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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.Reply
I replied to you via your email.
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.Reply
I am sorry to learn of Floyd’s MM diagnosis. It sounds as though Floyd has three sort of conflicting health challenges- his MM, his kidney function and his heart health. I will reply to you directly via email.
Hang in there,
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?Reply
I agree with you that oncologists, specialists or not, can be difficult. A couple of ideas. Always remember that you are the patient. No one can make you do, take, anything. I know of many MM patients who have to leave one oncologist and find another.
Another way to approach a difficult oncologist is to express your concerns, “doctor, I believe less is more…” And then discuss options. For example, many MM patients who do not want to have an ASCT will harvest their stem cells after induction therapy just in case.
An example of pre-mm, SMM in your case, will be the issue of “to begin treatment or not.” I know of many with SMM who are told that they should begin chemo “soon.” But your definition of soon may be different than your oncologist’s definition of soon.
I’ve rarely heard of an oncologist who did not listen to their patient. I would try to explain your wishes, your thinking. Feel free to email me if you and your dr. reach an impasse. We can talk through your options.
Hang in there,
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 whyReply
I am sorry to learn of your mm diagnosis though good to see that your kappa and lambda light chains are in normal range (see below). My guess is that surgery to your spine may have caused the neurological issues that you are experiencing.
If you are asking me whether or not you should have an ASCT, my thinking will be influenced by how you respond to induction therapy. Have you reached complete remission, partial remission, remission, etc?
In general, I am cautious about toxicity. What was your stage at diagnosis? What CRAB symptoms?
Normal test results for free light chains are: 3.3 to 19.4 mg/L kappa free light chains. 5.71 to 26.3 mg/L lambda free light chains. 0.26 to 1.65 ratio of kappa/lambda.
Let me know, hang in there,
Could you be more specific? What are you interested in?
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.Reply
Hi, I’m a MMpatient diagnosed 2016. I have several lesions throughout my body. What do you recommend to strengthen bones and prevent fractures?Reply
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 replied to you directly via your email address. Let me know if you have any questions.
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.Reply
i am searching for information about revlimid maintenance in mm.
What would you like to know about Revlimid maintenance therapy for MM patients?
I’m very interested in non-toxic non- conventional therapies. TyReply
I assume that you or a loved one has been diagnosed with MM? If so, what symptoms have you experienced? What stage are you currently? Have you undergone any chemotherapy? Any side effects from therapy?
I ask because different non-conventional therapies can integrate with different chemo regimens.
Let me know, thanks.
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.
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!!!
Are you receiving my emails?
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.Reply
Hi Philip- I replied to your question directly via your email- let me know if you have any questions.
This is an excellent article and will be helpful to your readers.Reply
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.
Your experience is difficult to discuss online because I think you could have reached remission with a LOT less induction chemotherapy. Then remission…if relapse just a little more chemo…remission…relapse… you get the idea. Non-toxic therapies before, during and after chemo. Less chemo, less toxicity, less damage, less money, better QOL…Yes, most MM patients are diagnosed at stage II or stage III. Therefore they present at diagnosis with more MM, more organ damage. Must worse prognosis. More MM at diagnosis requires more aggressive therapies to reach remission. Unfortunately, that aggressive chemo causes many short, long-term and late stage side effects.
That is the purpose of the blog post “What is multiple myeloma???”Reply
Multiple….maybe meaning many…..blood types and consequences !?
Anyway, so far I’m not a whole lot better off, but still better. Looking forward to my first blood labs from not being on Rev. and Zometa. Blood test this coming Monday ( 1st ). I’m hoping either nothing has changed or maybe a little better, or even a little dip because my body has become accustomed to treatment. I have no clue. I’m taking supplements, and supplemental drinks because I don’t eat enough fruits and vegies. The drink is freeze dried vegies and fruits; I add about 8 oz. of water and drink it. It’s hard to tell but I think it’s helping. I do notice the fiber part is helping. 😉 Ingredients are good; no sugar, fillers, just powdered f. and v. I gotta admit though, that I have always wondered about dehydrated and freeze dried products. ….even steamed vegies. The nutrition…..is there still qualities in them? Canned vegies…..to me, seem like they are dead and may act as some fiber..only. Ok, so I am so unqualified; I just wonder a lot.
From a “big picture” standpoint, you have accomplished a great deal thus far. You were diagnosed with MM, you underwent induction therapy, you reached complete remission, you took yourself off chemo and you have improved your lifestyle.
That is a lot! You know the old saying about “how do you eat an elephant?” One bite at a time…:-).
Keep me posted. DavidReply
Is it possible to fight MM solely with evidence based, non toxic, non-conventional therapy?Reply
I replied to you directly via email.
Several things. First, can you be more specific? The MM CC program talks about both conventional (toxic) and non-conventional MM therapies. A lot of your therapy choices depend on where you are now, what therapies you’ve already undergone, etc.
Lastly, if you post your question “curious about the nontoxic route” on Beating Myeloma, everyone will read my comments plus they may write comments of their own. All will benefit.
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.