What is Myeloma? Oncology has it backwards…

Hi David,
You were the first person I found when I googled MM when I was first diagnosed in June 2016, and you made me feel less lonely. I’m a kappa light myeloma and have bone lesions and have had a bunch of fx vertebrae. I had a SCT in Jan 2017 and was in remission for 18 months without maintenance. I have now tried all treatments and have now been told that the last one here in Canada is Selinexor. I hate drugs and I am not sure of Dex which I have been on with my Carfilzomib for the last 20 months is good for me as it also weakens the bones. I guess you are doomed if you take it and doomed if you are not.
I straight out asked my oncologist if I was going to die if this is the last treatment and she said yes!! I feel good except for bone pain. My white and red are just under normal but normally stabilizes themselves after my week off treatment. I am so at a loss on what to do. I take supplements and eat healthy and exercise as much as I can.
Could you please again give me some guidance.? I also read the beating MM the naturopathic way.
🙏🏻
Tina

Hello David! I wish we would have found your website in 2016 when my 47-yr old husband was diagnosed with MM. He had emergency surgery for a crushed T-11 vertebra and found two other lesions in his femur and sternum. M-protein was around 3.0. That was 6 years ago. We were scared and followed the conventional protocol, while augmenting with other therapies. We are a family who HATES pharmaceuticals, don’t smoke, and rarely drink alcohol. We exercise, eats organic foods & juices, carefully read food labels to avoid chemicals, and yet there we were wondering how this could happen.

While my husband learned to walk again, they had him on Revlimid, Dex & Velcade and radiation treatments. Also, he when to a naturopath for high-dose IV Vitamin C, IV Curcumin, IV Artesunate, Mistletoe injections, and hydrotherapy, which cost $25,000 that year. M-protein was 1.0, but the doctors strongly recommended ASCT. Since there was this thought of total remission, we pushed forward. The stem cell transplant was BURTAL. Harvesting the stem cells prior to the transplant was SO painful. My husband will never do another one again and he is someone who has a high threshold for pain. The M-protein after the ASCT was 0.7, so it wasn’t much improvement. Also, the radiation was a BIG mistake as he still has pain from those treatments. He also will not do a bone-marrow biopsy again. He got talked into that the first week and it was not worth the excruciating pain. The conventional medical cost that year was $500,000, which felt like a money grab by the medical establishment… but again we were fearful and overwhelmed.

After the ASCT, I had him go off all conventional therapies so he could recover and try to reverse the neuropathy in his feet, which did improve, but comes back when he goes back on chemo. Seriously, we ALL needed a break from Dexamethasone! Now he used CBD-THC to help him sleep and it is very effective. The roller-coaster never lets us off. I’ve lost count of the number of times he had to go back on conventional therapies. Year 2020 was Daratumumab year. M-protein had decreased to 0.6, but never stays there for long. Currently, he is on Ninlaro and some supplements I found, which are providing improved energy and may possibly be keeping the M-protein holding at 1.0. Seem like when it goes above that mark, he gets bone pain.

I share all these details here so that others may read my story and understand that the information and perspective you share on your website is honest and real. MM patients MUST take charge of their treatment and have some kind of quality of life. I have met 3 other people with MM and they have all passed on. One I know for sure could have lived longer, but died from the aggressive chemo. I keep looking for other non-conventional treatments that can help keep MM at bay. After all these years, I think it would be nice to be part of a MM community who is actively seeking all kinds of solutions for this illness.

Hi David, my friend Floyd just got his port today. He was in the hospital from 1/6 – 1/26 on 1/15 he was diagnosed with full blown MM. His primary Dr. sent him to the emergency room after blood and urine test showed he was very anemic, high calcium and kidneys shutting down. He had one round (four treatments) in the hospital. He came out stable, kidneys working. We had one visit with his new oncologist. Who said Floyd’s case was very serious according to his molecular profile. That is when he put the order in for the port. We see him again this Friday 3/19. We were pretty overwhelmed from the first visit but it sounded like he wanted treatment to be aggressive. He even mentioned that Floyd might be a candidate for a bone marrow transplant. Floyd also has a heart murmur that he has all his life. He was born anemic. He also has been an athlete for most of his life. He is 69 and African American. You have to much information and it is greatly appreciated but also overwhelming. You talk about not having aggressive chemo treatments and going slower. We are not sure what to expect on this next visit. If we are going to talk treatment or start treatment. They did draw blood on the first visit. Do you have any advice for Floyd. He is not eager to start Chemo but has read that chemo is needed to treat MM. Thank you for your time. I am his caregiver, Donna London.

