[LadyLib]

Multiple Myeloma - Kidney Involvement - What is your story?

by LadyLib on Sat Aug 24, 2013 1:23 am

My husband woke up with a nose bleed. From there, I had him get his blood pressure checked. From the blood pressure check, we went to blood tests, then a kidney biopsy, then a bone marrow biopsy to chemo. His creatinine level was 6.59 at diagnosis. It is now hovering between 5.1-5.3. He does not want to go on dialysis, preferring to wait to see what the chemo will do for him. Since chemo, he has come off of most of his blood pressure medication and is keeping a normal blood pressure, no swelling, etc. He still works out 3-4 times per week and works. He is determined to avoid dialysis. My fear is when he qualifies for SCT, he may have to go there. What is your story?

[LibbyC]

Re: Multiple Myeloma - Kidney Involvement - What is your sto

by LibbyC on Sat Aug 24, 2013 3:04 am

Hi LadyLib,
I am sorry you and your husband have to travel down the multiple myeloma path. Having said that you have found a great resource in the Myeloma Beacon.

With regards to kidneys, at one stage during my SCT I did have kidney failure but it didn't require dialysis. 3 1/2 years later (I have had other treatment during that time) my creatinine levels are nearly within the normal range.

All the best,
Libby

[Wayne K]

Re: Multiple Myeloma - Kidney Involvement - What is your sto

by Wayne K on Sat Aug 24, 2013 12:55 pm

My creatinine was 9 when I was first diagnosed with Bence Jones.multiple myeloma. For me there was no other option because light chains were clogging my kidneys. The down side for me was the dialysis and the worse part was getting off of it. There seems to be a mindset by the industry that they should do all that they can to keep you on it. When my level settled around 3 I raised Cain and forced them to release me. The reason I said settled is that I needed up missing several sessions because of a conflict with my chemo and my levels never changed after missing them. After I stopped it all together my creatinine levels continued to drop to a stable 1.5. It would appear that the dialysis hit a point where it was holding my creatinine a little high.
I don't think your husband should avoid the dialysis at his range, but I would not allow them to do more than a temporary port and he should be proactive about his use of it. Damage to the kidneys can be just as bad as multiple myeloma.

[LadyLib]

Re: Multiple Myeloma - Kidney Involvement - What is your sto

by LadyLib on Sun Aug 25, 2013 9:42 pm

Thanks for sharing. The kidneys were the indicator and start of all of this. We are hoping that the creatinine levels get better over time. They said he has no chronic kidney issues and that the root cause if the blood. Its been about 8 weeks now, so we will see. He has had 5 chemo treatments (once a week).