I was treated for multiple myeloma in 2008 and received a complete remission. I was told that after 2 years remission I could look into receiving a kidney transplant. My daughter (age 26) volunteered to be a donor and we have spent much of this year being tested. We are compatible and there is nothing wrong with us , except I have multiple myeloma and kidney failure.
Anyway, we actually had a date for surgery and were all set to go at the end of this month. We had been meeting with different members of the transplant team. My husband and I had a meeting a few weeks age where a nice doctor took our intake, then a hostile doctor came in and told us that he didn't like our donor (a young lady who hasn't had her family yet) and he furthermore went to my cancer doctor and asked if I was cured from multiple myeloma. She of course said nobody is cured from multiple myeloma. It is not a curable disease at this point.
Anyway, he would not sign off on this transplant because of the donor and would consider signing off on a cadaver transplant (6 year wait with my blood type). The doctor left in the room said "Well, that's his opinion" when this doctor went . The other doctor was also trying to push the double kidney allo stem cell transplant that has been done on exactly 12 people. This is a highly dangerous procedure. In the sample of 7 I read, 2 die and 4 got their multiple myeloma back. Only one was left with a complete 'cure"
I cannot have a regular stem cell transplant because I am on dialysis. I have received a complete remission from just treatments and it has been 3 1/2 years now. If I wait 6 years, I may have too high blood pressure from dialysis or a host of other problems. Dialysis isn't great for your survival health either. I think I am in the best health now and now would be a good time to try this. Both my brother and sister have come forward to be donors, so we can address the donor issue. But I had multiple myeloma when we started the process and all the doctors knew this. My brother is not a match for the double transplant and I am betting my sister isn't either (it must be a 12 to 12 antigen match). My sister is technically obese and smokes so I don't even know if she could be a donor.
I don't want the double transplant unless we are in some desperate place where we have no choice.
I have gotten to know one person who has had a regular transplant and it's been 4 1/2 years and she is fine. Her doctors think that the anti rejection medicine might keep the multiple myeloma away.
Does anyone have experience with this. What is your opinion?
Pam
Forums
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Pamela Lussier - Name: Pamela Lussier
- Who do you know with myeloma?: Pamela Lussier
- When were you/they diagnosed?: 2007
- Age at diagnosis: 50
Re: Kidney transplant for multiple myeloma patient
P.S. I will be meeting with the transplant team to discuss all this next week. My multiple myeloma doctor has not been invited, so I will be defending my multiple myeloma on my own.
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Pamela Lussier - Name: Pamela Lussier
- Who do you know with myeloma?: Pamela Lussier
- When were you/they diagnosed?: 2007
- Age at diagnosis: 50
Re: Kidney transplant for multiple myeloma patient
Hi Pamela,
First of all, allogeneic (donor) stem cell transplantation has few proponents in 2011. Recent trials have failed to show any benefit and some have shown that allo transplant delivers worse outcomes as compared to autologous. With that in mind, the great majority of myeloma experts would not recommend allogeneic transplant for any patient. I think you should discard the allo option.
Autologous stem cell cell transplant has been successfully performed in patients with renal failure and is still an option for you. Only very experienced centers are comfortable with autologous stem cell transplant in patients with renal failure and you should seek them out if it appears that an auto is your best option. There are significantly higher morbidity and mortality rates for auto transplantation in patients with renal failure and for that reason only experienced centers should attempt it.
As you mentioned we cannot cure myeloma in 2011 and therefore a kidney transplant would be at risk when the myeloma returns with potential for myeloma-associated kidney complications for the transplanted kidney.
Your nephrologist, renal transplant surgeon, and oncologist will weigh all of the potential risks and benefits to arrive at the most optimal course.
Although I understand your desire to try and return to a more normal life (without dialysis or myeloma), if you are in remission right now I am not sure I would change anything for the moment. The myeloma will eventually return but it can be treated at that juncture and new drugs are coming down the pike. A kidney transplant could give you a better quality of life, but it is often very challenging / impossible to convince a surgeon and transplant nephrologist to perform one in a myeloma patient, for obvious reasons.
First of all, allogeneic (donor) stem cell transplantation has few proponents in 2011. Recent trials have failed to show any benefit and some have shown that allo transplant delivers worse outcomes as compared to autologous. With that in mind, the great majority of myeloma experts would not recommend allogeneic transplant for any patient. I think you should discard the allo option.
Autologous stem cell cell transplant has been successfully performed in patients with renal failure and is still an option for you. Only very experienced centers are comfortable with autologous stem cell transplant in patients with renal failure and you should seek them out if it appears that an auto is your best option. There are significantly higher morbidity and mortality rates for auto transplantation in patients with renal failure and for that reason only experienced centers should attempt it.
As you mentioned we cannot cure myeloma in 2011 and therefore a kidney transplant would be at risk when the myeloma returns with potential for myeloma-associated kidney complications for the transplanted kidney.
