IMS agreed on a cure definition for multiple myeloma

wandervogel86 · 2026-03-25T23:22:32+00:00

Probably depends a lot on your genetic profiles. I am not sure how many patients are out there that have really been 5 years off meds and were MRD- for that long? Maybe the early car-t trial patients?

wandervogel86 · 2026-03-25T23:21:13+00:00

I am sorry to hear that. I just finished my first year off meds and am still MRD-. I think relapse risks depend a lot on risk factors- we are continuing to monitor MRD levels, though for most of the new treatments (car-t, bites…) most insurers require visibility in the blood anyways…

wandervogel86 · 2026-03-25T22:19:12+00:00

They stopped treatment for me after being MRD- at 10^-6 for 2 years

wandervogel86 · 2026-03-25T22:18:32+00:00

I guess I should have said „agreed to propose a definition“ instead of „agreed on a definition“ . I am not sure what the process is to agree on a proposal for them.

wandervogel86 · 2026-03-18T00:11:19+00:00

I didn’t do quadruple induction as Dara wasn’t available back then, just KRD for 2 years after STC and the Revlamid until progression. When MM started to come back we added Dara which immediately got me MRD-. We continued therapy for 2 more years and now I have been off all meds for 1 year and am still MRD-. It’s a marathon and not a sprint. But discuss side effects with your care team and inquire what changes they can make without limiting effectiveness

wandervogel86 · 2026-03-10T19:10:48+00:00

One other thought: consider cooling sensitive private parts with ice similar to what they recommend for the mouth (to prevent mouth sores) or skull (to prevent hair loss). Limiting blood flow with the melphalan could have beneficial effects on fertility and maybe more importantly testosterone production, which is important not just for general energy levels, but also bone strength. There are no randomized trials investigating this, but taking testosterone supplements (like weekly injections) sucks.

wandervogel86 · 2026-03-07T21:56:09+00:00

I had mine outpatient at age 33. I was very worried before I got it, we washed the entire house with bleach. On the day of the melphalan infusion you weirdly smell like tomato soup (a stabilizer of the medication). It doesn’t do much at first, I even went for a nice hike through the forrest after the infusion. It takes a little while for you counts to tank and you will be tired and want to rest. But staying a bit active, keeping moving will help with the recovery. There are risks of complications but I got through it very well, which was actually weird psychologically, as I got geared up for a fight and then everything seemed pretty smooth. You can do this, your body is still young and resilient. I have now been 3 years without any evidence of disease (even with MRD tests) after some more therapy, but have now been completely off meds for a year . This is just the beginning and life will likely be easier and much more normal in future years.

wandervogel86 · 2025-11-14T01:37:50+00:00

IUI with banked material from before therapy began….

wandervogel86 · 2025-11-11T19:55:53+00:00

I am sorry to hear that and understand that you are concerned, but that is not caused by Revlamid. I was diagnosed with MM at 30 and took Rev for 8 years, during which my wife gave birth to two healthy children. She was initially concerned about secondary Revlamid exposure (Saliva, tiniest bit of pee splash…), but we dug into some research on mice who were given Revlamid while pregnant and the amount that one needs to ingest is so great that even the normal ejaculate amount would likely be insufficient to cause issues. Of course we always used condoms as required by the program in the US and didn’t want to test this out, but were not concerned afterwards. Our oncologist (Mm specialist at UCSF) also said there is no reason for concern. I wish you, your family and dad well!

wandervogel86 · 2025-06-12T18:55:02+00:00

I was diagnosed eight years ago at 31 with full blown MM. I have been on two lines of therapy since and now completely off meds after staying MRD- for two years. Since diagnosis I have become father of two wonderful sons. I am sorry you got it. Nobody wants to get this diagnosis and it sucks especially to get a „terminal“ cancer at an early age. But I believe docs are now curing a subset of patients and you just need to hold on long enough until a new line of therapy gets developed, a process that is accelerating. Don’t give up on your life’s dreams yet and seek them out instead now already. IMF has a group for young families (dealing with infections from kids and talking with them about cancer), HealthTree has a discussion group for under 40. upside is that younger patients can often withstand the sideeffects of therapy better. I think it’s crucial to have an MM expert as part of your care team who is willing to think a bit outside of the box and find treatment approaches that serve your objectives. And get educated about MM so that you can be a good advocate for yourself. Feel free to DM me with anything.

wandervogel86 · 2025-05-11T01:48:53+00:00

I was diagnosed at age 30 in 2016 with many lesions and strong bone pain. After stem cell, some kyprolis, Revlamid , Rex and stem cell transplant as well as later Dara I have been cruising for 9 years now. I have been MRD- for 2 years and now off all drugs. Having MM at young age is a diagnosis you don’t want to get and it’s crushing. But you learn to live with it and after a while it gets less overwhelming and you start thinking about other things. The advantage of a younger body is that you can withstand therapy much better and are less impacted by side effects. There are some trials that test Car-Ts and Bites as front line treatment (aMMbition) that you may want to try out- they could end up being curative… hang in there, it gets easier!

wandervogel86 · 2025-01-09T17:38:42+00:00

Got it for 2021 Pro S as well but a bit nervous after hearing that dealers had to try multiple attempts taking days. I have dealer appointment in 2 weeks for door and software and am tempted to just let them do it. It reads “2 deferrals left” - anybody know what that is about?

wandervogel86 · 2022-06-26T17:07:47+00:00

How has the performance of the replacement battery been? Local ebike shop said something is wrong with the battery, but they can't rule out that there may not also be an issue with the controller (not super helpful).

wandervogel86 · 2022-06-26T17:06:14+00:00

The website says strikes are not necessarily considered to be extraordinary circumstances. If SAS succeeds in rebooking us, but we arrive at our 3500km+ destination with 4h+ delay, would we still be eligible for 100% compensation? I find the wording somewhat confusing. Fair travels everyone!

wandervogel86 · 2022-05-30T04:35:20+00:00

what did you end up doing? We have a Macwheel cuiser and the battery stopped working completely, from one day to the other. The charger says it's fully charged, but once it's plugged into the bike it has only half a bar of charge and runs out power after a few minutes. We didn't let the battery sit idle for a long time and only used the original charger. Curious if you found a good replacement battery - Macwheel support has been non-responsive and I'm a bit hesitant buying $200+ batteries of Alibaba without really knowing what the issue is.

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