Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission
Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
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“Individuals with high-velocity multiple myeloma relapse will need immediate therapy, while patients who are asymptomatic with low-velocity reappearance (biochemical relapse) of the M protein may not require intervention”
Dear David- I trust all is well. Can you tell me if a biochemical relapse of my multiple myeloma is a precursor to full relapse? My Free Kappa Light chain has been spiking so we have increased the dose of Velcade ( I had been on low-dose/maintenance ) plus dexamethasone to push back.
It could be that Velcade has lost its effacacy given my long-term use. My oncologist and I stayed with low-dose Velcade maintenance due to the fact that I tolerated it so well. In addition all my other numbers have been normal which I attribute to the multiple myeloma cancer coaching program.
I realize this may be a good question for Beating Myeloma and I may post after your response but my family follows my page and I am not trying to alarm them prematurely.
Let me know what you think. Thanks.
Dear MM CC Client-
While the excerpt below by Ajai Chari, MD, doesn’t really give a specific definition of “biochemical relapse,” I interpret the doctor’s explanation to be directed at two things. First, is the MMer asymptomatic or not and second, has the MM’s freelight chains increased out of the “normal” range. You seem to fall into both categories. No symptoms with increased kappa freelight chains.
The article linked and excerpted below talks about a relapse in MM to be about the damage or risk of damage caused by disease to be the guiding factor when consider whether or not to actively treat you MM.
Meaning you must consider your past treatment history and combine this with a determination if your disease is high risk or standard-risk MM.
“In trying to decide how to treat a patient with relapse, the first question is, where is this patient on that continuum of purely biochemical relapse to fulminant disease? Not everybody with mild biochemical relapse, which isn’t even fully detectable or fully measurable by IMWG (International Myeloma Working Group) response criteria, needs immediate therapy. That type of patient could potentially be watched for a few months longer until we do have symptoms…
“When deciding on the optimal treatment for an individual with relapsed multiple myeloma, it is important to determine whether the relapse was biochemical in nature and whether the patient has standard-risk or high-risk disease…
An individual with high-risk disease is more likely to encounter poorer outcomes, such as organ dysfunction, and may require earlier treatment. It may not be urgent to initiate treatment for patients on maintenance therapy with lenalidomide who have a modest increase in their M protein levels…”
Other factors to consider include treatment history, duration and tolerability with previous therapies, current patient status, and renal status… Even once these factors are considered, it remains unclear how to optimally sequence all of the therapies that are available for patients who have relapsed…
Evidence of disease progression does not necessarily trigger treatment… Individuals with high-velocity relapse will need immediate therapy, while patients who are asymptomatic with low-velocity reappearance of the M protein may not require intervention. The immunoglobulin free light chain assay is helpful as a leading indicator of progression in patients who plateau..”
Multiple Myeloma Relapse- Absence of CRAB? What to do?
When patients present with biochemical relapse in the absence of hypercalcemia, renal failure, anemia, or bone lesions (or CRAB) criteria, the optimal timing of initiating salvage treatment is always questionable.
My view differs from conventional oncology’s view of Multiple Myeloma (MM) in many ways. I think very differently from oncology when it comes to the subject of a relapse for the MM patient. In short, no CRAB, no relapse.
If you would like the long explanation of how conventional oncology defines a MM relapse, please read the article linked below.
Since I am a MM survivor, I think like a MM patient. I think about what MMers want to know when they face a relapse of their disease. A MM relapse is a trend, not a single point in your blood work. Induction therapy is designed to tilt your MM trend downward. Hopefully to a complete remission aka normal blood work. Hopefully, your remission lasts for years. But not always.
If your markers are trending up, I think the question that MMers should ask themselves and their oncologists is whether their MM or their next round of chemotherapy will do more damage. In all fairness, the answer might be either.
Hopefully, if you have an autologous stem cell transplant you achieve complete remission…for years. But not always. A relapse is when your MM blood markers begin trending upward. One single blood test may not signal a relapse. I think that several upward moving blood markers is an example of a myeloma relapse.
