TAB’s July 2021 update

TAB wrote his update as a comment to the post I wrote about him back in 2012, but I decided that this update should be turned into a post, as follows…

TAB’s Update 7/9/2021
Smoldering 20 years, progression 2 years, Velcade for 4 months = complete remission.
My journey with IgA Lambda Multiple Myeloma has been a long one. At age 80 I am finally in complete remission. During the first 20 years I took only over the counter supplements which in my opinion kept the beast at bay. I plotted the results of my blood tests using Excel and relied on the trend lines to keep track of how I was doing. After a few years of supplements my M-spike leveled off and then started decreasing. This was not a cure by any means but it seemed to keep the beast at bay for 20 years with no CRAB symptoms. Then something caused the M-spike to progress from about 3000 mg/dl to almost 6000. A bone marrow biopsy showed 60%. Some results were approaching CRAB levels. At this point is was a no brainer, I had to consider treatment for overt MM. I discussed my options with by Oncologist and we decided on VRD (Velcade, Revlimid and Dexamethasone). Due to the high cost of Revlimid we (mostly me) decided to do the Velcade SQ and Dex (20 mg) only. After 15 Velcade subcutaneous injections in the tummy and 20 mg of DEX once per week over a 4 month period my blood work showed a remarkable return to normal levels. The only side effects were mild peripheral neuropathy (tingling sensation) in my toes. My latest blood work (7/9/2021) 5 months post Velcade treatments included : CBC, Platelet Count, Serum Electrophoresis, Beta-2 Microglobulin, Immunoglobulins (IgA, IgG and IgM), Complete Metabolic Profile, Kappa /Lambda serum Light Chains and Serum Immunofixation. A copy is included in my report. Of all of these tests only one test was flagged low and that was IgM. I have never had a blood test this good in my entire life! The most important result was the Immunofixation test showing “no monoclonals present”. This is according to my doctor a very sensitive test. My doctors conclusion, and I quote, “You are in complete remission and I tell my myeloma patients about your results”! I am back on my supplements which I am hoping will keep me in remission as long as possible. Of course there are no guarantees. My next blood work is in 4 months. I have documented all of my blood work and my supplement regimen in my latest report. If anyone would like a copy of my report they can E-mail me at tabbat41@hotmail.com. Best of luck to all fellow MM’s. TAB

7 Comments

  1. My 75 yo husband had a hip replacement in Florida a few months back. He had what they called the anterior approach which saves cutting through a lot of muscle. He was in the hospital over night, minimal pain and walking next day. He did do physical therapy for about 2 months. No pain meds ( perhaps a Tylenol) after first day. A friend the year before had one which was posterior approach and he described much pain being on meds for weeks! Best of luck! Maddie ( smoldering 7 years)

  2. Hi Margaret, good update from TAB. I wanted to write him something, but apparently the E-mail address is not correct. Will you send it to me? thanks

    Hans

  3. Hi Margaret, Thanks for the Corner and the updates, terrific stuff.
    I tried connecting with you via the email address in TAB’s July 2021 update however it doesn’t appear to be working. Could you please forward me an alternate email address. Much appreciated. Gordon.

  4. Hi MARGARET,
    my name is NINA ,I am from ISRAEL,and I was diagnosed a year and a half ago with MGUS,i hope it still did not progress,because there was a long delay,when all exams stoped because of the corona.I searched the doctor because of neuropathy,legs and arms and hande were tingling,but now feel realy on fire=burning.I am a classical concert pianist and this situation with my hands is very difficult for me.I was very impressed with your expierience and would like to try and take all the supplements that you took\take,to keep this monster at bay for 20 years…could you be so kind as to tell me exactly your regimen of supplements that you were so successful with,including doseges and brands.Icannot play the piano now,and I still want and hope to give concerts and record my unic interpretations for J.S.BACH repertoty.My hematologie doctor wants me to start on Lenalidomide which I know is causing neuropathy by itself–I would like to go the natural way as long as possible.I will be so greatfull to you if you kindly email me your coktail of supplements that helped you avoid the conventional treatment for so long.may G-D bless you Nina.

