Hi there,
My husband was diagnosed with multiple myeloma on April 19, 2015. He had gone to his doctor with stomach pain and had blood drawn. The next day his doctor called and told him to go immediately to the ER, because he was in renal failure.
After a kidney biopsy showed light chains, a bone marrow biopsy confirmed multiple myeloma. He was admitted with a GFR of 16.9, and it has declined to 13.9. His creatinine was 3.6 and is now up to 4.2. He just completed his fourth treatment of CyBorD (cyclophosphamide, Velcade [bortezomib], and dexamethasone).
We are getting treatment at the Mayo Clinic in Scottsdale, and hoping to see a kidney specialist this week.
Just curious how long it takes for kidney function to come back after treatment?
We are discouraged that it has not only not improved, but has gotten worse. We are still hopeful for kidney failure reversal!
Thanks,
Stacey
Forums
Re: How long does it take for kidneys to recover?
Hi StaceyD
Your husband's story is quite similar to my husband's situation. It is a shocking turn of events. Hang in there – you have chosen a strong institution to help your husband. .
My husband did initial treatment at Mayo in Rochester. His peak creatinine was 4.2; treatment included plasmapheresis, a kidney biopsy during the second cycle, followed by the same chemotherapy regimen for 4 cycles. He then had an auto stem cell transplant.
His creatinine levels fluctuate around 2.2 these days. Hope that helps. We are pulling for you 110%.
Editing to add: Renal dosing for medication is very important, including any over the counter items in use.
Your husband's story is quite similar to my husband's situation. It is a shocking turn of events. Hang in there – you have chosen a strong institution to help your husband. .
My husband did initial treatment at Mayo in Rochester. His peak creatinine was 4.2; treatment included plasmapheresis, a kidney biopsy during the second cycle, followed by the same chemotherapy regimen for 4 cycles. He then had an auto stem cell transplant.
His creatinine levels fluctuate around 2.2 these days. Hope that helps. We are pulling for you 110%.
Editing to add: Renal dosing for medication is very important, including any over the counter items in use.
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philatour - Who do you know with myeloma?: spouse
Re: How long does it take for kidneys to recover?
My opinion is that the kidneys are stronger than the doctors give them credit for. At the worst, I had creatinine over 8. My nephrologist wanted me to start dialysis, but I opted not to, given I wasn't exhibiting any signs of kidney failure. This was about 3 years ago.
Since then, we've got the myeloma stabilized and my creatinine is now in the low to mid 3s, and I have never done dialysis. The key is to follow a renal diet and of course have the myeloma under control. The point is, the kidneys can bounce back. They might never be 100%, but they can recover.
Since then, we've got the myeloma stabilized and my creatinine is now in the low to mid 3s, and I have never done dialysis. The key is to follow a renal diet and of course have the myeloma under control. The point is, the kidneys can bounce back. They might never be 100%, but they can recover.
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Matt G
Re: How long does it take for kidneys to recover?
Thanks for the responses! I lost my first husband to complications from diabetes, so I have been freaking out over the kidney function.
When diagnosed, Larry's kappa free light chain was 95 and after three treatments was down to 59, so the chemo seems to be doing its job. I am just impatient with the kidneys. Your posts gave me some peace of mind. I will try to be more patient and not get discouraged with every blood test.
Larry is keeping on a very strict diet and drinking lots of water ... all he really has control of at this point. We feel very fortunate to be able to be in Scottsdale for treatment; we have much faith in our doctor.
Best of luck to the both of you.
When diagnosed, Larry's kappa free light chain was 95 and after three treatments was down to 59, so the chemo seems to be doing its job. I am just impatient with the kidneys. Your posts gave me some peace of mind. I will try to be more patient and not get discouraged with every blood test.
Larry is keeping on a very strict diet and drinking lots of water ... all he really has control of at this point. We feel very fortunate to be able to be in Scottsdale for treatment; we have much faith in our doctor.
Best of luck to the both of you.
Re: How long does it take for kidneys to recover?
Hi Stacey!
Your husband's situation is similar to my husband's. He was diagnosed with rib fractures and acute renal failure on December 17, 2014 due to multiple myeloma. On admission from our ER visit, his creatinine was 5.7, GFR at 11.0, and calcium was 12.7. He started chemo the next day, after a bone marrow aspirate / biopsy confirming the myeloma, and was on a modified dose of Velcade-Cytoxan-dexamethasone because of the failing kidneys. Fluids were pushed both by IV and oral and he gained more than 20 lbs (9 kg) during his 10-day hospital stay.
He is now completing his 6th cycle of the same chemo regimen, with the doses adjusted to his recovering kidneys, and we are due to begin the process for stem cell transplant within the next month at Dana-Farber. It took at least 2 full cycles (not doses) of chemo for his kidney function to return to normal, and it has remained that way since the end of January. This was better than we had hoped for!