My point is that as a MMer your disease either is trending down, is normal, or is trending up. MMers are happy with the first two scenarios. We are unhappy if our MM blood markers are trending up. Plain and simple.
Conventional chemotherapies such as Velcade, Revlimid, Cytoxan, etc. alone or in combination are good at reducing your MM. The problem is, all MMers relapse. Always.
I have managed to remain in complete remission since April of 1999 by living an anti-MM lifestyle. Anti-MM nutrition, supplementation, lifestyle and even mind-body therapies have kept me from a MM relapse since 1999.
To learn more about achieving a deeper, longer remission, avoiding the side effects of MM chemotherapy and radiation and keeping your bones healthy and strong, scroll down the page, post a question or comment and I will reply to you ASAP.
When patients present with biochemical relapse in the absence of hypercalcemia, renal failure, anemia, or bone lesions (or CRAB) criteria, the optimal timing of initiating salvage treatment is always questionable. Previous complications of the disease (ie, presentation with myeloma-related renal impairment, extramedullary disease) may indicate an earlier rather than a later time of initiation of therapy, before symptom development. In the absence of evidence of high tumor burden or an aggressive relapse (with elevated serum lactate dehydrogenase,79 rapidly rising paraprotein levels,2 light-chain escape80), observation of biochemical relapse with monitoring every 6 to 8 weeks until the patient develops clinical manifestations of symptomatic myeloma is currently recommended…”
Generally, the definition of relapse in multiple myeloma is the reappearance of signs and symptoms of a disease after a period of improvement. Patients with relapsed multiple myeloma are those who have been treated and then developed verifiable signs of the disease that have been precisely defined by the International Myeloma Working Group (IMWG). The IMWG response criteria are used to determine patients’ responses during treatment in clinical trials and are necessarily very precise
Hi Roger- 10 years post DX and in MRD sounds like you are doing well. Low vitamin D level has been shown to increase your risk of MM. And yes, increasing your vitamin D blood level should then reduce your risk of a number of diseases.
David Emerson
Thanks for the encouraging plan that gives us some capacity to do SOMETHING to manage our disease. I am 10 years post dx, 1 year post Revlimid prophylaxis and am MRD(-) and so thankful. I also feel my wellness diet has had much to do with my survival. My genetics did not show a high risk pattern but did show I, as are many, was very vitamin D deficient. Also vitamin A! I replace these to be in a high-normal level. I am also very aware of my omega 3/ omega 6 ratio and try my hardest to keep omega 6 down. In all ways, I try to keep out of the way of sabotaging my own immune system that can suppress myeloma cells better than immunotherapy.
Hi Tania- just to clarify, are you Canadian? What is your m-spike unit of measurement? Your m-spike could be 5.9 or .59 depending…let me know, thanks David
Hi David
So I have been in remission for over two years now I did do induction therapy and an August stem cell transplant and I did not do any maintenance therapy. My numbers have been excellent in all blood labs until this month. My spike jumped to 5.9 and my free lights jumped up a little bit.
I’m not willing to do any conventional treatment and I just don’t want to panic. I have been doing all kinds of integrative therapies that I’ve been working well but my oncologist haematologist does want to talk to me and I don’t know what to do.
Hi! I was diagnosed in Oct of 2020, went through almost a year of treatment. My M protein started at 8.9 and I had 90% cancer in my blood, I underwent a bone marrow transplant in Oct of 2021 when they couldn’t get my cancer under 22%. It was a “successful” transplant with 0% cancer and M protein at .2. I have no symptoms from the beginning and continue to feel well. My IgG numbers are now going up already and my M protein is at .9. I was on 10mg of Revlemid as my maintenance and now they increased it to 15mg. So… I will be getting my blood work done Oct. 20th and will see my Oncologist on Oct. 27th and am wondering if you have any insight on what I should ask, I will be 60 years old in November. Male.
Thank You, Scott
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