Your nephrologist, renal transplant surgeon, and oncologist will weigh all of the potential risks and benefits to arrive at the most optimal course.
Although I understand your desire to try and return to a more normal life (without dialysis or myeloma), if you are in remission right now I am not sure I would change anything for the moment. The myeloma will eventually return but it can be treated at that juncture and new drugs are coming down the pike. A kidney transplant could give you a better quality of life, but it is often very challenging / impossible to convince a surgeon and transplant nephrologist to perform one in a myeloma patient, for obvious reasons.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Kidney transplant for multiple myeloma patient
Thank you, Dr. Libby, for your reply. It is a very complicated issue for sure. I feel that this doctor was more against my daughter being the transplant donor than me actually receiving a new kidney. He even said he might agree to a cadaver kidney transplant. As I said before, my blood type has a 6 year waiting list and certainly couldn't produce as great a match as a sibling. I also will not be getting in better health in the next 6 years – dialysis has it's own health issues.
Thank you for stating that the allo transplant is not a good idea. This isn't the first time someone has suggested this and I looked over the results and I am not impressed. It isn't worth the danger.
I don't expect you to agree with the idea of my having a kidney transplant, Yet forgive me but I still have to go to this meeting pursuing that direction.
I think it is interesting that in 1975, before multiple myeloma was treatable, some renal transplants were done and the patients, when they did eventually die, died of things other than multiple myeloma. I was only able to find one person in the present time that was able to be OK'd for a kidney transplant and, as I stated before, she is fine 4 1/2 years later and her doctors think that she might be protected from the multiple myeloma returning from the antirejection drugs.
I am an excellent patient, totally compliant, and I go above and beyond finding ways to keep myself healthy with my 2 'chronic" diseases. I still think this is worth trying. My husband also spends 30 hours a week doing my dialysis (NX Stage Hemodialysis). It seems an enormous burden to me, not that he ever complains. It is much better for me but takes so much time. Clinic dialysis is like being half dead, I did that for 18 months. I don't ever want to go back to that. These are some of the factors that make me want to try this. I don't have any fantasy that I will return to normal health. I know I will have to work harder than ever to remain in remission
Best Regards,
Pamela Lussier
Thank you for stating that the allo transplant is not a good idea. This isn't the first time someone has suggested this and I looked over the results and I am not impressed. It isn't worth the danger.
I don't expect you to agree with the idea of my having a kidney transplant, Yet forgive me but I still have to go to this meeting pursuing that direction.
I think it is interesting that in 1975, before multiple myeloma was treatable, some renal transplants were done and the patients, when they did eventually die, died of things other than multiple myeloma. I was only able to find one person in the present time that was able to be OK'd for a kidney transplant and, as I stated before, she is fine 4 1/2 years later and her doctors think that she might be protected from the multiple myeloma returning from the antirejection drugs.
I am an excellent patient, totally compliant, and I go above and beyond finding ways to keep myself healthy with my 2 'chronic" diseases. I still think this is worth trying. My husband also spends 30 hours a week doing my dialysis (NX Stage Hemodialysis). It seems an enormous burden to me, not that he ever complains. It is much better for me but takes so much time. Clinic dialysis is like being half dead, I did that for 18 months. I don't ever want to go back to that. These are some of the factors that make me want to try this. I don't have any fantasy that I will return to normal health. I know I will have to work harder than ever to remain in remission
Best Regards,
Pamela Lussier
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Pamela Lussier - Name: Pamela Lussier
- Who do you know with myeloma?: Pamela Lussier
- When were you/they diagnosed?: 2007
- Age at diagnosis: 50
Re: Kidney transplant for multiple myeloma patient
Hang in there Pam!
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Kidney transplant for multiple myeloma patient
Hello,
I have been through a similar experience, but with positive results. I was diagnosed with multiple myeloma in 2008 due to being unwell with kidney failure. I was placed on dialysis and treated with cyclophosphamide, thalidomide, and dexamethasone (CTD). Once I reached a stable position with the myeloma, I was given an autologous stem cell transplant. This was successful (March 2009).
As I was relatively young to be diagnosed (37) and wished to continue to work, etc., I pursued the opportunity of a kidney transplant. My consultant was very supportive and my brother donated his kidney. All went ahead and in April 2010 I received a new kidney.
I have just come out of remission and am being treated with Velcade, cyclophosphamide, and dexamethasone. These should all have little impact on the kidney.
If this helps, or I can help further in any way, please let me know!
All the best.
I have been through a similar experience, but with positive results. I was diagnosed with multiple myeloma in 2008 due to being unwell with kidney failure. I was placed on dialysis and treated with cyclophosphamide, thalidomide, and dexamethasone (CTD). Once I reached a stable position with the myeloma, I was given an autologous stem cell transplant. This was successful (March 2009).
