Forums
post stemcell transplant
Trying to find ot what to expect after transplant. talk to people about thier experiences after procedure. hard to get straight answers from doctors.
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rodney martin - Name: rodney
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 49
Re: post stemcell transplant
Hi Rodney....some people don't have too much trouble with the transplant, from what I gather from talking to others at our local support group. Some of the younger men in particular seem to be strong enough to withstand the whole process. Others have a lot of tiredness...that was me. Probably it also makes a difference as to how long your hospital stay is. I was only in hospital for two days, and then a couple of weeks later, for two more days, due to having a fever. I personally don't think you can get much rest in a hospital, and allowed myself to be checked out as soon as possible, but everyone is different of course. We drove back and forth to the transplant clinic on a daily basis for the blood tests and other required checks, like BP, pulse, etc. My parents, in their eighties, were there for me at that time for driving...God bless them!! I also observed that there are 'volunteer drivers' at the cancer centre who perhaps I could have called upon. I didn't like to drive much when I had the central line. I was in the transplant clinic for many hours getting hydrated and waiting for the results of tests, as an out patient. The transplant nurses were just terrific, and the transplant doctors popped in from time to time to check on my progress.
The one thing that stands out is how I was in the care of others...the hospital staff and my family at home. The protocol was not to be left alone for something like two weeks after transplant. We were very careful to avoid infection. I had side effects from the ultra strong chemo drugs used in the harvesting and the transplant...I won't go into the details, but they eventually cleared up (and I now have a full head of hair again!). Oh...suck on the ice chips for hours when you have the malphalan, to prevent mouth and throat sores, the day before your stem cells are thawed out and returned to you..
It took me two weeks to recover enough to start walking outdoors again, with a buddy! Friends came by and took me out for walks... The fresh air and sunshine restored my spirits and built up my strength again. Best wishes on your transplant...hope your health is greatly improved by it! Although somewhat controversial, as you can certainly read on this website, the stem cell transplant is still regarded as part of the treatment for multiple myeloma, for patients who are thought to be able to benefit from it . That's why I signed on for it...mine was an 'auto' transplant...very few people have 'allo' transplants. i have only met one patient who has had an 'allo'. There is risk associated with either type of transplant, so best to be very cautious throughout the whole procedure!
Hope that helps...must away...am off for a walk with a friend along the river this a.m.!
The one thing that stands out is how I was in the care of others...the hospital staff and my family at home. The protocol was not to be left alone for something like two weeks after transplant. We were very careful to avoid infection. I had side effects from the ultra strong chemo drugs used in the harvesting and the transplant...I won't go into the details, but they eventually cleared up (and I now have a full head of hair again!). Oh...suck on the ice chips for hours when you have the malphalan, to prevent mouth and throat sores, the day before your stem cells are thawed out and returned to you..
It took me two weeks to recover enough to start walking outdoors again, with a buddy! Friends came by and took me out for walks... The fresh air and sunshine restored my spirits and built up my strength again. Best wishes on your transplant...hope your health is greatly improved by it! Although somewhat controversial, as you can certainly read on this website, the stem cell transplant is still regarded as part of the treatment for multiple myeloma, for patients who are thought to be able to benefit from it . That's why I signed on for it...mine was an 'auto' transplant...very few people have 'allo' transplants. i have only met one patient who has had an 'allo'. There is risk associated with either type of transplant, so best to be very cautious throughout the whole procedure!
Hope that helps...must away...am off for a walk with a friend along the river this a.m.!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: post stemcell transplant
This is my first post. I just want to say hello to everyone and tell you all how much I admire the patients and caregivers that post on this forum. I have been continually humbled by some of the special people in this world that I have come across since I began this journey with my Father on 8-10-11.
In my Father's case, he received a ASCT in early December. He is relatively young and very healthy. My Dad experienced extreme side effects during the time his white cell count was at zero. Worse than elderly sick patients even his doctor said. Let me tell you, after his white count went up, he felt great. He was walking, talking, and exercising. He just wanted out of the hospital. He got out about 5 days before Christmas. When he got out I expected him to be fragile and sleepy. This wasn't the case. He had more energy than before he even went in for the transplant. He had to take naps here and there, but that's about it. He didn't need any outpatient transfusions. Some days were worse than others, but overall I was really surprised at how well he transitioned. My Dad looked like he was dying. He couldn't even pick up the phone to talk to me when he was at his worst. Literally one week later he was like a new man. Quite amazing actually. This of course doesn't mean that my Dad's transplant was/is a success. Just that he physically and emotionally bounced back very quickly. Hope I gave you some of the info you were looking for. Currently we are dealing with the new treatment regimen since we just found out yesterday that my Dad didn't go into remission. He's stage I and has very low percentage of Myeloma cells, so I'm hoping and praying for the best with the next round of treatment.
