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Kidney failure and treatment delay

by adrian on Tue Feb 10, 2015 9:30 am

Has anyone had the situation where the kidneys are severely affected and doctors don't want to give treatment until the kidneys improve, but the disease is causing the kidney failure?

My brother suddenly had kidney problems and was then diagnosed with myeloma. His creatinine was extremely high 280 - 320, initially - now 400. This all started in November 3, 2014. His first chemo treatment was late November 2014.

His creatinine went down slightly, but a few treatments were missed and it went back up quickly.

He is in hospital now getting blood and IV. They discovered his sodium was low at this time and that is being replaced in the IV. The doctor feels he cannot give full chemo. Regularly, my brother is on Velcade, dexa­metha­sone and cyclo­phos­phamide. But has not had cyclo­phos­pha­mide this week and didn't have dex last week.

Has anyone had kidney failure? What chemo drugs worked for you? Any other information you can give is appreciated.

Thank you!

adrian

Re: Kidney failure and treatment delay

by coopershawk on Tue Feb 10, 2015 5:37 pm

Hi Adrian,

When I was diagnosed with myeloma, my kidney function was extremely low and I was treated with Velcade and dex before my stem cell transplant. When I had my transplant, they reduced the amount of melphalan because of my reduced kidney function, but I still had a transplant. Today my kidney function is low but much improved. My kidney specialist said I can function quite normally with what I have now.

Hopefully your brother will respond to the Velcade and dex too!

All the best!

Earl McKenzie

coopershawk
Who do you know with myeloma?: No one else.
When were you/they diagnosed?: August 2010
Age at diagnosis: 64

Re: Kidney failure and treatment delay

by Twi on Tue Feb 10, 2015 7:47 pm

Hi Adrian,

Here is the experience my mother had a couple of years ago with kidney failure.

My mom was diagnosed in May 2010 with multiple myeloma. A couple of years ago, in spite of treatment, the kidneys had started failing and she went into renal failure. The oncologist was faced with the same dilemma - cannot give chemo because it will affect kidneys, but the kidneys have failed because of the myeloma, which MUST be treated in order to get the kidneys to possibly kickstart and come out of failure (which is possible - myeloma kidney failure CAN be temporary).

My mom almost didn't make it, things were so bad. She had very high calcium and anemia from the myeloma being more active. They were giving her weekly blood transfusions and giving her IV fluids to flush the calcium when it would creep up. (My mom ended up being discharged to home so she had many treatments at home through home health care). She was getting Velcade and dex - after 7 weeks of this, with her getting worse and worse and only being kept going by the blood / IV fluids for the anemia and high calcium, the oncologist gave us the bad news that the Velcade and dex had done NOTHING - not a thing, the myeloma was crazy worse.

He said he wanted to try low-dose melphalan and prednisone (a steroid, like dex, but not quite as strong) in pill form, taken at home. Though it is the same drug used for stem cell transplants
(they use high-dose induction for that), this is low-dose pills at home combined with prednisone. It is a very old treatment; depending on creatinine, BUN, and kidney function (eGFR on labs), low-dose melphalan can be tolerated VERY WELL by the kidneys. It is also very well tolerated side effect wise; my mom had very few issues with it.

This combo literally saved my mom's life and gave her another full year of good quality of life before the melphalan and prednisone failed her and her kidneys failed again. That's another part of the story, but I hope you will bring up LOW-DOSE MELPHALAN AND PREDNISONE in pill form. My mom's creatinine hit a high of 4.3, but the number you give sound like a different scale/range.

Your brother right now should have an oncologist and a nephrologist (kidney doctor). The nephrologist can consult with your brother's oncologist whether the low-dose melphalan and prednisone is a good option to try. Again, it CAN BE - depending - very well tolerated in patients with decreased kidney function and kidney failure. Please bring this up to them!

I wish you and your brother the best of luck. It is so good he has you to advocate for him - speak up about this option!

