My previous therapies-
- In January of 2019 I received 3 rounds of Dexamethasone. Cyclophosphamide and Velcade/bortezomib followed by
- autologous stem cell transplant I opted for no maintenance then but I’m now undergoing a biochemical relapse.
Finally my freelight chain ratio is creeping close to 100 so I had a visit over to our provincial myeloma specialist. He offered me two choices. This is where I’m struggling.
- I can do another autologous stem cell transplant or
- go on Daratumumab, Revlimid, Dexamethasone which I stay on until it quits working.
Problem here is when that fails the next line of treatment, CAR-T cell therapy, is not available in our neck of the woods. It may be by the time I relapse again.
If I did take the transplant it would likely be up to two years based on my first remission which was better than average. When that failed I could go to the DRD treatment. If I do DRD now the transplant will be off the table if and when I relapse as he said it wouldn’t likely help then.
I really don’t want to transplant again but I also hate to lose that option considering car-t isn’t available and may not be an option here in western canada when I need it. I can’t afford to pay out of pocket for it.
I value your opinion, you’re certainly one of the more educated people and we share similar type of myeloma. I’ve spent the past year hitting this relapse with every type of supplemental support I can. It’s paused it three times but then the numbers keep rocketing up. I believe I need to do some type of treatment now it’s just a fork in the road I wasn’t expecting. I don’t want any regrets. Kate
To Learn More about Relapsed Myeloma- read the posts linked below-
A couple of issues to lay the groundwork so to speak.
- Your first remission based on an ASCT of 4 years is above average. The study linked below is difficult to understand. However, I think it says that you should respond better/longer to a second ASCT because you did well with your first.
- If you tell me that you are slowly relepsing and point to a FLC ratio of 100, I am going to assume that you are early in your relapse and therefore should respond to any treatment better than the mm patient who’s relapse is aggressive.
- saving darzelex/daratumumab for possible relapse down the road is a good plan.
For a variety of reasons, I am biased against aggressive, high dose therapy. I consider the below to also be options.
- You can undergo low-dose revlimid- say 5 or 10 mg. You didn’t undergo much revlimid during your induction. I would consider also undergoing curcumin as research cites curcumin as enhancing the efficacy of revlimid. See below.
- If I understand your therapy history, you have had only three (3) rounds of velcade/bortezomib. I don’t believe that your MM has become refractory to velcade after only 3 rounds. In addition, velcade has been shown to be enhance with several supplements such as curcumin, others.
I kinda remember another Canadian MM patient telling me that your health plan does not allow for the second time use of any chemotherapy regimen. If this is the case then consider other protease inhibitors such as ninlaro, kyprolis/carfilzomib-
To summarize- if you can undergo revlimid for a time and then velcade for a time I think CAR-T therapy will be available to all MM survivors.
Let me know if you have any questions. I hope this helps.
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
“On multivariate analysis, disease status prior to AHCT2 was the only variable prognostic for relapse/progression, PFS and OS. Compared to patients with ≥VGPR prior to AHCT2, the risk of relapse/progression was significantly higher in patients with partial response.
- Similarly, patients in PR had significantly worse PFS compared to those in ≥VGPR.
- Further, those patients in PR had significantly higher hazards of mortality compared to those in ≥VGPR.
“Background: Curcumin, the active component of the Curcuma longa plant, has been shown to potentiate the effect of the immunomodulatory drugs (IMiDs) thalidomide and Bortezomib against human myeloma cell lines and a nude mice model. Its effect on the other IMid, lenalidomide, has not been evaluated. This study aims to investigate the mechanism of action of curcumin and its potential ability to positively interact with lenalidomide.
Method: we designed an in-vitro study to investigate the cytotoxic and chemo-sensitising effects of curcumin alone and in combination with lenalidomide on the human myeloma H929 cell line.
Results: Incubation of H929 cells with curcumin (30mM) or lenalidomide (2.5 mM) for 3 days resulted in 26.35% (±1.06) and 30.81%(±2.98) apoptotic cells respectively. When 30 mM curcumin was combined with 2.5 mM lenalidomide, 50.4% (±3.37) apoptotic cells were detected by flow cytometry and the increase was significant compared to either curcumin alone or lenalidomide alone (anova p = 0.0026). Furthermore, gene analysis studies show that curcumin enhances the cytotoxic effect of lenalidomide via suppression of the cereblon and multi-drug resistant genes.
Conclusion: Curcumin exerts a cytotoxic effect additive to that of lenalidomide on H929 myeloma cells, and it also enhances the chemo-sensitizing effects of this agent.”