In my Father's case, he received a ASCT in early December. He is relatively young and very healthy. My Dad experienced extreme side effects during the time his white cell count was at zero. Worse than elderly sick patients even his doctor said. Let me tell you, after his white count went up, he felt great. He was walking, talking, and exercising. He just wanted out of the hospital. He got out about 5 days before Christmas. When he got out I expected him to be fragile and sleepy. This wasn't the case. He had more energy than before he even went in for the transplant. He had to take naps here and there, but that's about it. He didn't need any outpatient transfusions. Some days were worse than others, but overall I was really surprised at how well he transitioned. My Dad looked like he was dying. He couldn't even pick up the phone to talk to me when he was at his worst. Literally one week later he was like a new man. Quite amazing actually. This of course doesn't mean that my Dad's transplant was/is a success. Just that he physically and emotionally bounced back very quickly. Hope I gave you some of the info you were looking for. Currently we are dealing with the new treatment regimen since we just found out yesterday that my Dad didn't go into remission. He's stage I and has very low percentage of Myeloma cells, so I'm hoping and praying for the best with the next round of treatment.
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Vin - Name: Vin C
- Who do you know with myeloma?: My amazing Father
- When were you/they diagnosed?: 8-10-11
- Age at diagnosis: 57
Re: post stemcell transplant
I don't understand when they tell you that you aren't in remission after such a short time from transplant. My m-spike was the same after transplant as it was when I went in - 0.6. I was disappointed, but my doctor never said that it hadn't been a successful treatment. About 6 months after the transplant I began to get reports that said that there was no monoclonal protein visible and no paraparesis evident. It still took a few more months before all of my blood levels reached normal range. So, don't despair this early in the game.
My oncologist had me start maintenance at day 100. After 5 days my body said "No way!" and responded badly to the medication. My oncologist took me off treatment and I have been drug free since then. My personal belief is that it was too soon for my body to manage chemo at that point. My m-spike is gradually rising, still under 1.0, and we have discussed what treatment I will start with when it goes above 1.0. I told him that I wanted to give Revlimid a try again because I felt that the trial as maintenance had been too early. He agreed. So, when it is time that is what we will start with.
My oncologist had me start maintenance at day 100. After 5 days my body said "No way!" and responded badly to the medication. My oncologist took me off treatment and I have been drug free since then. My personal belief is that it was too soon for my body to manage chemo at that point. My m-spike is gradually rising, still under 1.0, and we have discussed what treatment I will start with when it goes above 1.0. I told him that I wanted to give Revlimid a try again because I felt that the trial as maintenance had been too early. He agreed. So, when it is time that is what we will start with.
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: post stemcell transplant
I had that same exact question for the doctor. He said the m-protein is/has been very low, but the kappa chains have a shorter half-life and and are the same as pre transplant. I'd like to think that the numbers still might get lower despite what the doc said.
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Vin - Name: Vin C
- Who do you know with myeloma?: My amazing Father
- When were you/they diagnosed?: 8-10-11
- Age at diagnosis: 57
Re: post stemcell transplant
HI my name is Greg I am now 8 months post transplant. I am 49 years old. I was on Velcade and Revlimid i went through 3 rounds of chemo and Revlimid before transplant. I am an autologus used my own i am koppa light chain. I worked all through treatment. oh i ran, lifted and worked during all of this
Then they did stem cell collection gave me a week off then hit me with chemo hard for 2 days may 16th and 17and a day rest and did transplant may 18th I was up walking the floor doing laps to excersize and even got a stationary bike brought in my room. I was in hospital for 4 weeks then took 5 weeks off from work in sunny cal. June 3 rd i ran 5 miles. I made some drastic eating changes but i never stopped runing, I told my doctors i will give you 10 weeks and i am back to work.
January 17th 2012 i am running 5 miles almost every day and working.
Good luck and god bless. Attitude is everything
My moto
Cancer is mind over matter i dont mind and it dont matter. I am fighting this with me and God by my side.
Then they did stem cell collection gave me a week off then hit me with chemo hard for 2 days may 16th and 17and a day rest and did transplant may 18th I was up walking the floor doing laps to excersize and even got a stationary bike brought in my room. I was in hospital for 4 weeks then took 5 weeks off from work in sunny cal. June 3 rd i ran 5 miles. I made some drastic eating changes but i never stopped runing, I told my doctors i will give you 10 weeks and i am back to work.
