Would like to know how long the recovery time has been for people that have had stem cell transplants?
Sure would, personaly I still have not fully recovered from my Second one yet! 9 months ago!
I’m trying to get a sound answer for you on this. My boss is a Stem Cell transplant physician and I’ve asked him for information. As soon is it comes available, I share with you both
Thanks Danielle, I really appreciate it.
I'm so sorry for the delay. My boss is out of the country and hasn't responded yet. I did find the following information from a physician source that may be helpful. Please know that this is information is frank and directed at physicians.
Autologous hematopoietic cell transplantation in multiple myeloma:
Quality of life following hematopoietic cell transplantation:
Supportive care after hematopoietic cell transplantation:
Beyond the basics: Patient information: Bone marrow transplantation (stem cell transplantation)
They say it takes 6 months, as a rule. I had my first stem cell transplant on Sept 22 this year, and I must say at first I believed them, but recovery is accelerating... I would think I am about 40-50% better at this point.
I could drive 3months later and a year out I started feeling better. I can not work as a nurse any longer as I have no immune system. I am back to needing chemo two years later.
I am 39 and had 2 last year, (January and May), and I recovered really fast both times. A bit faster the second time. For a few weeks I was tired easily but other than that I was pretty normal a few days after coming home. I came home on day 13 the first time and 11 the second. The port and baldness bothered me more than any physical sickness or weakness. I was lucky to have no infections or fever which slows things down typically. I went into it with no other myeloma related health issues also.
I am glad everything went well for you. That is very encouraging. May I ask why you had to have 2 transplants? Was there a problem with the first one? How long was it before you were allowed to go back to work afterwards?
I think it depends on what kind of transplant you have (auto vs allo) and what your stability is going into the transplant as well as co-morbidities and risk factors such as other medical diagnoses, age, etc. but when I had my auto 6 years ago I was told after 3 months I would feel about 50% better but still had significant limitations on my activity, etc. By 6 months I felt about 80% better but still had to be careful. and by about 9 months I was feeling just about 100% better.
I think it is different for different people. I know someone who was bound and determined to hike and mountain climb in the Alps, 6 weeks following his transplant. He had been planning the trip since he was 12 ... he had only known about the Myeloma for about 4 months prior to the transplant and figured that the mountain climbing trip with his buddies was much more important to him.
I had a blood infection following my asct and was in the hospital for 24 days. I spent the next several months walking as much as I could and trying to do some kind of exercise each day. I was taking Thalidamid for maintenance and developed neuropathy in my feet and fingers. This did not help matters at all, and made it much harder to walk. My vision has never really returned to what it was prior to my asct ... I am hoping that now I am no longer on Dex that it will be better.
When I look back, it is hard to believe that it only lasted 9 months ... the cancer clinic that I am a patient with does not do more than one asct. I could go to Toronto and get one, but, I am not sure if the benefits over ride the side effects, but would I do it over again if I had to do it. YES I would. I am looking for a cure for my MM.
I agree it depends on the type of transplant and remember everyone is different. I had a tandem Auto in 11/2004 and 2/2005. Against all doctors orders i went back to work the day after I got home, weak but board. They say 100 days befoer you can return to work due to very low immune system. You need to be very careful stay away from any close contact with people, door knobs, money, etc. anything that collects germs and bacteria. I recommend following doctors directions fully after SCT. My major discomfort was being cold, chills all the time. I would go to work at 4am and return before any co-workers came in. I stayed away from close contatct with anyone, washed my hands very frequently, and sipped on soup broth a lot. After about 4 months I was able to go back to regular activity although being very aware of my supressed immune system and taking precautions to protect myself. As mentioned we are all different and it may take more time for recovery for some. Good Luck, "stay positive and strong" !!!!.....Ciao
Update: I am almost 4 months out now after my first auto transplant (Sept 22)... and I am definitely coming around. Yesterday I shoveled (a 3" fall of wet stuff), made a pot of soup, a spagetti dinner, and spent about 3 hours coding for my website. Tired, but not inordinately. It appears both mind and body are coming back 'online' quite nicely!
Also, my immune system seems to be much stronger again: I've had one week of a cough, and got over that... and the world around me is sniffling and coughing and carrying on like crazy.