Hi dianaiad,
I'm very sorry to hear about your plasmacytomas. On the other hand, your systemic numbers look good.
What I don't understand is why having the plasmacytomas in your skull seems to rule out radiation.
There are plenty of folks (some having posted on this forum, I believe) who have undergone radiotherapy for skull-based plasmacytomas.
Did your doctor explain his reasoning?
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Second autologous stem cell transplant at relapse
The consensus seems (I'm still working through the doctor's opinions here) to be that they don't want to use radiation where they are because they don't want to radiate the brain. Right now the plasmacytomas are in the bone only, though one of 'em is scratching at the door, so to speak.
Other than that?
Who knows?
My hematologist-oncologist is the one going for the transplant the most. I think it's because my last one did so well. I'm 'high risk' with that pesky p17 deletion, that he wants to hit me with it again while my numbers are still good and the only thing we're dealing with is the plasmacytomas.
It may be because I'm also in physically better shape this time. The induction regimen last time, CyBorD (cyclophosphamide, Velcade, and dexamethasone), knocked me pretty much out, and I had to deal with having my teeth pulled for dentures AND cataract surgery because of the dex. Velcade was really nasty because of the peripheral neuropathy. I was a bit of a mess last time.
This time, though, except that Tuesdays (dex days) are miserable, I'm pretty much sailing through treatment, and this time I'll be able to walk into the transplant center, and not be wheeled in. Something tells me that my hematologist-oncologist is hoping for a real sucker punch.
Or something.
I'm confused.
Other than that?
Who knows?
My hematologist-oncologist is the one going for the transplant the most. I think it's because my last one did so well. I'm 'high risk' with that pesky p17 deletion, that he wants to hit me with it again while my numbers are still good and the only thing we're dealing with is the plasmacytomas.
It may be because I'm also in physically better shape this time. The induction regimen last time, CyBorD (cyclophosphamide, Velcade, and dexamethasone), knocked me pretty much out, and I had to deal with having my teeth pulled for dentures AND cataract surgery because of the dex. Velcade was really nasty because of the peripheral neuropathy. I was a bit of a mess last time.
This time, though, except that Tuesdays (dex days) are miserable, I'm pretty much sailing through treatment, and this time I'll be able to walk into the transplant center, and not be wheeled in. Something tells me that my hematologist-oncologist is hoping for a real sucker punch.
Or something.
I'm confused.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Second autologous stem cell transplant at relapse
Hi Dianaiad,
I love your humor and find comfort in your outlook. I am beginning my harvest in August for a tandem transplant and still feel somewhat in the dark in understanding this disease. The tandem just came up in the visit after the testing for one transplant. Now I am told we will do a tandem transplant due to my high risk of relapse (del of tp53 17, 13 etc).
I pretty much say yes to the cancer center's suggestions. I have not been great at gaining a full understanding of the disease, the numbers, IgG, etc. I am single so have pretty much been trying to be my own advocate while dealing with all the other life changes this disease has thrust upon me. Ugh!
Overall to date I have been lucky. Worked thru the Velcade, Revlimid, and dexamethasone (VRD) treatments while traveling extensively for work (hardest part was planning around the treatments and remaining rested). Fatigue was great, other symptoms from the drugs manageable. Dex, not my friend: made me angry and emotional, although I could clean the house, yard, car, and still keep going with 8 hours of sleep in 2 days before I crashed. Crashed hard!
Keep pushing! Thank you for sharing. I will do my best to keep reading and posting updates. Hug!
I love your humor and find comfort in your outlook. I am beginning my harvest in August for a tandem transplant and still feel somewhat in the dark in understanding this disease. The tandem just came up in the visit after the testing for one transplant. Now I am told we will do a tandem transplant due to my high risk of relapse (del of tp53 17, 13 etc).
I pretty much say yes to the cancer center's suggestions. I have not been great at gaining a full understanding of the disease, the numbers, IgG, etc. I am single so have pretty much been trying to be my own advocate while dealing with all the other life changes this disease has thrust upon me. Ugh!
Overall to date I have been lucky. Worked thru the Velcade, Revlimid, and dexamethasone (VRD) treatments while traveling extensively for work (hardest part was planning around the treatments and remaining rested). Fatigue was great, other symptoms from the drugs manageable. Dex, not my friend: made me angry and emotional, although I could clean the house, yard, car, and still keep going with 8 hours of sleep in 2 days before I crashed. Crashed hard!
Keep pushing! Thank you for sharing. I will do my best to keep reading and posting updates. Hug!
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Second autologous stem cell transplant at relapse
I have had plasmacytomas in my skull for the whole ten years I have known I have multiple myeloma. Had an autologous stem cell transplant in 2008, and again in 2015. Never did maintenance. They stay stable, so don't seem to be problem. Ten years, less than 12 months (did pretreatment before first transplant; light chains were off the charts). But I have 11:14 multiple myeloma, so I don't know how that adds to the mix.
Interesting how different treatment plans are. Only had one PET scan, that was in 2007 or 2008. Same with MRI's. I like it that way. But everyone has to find what works for them.
Interesting how different treatment plans are. Only had one PET scan, that was in 2007 or 2008. Same with MRI's. I like it that way. But everyone has to find what works for them.
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jjc
Re: Second autologous stem cell transplant at relapse
Dianaiad,
I have discovered that my case has some similarities to yours,:
After being diagnosed with kappa light chain myeloma, I had induction therapy with Revlimid, Velcade, and dexamethasone, followed by an autologous stem cell transplant (ASCT) in August 2014. This achieved a complete response (CR), I have been on Revlimid maintenance since.
A few months ago, a PET/CT showed a plasmacytoma on my spine (sacrum). Radiation resolved that. then a few weeks ago a subsequent PET/CT showed new activity on my chest (sternum).
Now the doctor gave me two options:
I know what you mean regarding caregiver issues and elderly parent to take care of etc.
All so overwhelming.
Larry
I have discovered that my case has some similarities to yours,:
After being diagnosed with kappa light chain myeloma, I had induction therapy with Revlimid, Velcade, and dexamethasone, followed by an autologous stem cell transplant (ASCT) in August 2014. This achieved a complete response (CR), I have been on Revlimid maintenance since.
A few months ago, a PET/CT showed a plasmacytoma on my spine (sacrum). Radiation resolved that. then a few weeks ago a subsequent PET/CT showed new activity on my chest (sternum).
Now the doctor gave me two options:
- Kyprolis-Pomalyst-dexamethasone for 3 or 4 cycles, followed by another autologous stem cell transplant, or
- Darzalex-Pomalyst-dexamethasone for 8 weeks, then 8 bi-weekly treatments, followed by monthly Darzalex indefinitely (for the rest of my life?).
I know what you mean regarding caregiver issues and elderly parent to take care of etc.
All so overwhelming.
Larry
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Larmo222 - Name: Larry M
- Who do you know with myeloma?: me
- When were you/they diagnosed?: February, 2014
- Age at diagnosis: 58
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