Hi Everyone,
My Husband was diagnoised with multiple myeloma in August of 2011.
He went on Revlimid 25MG then 15MG and did well until he got major side effect of swelling of feet, hands and legs. The Dr took him off since he had to be hospitalized to get rid of the swelling.
After that since he was on the Revlimid too long causing the swelling which his cardiologist told him this would compromise his kidneys.
His oncologist/hemotologist decided to put him on Velcade sub Q.
He had 3 shots of the Velcade over a 2 week period and experienced severe side effects of fever and diarrhea. The diarrhea meds did not work and he was rushed to the Hospital with
Kidney Failure.
Now he is on dialysis for his Kidneys and his multiple myeloma #'s are very high. We almost lost him 3 times due to infections and pnumonia.
He currently is taking Revlimid 5MG after dialysis 3 times a week.
My question is has anyone else experienced this? I feel he has not received the Best of Care with his multiple myeloma.
I am looking for some help as to what would be the best care for him.
Thankyou very much. Really appreciate all the help we can get.
Sincerely,
J & G Kondor
Forums
7 posts
• Page 1 of 1
Re: Major Side Effect
I don't know where you live, but I would get an second opinion from a research center. A place where many multiple myeloma doctors see many multiple myeloma patients everyday. With your husband's Kidney involvement, even more so. Your doctor is right, that the Rev. is hard on the kidneys, but the disease is hard on the kidney's also. With the new drugs out there, a research center would have more information to find a drug combo that would get the multiple myeloma back in control and protect the kidneys. I would really want to look into trying one of the new drugs and take the pressure off the kidneys.
I have only been to Mayo, so I can't help with others that might be closer to where you live. But if you post your area, others maybe able to help.
Your are right to keep searching for the best, it really does make a difference.
I know you are probably tired and overwhelmed at times, but you caregivers are our angels.
Prayers for all of you.
jjc
I have only been to Mayo, so I can't help with others that might be closer to where you live. But if you post your area, others maybe able to help.
Your are right to keep searching for the best, it really does make a difference.
I know you are probably tired and overwhelmed at times, but you caregivers are our angels.
Prayers for all of you.
jjc
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jjc
Re: Major Side Effect
jjc wrote:
> I don't know where you live, but I would get an second opinion from a
> research center. A place where many multiple myeloma doctors see many
> multiple myeloma patients everyday. With your husband's Kidney
> involvement, even more so. Your doctor is right, that the Rev. is hard on
> the kidneys, but the disease is hard on the kidney's also. With the new
> drugs out there, a research center would have more information to find a
> drug combo that would get the multiple myeloma back in control and protect
> the kidneys. I would really want to look into trying one of the new drugs
> and take the pressure off the kidneys.
> I have only been to Mayo, so I can't help with others that might be closer
> to where you live. But if you post your area, others maybe able to help.
> Your are right to keep searching for the best, it really does make a
> difference.
> I know you are probably tired and overwhelmed at times, but you caregivers
> are our angels.
> Prayers for all of you.
> jjc
Thankyou jjc for your input regarding my husband. We are located in Largo, Florida and have been seeing Oncologists that service Moffitt Cancer Center. Moffitt is suppose to be one of the Best for multiple myeloma patients. Or maybe I am wrong. If so how is Mayo doing for you.?My husband wants to be off dialysis and I read where there are other options to do so.
One option was called a High Cut off Hemodialysis. It is a type of Dialysis that removes free light chains from the blood and has also been shown to restore kidney function in patients with acute kidney injury. His kidney failure was due to dehydration from diarehea from the Velcade. The other option was 5-6- plasma exchange over 2 wks reduce IGG 70-85%.
> I don't know where you live, but I would get an second opinion from a
> research center. A place where many multiple myeloma doctors see many
> multiple myeloma patients everyday. With your husband's Kidney
> involvement, even more so. Your doctor is right, that the Rev. is hard on
> the kidneys, but the disease is hard on the kidney's also. With the new
> drugs out there, a research center would have more information to find a
> drug combo that would get the multiple myeloma back in control and protect
> the kidneys. I would really want to look into trying one of the new drugs
> and take the pressure off the kidneys.
> I have only been to Mayo, so I can't help with others that might be closer
> to where you live. But if you post your area, others maybe able to help.
> Your are right to keep searching for the best, it really does make a
> difference.
> I know you are probably tired and overwhelmed at times, but you caregivers
> are our angels.
> Prayers for all of you.
> jjc
Thankyou jjc for your input regarding my husband. We are located in Largo, Florida and have been seeing Oncologists that service Moffitt Cancer Center. Moffitt is suppose to be one of the Best for multiple myeloma patients. Or maybe I am wrong. If so how is Mayo doing for you.?My husband wants to be off dialysis and I read where there are other options to do so.
