Myeloma – Stage 1- Non-toxic Therapies?

David Emerson says 6 months ago

Hi Barbara-

I am sorry to learn of your MM diagnosis. However as an early, stage 1 newly diagnosed MM patient, your prognosis is good. I believe you are stage 1 for the following reasons.

1) you progressed from pre-MM (SMM) to full MM recently.
2) you seem to be asymptomatic- meaning no CRAB symptoms, no end organ damage-

You are correct. The standard of care induction therapy is RVD (revlimid, velcade, dexamethasone) and it is aggressive. I’m not sure if the NHS has included darzelex in the English version of induction therapy.

To understand the aggressive philosophy of conventional oncology read the cure vs. control debate linked below-

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3923461/

The FDA and NHS promote one standard of care that applies to ALL newly diagnosed MM patients regardless of age, stage, symptoms, etc. MM is a rare blood cancer so my thinking is that it is too difficult to promote many different SOC therapy plans.

Your consultant will also probably promote an ASCT and low dose maintenance therapy to follow. Again, all aggressive.

In the US, 96% of all NDMM patients are advanced (stage 2,3). This group of patients usually benefit from aggressive therapy simply because they have more MM in their bones.

You are an outlier (I mean this is a positive way :-). Meaning you don’t fit the averages. My guess is that you discovered your SMM 7 years ago by accident.

Ideas to change your aggressive SOC therapy plan are:

1) In the US, the age for “elderly MM patients) is 75. I know you don’t look elderly but the SOC for elderly patients is low dose therapy meaning low dose revlimid plus dexamethasone.

2) Another idea would be to have your consultant buy into “RVD lite.” This is RVD but at much lower doses aka less toxicity. If you are tested monthly you can limit the monthly doses to only as much chemo needed to make your numbers come back to the normal range.

3) Lastly, you can undergo the usual SOC regimen but again, limit the rounds of therapy- meaning stop chemo when you reach remission.

The bottom line is the relationship you have with your consultant. Can the two of you agree on your less aggressive therapy plan?

Let me know if you have any questions.

Hang in there,

David Emerson

Reply