Kidney Failure

My husband has multiple myeloma and was diagnosed by a nephrologist because of kidney failure. He has been on 4 different treatments in 15 months... all have failed. Now we found out he is in kidney failure again and disease is progressing.
Dr. told us he will not last long. His m-spike 6.4.

He started Revlimid 15 days ago and we are hoping it will work.

He had falling spell on Sunday afternoon, and after going to the hospital emergency room w found out that is electrolytes were way out of balance due to complete kidney failure. 3 units of blood and multiple drugs later, he is stable...and it looks like his kidneys are resolving some issues.

The Dr. told us if Revlimid doesn't work, we don't have any more options.

Has anyone else dealt with Kidney Failure? What did you do? Has it resolved for you?

Thank you for all your feedback.

Good Morning Liz;

His m-spike 6.4.

That's a pretty high number. Is he experiencing much bone pain?

The Dr. told us if Revlimid doesn't work, we don't have any more options.

I don't agree with this statement. Tell the doc in addition to the REV you want him on VELCADE. The two together tend to counteract each other's side effects.

Depending on his age, you also have the possibility of a stem cell transplant. They don't like giving them to patients over 65. Also, are there any trial studies occuring at the hospital you visit? If not, are you willing to travel to participate in one?

Has anyone else dealt with Kidney Failure? What did you do?

When first Dx. I was in renal failure. This become the major issue in my recovery. And also in your husband's. If he is d.c. from the hospital he should be consuming large amounts of water. He MUST keep the kidneys hydrated.

The doctor you are seeing, is (s)he a MM specialist? If not, find one. Again, I would consider  a trial study if  his age prohibits him from a SCT. Don't let one doctor's opinion discourage you from seeking the best treatment plan possible for your husband.

Good luck and welcome to our famiy. Do come back and update us on your progress.

Take care;

Kevin

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Dear Kevin, Thank you for writing back. He is in the hospital right now sleeping and I feel at my wits end. The 6.4 m spike happened really quickly. In May, it was at .6 but it relapsed in June and has ben escalating quickly no matter what we do. He is not in as much pain as he used to be. I don't know how it resolved, but he does take morphine extended release pills with percocet for breakthrough pan. The morphine has helped him and he seems pretty pain fee. He is 61 and a SCT could be an option, but he has not been willing to consider it. I was worried it is no longer an option because of his high m-spike. He also needs blood A LOT. He was on a clinical trial for two months before we started Revlimid but they removed him from it because his complications have been too great and it was not working. He just sort of crashed on this study. He needed 8 pints of blood in one week. They just did a another biopsy and found his tumor burden more than doubled. I think we are scared to try another one, hoping Revlimid will work. I don't know if he has a lot of wiggle room. My husband is so worried about offending his Dr., I don't know if I can get him to see a specialist. His Doctor is working a regular oncologist working in conjunction with a MM specialist in San Diego, but they are both medication oriented, not Stem Cell transplant oriented Before we started the clinical trial two months ago I did contact a Stem Cell Dr. and they are willing to see him if I can get him to go. We have 4 children at home and I could not be with him all the time during the transplant. Right now to him, he is so tied to me that the thought of being away for months seems worse than death to him. I am a teacher and our only source of income and insurance. I was with him all summer, but now school is in session and I have missed lots of days already. It is hard for me to balance having to work and trying to take care of him and all our children. There are a lot of emotional issues at play. Thank you for sharing. I feel like I need the support of a group that understands what is going on so I was so glad to find this message board. Thank you. Liz

I'll say a prayer for you and your family today.

 

God Bless

Liz - I sent you a PM.  Bottom line, time to put all the fears and loyalties aside and fight.  Your husband is being under treated and the Myeloma is rolling.  He's 61...WAY too young.  A specialists is needed.

My best to you

Doug

Liz I sent you a private reply as I was successful in overcoming but by natural means  so all the best..mms

On 10/14/2009 UTboy wrote:

Liz - I sent you a PM.  Bottom line, time to put all the fears and loyalties aside and fight.  Your husband is being under treated and the Myeloma is rolling.  He's 61...WAY too young.  A specialists is needed.

My best to you

Doug

 

You don't say what the other treatments are that you have tried.  For me, I have used thal (with & without dex), revlimid, velcade/rev/dex, an auto SCT, hyper C-VAD and melphalan/velcade/dex.  The only thing that seems to work is the combination of vel/rev/dex.  Neither the revlimid nor the velcade did much good without the other.  Now we are adding cyclophosphamide to the mix to see if the numbers will go down more.  Keep trying different options.

I also was in kidney failure when I was diagnosed but it cleared up fairly quickly even though my myeloma numbers did not go down.  Since then, my kidneys have been doing OK.  It is very important to keep them flushed by drinking lots of water.

Don't let them give up on him.

Janet

Liz,  As everyone has said, it is time to fight this.  My husband was diagnosed this past summer (2009).  He too is 61 and was in good health until he showed signs of disease on an MRI for a back strain, or so we thought.  He was in acute renal failure with a calcium over 15.  He had 28% on his first biopsy and we are awaiting the results of one done last week, but his labs are looking much better.  He has had to have blood, but overall doing okay.  He has the non-secretory type so we don't know M-spike as his only shows in urine...which by the way, 24 hour urines are fun....NOT!

 He has taken the Rev/Vel/Dex therapy and so far has responded. Now granted, it knocked him for a loop...but he had no detection in his urine "freelites" once he was finished.  He has lost about 40 lbs...has already been worked up for SCT and we will see the folks in San Antonio this next week to develop the plan for that.  Our oncologist is very progressive and very up to date....and willing to listen.  My husband was having issues with the dex 40 mg weekly, so he allowed us to divide the dose to 20 mg/twice weekly, which was better for him.  And our doctor (and us) have noses in the research....and is always calling and asking others to get more input....and we like his way of asking us....what we think and what we see.

I would get a second opinion immediately.  Your husband is too young to give up....and this is where it will be hard for you in keeping him focused on getting through all this.  As a caregiver, it takes an extreme amount of strength to say things to your loved one, but at times, it is necessary.   Eating was my spouses biggest issue, and there were times that I had to just put it to him....you don't eat, you can't build up....so eat!  I am always empathetic in that I can't possibly know what he is going through...but I am certain that it takes protein to build tissue, thus protein must be consumed. 

Good luck Liz, you came to a place that has years...yes, years...of wisdom and willingness to share.  AMW 

Thank you everyone for writing and giving me some advice. Wow. I can't tell you how empowering it feels to say we're going to fight this rather than giving up... so I am trying to say that. We just need to make it to Monday. I guess that is where it is now... just get through the weekend. Just get through today. We are home now. My husband can't walk because his legs are swollen up like balloons.... I don't know how to fix it, but hopefully it will resolve. Dr. said it is because of all the fluids in the hospital. I have never seen anything like it. No dialysis yet... his kidneys have regained some function. We have 4 more revlimid pills to take on this cycle, then we will see where we are at. He is alert, lucid and can talk to me... which is a huge blessing. Thanks you again. I won't give up. Liz

He has taken thal/dex, then velcade/Doxil, then a study drug, then rev/dex/velcade. He used to get good response, but very short lived. Now gets no response at all. I am hoping this latest one will work. His regular Oncologist was on vacation, so we haven't even been able to talk to him, but will see him Monday and hopefully get a more agressive plan of action. Thank you so much for writing. Liz