    1. Hi Nina,

      This is the last update posted from Margaretabout her regime in 2014 that I could find on this site. I copied it verbatim for you. You can also fine it by searching the title on this site. Best, Linda, another reader.

      “My current supplement regimen
      SEPTEMBER 1, 2014 / MARGARET / 21 COMMENTS
      Back in March (!), after receiving many reader queries about my current supplement regimen, I began writing a “supplement” post…But then, between one thing and another, I never finished it. Since then, though, I’ve received even MORE requests from even MORE readers on the same topic. So today I picked up my draft and finished it. Here goes, for what it’s worth…

      Oh wait, first, I would like to note that I take only the C3 Complex curcumin, that is, the curcumin that has been used in all the MM, SMM and MGUS trials. I disregard and am suspicious of any and all brands that claim to have the highest curcumin bioavailability possible (these claims are usually based on company-sponsored studies, blablabla). With one possible exception: I am very curious to try the Meriva curcumin (but I have not, so far…some day, though…).

      Point is: I take ONLY what has worked for me all these years, as follows.,..

      Doctor’s Best C3 Complex curcumin, 500 mg capsules, with bioperine. My dose: four grams a day. I order it online from various sites (whichever one happens to be the cheapest, as long as it’s a reliable one…usually Amazon or Vitacost). If I run out of the 500 mg capsules, which I prefer for various reasons, I substitute them with the Doctor’s Best C3 Complex one-gram tablets (4 of these = 4 grams of curcumin, which is an advantage over the capsules, for sure).
      Doctors Purest C3 Complex curcumin, 500 mg capsules. My dose: four grams a day. I order it from Ageless Cures. Important note: it doesn’t contain the black pepper extract (= bioperine).
      This is sort of an aside, but I sometimes substitute the above type (point no.2) with Doctors Purest Boswellin + Curcumin (which I order from the same site, Ageless Cures), which does contain bioperine. However, in addition to performing other good deeds, boswellic acid has been shown to block one of myeloma’s main survival pathways (STAT3) — you can do a search of my blog for more information on boswellic acid. So I figure that boswellin plus curcumin should be a double whammy for my myeloma cells. [Yeah, I know, it’s bloody expensive…but each caplet contains 700 mg of C3 Complex curcumin, so you don’t need as many of these caplets to reach your daily goal.]
      Vitacost’s quercetin with bromelain, 250 capsules. My dose: one and a half grams a day. If you buy this brand and decide to take the dose I take, all you need are six capsules a day.
      I also plan to resume taking fish oil. Soon. I take the Vitacost brand, the Mega EFA and DHA “softgel” type. I stopped taking it simply because I ran out of it, but I now have a new bottle. And I also plan to resume taking ashwagandha as soon as my current experiment — see below — ends.
      *Note: I’ve also tested Vitacost’s NSI curcumin, the one with C3 Complex, with bioperine. As I recall, the NSI capsules were a bit larger than the Doctor’s Best ones, and they had a bit of a stronger scent, so I stopped taking them. If those two things don’t bother you, though, then go right ahead. And perhaps they have improved, over the years.

      Current test: Nutrigold’s Guggul Gold, 350 mg per capsule…I am taking the recommended dose on the bottle. You can order it from various online sources. This is a test, of course, so if it doesn’t work, I won’t be taking it again.

      To sum things up: I take EIGHT grams of curcumin a day…4 grams with bioperine, 4 without bioperine (unless I am taking the boswellin-curcumin-bioperine caplets, of course).

      I have a final disclaimer: I am not connected in any way, financial or otherwise, to any of these brands or companies (or to ANY brands or companies at all, for that matter). During my blogging career, I have received “freebie” offers for this and that supplement, that is true…but I ignore them or turn them down on this basis: if I can’t afford it, I won’t take it. Perhaps I’m being silly, but that’s my policy. I like my independence!

      Okay. I think that’s about it, folks!

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