revlimid until my white cells recover. I'm currently taking prescribed doses of potassium (10mg daily), Vitamin D (8000 units once weekly) and magnesium (240 mg daily). What do you recommend I add to a healthy diet to boost red and white counts being depleted by Revlimid?
JSH
North Truro, Mass.
A: It sounds like you are on your way to helping replenish nutrients that have been reduced during the course of your treatment. It is also important to get enough protein to help rebuild blood cells. Good sources of protein include lean meat and poultry, fish, eggs, low-fat dairy products like milk and yogurt, soy foods, nuts, nut butters, beans, and hummus. To find out your exact protein needs, please speak with a registered dietitian.
Balancing activity with good quality sleep and rest can help rebuild red and white blood cells as well as overall immunity.
Research suggests that acupuncture may help with white blood cell count recovery between chemotherapy treatments. The Zakim Center for Integrative Therapies at Dana-Farber provides acupuncture services.
Margaret-
I am not expert on cancer and nutrition. My quick read of the site is that, in general, it gives sound advice. I did take issue with a few statements though. As for your specific issue of boosting red/white blood cells- the site certainly seems to give good advice here. Telling people to
"It is also important to get enough protein to help rebuild blood cells. Good sources of protein include lean meat and poultry, fish, eggs, low-fat dairy products like milk and yogurt, soy foods, nuts, nut butters, beans, and hummus. To find out your exact protein needs, please speak with a registered dietitian. Balancing activity with good quality sleep and rest can help rebuild red and white blood cells as well as overall immunity. Research suggests that acupuncture may help with white blood cell count recovery between chemotherapy treatments."
Proper nutrition, plenty of sleep and acupuncture-
David
Margaret,
To build red blood cells you need to take iron (ferrous sulfate-35 mg has the highest bioavailability) simulatneously with vitamin C (500 mg). Prenatal iron is an Ok choice but add the vitamin C. Your level of vitamin B12 might also be low (this is low in many MM patients). It is very hard to get B12 absorbed orally. It is available as a shot (DR's office) which provides good bioavailability. A simple blood test will tell you if your B12 is low, or just proceed with the ferrous sulfate and vitamin C and see if that does the trick- you will have to give it a month.
How low is your white count-more specifically how low are your granulocytes? If your granulocytes are less than 1000, I would suggest one shot of G-CSF (Neupogen®, Granocyte®, Neulasta®). It is a tiny shot in the fat of your stomach. In my case with one shot it restored my white count to full normal (7.0) in 24 hours. Nothing like modern medicine when it works. If your granulocytes are 500 or less your are at great risk of developing a serious infection and should not wait to get the G-CSF shot.
Terry
I would like to report my first three way with curcumin-I dropped my Revlimid from 20 mg to 15 mg (21 days on-7 days off) because my white count was too low-my opinion not my oncologist's-my WBC was 1.9, maintained 20 mg dexamethasone once/wk, and added 500 mg Jarrow curcumin without Bioprene on days 4 through 7 following the dexamethasone. To my oncologist's surprise and my delight, my WBC went from 1.9 to 2.7 and my M-spike dropped 17% from 1154 to 968 (in 28 days). Well he said, I guess lowering the Revlimid didn't do it. His order's had been to maintain the Revlimid at 20 mg-but I did not believe my M-spike was my biggest risk factor. I plan on living a long time and I don't believe mentally or physically you can do that worrying about the next infection. However, I was prepared for my M-spike to go up. I just had to find out. To all those who have oncologist who are just monitoring the M-spike and not the rest of your health, my advise is go talk to another oncologist. The worst that will happen you will waste your time and money and you can go back to your first one. If you do this, do not discuss with the second oncologist anything from the first oncologist-they do talk and their egos are so big the relationship will likely get worse.
Terry
Terry, did you only take the curcumin for 4 days?
Dear Terry, thank you for that info. Indeed, I am having my vit B12 level checked. I should have my results by the end of next week. Last year, my B12 level was within the normal range, but on the low end. My white count is also within normal range, always has been. Last time (April tests), though, a bit on the low end. I don't know about my granulocytes...I don't see that those are tested here...Hmmm, I will ask my hematologist about that. I certainly do NOT want a serious infection! Having a bad case of pleurisy last year was enough infection to last me at least a few years! Thanks again, Margaret, Florence, Italy
Margaret,
If your WBC is on the low end of normal you probably have nothing to worry about. Here is the general knowledge that has been shared with me concerning neutrolphil levels that fight baterial infections. If Neutrophils are 500 or less, you need to be on a strong prophylaxis antibiotic continously. If your neutrophils are between 500-1000 you don't need the antibiotic but you should not be running around exposing yourself to others. If your neutrophils are 1500 or greater you are probably ok to be among crowds and relax. Neutrophils, eosinophils and basophils are all types of granulocytes.
Regardless of the status of your WBC, here are some things to help to keep everyone with MM from getting infections. Remember, you are just as likely to infect yourself as getting an infection from someone else. Finger nails and hands are a prime source of infection. Always keep finger nails trimmed as short as possible. Wash your hands or use the waterless alcohol gels whenever you are touching something that is not washed such as shopping carts, store doors, someone elses pen that you are using to sign a charge, gas nozzles, someone elses computer mouse or key board, a library book, the TV remote control that everyone uses, etc. Do not rub your eyes with your fingers. The eyes are a direct path to your blood stream.
