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ReplyDavid,
I finally heard back from the Research hospita’ls tests. The bone marrow Biopsy shows 30% plasma cells and they want me to start Dexamethasone,, Darzalex and Pomalyst for the rest of my life. They say that even though the spike is low, with the biopsy and the PET scan, they believe that I am in real danger because of the light chains. I am going to get your pamphlet on the therapies. I did ask if I could do Velcade again as it doesn’t require a port but awaiting an answer on this. They are not offering the antibody therapy now.
My questions were implied in my last post. I was wondering about why your teachings about food and weight loss are so differing from what the doctors recommend and I really am not up to date on the therapies, just the ones that I have been through.
I have a pretty healthy diet and in the 9 market months am probably 95% local and clean produce and meat. I try and maintain a 80/20 rule of veggies to meat diet. We trade for meat at the market at the market so it’s all local and fresh and I grow and consume a lot of fresh vegetables. I am frustrated because my diet is way already better than most people’s and they are not sick but I am. I feel really good and am also frustrated that this will interrupt my growing season and putting these poisons in my body are like stabbing myself in the heart.
Any advice?
HI Sam- yes, I thought that you were male. I’m guessing Sam is short for Samantha. You didn’t really ask any questions and you seem to have a handle on your therapies both conventional and non. Most importantly your numbers FLC’s and m-spike, all are quite low. Again, if you have lived with MM for the past nine years and your current numbers are this low then you are doing well.
Let me know if you have any questions, concerns, etc. Hang in there,
David Emerson
ReplyHello, I am an organic farmer who was diagnosed with mm 9 years ago. I had pretty much lived a clean food life and was very active, trying my best at a healthy lifestyle before the diagnosis.
I did revlimid for a year, but it did nothing but strip my digestive bacteria, my numbers climbed and 5 ribs were damaged along with 6 vertebrae. After that, Velcade which did put me in remission for the stem cell transplant. I recovered from the stem cell transplant and was in remission for 4.5 years. Out of remission now for 2.25 years but no problems until recently. Now many lesions, and the protein level is at 1.01, not high but the lesions are the issue. I have been taking the real cannabis oil for a year, measured into capsules, but I am not sure if I am taking enough or using it the right way. I appreciate any advice.
Hi Sam-
Living with MM for 9 years is commendable. Re cannabis oil, because of a lack of research here in the US, there is little research for MMers to go on. But I will relay as much info as I have read in the few studies there are.
My understanding is both cannabinoids and THC kill MM. However, the combination of the two works best especially at a 1:1 ratio. Dosing has not been studied as far as I know. Those patients (for any cancer) that use CBD oil take as much as they are comfortable with. This means that people start with a drop of CBD oil under their tongue, then graduate to two drops, then three, etc.
Most importantly the primary strength of CBD oil is for pain management and as an integrative therapy to enhance the efficacy of Velcade. Not as a MM therapy by itself.
I encourage you to consider other evidence-based integrative therapies as well as anti-MM supplementation, lifestyle therapies, etc.
Do you know your current m-spike? Do you know what your kappa, lambda free-light chains are?
Let me know, thanks.
David Emerson
ReplyDavid,
Thanks for your answer. This is my second reply. I did something wrong on the first one and lost it. Below are the Light Chains from my tests in January. I was sent back to the research hospital after the M protein and lesions appeared in my tests. February’s tests show a slight improvement on the Light Chains but the protein went from .96 to 1.01.
forgot to tell you that I am a 52 year old female. I am aware that the CBD oil is not a treatment in itself, but I couldn’t find any information on how much is needed to kill the bad cells. The Oncologist that I am seeing is top in the field. He has helped to write textbooks on the subject but as you stated, I am not sure that he cares about the big picture “side effects” but just in getting the numbers down. He has not previously been interested in anything alternative so I was surprised when he mentioned the Antibody therapy for building the immune system. However, after the PET scan showed more lesions, I was told I may be too far progressed to do this now.
I take the CBD oil at night to help with sleep as it is the main area of my health that has always been neglected. I have a terrible time sleeping and it does help with this and the pain from residual damage from before. I had read too that there was success with mm and CBD oil but again, no idea of dosage. I started with a grain of rice and now am up to about half a small pea.
I was intrigued when I read that you said keeping your weight down is essential as the first thing I was told after diagnosis was ‘”don’t lose any weight”. I have always had a very healthy diet but also have had to work at keeping my weight down. I hover between a 12/14. I did not gain on Dexamethasone as you did but did lose 40 LBS. after the Stem cell transplant but still was only a 9/10. I started gaining back after I went into remission.
I did wait to get the coupon code that you spoke of after watching your video but I did not see it.
Thanks for your time and answer. This is heartening.
KAPPA/LAMBDA LIGHT CHAIN RATIO
10.63
KAPPA FREE LIGHT CHAIN
70.72 mg/L
LAMBDA FREE LIGHT CHAIN
6.65 mg/L
[…] A Long-Term Myeloma Survivor’s Diet- […]
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ReplyI am 74 and over t years from diagnosis No SCT as I had a severe depression around 3rd cyclewith.paranoia after Dex.I have Pred.40mg weekly as I am onRevlimid 15mg daily for 3weeks and a week off.I have been 26 cycles paraprotein s undetectable and SFLC in normal range for approx10 months prev CTD and Velcade bothVGpartial response and 2 drug free periods of15 months and10 months.
I am on Sol aspirin small venous clot L pper retinal vein . On Clexaneinjection as anticoagulant.I see reports that turmeric is not appropriatefor me.Doctors at myeloma clinic do not say Yes so what to do? I’d value your opinion Liz Moore
Hi Liz-
Though I’m not 100% clear on everything you mention in your post, my understanding is that you have controlled your MM well over the past couple of years despite experiencing your share of complications that accompany toxic therapies. In response to your question about curcumin supplementation, several things.
As the study linked below explains the anticoagulant properties of curcumin are not well-studied. Your oncologist might not know what to tell you re a small clot.
While curcumin does have studied, documented anti-MM properties, curcumin also has anticoagulant properties. As such combining low-dose aspirin, an anticoagulant such as Clexane and curcumin might cause problems.
If you want to continue to control your MM consider other evidence-based therapies such as nutrition, bone health, and other lifestyle therapies.
Thank you,
David Emerson
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