Twi
Name: Twi
Who do you know with myeloma?: My wonderful Mom, Janet
When were you/they diagnosed?: May 2010
Age at diagnosis: 70

Re: Kidney failure and treatment delay

by caregiver on Wed Feb 11, 2015 8:26 pm

Sounds like the kidney failure is the result of lambda light chain myeloma. the Lambda molecule is twice the size of the Kappa light chain. The kappa goes through the kidneys ok but the Lambda will clog the kidneys up.
The kappa wrecks havoc with your bones making lesions that look like metastatic cancer.
If you go to the Binding Site web site (Binding Site is the name of the company that makes the machine that tests for the light chains) http://thebindingsite.com/nephrology. they also have a lot of info under "Clinical Education".

also: http://thebindingsite.com/webinars?action=webinars&view=33

caregiver

Re: Kidney failure and treatment delay

by Daisy on Wed Feb 11, 2015 8:39 pm

I was diagnosed with multiple myeloma when my kidneys failed. I was immediately put on dialysis and also received chemo (Velcade and Dex.) My nephrologist and oncologist worked very closely together. You don't mention a nephrologist in your information. It's critical that he/she be working with you.

Daisy

Re: Kidney failure and treatment delay

by adrian on Thu Feb 12, 2015 7:26 am

Thanks, Daisy.

Can you tell me more? We are working with a nephrologist, but just started. At the moment he is giving my brother IV with bicarbonate sodium to get the kidneys back in line. No talk about dialysis but we have been wondering if that is next.

Do you think we should push for dialysis in order to save his life? Not getting full treatments because of kidneys and cancer not improving and kidneys are getting worse also.

Thank you

adrian

Re: Kidney failure and treatment delay

by Blackbird on Thu Feb 12, 2015 10:04 am

FWIW, I only have one kidney. I was originally diagnosed with light chain deposition disease by my nephrologist who, in turn, referred me to my oncologist who diagnosed my multiple myeloma. Light chain deposition disease, as you probably know, is one of the possible conditions that can occur with myeloma. My creatinine was high (3 point something or other. Not near as high your brother's! :shock: ) and was climbing.

What I found was that both my oncologist and nephrologist were somewhat at odds with the stem cell transplant doctor. The stem cell transplant doctor was hesitant to do the transplant because I only had one kidney and he was afraid that it wouldn't survive the process. Both my oncologist and nephrologist stated that, if I didn't have the transplant, I would lose my kidney anyway. The trans­plant doctor sort of compromised and split my melphalan dosage into 2 sessions to reduce the strain on my kidney.

That was in November of 2013 and, fortunately, my kidney has survived, the transplant was successful, and I'm still in remission. My creatinine currently floats right around 1.8, which is considered normal for someone with one kidney.

Blackbird
Name: Rick Crow
Who do you know with myeloma?: Me
When were you/they diagnosed?: Feb, 2013
Age at diagnosis: 53

Re: Kidney failure and treatment delay

by Twi on Thu Feb 12, 2015 11:25 am

Adrian,

If the myeloma is not pushed back, dialysis will not save your brother. Dialysis can only work so long - as the large proteins clog the kidneys and eventually the cancer overwhelms and the dialysis cannot keep up. This is what happened to my mom when she died. The chemo stopped working, she went into kidney failure a second time, and they had to put her on dialysis or she would have died. The dialysis kept her going for another month and a half - with the hope that another chemo would kick the multiple myeloma back. It didn't, and the multiple myeloma overtook my mom's body and this is what she died from - total kidney failure. The dialysis stopped working.

From my experience, the focus should be on (1) having a kidney doctor (nephrologist) on board with your brother's oncologist (cancer doc), and (2) if it was me, I would tell them what about low-dose melphalan and prednisone. My mom's nephrologist okayed this drug combo the first time she went into kidney failure, saying that, of all the myeloma chemo drugs out there, the LOW-DOSE melphalan and prednisone was one that even myeloma kidney failure patients can tolerate. If they don't get the myeloma kicked back with chemo, there is no way the kidneys can keep working - they are being clogged, as someone said above, with the large proteins that the multiple myeloma puts off when it is highly active.

I don't know that low-dose melphalan and prednisone can help your brother, but a kidney doctor SHOULD know about this drug or can look it up and see how it's clearance is handled by kidneys that are compromised. My mom was in kidney failure (not on dialysis yet) and this drug combo saved her life. The myeloma was kicked back and my mom did not have to go on dialysis, her kidneys slowly, with time, bounced back (never to 100%) until 1.5 years later when she went through it again.

Twi
Name: Twi
Who do you know with myeloma?: My wonderful Mom, Janet
When were you/they diagnosed?: May 2010
Age at diagnosis: 70


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