Terry
Excellent news, Terry! Keep it up! I also agree with you that the M-spike is not everything. Indeed, over here the M-spike is not even tested! Margaret, Florence, Italy
Margaret, what do they test in Italy as the main marker? I remember you mentioned total protein at one point, but today we saw a different doctor for another opinion, and she said that total protein is not realy an indicator, because the bad can be up while the good are down, and vice versa. My husband's total protein was exactly the same at diagnosis as it is now, oddly enough. This second doctor was a little suspicious of the disappearance of the M protein and took blood for another test to check it. And, our usual doctor has scheduled a bone marrow biopsy for Thursday, so soon we'll have an idea of what the real story is.
Thanks Terry. I looked at my granulocytes, based on what you wrote yesterday, and I am way within the normal range on every count, neutrophils etc. I still try to avoid crowds, though, especially during the flu season. I have always had short finger nails, so that isn't a problem. And I wash my hands all the time, especially now that we have a new adorable baby kitten who has ear mites and intestinal parasites. Speaking of washing hands, I remember watching a horrifying Oprah show on germs years ago. Flesh-eating bacteria was found on shopping cart handles in supermarkets around the U.S.! And other horrible germs, foecal matter etc. Not to speak of the hygiene (lack thereof) in hotels, especially and unbelievably, the five star ones. Yuck. So it's a good idea to wash your hands every time you get home from an outing. Thanks for the tip on the eyes. Now how about rubbing curcumin right into our eyes? (just kidding!!! But too bad we can't do that). Margaret. Florence, Italy
One of those hidden things no one thinks about, dirt contains fungal spores and molds that can get into the lungs as you bring your nose and mouth close to the soil. For all of us MMers, the lungs is the worst place to try to clear something up. What is worse, neither you nor your doctor will guess a fungal infection first if you do get pneumonia. Bottom line, my recommendation is if you are a gardener, find a new hobby. This information was shared with me when I was discharged from the Mayo Clinic after my transplant.
Terry
Ditto as David. I am going to print out Terry's message and hand it to Stefano (my hubby). ;-) Margaret, who likes flowers and herbs but hates to do the weeding...
Terry-
Thank you. I can now give my wife a medical reason for not helping with the gardening.
David
Lisa, I can speak only for my hematologist, of course. However, an Italian friend of mine who has SMM has pretty much the same tests done. And her hematologist is in a different city, Bologna, about an hour from Florence. So my tests would appear to be standard here. At any rate, I have a million tests done, some of which are non specific for MM (like the cholesterol), as follows: complete blood count (CBC), haematocrit, haemoglobin, then a bunch of related abbrevations (but I am not sure of their exact meaning, although at one time I did look them up and take notes which I have somewhere): MCV, MCH, MCHC, RDW, Platelet count, MPV, blood viscosity. Plus, the granulocytes that Terry mentioned: neutrophils, and all the other –phils like basophils etc. Lymphocytes and Monocytes. Glucose. Total cholesterol, LDL and HDL, and triglycerides (almost normal since I have been on curcumin!). Now for a few of the more specific MM ones: creatinine, calcium, total protein, LDH, uric acid, Ig counts (my IgG and also IgA and IgM), C-reactive protein, Bence Jones protein (I hate that one!), Beta-2 microglobulin, iron, ferritine, and then the protidogram which I guess is the SPEP test in English (albumin, alpha 1 and alpha 2 globulin, beta globulin, gamma globulin, albumin/globulin ratio, and the M-spike and other globulin spikes plotted on a graph). Also, here we also have the monoclonal component percentage, which helps us figure out how much of the Ig is nasty and evil.
Once a year, I also have other more specific tests: sodium, potassium, chloride, magnesium, folic acid, zinc, and some vitamins such as B12, B6 and D.
I have noticed that my hematologist seems to look mainly at the anemia-related markers, total protein, uric acid, monoclonal component, the Ig counts, Beta-2M, and C-reactive protein in particular. But perhaps those are just the ones she comments on.
She told me, when I asked, that the M-spike is not a reliable marker (what can I say?). Still, I have calculated mine, thanks to a listserv friend who sent me the instructions on how to do that. As for the BMB, please keep in mind that the results can vary from one area of the hip to another. MM cells tend to cluster, so if the doctor hits one of those clusters, the sample will be loaded with bad cells. If the doctor doesn't hit a cluster, the resulting BMB value will clearly be lower. Not easy for a non-scientist (moi) to explain, I am sure other list members would do a much better job. Anyway, I have had a BMB result as high as 50% (late 2005). When I read that number, I flipped out. That was in the pre-curcumin era. Then in January 2007 I had a 40% BMB result, which is still high, but with the "cluster" knowledge I have now, I was perfectly calm. I am not saying BMBs are not important, but in my opinion you have to look at the WHOLE picture, other markers as well. All this to say that I doubt the "real story" can be had from a simple BMB. Of course, that changes if the BMB result is a big fat ZERO! ;-) Anyway, "in bocca al lupo" (the Italian way of saying "good luck!") for tomorrow's BMB, Margaret, Florence, Italy.
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