So the end of 2014 and now 2015 has brought new things to this roller coaster ride of myeloma.
The day after Christmas, it was discovered that our daughter now has 3 small plasmacytomas near her eyes. She is doing 10 radiation treatments. Along with radiation, she is on steroids again, which have always made her blood sugar go high. Now she has to test her blood sugar 4 times a day and has an insulin pen to use depending on the numbers. As someone who has been diabetic for 46 years since I was 14, I find this very upsetting.
She was set to do an allo transplant with her brother flying in from India as her donor, but now that is postponed. Not just because of the radiation treatment, but because the DCEP treatment she had in November brought her numbers down but not as much as they wanted.
It took her 6 weeks to recover after getting fungal pneumonia and C. diff, so her doctor at Jefferson in Philly has recommended she go to Penn to see about their clinical trials.
It will be 3 years since her diagnosis in January 2012. The last 6 months since relapse have been really hard. I just want her to do the allo transplant or CAR T-cell therapy so she can get off a lot of these med because they seem to be beating her body down.
I am completely jealous of the people I read about on here who are on maintenance and it's 8 or 10 years since diagnosis.
I'm just grateful our daughter had a good day today.
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Re: Plasmacytomas
Hi Terrij,
I really feel bad every time I read your posts about your daughter's struggles. I know it was rough on my parents when I was going through treatment / suffering through the side effects of the disease.
If you do not mind my asking, did your doctors discuss allo transplant as part of upfront therapy for your daughter?
I do not know if you have noticed, but there have been multiple postings of younger patients that have been struggling during the first few years after diagnosis. I really do not see how some patients / doctors view myeloma as a chronic / treatable disease. It seems a long way away for most patients to call myeloma a chronic disease, especially younger patients like your daughter.
Mark
I really feel bad every time I read your posts about your daughter's struggles. I know it was rough on my parents when I was going through treatment / suffering through the side effects of the disease.
If you do not mind my asking, did your doctors discuss allo transplant as part of upfront therapy for your daughter?
I do not know if you have noticed, but there have been multiple postings of younger patients that have been struggling during the first few years after diagnosis. I really do not see how some patients / doctors view myeloma as a chronic / treatable disease. It seems a long way away for most patients to call myeloma a chronic disease, especially younger patients like your daughter.
Mark
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Mark11
Re: Plasmacytomas
Mark,
They did not discuss allo transplantation as upfront therapy. Velcade and dex for 4 months put her in complete remission, followed by an auto transplant, then Revlimid maintenance.
She was in complete remission until May 2014. Increased Revlimid did not work, so in August they put her on carfilzomib (Kyprolis) and dex, which did not work. In. November, she had DCEP in preparation for the allo transplant.
Now we are headed to Penn.
They did not discuss allo transplantation as upfront therapy. Velcade and dex for 4 months put her in complete remission, followed by an auto transplant, then Revlimid maintenance.
She was in complete remission until May 2014. Increased Revlimid did not work, so in August they put her on carfilzomib (Kyprolis) and dex, which did not work. In. November, she had DCEP in preparation for the allo transplant.
Now we are headed to Penn.
3 posts
• Page 1 of 1