Hi All,
I would be interested in hearing from anyone who has had an allogeneic (donor) transplant about how your recovery has gone.
I recently had an allo transplant (11th November) and was released from the hospital a week ago, and everything went well, and I have no other complaints ... but I am really struggling with fatigue. I didn't experience this with the auto transplant, but for some reason this time round, I am really short on energy, and I was wondering if this is common and how long it took for people to generally feel themselves again.
My bloods are all looking good WBC 5.4, HGB 10.9, PLT 88.
Thanks,
Grant
Forums
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
Re: How long to recover from an allo (donor) transplant?
Hi Grant,
I think the big factor is if you develop a higher grade acute or extensive chronic GVHD. I had an acute Grade 1 skin rash and sore gums for a month. I had (very) limited chronic GVHD for 1 month after discontinuing my immunosuppressive drug. I used myeloablative conditioning and I think my recovery was in line with the majority of patients
"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 .3, .6, and 1. SD. Bush et al26 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."
http://www.bloodjournal.org/content/114/1/7?sso-checked=true
Note they discuss a return to baseline. I did mine in first CR 4 months after completing an auto. Like the majority of patients 4 months after an auto and in CR, my quality of life was very good at that point. If you were not doing as well going in, it is likely you will not be doing as well after.
In looking back at my own recovery, it was a steady improvement until 6 months. At 6 months I got off my immunosuppressive drug (Prograf) and I noticed more improvement to where it is now. I had bone damage from the myeloma, but I think my quality of life is what it would have been if I never had myeloma at this point.
Most myeloma patients use reduced-intensity conditioning. Here is an abstract discussing patient recovery after a RIC allo.
"Reduced-intensity conditioning allogeneic HSCT (RIC) has less regimen-related morbidity and mortality than myeloablative allogeneic HSCT (MT) offering allogeneic transplantation to patients otherwise excluded. Whether these advantages improve health-related quality of life (HRQL) is unknown. We examined the HRQL effects of RIC and MT in patients with hematological diseases pre-transplant (baseline), days 0, 30, 100, 1 and 2 years following HSCT. HRQL was measured using the Short Form-36 Health Survey and the Functional Assessment of Cancer Therapy - General and BMT. Data were analyzed using mixed linear modeling adjusting for baseline HRQL differences. Patients (RIC=41, MT=35) were predominately male (67%), in remission/stable disease (65%) with an Eastern Cooperative Oncology Group status <or=1 (97%). HRQL progressively improved (P<0.01) in both groups with higher scores at day 100 compared to days 0 and 30; there was no difference between groups during early recovery. At 2 years, all survivors (n=43) reported HRQL similar or better than baseline. Results suggest RIC and MT patients experience a similar pattern of HRQL improvement during early recovery. Two-year survivors report a return to baseline or better in HRQL by day 100, with the exception of physical health in MT patients. "
http://www.ncbi.nlm.nih.gov/pubmed/16751786
Hope that helps and keep us up to date on how things progress.
Mark
I think the big factor is if you develop a higher grade acute or extensive chronic GVHD. I had an acute Grade 1 skin rash and sore gums for a month. I had (very) limited chronic GVHD for 1 month after discontinuing my immunosuppressive drug. I used myeloablative conditioning and I think my recovery was in line with the majority of patients
"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 .3, .6, and 1. SD. Bush et al26 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."
http://www.bloodjournal.org/content/114/1/7?sso-checked=true
Note they discuss a return to baseline. I did mine in first CR 4 months after completing an auto. Like the majority of patients 4 months after an auto and in CR, my quality of life was very good at that point. If you were not doing as well going in, it is likely you will not be doing as well after.
In looking back at my own recovery, it was a steady improvement until 6 months. At 6 months I got off my immunosuppressive drug (Prograf) and I noticed more improvement to where it is now. I had bone damage from the myeloma, but I think my quality of life is what it would have been if I never had myeloma at this point.
Most myeloma patients use reduced-intensity conditioning. Here is an abstract discussing patient recovery after a RIC allo.
"Reduced-intensity conditioning allogeneic HSCT (RIC) has less regimen-related morbidity and mortality than myeloablative allogeneic HSCT (MT) offering allogeneic transplantation to patients otherwise excluded. Whether these advantages improve health-related quality of life (HRQL) is unknown. We examined the HRQL effects of RIC and MT in patients with hematological diseases pre-transplant (baseline), days 0, 30, 100, 1 and 2 years following HSCT. HRQL was measured using the Short Form-36 Health Survey and the Functional Assessment of Cancer Therapy - General and BMT. Data were analyzed using mixed linear modeling adjusting for baseline HRQL differences. Patients (RIC=41, MT=35) were predominately male (67%), in remission/stable disease (65%) with an Eastern Cooperative Oncology Group status <or=1 (97%). HRQL progressively improved (P<0.01) in both groups with higher scores at day 100 compared to days 0 and 30; there was no difference between groups during early recovery. At 2 years, all survivors (n=43) reported HRQL similar or better than baseline. Results suggest RIC and MT patients experience a similar pattern of HRQL improvement during early recovery. Two-year survivors report a return to baseline or better in HRQL by day 100, with the exception of physical health in MT patients. "
http://www.ncbi.nlm.nih.gov/pubmed/16751786
Hope that helps and keep us up to date on how things progress.
Mark
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Mark11
Re: How long to recover from an allo (donor) transplant?
Wow, thanks Mark, that is really helpful!
I didn't even realise there was myeloablative conditioning or reduced-intensity conditioning - I need to find out which was used on me but I suspect it was myeloablative conditioning as I had 6 days of nasty chemo before transplant and I am still relatively young - but I will check.