My advice is to follow the instructions from the doctor(s) and be patient. You are asking your kidneys to do a lot while they aren't at peak performance, and it's a slow process to heal. I'm sure the doctors are watching his lab results closely and will advise on the next best course.
My father passed away from multiple myeloma 20 years ago and, since then, there have been great strides in treating myeloma, with new regimens and more options for treatment that weren't there for him. But the patient's role is still the same ... you need to have patience as you go through treatment. Each person is different and desires the best possible outcome; don't be discouraged. Just move forward and make adjustments as needed. You will get there!
Your husband's situation is similar to my husband's. He was diagnosed with rib fractures and acute renal failure on December 17, 2014 due to multiple myeloma. On admission from our ER visit, his creatinine was 5.7, GFR at 11.0, and calcium was 12.7. He started chemo the next day, after a bone marrow aspirate / biopsy confirming the myeloma, and was on a modified dose of Velcade-Cytoxan-dexamethasone because of the failing kidneys. Fluids were pushed both by IV and oral and he gained more than 20 lbs (9 kg) during his 10-day hospital stay.
He is now completing his 6th cycle of the same chemo regimen, with the doses adjusted to his recovering kidneys, and we are due to begin the process for stem cell transplant within the next month at Dana-Farber. It took at least 2 full cycles (not doses) of chemo for his kidney function to return to normal, and it has remained that way since the end of January. This was better than we had hoped for!
My advice is to follow the instructions from the doctor(s) and be patient. You are asking your kidneys to do a lot while they aren't at peak performance, and it's a slow process to heal. I'm sure the doctors are watching his lab results closely and will advise on the next best course.
My father passed away from multiple myeloma 20 years ago and, since then, there have been great strides in treating myeloma, with new regimens and more options for treatment that weren't there for him. But the patient's role is still the same ... you need to have patience as you go through treatment. Each person is different and desires the best possible outcome; don't be discouraged. Just move forward and make adjustments as needed. You will get there!
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ByYourSide - Name: Susan
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 65
Re: How long does it take for kidneys to recover?
I was diagnosed with multiple myeloma in July, 2011. My story sounds much like your husband's, in that I had stomach pain, no appetite, and blood tests revealed I was going into renal failure. When my creatinine went to 6.1, I started hemodialysis. I was in total shock because my feet just got totally kicked out from under me.
I elected to go to UAMS in Little Rock and after a weeks testing I met with a myeloma specialist who said he could treat me there and get me off of dialysis. So in September of 2011 I entered the hospital there and had my last dialysis treatment. Afterwards, the nephrologist said he was taking me off of dialysis to see how my kidneys would perform because the longer you're on, the more your kidneys become dependent on it. He said it's crucial to get off within the first 6 months.
So I got off dialysis and completed the chemo regimen, then had 2 stem cell transplants at UAMS over a 9 month period. I've been in complete remission for 3 years and my normal creatinine ranges from 1.4 - 1.6 every month. My nephrologist is very pleased with my outcome, and I thank my wonderful doctors both here at home and at UAMS for helping me achieve remission and get better kidney function. I do not take any maintenance drugs and I go every 6 months to be checked. So far so good!
Best of luck to y'all. There is definitely hope!
I elected to go to UAMS in Little Rock and after a weeks testing I met with a myeloma specialist who said he could treat me there and get me off of dialysis. So in September of 2011 I entered the hospital there and had my last dialysis treatment. Afterwards, the nephrologist said he was taking me off of dialysis to see how my kidneys would perform because the longer you're on, the more your kidneys become dependent on it. He said it's crucial to get off within the first 6 months.
So I got off dialysis and completed the chemo regimen, then had 2 stem cell transplants at UAMS over a 9 month period. I've been in complete remission for 3 years and my normal creatinine ranges from 1.4 - 1.6 every month. My nephrologist is very pleased with my outcome, and I thank my wonderful doctors both here at home and at UAMS for helping me achieve remission and get better kidney function. I do not take any maintenance drugs and I go every 6 months to be checked. So far so good!
Best of luck to y'all. There is definitely hope!
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Jo Ann Witkowski
Re: How long does it take for kidneys to recover?
Thanks for the additional responses. It is comforting knowing that others have been in this same situation (even worse!) and are doing so well!
That patience thing ... something both Larry and I have to work on. We are both so blessed to be able to focus on getting him well and not have to worry about work right now. He was going to retire at 60 (he's 58), but he'll just jump into that a little early.
We did get an appointment with a kidney specialist at the Mayo Clinic tomorrow. Looking forward to hear what she has to say. In the meantime, we will stay positive and continue to pray for things to turn around.
