This is the 12th day from admission, and Day +8 from the transplant. Today also coincides with my average neutrophil count (ANC) reaching it's nadir (0). In my mind this was going to be the most challenging time, and I was determined to post.
Somehow, without any external justification, I consider this my "turnaround" day and am keenly focused on home. I keep thinking of that line from Richard III. "Now is the winter of our discontent. Made glorious summer by this sun of York". A bit overdramatic for this situation, but it does reflect a turning with some allowance for more hopeful days to come.
Side effects have been relatively mild and well controlled. I discontinued anti-nausea meds yesterday. Everything still seems to be intact.
I've done better so far than I had any reason to expect. For that one can only be grateful.
Fred
Forums
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: An occasional subjective stem cell transplant account
Hi Fred,
It's great that you made it to Day +8 with side effects that were just "relatively mild and well controlled." I hope that everything continued to go well during the rest of your inpatient stay, and that you are now home, rebuilding your strength, and getting back to the life you led prior to your transplant.
Good luck!
It's great that you made it to Day +8 with side effects that were just "relatively mild and well controlled." I hope that everything continued to go well during the rest of your inpatient stay, and that you are now home, rebuilding your strength, and getting back to the life you led prior to your transplant.
Good luck!
Re: An occasional subjective stem cell transplant account
Day +9 - +14
I found that my body responded favorably to the Neupogen injections with white blood counts and absolute neutrophil counts moving dramatically to allow my "release" on schedule on Day +14.
Subsequent to my discharge, I've now had two follow-up visits to the clinic and find that my lab results show steady improvement. I'm walking daily and feel like my endurance is coming around, strength seems to be a laggard but not unexpected. Interestingly, side effects that appeared at the end of my induction therapy and concerned me during the time I was waiting for the transplant seemed to have abated. The restless leg syndrome was the most troublesome with sleep disruption but now seems to have moved to the rear view mirror.
I'm now considering how to I might minimize "recovery" time to maximize whatever remission time will be afforded me. I'm also somewhat anxious as to the maintenance therapy that will be prescribed. High risk markers will probably eliminate me as a candidate for much of a drug holiday. My experience with the Revlimid, Velcade, and dexamethasone (RVD) regimen, especially at the end of the four-month cycle, causes me some apprehension as to the compromises in my quality of life a similar maintenance protocol will engender. But maybe lower dosages will allay those concerns?
Like many of you, fellow sojourners, the uncertainty that was always pushed aside and muffled during our seemingly blissful pre-diagnosis time is now front and center. I don't find this disturbing or uncomfortable but a signal to step forward with care and a certain carefulness. A philosophical quote that I embraced some years ago now rings more true that ever, "something which in the end still prefers a handful of 'certainty' to an entire wagon full of beautiful possibilities". Uncertainty provides unique rewards.
Fred
I found that my body responded favorably to the Neupogen injections with white blood counts and absolute neutrophil counts moving dramatically to allow my "release" on schedule on Day +14.
Subsequent to my discharge, I've now had two follow-up visits to the clinic and find that my lab results show steady improvement. I'm walking daily and feel like my endurance is coming around, strength seems to be a laggard but not unexpected. Interestingly, side effects that appeared at the end of my induction therapy and concerned me during the time I was waiting for the transplant seemed to have abated. The restless leg syndrome was the most troublesome with sleep disruption but now seems to have moved to the rear view mirror.
I'm now considering how to I might minimize "recovery" time to maximize whatever remission time will be afforded me. I'm also somewhat anxious as to the maintenance therapy that will be prescribed. High risk markers will probably eliminate me as a candidate for much of a drug holiday. My experience with the Revlimid, Velcade, and dexamethasone (RVD) regimen, especially at the end of the four-month cycle, causes me some apprehension as to the compromises in my quality of life a similar maintenance protocol will engender. But maybe lower dosages will allay those concerns?
Like many of you, fellow sojourners, the uncertainty that was always pushed aside and muffled during our seemingly blissful pre-diagnosis time is now front and center. I don't find this disturbing or uncomfortable but a signal to step forward with care and a certain carefulness. A philosophical quote that I embraced some years ago now rings more true that ever, "something which in the end still prefers a handful of 'certainty' to an entire wagon full of beautiful possibilities". Uncertainty provides unique rewards.
Fred
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: An occasional subjective stem cell transplant account
I did a short consolidation therapy post transplant (Kyprolis, Revlimid, and dex) but decided to stop it early so I can have the treatment available if I need it later. My M-spike has slowly gone down over the last 15 months and is almost undetectable. I'm doing well on just Revlimid, 10 mg. 14 days on 7 days off. If my numbers remain stable I'd like to see if I can reduce the Revlimid to 5 mg. I did have a recent and abrupt reminder about the risks of having a "toddler" immune system and am recovering from a nasty respiratory virus (RSV). Other than that, things are pretty normal.
Best wishes for a speedy recovery.
Best wishes for a speedy recovery.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: An occasional subjective stem cell transplant account
Hi Fred,
I am really impressed at how you've come through your transplant. From what you've written, it seems like your experience was one that falls into the "It was much easier than I expected" category, with none of the extreme (mainly GI?) side effects and infections that can often occur. That's great!
Best of luck with the ongoing recovery, and thanks again for writing about your experience.
Cheers!
I am really impressed at how you've come through your transplant. From what you've written, it seems like your experience was one that falls into the "It was much easier than I expected" category, with none of the extreme (mainly GI?) side effects and infections that can often occur. That's great!
Best of luck with the ongoing recovery, and thanks again for writing about your experience.
Cheers!
Re: An occasional subjective stem cell transplant account
Thanks, GoDucks, for sharing your maintenance experience. This is obviously my next pivot. I would hopefully find a similarly low level drug regimen to find the balance between life quality and progression free survival. Ah, the choices with which we find ourselves enmeshed.
Ian, I was certainly prepared for much worse, but alas it was not to be, thankfully. Somehow I would like to take credit for this outcome. The care team congratulated me and my specialist gave me a “fist bump” at my first post transplant appointment. As if I had anything to do with it! I was randomly assigned this diagnosis and just as randomly responded well to a difficult treatment. I’m still on this theme of uncertainty. An observer of much and controller of little.
Fred
Ian, I was certainly prepared for much worse, but alas it was not to be, thankfully. Somehow I would like to take credit for this outcome. The care team congratulated me and my specialist gave me a “fist bump” at my first post transplant appointment. As if I had anything to do with it! I was randomly assigned this diagnosis and just as randomly responded well to a difficult treatment. I’m still on this theme of uncertainty. An observer of much and controller of little.
Fred
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Farcical - Name: Fred
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2018
- Age at diagnosis: 66
Re: An occasional subjective stem cell transplant account
Stay positive and patient. My M-spike got down to 0.38 g/dL (3.8 g/l) during induction but quickly rebounded to 1.1 g/dL during the break in treatment prior to the autologous stem cell transplant. After my relatively non-eventful transplant, the M-spike was still 1.0, but steadily went down, even without maintenance. Now, 15 months post transplant, the M-spike is 0.13 g/dL, I'm no longer anemic, free light chain results are almost normal, and I mostly feel like my old self.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
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