Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

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Myeloma Relapse? Darzelex?

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Cancer Coach- The real issue is whether you risk damage from the multiple myeloma itself by doing nothing or by undergoing toxic chemotherapy…

Dear Cancer Coach – I hope you are well and your multiple myeloma (MM) continues to remain in remission. 

 Since I initially contacted you I have been doing relatively well. I have not had chemo (or traditional treatments of any kind) since my high-dose (melphalan) chemo prior to my autologous stem cell transplant last January. My m-spike has bounced around a bit, but within a small range.
Over the past 4 weeks, however, my m-spike took a jump from 1.2 to 1.5. My oncologist and my Mayo Clinic transplant physician have spoken, and are recommending I begin an antibody treatment called Darzalex (generic name daratumumab). have you heard of it?
They would give it in combination with velcade and dex.  I was only able to successfully do 3 rounds of velcade a year ago and then had to quit based on the toxicity – and it stopped working. So I’m concerned.  I’m willing to do anything to LIVE. I asked if they’d consider another transplant and he said no – because my myeloma would need to be stable, and right now it’s growing (quickly.)
 Over the past week I have had significant numbness in my face and legs. My onc. has started me back on dex to control that, and to hopefully control the rapid cancer growth while I make my decision about darzalex. To his credit, my onc does NOT push chemo or any traditional treatments. He tells me he’s on “My Team” and whatever decision I make, he is there to support.
If you were in my shoes, would you consider the darzalex/velcade/dex prior to visiting an alternative clinic?  Based on the significant numbness in my face and legs, I am afraid there is something going on perhaps with my spine, neck or kidneys and time may be of the essence.
Image result for image of burzynski clinic
 I sent a note to the burzynski clinic today requesting more info. would you steer me away from or toward that? I looked on their website and only see 2 myeloma cases they have treated – one being yours. there are also 2 other alternative clinics both run my medical doctors – that I’d consider…..  dr. tony jiminez in mexico, and dr. ben johnson (not sure where he is, but I know he uses GcMAF, which intrigues me).

Good to read that you are doing fairly well. I would prefer “really, really well” but I’ll take relatively well. I continue to remain in CR. Re your m-spike “jumping around a bit.” To me, going from 1.2 to 1.5 in one month is a jumping around a bit. An increase of .3 is a tiny jump.  Not too big of a jump. The real issue is whether you risk damage from MM by doing nothing (toxic) or by undergoing toxic chemotherapy. I will circle back to this. If you have no symptoms (bone pain, etc.) then you may want to not have any chemo for another blood test or two.

Yes, I have heard of, have read about darzalex. Darzelex is FDA approved for second line therapy with velcade and dexamethasone. By undergoing this triplet you should achieve a longer progression-free survival compared to revlimid and dex. And yes, you increase your risk of side effects. Please see the study linked and excerpted below.

As I mentioned above, depending on any symptoms you may or may not be experiencing, you may want to hold off further toxicity for another month or two. I would consider either increasing current supplementation such as curcumin or adding evidence-based, non-toxic supplementation. Please consult the Multiple Myeloma Cancer Coach Supplementation Guide. Have we ever talked about the MM specialist with the best published five year overall survival? I continue to read great things about Dr. James Berenson.

I mention Dr. Berenson only because of his expertise in managing MM with low doses of chemo. Not the standard doses other specialists use. Dr. Berenson consults over the phone.

Re your question “if you were in my shoes, would you consider the darzalex/velcade/dex prior to visiting an alternative clinic, based on the significant numbness in my face and legs, I am afraid there is something going on perhaps with my spine, neck or kidneys and time may be of the essence.

If you are worried about bone involvement in your spine/neck/ etc. I would have a bone scan or x-ray. The numbness could also be some form of neuropathy.

I think it is early for you to consider an alternative clinic. I think you could undergo chemo with evidence-based integrative therapies as your next therapy choice. While I do think ANP from the BRI is a possibility there is considerable cost and time associated with this therapy.

To read about ANP and MM in percentage terms read this blog post- scroll down the page to see the results- 14 MM patients is not a lot but it is more than 2…

I am biased of course but if you are doing to go to an alternative clinic I can only suggest the BRI.

o learn more about evidence-based, non-conventional, non-toxic therapies, managing and alleviating side effects, and overall structuring your life to support your body and fight Multiple Myeloma, please watch the video below:

Hang in there,

David Emerson

  • MM Surivivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

Daratumumab, Bortezomib, and Dexamethasone for Multiple Myeloma.

“Among patients with relapsed or relapsed and refractory multiple myeloma, daratumumab in combination with bortezomib and dexamethasone resulted in significantly longer progression-free survival than bortezomib and dexamethasone alone and was associated with infusion-related reactions and higher rates of thrombocytopenia and neutropenia than bortezomib and dexamethasone alone…”

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