I have misplaced my records with your names and, as I get closer to my mini-allo (I'm on day 21 of auto), I am anxious to learn about your experiences - how you felt, side effects, GVHD, etc.
Thanks!
Cindy
Forums
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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: Experiences of those who have had allogeneic transplants
Hi Cindy,
Hope you are continuing to recover well from your recent auto stem cell transplant.
I don't want to limit any feedback you may get here from people who have undergone allo transplants. However, just so you have it, here is a link to most of the allo-related discussions here in the forum. I hope you'll find it helpful.
(And, yes, the above link is one of many that can be found in the "Useful links to previous forum discussions" posting that gets mentioned off and on ...
Good luck!
Hope you are continuing to recover well from your recent auto stem cell transplant.
I don't want to limit any feedback you may get here from people who have undergone allo transplants. However, just so you have it, here is a link to most of the allo-related discussions here in the forum. I hope you'll find it helpful.
(And, yes, the above link is one of many that can be found in the "Useful links to previous forum discussions" posting that gets mentioned off and on ...
Good luck!
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Boris Simkovich - Name: Boris Simkovich
Founder
The Myeloma Beacon
Re: Experiences of those who have had allogeneic transplants
Hi Cindy,
All positive energy being sent your way that the upcoming transplant will be the last myeloma therapy you will ever need!
My transplant experience will likely be much different from yours since I used myeloablative conditioning. I would describe my experience as a more complicated auto.
If possible, have the transplant center put you in contact with other patients who did the transplant in a similar manner that you are doing it. In my opinion, it does not matter if they are myeloma patients or not. I stay in contact with 3 other patients (1 ALL and 2 AML) who did the transplant similar to the way I did it, and our experiences are similar. The "Hutch" is such a large, well-regarded center they probably have numerous successful patients they could put you in contact with.
Keep good dialogue up with your nurses / doctors. One of the things that made me feel confident is that the doctors / nurses always told me what to expect in advance. I remember my doctor telling me at a visit around Day +35 or so that, by our visit the next week, I would likely have some sign of acute GVHD. Sure enough, 2 days before my next appointment, I started having a skin rash and sore gums.
I know GVHD can be a scary thing to think about, but I believe that it is the only side effect that having it is associated with long remissions / cure. You do want to have some. As you know, the drugs that are used for myeloma have side effects as well, and they are not curative.
Best of luck. You have been through a lot. There is light at the end of the tunnel!
Mark
All positive energy being sent your way that the upcoming transplant will be the last myeloma therapy you will ever need!
My transplant experience will likely be much different from yours since I used myeloablative conditioning. I would describe my experience as a more complicated auto.
If possible, have the transplant center put you in contact with other patients who did the transplant in a similar manner that you are doing it. In my opinion, it does not matter if they are myeloma patients or not. I stay in contact with 3 other patients (1 ALL and 2 AML) who did the transplant similar to the way I did it, and our experiences are similar. The "Hutch" is such a large, well-regarded center they probably have numerous successful patients they could put you in contact with.
Keep good dialogue up with your nurses / doctors. One of the things that made me feel confident is that the doctors / nurses always told me what to expect in advance. I remember my doctor telling me at a visit around Day +35 or so that, by our visit the next week, I would likely have some sign of acute GVHD. Sure enough, 2 days before my next appointment, I started having a skin rash and sore gums.
I know GVHD can be a scary thing to think about, but I believe that it is the only side effect that having it is associated with long remissions / cure. You do want to have some. As you know, the drugs that are used for myeloma have side effects as well, and they are not curative.
Best of luck. You have been through a lot. There is light at the end of the tunnel!
Mark
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Mark11
Re: Experiences of those who have had allogeneic transplants
Thanks Mark! I am now on Day 23 of my auto and still suffering with a fair amount of nausea. The target date for my mini-allo is Day 40, but that may get pushed back a little. The Phase 2 clinical trial I will be in uses a different trio of meds designed to limit the amount of GVHD. I am hopeful that I will get just enough for the anti-myeloma effect.
The Hutch won't give me any other patient names, so I am making conversations in the waiting room, trying to find them myself. Once my counts go up a little more, I may go to the transplant support group and scope out that crowd.
The Hutch won't give me any other patient names, so I am making conversations in the waiting room, trying to find them myself. Once my counts go up a little more, I may go to the transplant support group and scope out that crowd.
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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: Experiences of those who have had allogeneic transplants
Hi Cindy,
This is a great idea:
"... so I am making conversations in the waiting room, trying to find them myself. Once my counts go up a little more, I may go to the transplant support group and scope out that crowd."
The allo transplant patients I have met are usually forthcoming with information and are very positive people. The transplant experience seems to be very similar between different blood cancers.
I do not know if you are a sports fan, so you may not have noticed this news. A sideline reporter well known for his "loud" clothes was diagnosed with acute myeloid leukemia (AML) in April 2014. He got back to work this week after doing an allo. Sounds like he would have been back even sooner, but he came down with C. diff, which set him back according to another article I read.
Are you doing most of your transplant as an outpatient? I have had some email exchanges with patients that did mini's as an outpatient or spent minimal time in the hospital.
Mark
This is a great idea:
"... so I am making conversations in the waiting room, trying to find them myself. Once my counts go up a little more, I may go to the transplant support group and scope out that crowd."
The allo transplant patients I have met are usually forthcoming with information and are very positive people. The transplant experience seems to be very similar between different blood cancers.
I do not know if you are a sports fan, so you may not have noticed this news. A sideline reporter well known for his "loud" clothes was diagnosed with acute myeloid leukemia (AML) in April 2014. He got back to work this week after doing an allo. Sounds like he would have been back even sooner, but he came down with C. diff, which set him back according to another article I read.
“Everything came out shining and they said they were proud of me,” Sager said. “I said thanks and told them they obviously knew what they were doing. Physically I am good to go and I feel good. It’s like checking a new car before they send it out on the road. They wanted to make sure everything has been tested.”
Sager said he has no travel or work restrictions but as a precaution he has to wear a mask on airplanes and in airports. He also has to wash his hands and stay away from anyone with a cold. He will have a full NBA and March Madness schedule including a hectic four games on the first weekend for CBS/Turner. His doctors will continual to do blood work to see how his body reacts to stress and travel. There are also more CT scans to come as well as additional biopsies."
From: "Healthy again, TNT's Craig Sager ready to get back to the sidelines," SI.com, Mar 4, 2015 (link to article)
Are you doing most of your transplant as an outpatient? I have had some email exchanges with patients that did mini's as an outpatient or spent minimal time in the hospital.
Mark
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Mark11
Re: Experiences of those who have had allogeneic transplants
Hi Mark,
I am smiling after reading your response. I went to Duke for my undergraduate degree, so March Madness is my favorite "holiday". I know who Craig Sager is, but was unaware of his AML. I will look forward to researching and following his story.
My plan is to do the mini allo outpatient, as was the case with with ASCT, but I ended up in the hospital for 16 days with that due to nausea and then C. diff.
Cindy
I am smiling after reading your response. I went to Duke for my undergraduate degree, so March Madness is my favorite "holiday". I know who Craig Sager is, but was unaware of his AML. I will look forward to researching and following his story.
My plan is to do the mini allo outpatient, as was the case with with ASCT, but I ended up in the hospital for 16 days with that due to nausea and then C. diff.
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
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