Thanks again and best of luck to all those fighting multiple myeloma.
That patience thing ... something both Larry and I have to work on. We are both so blessed to be able to focus on getting him well and not have to worry about work right now. He was going to retire at 60 (he's 58), but he'll just jump into that a little early.
We did get an appointment with a kidney specialist at the Mayo Clinic tomorrow. Looking forward to hear what she has to say. In the meantime, we will stay positive and continue to pray for things to turn around.
Thanks again and best of luck to all those fighting multiple myeloma.
Re: How long does it take for kidneys to recover?
My nephrologist said that about 25% of multiple myeloma patients have renal dysfunction. I think the key here is to choose and stick with a nephrologist with whom you can connect. My first nephrologist assigned to me when I was first hospitalized with multiple myeloma (we've nicknamed her "Dr. Downer") gave me 18 months to live. My creatinine was over 4.0 and my GFR was at 14. She said dialysis was no way to live and that I should spend the next year having fun knowing I didn't have long left.
We changed nephrologists and, go figure, 18 months later, I am now doing much better. My GFR hovers around 30 and creatinine hovers around 2.2. My myeloma is in remission. The first nephrologist predicted the autologous stem cell transplant I had in June of 2014 was going to "kill" my kidneys. In fact, it made it better. I was dialyzed once to take the Cytoxan out after infusion. I am happy to report that what seemed to be a fatal issue for me no longer seems fatal.
I think you are expecting too much too soon, however. If your husband was just diagnosed in April, I would think that it will take many months of hydration and getting the myeloma out of the way before the kidneys can do anything. I have a large glass of cranberry juice every morning. There are no phase 3 trial studies that proves its efficacy, but it sure isn't hurting and it makes me feel like I'm doing something about my kidneys.
Good luck!
We changed nephrologists and, go figure, 18 months later, I am now doing much better. My GFR hovers around 30 and creatinine hovers around 2.2. My myeloma is in remission. The first nephrologist predicted the autologous stem cell transplant I had in June of 2014 was going to "kill" my kidneys. In fact, it made it better. I was dialyzed once to take the Cytoxan out after infusion. I am happy to report that what seemed to be a fatal issue for me no longer seems fatal.
I think you are expecting too much too soon, however. If your husband was just diagnosed in April, I would think that it will take many months of hydration and getting the myeloma out of the way before the kidneys can do anything. I have a large glass of cranberry juice every morning. There are no phase 3 trial studies that proves its efficacy, but it sure isn't hurting and it makes me feel like I'm doing something about my kidneys.
Good luck!
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Ken
Re: How long does it take for kidneys to recover?
In December 2011, I was in renal failure diagnosed with amyloidosis and multiple myeloma. Creatinine was through the roof.
I was started on dialysis and Velcade and dex. They wanted to put in a permanent port, and I refused. Instead I used my diet to help heal my kidneys. They let me stop dialysis after about 2 months when my creatinine would hold below 3. On its own.
I quit the dex after about a year and have continued Velcade subQ every other week since then. I'm in remission and creatinine is stable at 1.6.
I think all the cells in your body regenerate and heal with proper nutrition. But don't use the kidney association website. They have you eat crap. Do your own research.
I was started on dialysis and Velcade and dex. They wanted to put in a permanent port, and I refused. Instead I used my diet to help heal my kidneys. They let me stop dialysis after about 2 months when my creatinine would hold below 3. On its own.
I quit the dex after about a year and have continued Velcade subQ every other week since then. I'm in remission and creatinine is stable at 1.6.
I think all the cells in your body regenerate and heal with proper nutrition. But don't use the kidney association website. They have you eat crap. Do your own research.
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Joni B
Re: How long does it take for kidneys to recover?
In early 2012, my wife was diagnosed in the hospital while in kidney failure with multiple myeloma and amyloidosis. Her lambda light chains were over 7000, creatinine in the 3 to 4 range, and calcium of 13.
She began dialysis and received the same medication that you are now on and had a profound response. After 34 days in the hospital, she was discharged and off dialysis with creatinine below 2 and a GFR in the 40's. Her creatinine ultimately went as low as 0.8 and GFR in the 50's and 60's, where it remains today.
(While in the hospital, due to her weakened state, she was placed in the ICU to receive full sessions of dialysis)
She began dialysis and received the same medication that you are now on and had a profound response. After 34 days in the hospital, she was discharged and off dialysis with creatinine below 2 and a GFR in the 40's. Her creatinine ultimately went as low as 0.8 and GFR in the 50's and 60's, where it remains today.
(While in the hospital, due to her weakened state, she was placed in the ICU to receive full sessions of dialysis)
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rlloyd
20 posts
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