I am smouldering for over a year now and agree that less is more but how do you get the mms specialist to go along with that?

tumor on t4-6 partially removed Nov. 16, 2020…..neurologial numbness from chest down, am walking with a walker…..blood test from 2/15/21…kappa light chain 16.40 mg/L lambda light chain 8.40 mg/L on revlimid, acyclovir, kyprolis (off Vecade as they think causing numbness) I take some vitamins and supplements. they want to do SCT….I do not. only pain in from tumor occasionally, mild…not sure why

Interested

have mm for 5 yrs. currently on ninloral. doing quite well. Biggest problem is constipation and neuropathy in rectal area. Currently seeing alternative dr. who wants me taking tumeric, neuro-mag., 200 mgs. of coq-10 multiple vitamins and b-vitamins all liquid., probiotic, alpha lypoic acid 600 mg.. this is the protocol.

Hi, I’m a MMpatient diagnosed 2016. I have several lesions throughout my body. What do you recommend to strengthen bones and prevent fractures?

Hi David,
My husband was diagnosed June 2019 and January 2020 had a stem cell transplant. He is presently on Revlimid. He is very weak and tired after having a bout with pneumonia. Also losing too much weight because he doesn’t feel like eating. I am looking for supplemental treatment or supplements to help him regain his strength and endurance. Can you direct me to some alternative treatments?

I was diagnose with MM early this year. I dont have kidney damage, or anemia but have bone disease. Im currently having plasma infusions to increase my immunity and pamisol infusion to help with bone strength. My doctor thinks I probably will progress to chemo treatment and then stem cell transplant. My second opinion doctor doesnt offer infusions and recommends I go straight to chemo and stem cell transplant. Do you have an opinion on stem cell transplant in the treatment of MM. My main concern is the high doses of chemo that are required prior to the transplant.

hi,
i am searching for information about revlimid maintenance in mm.

I’m very interested in non-toxic non- conventional therapies. Ty

Hi David, I find your article so refreshing! My mom was diagnosed with MM in 2017, she went through the whole regime, chemo – velcade, steroids.. and she had tons of side effects! There were times that she wanted to give up.. but the chemo worked for her and she persevered. After a year, being the determined person she is, she asked to stop the treatment.. totally, and thanks to God, she did fine. Her blood works was all good until recently – May 2020. The Dr said her cancer came back, and is affecting her kidneys. She has refused chemo totally this time.. and looked for natural remedy, like vegetables and fruits that are antioxidants and good for her kidneys. I would like to find out more from you how you survived MM, please share with me your journey.

Thanks, MArina.

I was first diagnosed March 2018. Had plasma pheresis ? done and was put on Rev, Dex & velcade. Plus xgeva shots monthly. Numbers came down quickly but felt terrible. Then after a couple months started getting double dosed to bring numbers down more for Sct. Did Not have it done
My choice, as I felt it might kill me due to how bad I felt already-having so many side effects to everything I was taking. Got off everything for a few months and started feeling more normal but numbers started rising quickly (I think because I started eating sugars -Thanksgiving-Christmas and went overboard). Am now on cytoxan with no steroids as they make me hurt . Again , my choice but numbers are slowly rising. Also have trouble with neuropathy in feet and lower legs. Dr wants me to start on a strongIV but I’m so hesitant because I don’t tolerate any of it well. The cytoxan affects me the least of all I’ve been on. By the way I asked and asked the Dr to not double dose me as it was just too much but that was the protocol. I know now that less is more and I’d rather have quality of life than quantity if I have to choose. Could you please send me the supplement List you’ recommend and any helpful ideas you might have for me? Thank You!!!

What effect does MM have on joint replacement. I have had two surgeries on the same knee. The first was a partial and after three years and a lot of pain I had it redone. They said that the metal piece in my lower leg was loose and had to come out. I had a revision (total knee) in March and I am still having a lot of pain.

This is an excellent article and will be helpful to your readers.

I DO agree with your synapses..completely.
What I found to be the most common sense; about no matter the amount of therapies/chemo, thefe is no cure and those same treatments wiil not work when relapse happens. So the risk of other conditions or cancers is not worth it ( except to the pocketbooks of practitioners and pharma companies ). Of course the parentheses is just my opinion.
Ok, I apparently have MM, but it makes sense to me that I will live longer with less drugs. I know the myeloma without treatment will or ..may cause problems along the way. Why is it so hard to take charge of our own health..for me anyway?
Thank you for your words.
Research is working on cancer cure but do we have to be guinea pigs?

Ps I must admit that some patients need more treatment, because of obvious issues, but chemo?
Oh boy, I think I will be disagreed with, but I can only go by my case..in reality.

Is it possible to fight MM solely with evidence based, non toxic, non-conventional therapy?

curious about the nontoxic route