With regard to overall QOL, there is some reassuring stuff in your mail. I was about 8 months post my auto so life was about as good as it could get before this as my baseline - I guess as you say it's early days and I need to see what happens in terms of GVHD, although I have a really good unrelated donor match.
Thanks again,
Grant
I didn't even realise there was myeloablative conditioning or reduced-intensity conditioning - I need to find out which was used on me but I suspect it was myeloablative conditioning as I had 6 days of nasty chemo before transplant and I am still relatively young - but I will check.
With regard to overall QOL, there is some reassuring stuff in your mail. I was about 8 months post my auto so life was about as good as it could get before this as my baseline - I guess as you say it's early days and I need to see what happens in terms of GVHD, although I have a really good unrelated donor match.
Thanks again,
Grant
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
Re: How long to recover from an allo (donor) transplant?
Hi Grant,
I had my allo on April 14, 2015. I was okay for two weeks, had an engraftment reaction after that which put me in congestive heart failure, but got past that. I had grade 1 GVHD of the gut, which lasted only about 6 weeks. I was fatigued for about 4 months, but feel GREAT now.
I have occasional nausea and a small rash on my back that goes away with OTC cortisone when it itches, and that's it. I am not on maintenance chemo. I have weaned off MMF and cyclosporine and am in process of weaning off sirolimus.
I feel almost as good as I did before the cancer started.
Cindy
I had my allo on April 14, 2015. I was okay for two weeks, had an engraftment reaction after that which put me in congestive heart failure, but got past that. I had grade 1 GVHD of the gut, which lasted only about 6 weeks. I was fatigued for about 4 months, but feel GREAT now.
I have occasional nausea and a small rash on my back that goes away with OTC cortisone when it itches, and that's it. I am not on maintenance chemo. I have weaned off MMF and cyclosporine and am in process of weaning off sirolimus.
I feel almost as good as I did before the cancer started.
Cindy
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CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: How long to recover from an allo (donor) transplant?
Hi Cindy:
I am thrilled to hear your update. I hope the progress proceeds unabated. All the best.
I am thrilled to hear your update. I hope the progress proceeds unabated. All the best.
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JPC - Name: JPC
Re: How long to recover from an allo (donor) transplant?
Hi Cindy,
Great to hear you doing so well. I followed your allo when you went through it, and I know it was fairly tough. So pleased to hear you are all good now!
Great to hear you doing so well. I followed your allo when you went through it, and I know it was fairly tough. So pleased to hear you are all good now!
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Grant - Name: Grant
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 43
Re: How long to recover from an allo (donor) transplant?
Hi Grant,
I had an allo in September 2012. I was nauseated for approx. 2 months but otherwise fine although a bit weak at first. I had to stay near the transplant center for several months so very peaceful and relaxing
. I did miss my family (and dog) though but they came to visit every week (not the dog!)
I ´ve had no GVHD but unfortunately the result of the allo (RIC) was not a total success with slowly increasing lambda light chains. I´ve received DLI that was effective but only for a short time and 10 months after the allo I started Revlimid; 5 mg to start with and now 25 mg. I am very tired from the Revlimid so quality of life could be better. But all in all, with high risk multiple myeloma, I´m happy to be alive 5, 5 years from diagnosis. I have not regretted my decision to do an allo but wish I had done it before my first relapse as most studies (but not all!) show better results when done in first CR.
Good luck to you Grant with your recovery!
I had an allo in September 2012. I was nauseated for approx. 2 months but otherwise fine although a bit weak at first. I had to stay near the transplant center for several months so very peaceful and relaxing
. I did miss my family (and dog) though but they came to visit every week (not the dog!)I ´ve had no GVHD but unfortunately the result of the allo (RIC) was not a total success with slowly increasing lambda light chains. I´ve received DLI that was effective but only for a short time and 10 months after the allo I started Revlimid; 5 mg to start with and now 25 mg. I am very tired from the Revlimid so quality of life could be better. But all in all, with high risk multiple myeloma, I´m happy to be alive 5, 5 years from diagnosis. I have not regretted my decision to do an allo but wish I had done it before my first relapse as most studies (but not all!) show better results when done in first CR.
Good luck to you Grant with your recovery!
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asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
Re: How long to recover from an allo (donor) transplant?
Hi Asa,
Great to see you post. You were diagnosed one month before me. Two high risk patients posting as 5 year survivors definitely shows the progress they are making with myeloma therapy. Do not forget that Revlimid is more effective after an allo. That is another benefit of the allo.
Have a great Holiday season!
Mark
Great to see you post. You were diagnosed one month before me. Two high risk patients posting as 5 year survivors definitely shows the progress they are making with myeloma therapy. Do not forget that Revlimid is more effective after an allo. That is another benefit of the allo.
Have a great Holiday season!
Mark
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Mark11
Re: How long to recover from an allo (donor) transplant?
Hi Mark,
Good to see you´re still doing fine! And maintaining your allo-educational mission! An allogeneic transplant is an important option for young high risk patients as I see so keep it up!
Holiday Greetings to you to!
Åsa
Good to see you´re still doing fine! And maintaining your allo-educational mission! An allogeneic transplant is an important option for young high risk patients as I see so keep it up!
Holiday Greetings to you to!
Åsa
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asaryden - Name: asaryden
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: August 2010
- Age at diagnosis: 48
Re: How long to recover from an allo (donor) transplant?
I had an allo in May 2014. I wish I could tell you that "I'm feeling back to normal," but it has not been the case. For me, fatigue is part of my life now. I am happy to report that my myeloma has been progression free since the transplant. It's just my "new normal".
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tcarpent01
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