My 59 year old husband was diagnosed with lambda light chain multiple myeloma with deletion 17p and 13q. He is being treated at Moffitt Cancer Center in Tampa, Florida.
We were originally given a prognosis of 24 to 36 months until we went to Moffitt for a second opinion. They recruited him for a clinical trial that consists of an allogeneic stem cell transplant with a year of maintenance on Ninlaro. They said they hoped this would be curative.
Does anyone out there have allogeneic transplant experience? I am very afraid for him and worried sick.
Forums
3 posts
• Page 1 of 1
-
Mimi - Name: Mimi
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 58
Re: Doing trial - allo transplant and Ninlaro maintenance
Hi Mimi,
Best of luck to your husband moving forward. Here is a link to a discussion we had last year that sums things up fairly well, in my opinion. Note the 3 patients in the thread that did an allo as part of their upfront therapy were happy with their decision and the patients that never did one generally had negative comments about the procedure.
"Decision time - should I do an allo transplant?" (started Nov 12, 2015)
My own experience and the long term survivors that did upfront allos for various blood cancers that I have met seem to show that the studies that show that about 80% of allo survivors have a good to excellent quality of life are accurate. I would rate mine as excellent at this time (5 years out).
"Survivors also report good overall QOL, particularly as time from transplantation increases. Overall QOL follows a similar pattern to role functioning, with deficits immediately after transplantation, and return to baseline levels at day 100. After day 100, overall QOL may stabilize or continue to improve, with patient ratings similar to or better than baseline at 6 months, 1 year, 2 years, and 3 years. Long-term improvements in overall QOL relative to baseline were of a magnitude of 0.3, 0.6, and 1.132 SD. Bush et al found that 1, 2, 3, and 4 years after transplantation, 73%, 76%, 81%, and 80% of survivors rated their overall QOL as good to excellent, respectively. By 2 years after transplantation, 71% of survivors reported that they had recovered from their transplantation, up from 41% at 6 months and 66% at 1 year."
From:
Pidala, J, et al., "Quality of life after allogeneic hematopoietic cell transplantation," Blood, Jul 2, 2009 (full text)
Note Robin Roberts recovery. That is basically what I experienced and I would think is common for patients that do allos in first complete response in 2016.
Keep us up to date. I am curious what kind of cure rate they will have for the patients that do the transplant as part of upfront therapy in this trial. I am hoping it is high and positive energy being sent that your husband is one that gets cured!
Mark
Best of luck to your husband moving forward. Here is a link to a discussion we had last year that sums things up fairly well, in my opinion. Note the 3 patients in the thread that did an allo as part of their upfront therapy were happy with their decision and the patients that never did one generally had negative comments about the procedure.
"Decision time - should I do an allo transplant?" (started Nov 12, 2015)
My own experience and the long term survivors that did upfront allos for various blood cancers that I have met seem to show that the studies that show that about 80% of allo survivors have a good to excellent quality of life are accurate. I would rate mine as excellent at this time (5 years out).
"Survivors also report good overall QOL, particularly as time from transplantation increases. Overall QOL follows a similar pattern to role functioning, with deficits immediately after transplantation, and return to baseline levels at day 100. After day 100, overall QOL may stabilize or continue to improve, with patient ratings similar to or better than baseline at 6 months, 1 year, 2 years, and 3 years. Long-term improvements in overall QOL relative to baseline were of a magnitude of 0.3, 0.6, and 1.132 SD. Bush et al found that 1, 2, 3, and 4 years after transplantation, 73%, 76%, 81%, and 80% of survivors rated their overall QOL as good to excellent, respectively. By 2 years after transplantation, 71% of survivors reported that they had recovered from their transplantation, up from 41% at 6 months and 66% at 1 year."
From:
Pidala, J, et al., "Quality of life after allogeneic hematopoietic cell transplantation," Blood, Jul 2, 2009 (full text)
Note Robin Roberts recovery. That is basically what I experienced and I would think is common for patients that do allos in first complete response in 2016.
Keep us up to date. I am curious what kind of cure rate they will have for the patients that do the transplant as part of upfront therapy in this trial. I am hoping it is high and positive energy being sent that your husband is one that gets cured!
Mark
-
Mark11
Re: Doing trial - allo transplant and Ninlaro maintenance
Hi Mimi,
Welcome to the forum.
If you're husband is being seen by the people at Moffitt, he is in good hands. They have a large and experienced group of myeloma specialists there.
The discussion Mark has pointed you to is very helpful. In general, there have been a lot of discussions here in the forum about allogeneic transplants. This link will take you to many of them. The link is just one of many helpful links in this forum posting,
"Useful links to existing forum discussions"
which you can always find at the top of the "Treatments & Side Effects" section of the forum.
Good luck to you and your husband. Keep us posted on how he is doing.
Welcome to the forum.
If you're husband is being seen by the people at Moffitt, he is in good hands. They have a large and experienced group of myeloma specialists there.
The discussion Mark has pointed you to is very helpful. In general, there have been a lot of discussions here in the forum about allogeneic transplants. This link will take you to many of them. The link is just one of many helpful links in this forum posting,
"Useful links to existing forum discussions"
which you can always find at the top of the "Treatments & Side Effects" section of the forum.
Good luck to you and your husband. Keep us posted on how he is doing.
-
JimNY
3 posts
• Page 1 of 1
Return to Treatments & Side Effects