One option was called a High Cut off Hemodialysis. It is a type of Dialysis that removes free light chains from the blood and has also been shown to restore kidney function in patients with acute kidney injury. His kidney failure was due to dehydration from diarehea from the Velcade. The other option was 5-6- plasma exchange over 2 wks reduce IGG 70-85%.
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gkondor
Re: Major Side Effect
Hi there. My mother was diagnosed with stage 3 multiple myeloma in early September (2012). She was put on Revlimid/Dexamethasone almost immediately. She has been in and out of the hospital since September 4 times (this last time for 1.5 months) due to multiple infections (bacterial pneumonia, etc.). She has been taken off Revlimid since November and now we're waiting for her to be taking in at Roswell Park Cancer Institute here in Buffalo, NY. She too, is on dialysis (started 10/23/12). I too am curious about the high cut-off dialysis, but haven't been able to find out any info. I will be posting info on how her treatment goes at Roswell. Take care...
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veganmartin - Name: Kristen
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 67
Re: Major Side Effect
Dear jkondor,
I am sorry to hear that things are not going well. A couple of thoughts:
1) High cut off dialysis is a promising way of decreasing the amount of free light chains in the short term. Thus, if the kidney failure is due to myeloma kidney (cast nephropathy -- light chains depositing in the tubules of the kidneys leading to obstruction and inflammation), high cut off dialysis could be considered. However, I believe it would need to be done as part of a compassionate use protocol as it is not yet FDA approved. It would also be more useful if the kidney failure developed recently. If the kidney failure was due to dehydration and has nothing to do with light chains, high cut off dialysis will not help.
2) The role of plasma exchange for myeloma kidney is controversial, largely becuase it is inefficient at removing free light chains. At our institution, we do it on a case-by-case basis. If someone has new kidney failure and we have concerns that chemotherapy is not going to knock down the light chain levels quickly enough, we will do it. Again, this will only help if the kidney failure is due to myeloma kidney (cast nephropathy) -- if the kidney failure is not due to light chains, plasma exchange would not be of benefit under those circumstances.
3) The degree of swelling from Revlimid you describe would not be typical. Also, it is not clear from your post, but it sounds as though the swelling did not occur initially on the Revlimid - only later in the course of the disease - is that correct? If so, it might be worth considering whether or not amyloidosis is contributing to your husband's current predicament.
Best of luck and hang in there!
Pete V.
I am sorry to hear that things are not going well. A couple of thoughts:
1) High cut off dialysis is a promising way of decreasing the amount of free light chains in the short term. Thus, if the kidney failure is due to myeloma kidney (cast nephropathy -- light chains depositing in the tubules of the kidneys leading to obstruction and inflammation), high cut off dialysis could be considered. However, I believe it would need to be done as part of a compassionate use protocol as it is not yet FDA approved. It would also be more useful if the kidney failure developed recently. If the kidney failure was due to dehydration and has nothing to do with light chains, high cut off dialysis will not help.
2) The role of plasma exchange for myeloma kidney is controversial, largely becuase it is inefficient at removing free light chains. At our institution, we do it on a case-by-case basis. If someone has new kidney failure and we have concerns that chemotherapy is not going to knock down the light chain levels quickly enough, we will do it. Again, this will only help if the kidney failure is due to myeloma kidney (cast nephropathy) -- if the kidney failure is not due to light chains, plasma exchange would not be of benefit under those circumstances.
3) The degree of swelling from Revlimid you describe would not be typical. Also, it is not clear from your post, but it sounds as though the swelling did not occur initially on the Revlimid - only later in the course of the disease - is that correct? If so, it might be worth considering whether or not amyloidosis is contributing to your husband's current predicament.
Best of luck and hang in there!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Major Side Effect
@ Dr. Pete V. Revlimid can cause swelling of the feet. I was on 15 mg pre transplant and my feet swelled so large that I had to wear diabetic crocs just to have something on my feet. My feet didn't even look like feet. After ASCT I am on 10 mg with minimum swelling. The literature from Celgene shows that about 10% of people on Revlimid will develope swelling of the extremities.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Major Side Effect
Dear George,
Absoultely, Revlimid can cause swelling. We see it in many of our patients. In the majority of cases, it is not severe. When it is, it is usually because steroids are part of the regimen (e.g. weekly dexamethasone). Steroids are notorious for causing fluid retention. The take home point of my comment is that we always need to think about other causes of swelling beyond drug effect when it is severe and nephrotic syndrome from amyloidosis is one thing that we as physicians always need to think about.
Thanks!
Pete V.
Absoultely, Revlimid can cause swelling. We see it in many of our patients. In the majority of cases, it is not severe. When it is, it is usually because steroids are part of the regimen (e.g. weekly dexamethasone). Steroids are notorious for causing fluid retention. The take home point of my comment is that we always need to think about other causes of swelling beyond drug effect when it is severe and nephrotic syndrome from amyloidosis is one thing that we as physicians always need to think about.
Thanks!
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
7 posts
• Page 1 of 1
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