January 17th 2012 i am running 5 miles almost every day and working.
Good luck and god bless. Attitude is everything
My moto
Cancer is mind over matter i dont mind and it dont matter. I am fighting this with me and God by my side.
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greg matthews - Name: Greg Matthews
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12-28-2010
- Age at diagnosis: 48
Re: post stemcell transplant
That's quite amazing and inspiring Gregg. Good luck in the future and keep up the good work.
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Vin - Name: Vin C
- Who do you know with myeloma?: My amazing Father
- When were you/they diagnosed?: 8-10-11
- Age at diagnosis: 57
Re: post stemcell transplant
"Cancer is mind over matter i dont mind and it dont matter."
Greg-I like it!! Thanks, Stan
Greg-I like it!! Thanks, Stan
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Stann
Re: post stemcell transplant
I am coming up on my 1yr "New Birthday" on Jan 30 2012. I was admitted to Scripps Hospital on January 28, 2011...ASCT on January 30th 2011, back at work on 3/6/2011. The key is, as mentioned in some of the other replies is to "keep moving" preferably forward. I was diagnosed 9/7/2010 at 54. I have been in remission for 1 year. The most significant issues were due to my body reacting to all the medication I was receiving. Once I stopped all meds, I began to feel alot better.
My motto: " Life is not waiting for the storm to pass, it is learning to dance in the rain"
Good luct to all.
My motto: " Life is not waiting for the storm to pass, it is learning to dance in the rain"
Good luct to all.
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djkvegas - Name: David Keegan
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: September 3 2010
- Age at diagnosis: 54
Re: post stemcell transplant
I was dx Feb. 2011, went through VelDex chemo and had an ASCT on Set. 21. I am very tolerant of cancer drugs it turned out. This was key to my approach and return to health. Like Greg I worked through the whole year. I took three weeks off for the transplant but made sales calls from my hospital bed. I was offered the option of hospitalization or release to home with daily outpatient trips. We have two little angels, 8 and 10, we adopted from China, I'm 58, and Barb had her hands full so I chose to stay in hospital. I was transferred from the transplant ward to the clinic in 12 days almost setting a record. I've never had troubles with fevers or infections but many do.
The ASCT made me very weak and sick. This was the point that scared me the most, it was unfounded in hind sight. I bounced back well and was working through it all. I'm an oilfield salesman so my work is conducive to working from home and involves lots of computer/phone time. I was making remote back country trips in October. I did find it was very much a process of speed ahead for a week or two then crash for a week or two. Flowing with this process really made it easy. Don't fight fatigue, rest with a daily walk worked miracles during rough patches.
The attitude that drove me was to deal with the hassle of cancer myself. I drove myslf to all treatments but two. Except for a couple key appointments I attended all appointments alone. This is not for everyone but I'm built this way. I admired how families rallied around fellow patients to support them. Me, I'm an old bear. Just throw food in my cave while I lick my wounds! It was also important to portray strength and courage to my children regardless to how I might really feel. I am very proud of how Barb and I guided our children through the cancer grind. Barb had lots to deal with the girls and the selfless homecare for me. I'm really blessed to live only a couple miles from an excellent multiple myeloma cancer center that made this possible. I even occasionally feel blessed that if I had to get the big C that it was multiple myeloma and I am a Canadian.
The ASCT made me very weak and sick. This was the point that scared me the most, it was unfounded in hind sight. I bounced back well and was working through it all. I'm an oilfield salesman so my work is conducive to working from home and involves lots of computer/phone time. I was making remote back country trips in October. I did find it was very much a process of speed ahead for a week or two then crash for a week or two. Flowing with this process really made it easy. Don't fight fatigue, rest with a daily walk worked miracles during rough patches.
The attitude that drove me was to deal with the hassle of cancer myself. I drove myslf to all treatments but two. Except for a couple key appointments I attended all appointments alone. This is not for everyone but I'm built this way. I admired how families rallied around fellow patients to support them. Me, I'm an old bear. Just throw food in my cave while I lick my wounds! It was also important to portray strength and courage to my children regardless to how I might really feel. I am very proud of how Barb and I guided our children through the cancer grind. Barb had lots to deal with the girls and the selfless homecare for me. I'm really blessed to live only a couple miles from an excellent multiple myeloma cancer center that made this possible. I even occasionally feel blessed that if I had to get the big C that it was multiple myeloma and I am a Canadian.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
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