Hello Pam,
Regarding my October 23 post, I had an autologous stem cell transplant with melphalan, etc., in the same hospital as the dialysis unit. Basically I was treated in a specialist ward for the stem cell transplant and usually you are then kept in "quarantine" until the process is finished. However, in my case they simply wheeled me down the corridor to the dialysis unit three times a week for the treatment. I wore a mask over my face to try and prevent infection. I did get a serious chest infection during the treatment, but I cannot say whether it was due to the movement between wards or not.
As I mentioned before, I am currently going through VCD chemo, now finishing my fourth cycle. The main issues are recurrent respiratory infections, but the kidney seems to be coping fine.
Hope you can find a solution to your quest for a transplant! I found this recent article helpful.
All the best!
P.S. - I am being treated in London, UK, if that is of any help.
Forums
Re: Kidney transplant for multiple myeloma patient
Pam, I read your postings and I can tell you it is possible to receive a kidney transplant, if you are in remission from multiple myeloma. I know this is possible, because my wife, who has had multiple myeloma for the past 8 years and was on dialysis and at end sage kidney failure, received a kidney transplant 5 years ago. The transplant was done while she was in remission and during the course of these five years, the myeloma has in fact returned and she has been able to accept chemo treatment, specifically Velcade and then eventually Kyprolis.
Recently her myeloma returned again and she is currently recovering from a third stem cell transplant. Since she is currently in recovery, I cannot exactly discuss the kidney implications post stem cell transplant at this time.
There are hospitals who think progressively about this issue.
I do wish you the very best of luck. Keep fighting.
Tony
Recently her myeloma returned again and she is currently recovering from a third stem cell transplant. Since she is currently in recovery, I cannot exactly discuss the kidney implications post stem cell transplant at this time.
There are hospitals who think progressively about this issue.
I do wish you the very best of luck. Keep fighting.
Tony
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Tony
Re: Kidney transplant for multiple myeloma patient
Tony and Pam,
I have multiple myeloma which was discovered when routine blood work showed my kidney failure. I had no symptoms, and was quite shocked. I do peritoneal dialysis and was able to have a stem cell transplant, inpatient. During my 19 days in the hospital, I had to do hemo. They have a dialysis machine that was wiped down and disinfected before they wheeled it into my room. I hated hemo, but had no problems with doing that and having and recovering from the stem cell transplant.
What did the doctors classify as complete remission in order for you to have your kidney transplant? I am 51, and don't want to live the rest of my life on dialysis. I am not on any maintenance chemo, but I don't believe I am in complete remission (CR). I am very good partial response (VGPR). But, otherwise, in good health.
I have multiple myeloma which was discovered when routine blood work showed my kidney failure. I had no symptoms, and was quite shocked. I do peritoneal dialysis and was able to have a stem cell transplant, inpatient. During my 19 days in the hospital, I had to do hemo. They have a dialysis machine that was wiped down and disinfected before they wheeled it into my room. I hated hemo, but had no problems with doing that and having and recovering from the stem cell transplant.
What did the doctors classify as complete remission in order for you to have your kidney transplant? I am 51, and don't want to live the rest of my life on dialysis. I am not on any maintenance chemo, but I don't believe I am in complete remission (CR). I am very good partial response (VGPR). But, otherwise, in good health.
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Sheri
Re: Kidney transplant for multiple myeloma patient
I was diagnosed stage 3 myeloma in kidney failure in 2005. I needed a stem cell transplant, but the Boston hospital refused to give it to me on dialysis. My children researched on the Internet and found a center which had experience doing stem cell transplant on dialysis. I had a tandem transplant and, although we hoped kidney function would return, it never did. I remained on dialysis for 2.5 years and was in complete remission.
As I was an active person who did not want to be on dialysis anymore, I pursued a kidney transplant. The center agreed to do a cadaver transplant but not a live donor. I was put on the list and, miracle of miracles, I received a call six weeks later that I had a match.
The transplant has been awesome. The myeloma returned twice and was successfully treated with no ill effects on my kidney. However, in the fall of this year, I needed a third transplant, and everything looked great until right at the 100 day mark, where I started going into kidney rejection. I guess when my immune system started coming back it recognized the kidney as foreign. I am on strong rejection medication and immunosuppressants, but the kidney has been damaged at this point. I am not sure what will happen from here.
If anyone with myeloma has a kidney transplant and then needs a stem cell transplant, I would ask lots of questions about the possibility of rejection. Either way, I feel so fortunate to have gotten to live a dialysis-free life and, if need be, I will pursue further avenues for another kidney.
As I was an active person who did not want to be on dialysis anymore, I pursued a kidney transplant. The center agreed to do a cadaver transplant but not a live donor. I was put on the list and, miracle of miracles, I received a call six weeks later that I had a match.
The transplant has been awesome. The myeloma returned twice and was successfully treated with no ill effects on my kidney. However, in the fall of this year, I needed a third transplant, and everything looked great until right at the 100 day mark, where I started going into kidney rejection. I guess when my immune system started coming back it recognized the kidney as foreign. I am on strong rejection medication and immunosuppressants, but the kidney has been damaged at this point. I am not sure what will happen from here.
If anyone with myeloma has a kidney transplant and then needs a stem cell transplant, I would ask lots of questions about the possibility of rejection. Either way, I feel so fortunate to have gotten to live a dialysis-free life and, if need be, I will pursue further avenues for another kidney.