As I was relatively young to be diagnosed (37) and wished to continue to work, etc., I pursued the opportunity of a kidney transplant. My consultant was very supportive and my brother donated his kidney. All went ahead and in April 2010 I received a new kidney.
I have just come out of remission and am being treated with Velcade, cyclophosphamide, and dexamethasone. These should all have little impact on the kidney.
If this helps, or I can help further in any way, please let me know!
All the best.
Re: Kidney transplant for multiple myeloma patient
Hi ,
That is helpful info. Everyone's biggest fear is that I will go out of remission and the multiple myeloma will spoil the new kidney or the treatment will kill the new kidney. Where did you do this transplant? I know different hospitals have different rules. My myeloma has been in perfect remission, doesn't show up in my bloodwork or in biopsies, so I don't need a better remission with my own stems cells.
I have spoken to others who have had a kidney transplant and are fine, but I have never heard of someone on dialysis being given an auto stem cell transplant.. How did they do that?
I hope you are in good health, thank you for the posting.
Pam
That is helpful info. Everyone's biggest fear is that I will go out of remission and the multiple myeloma will spoil the new kidney or the treatment will kill the new kidney. Where did you do this transplant? I know different hospitals have different rules. My myeloma has been in perfect remission, doesn't show up in my bloodwork or in biopsies, so I don't need a better remission with my own stems cells.
I have spoken to others who have had a kidney transplant and are fine, but I have never heard of someone on dialysis being given an auto stem cell transplant.. How did they do that?
I hope you are in good health, thank you for the posting.
Pam
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Pamela Lussier - Name: Pamela Lussier
- Who do you know with myeloma?: Pamela Lussier
- When were you/they diagnosed?: 2007
- Age at diagnosis: 50
Re: Kidney transplant for multiple myeloma patient
Hi Doctor Libby,
I meant to tell you how my meeting went with the doctors back in June. After I presented my case to them, they did agree that if I am in remission for 3 years without conventional maintenance meds, I can have a live donor transplant. It is OK with them if I use curcumin for maintenance. I am on 6 grams of curcumin per day maintenance.
I have had my blood tested recently and there is no evidence of active disease. In a few months I will have a bone marrow biopsy . Different hospitals have different rules (seriously, I was at a dialysis clinic in Maine and looked up to see these words on a poster with phone numbers of all the transplant clinics in New England), so my husband and I may pursue a different hospital. He wants to be considered for a transplant donor, after all he is the one doing all the dialysis stuff. This affects his life too.
Best Regards,
Pam
I meant to tell you how my meeting went with the doctors back in June. After I presented my case to them, they did agree that if I am in remission for 3 years without conventional maintenance meds, I can have a live donor transplant. It is OK with them if I use curcumin for maintenance. I am on 6 grams of curcumin per day maintenance.
I have had my blood tested recently and there is no evidence of active disease. In a few months I will have a bone marrow biopsy . Different hospitals have different rules (seriously, I was at a dialysis clinic in Maine and looked up to see these words on a poster with phone numbers of all the transplant clinics in New England), so my husband and I may pursue a different hospital. He wants to be considered for a transplant donor, after all he is the one doing all the dialysis stuff. This affects his life too.
Best Regards,
Pam
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Pamela Lussier - Name: Pamela Lussier
- Who do you know with myeloma?: Pamela Lussier
- When were you/they diagnosed?: 2007
- Age at diagnosis: 50
Re: Kidney transplant for multiple myeloma patient
Pam & Sleath1,
I am in the same boat with the kidney transplant. 48 years old and diagnosed two years ago. I have been through the cycles of chemo and one stem cell transplant. Complete remission. Running just a small trace of light chains currently the last 6 months and all other test biopsy and Pet scans are normal.
Is there any research or studies out there on kidney transplants? There has to be some documentation somewhere, doesn't there? Just declined for my transplant last week from one med center. Looking for some direction. I have a donor match which is very close and is my mother.
Does a person pursue the transplant with a vengeance to have the immunosuppressants blow up the myeloma, or, as some have noted, is it possible the immunosuppressants will have no effect or possibly help fight the cancer.
Both my oncologist and nephrologist feel the kidney transplant is a risk but worth it at my age,
I am in the same boat with the kidney transplant. 48 years old and diagnosed two years ago. I have been through the cycles of chemo and one stem cell transplant. Complete remission. Running just a small trace of light chains currently the last 6 months and all other test biopsy and Pet scans are normal.
Is there any research or studies out there on kidney transplants? There has to be some documentation somewhere, doesn't there? Just declined for my transplant last week from one med center. Looking for some direction. I have a donor match which is very close and is my mother.
Does a person pursue the transplant with a vengeance to have the immunosuppressants blow up the myeloma, or, as some have noted, is it possible the immunosuppressants will have no effect or possibly help fight the cancer.
Both my oncologist and nephrologist feel the kidney transplant is a risk but worth it at my age,
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M-17
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