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Joyce
Re: Kidney transplant for multiple myeloma patient
l have a question here. People keep talking about kidney failure. Exactly what is meant by that? Does the kidney just plug up and quit filtering, or does it shrivel up like a dried prune, get infected, start damaging the other organs around it? Or all of the above?
If it is strictly a matter of it getting plugged up, how about back flushing it like the filter on a hydraulic system to remove the debris?
Just wondering. NG
If it is strictly a matter of it getting plugged up, how about back flushing it like the filter on a hydraulic system to remove the debris?
Just wondering. NG
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Kidney transplant for multiple myeloma patient
Hi Pam,
By now, I hope that you have had your kidney transplant, and are enjoying life.
Your post caught my eye due to my husband being diagnosed with multiple myeloma, and his kidneys are gone. His life is dialysis three times a week, and Velcade injections twice a week. He is close to remission and his multiple myeloma doctor wants him to have a stem cell transplant. From all that I have read, it is not that great, and very dangerous.
He is also working forty hours a week and has only had insurance since May of this year. He has chosen not to do the transplant, and after reading your post, I agree with him. Wonder why his multiple myeloma doctors would suggest a thing, since he has dialysis.
Our son has offered to donate his kidney, but they tell us that my husband has to be free of multiple myeloma for a year.
I hate to bring up the story of the little girl who has cystic fibrosis, and yet had a double lung transplant. I pray she survives, but there is no cure for cystic fibrosis, and yet she received a transplant. I do not mean to sound harsh, but it is reality. Our grandson is borderline CF.
I wish you happiness and thank you for your post.
By now, I hope that you have had your kidney transplant, and are enjoying life.
Your post caught my eye due to my husband being diagnosed with multiple myeloma, and his kidneys are gone. His life is dialysis three times a week, and Velcade injections twice a week. He is close to remission and his multiple myeloma doctor wants him to have a stem cell transplant. From all that I have read, it is not that great, and very dangerous.
He is also working forty hours a week and has only had insurance since May of this year. He has chosen not to do the transplant, and after reading your post, I agree with him. Wonder why his multiple myeloma doctors would suggest a thing, since he has dialysis.
Our son has offered to donate his kidney, but they tell us that my husband has to be free of multiple myeloma for a year.
I hate to bring up the story of the little girl who has cystic fibrosis, and yet had a double lung transplant. I pray she survives, but there is no cure for cystic fibrosis, and yet she received a transplant. I do not mean to sound harsh, but it is reality. Our grandson is borderline CF.
I wish you happiness and thank you for your post.
Re: Kidney transplant for multiple myeloma patient
Nipon Ginko wrote:
My husband's kidney went into renal failure, and only then did we find out that he has multiple myeloma. The kidneys get 'plugged' and quit functioning. The MRI showed that the kidneys were not damaged and we hoped that, with the Velcade injections for the multiple myeloma, they would unplug.
It has been six months and he is now told they will never work again. I do not understand why something cannot be done to get them going again. He is close to remission and we still pray, but I just do not understand it.
People keep talking about kidney failure. Exactly what is meant by that?
My husband's kidney went into renal failure, and only then did we find out that he has multiple myeloma. The kidneys get 'plugged' and quit functioning. The MRI showed that the kidneys were not damaged and we hoped that, with the Velcade injections for the multiple myeloma, they would unplug.
It has been six months and he is now told they will never work again. I do not understand why something cannot be done to get them going again. He is close to remission and we still pray, but I just do not understand it.
Re: Kidney transplant for multiple myeloma patient
I am currently going to the Mayo Clinic in Rochester for a possible kidney transplant. I know it is considered a fairly new process still. I am wondering how everyone is doing with their new kidney. Has the myeloma returned? If so, how is treatment going?
I also have kappa light chain disease. I am 35 years old, on peritoneal dialysis, have plateaued with my multiple myeloma, and was diagnosed two years ago. I had an auto stem cell transplant in June of 2012 and receive Velcade as a maintenance treatment now.
I hope you all are doing well and look forward to hearing from you. You ask are in my thought.
I also have kappa light chain disease. I am 35 years old, on peritoneal dialysis, have plateaued with my multiple myeloma, and was diagnosed two years ago. I had an auto stem cell transplant in June of 2012 and receive Velcade as a maintenance treatment now.
I hope you all are doing well and look forward to hearing from you. You ask are in my thought.
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jjhmorgan
Re: Kidney transplant for multiple myeloma patient
Thank you for all of your stories. I was under the impression that you could not get a transplant unless you were in remission for 2 years and then still there were hurdles, so it is interesting that some have had the opportunity to get a transplant.
My husband started with a creatinine level of 6.6, he is 3.7 after auto transplant in December. The nephrologist keeps telling him eventually he will end up on dialysis, but husband says, if I was walking around at 6.6. surely I can walk around at 3.7 without dialysis. We will see ...
What were your levels before starting dialysis?
My husband started with a creatinine level of 6.6, he is 3.7 after auto transplant in December. The nephrologist keeps telling him eventually he will end up on dialysis, but husband says, if I was walking around at 6.6. surely I can walk around at 3.7 without dialysis. We will see ...
What were your levels before starting dialysis?
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Kidney transplant for multiple myeloma patient
My creatinine was at 5 at diagnosis. It hovers around 3.2 to 4 before and during dialysis. I was stable with no myeloma for a year and got into the Mayo Clinic through a referral from my oncologist. I was not eligible for a kidney transplant through my nephrologist. So my oncologist sent me to the Mayo Clinic. They are more aggressive there.
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jjhmorgan
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