This week’s poll is about myeloma kidney disease, one of the common symptoms of multiple myeloma.
A few clarifications:
First, this poll is for anyone who has been diagnosed with symptomatic multiple myeloma. If you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.
Second, please answer whether you had kidney disease at the time of your diagnosis. We will run a poll at a later date about the current status of your kidneys.
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers. In particular, if you had kidney disease at the time of your myeloma diagnosis, others may find it helpful if you describe whether you needed dialysis and for how long.
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Re: Weekly Poll - Kidney Disease At Myeloma Diagnosis
Dx with Stage lllB Multiple Myeloma after presenting with kidney failure, GFR 1. Several days and tests later including a kidney biopsy revealed Multiple Myeloma. I was 40, in very good health. Dialysis started immediately, 3x wk, 4 hour runs. Took 3 weeks to stabilize me before they could begin chemo to attack the Myeloma. Only treatment option, VAD, auto transplant. Dialysis throughout chemo & transplant.
Off dialysis 7 months later with a GFR 14. Remission with multiple myeloma 4 years, have had several relapses since, various treatment, but have not needed dialysis since. Ofcourse monitored monthly with Renal. Presently, 10 years after auto stem cell, GFR 40.
Off dialysis 7 months later with a GFR 14. Remission with multiple myeloma 4 years, have had several relapses since, various treatment, but have not needed dialysis since. Ofcourse monitored monthly with Renal. Presently, 10 years after auto stem cell, GFR 40.
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ktyhall - Name: Katrina
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2002
- Age at diagnosis: 40
Re: Weekly Poll - Kidney Disease At Myeloma Diagnosis
Wow, Katrina. Your story is so encouraging to me. I know you were younger than I was when you were diagnosed, but I thought the multiple myeloma with the Kidney failure was a double blow and really reduced your chances of surviving..At a routine blood screening my GFR was around 30 - they did a kidney biopsy and found the multiple myeloma. They said I was stage IV Chronic Kidney Disease and stage III Cancer. I had chemo and that made my kidney function drop below 20%. Then I had a Stem cell replacement in November 2012. I will start back on low dose Revlimid Feb 17th, I had honestly thought I had 2-4 years left, but you have lived 10 years! Awesome!
Do you follow a pretty strict renal diet?
Do you follow a pretty strict renal diet?
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Weekly Poll - Kidney Disease At Myeloma Diagnosis
Hi Cathy!
Kidney disease/failure with Multiple Myeloma is complicated but not hopeless! Yes, my Myeloma experience sort of started backwards, if you will. To be honest they really didnt give me much hope for any recovery. At time of dx doctors words were, "this is very aggressive, its end-stage, you are too young, so the only thing we can do is fight it aggressively".....I had no choices, time was of the essence. But, with Myeloma you never know.....and you must never give up hope or pushing forward. I had an amazing team of doctors that were thrown into a scenario that forced complete cooperation and a single purpose, to see if they could actually save me! I am very thankful for their dedication and persistance, as well my families persistance in coming along side me to fight no matter what odds they threw at me. 2013 marks my 11th year with Myeloma.....I have to shake my head at times.....11 years ago, June 5th......that day I didnt think I would see Christmas that year! Thankfully, I have seen my children grow and go to college, get married and this past year got to hold my first grandbaby 1/2 hour after she was born! Never give up......
My doctors are watchful and on top of all my labs, tests etc. which are done monthly, but they have lessened their grip on me and have let me live my life a little less restricted. I did however follow a complete renal diet for many years, watching my potassium, sodium, calcium very carefully. Today not so strict, but ever mindful! My Myeloma has relapsed a few times where I have done several cycles of Velcade. I tried Thalidomide 5 years ago, that lasted only a few months, but I have found some success with Velcade. I am on a "treatment" break right now, as Velcade seems to help put me into a stable pattern, at which time I decide to stop treatment and wait and see. Although many struggle with Myeloma, each case is very individual and one treatment may work for some, but not for others.....It is very much unique to each person. The one thing I have found no matter how you respond to treatment is that we all have one thing in common for sure.....our desire to fight, to win, to do whatever we have to, to allow us to live! So, never give up, always look up!!! take care Cathy!!
Kidney disease/failure with Multiple Myeloma is complicated but not hopeless! Yes, my Myeloma experience sort of started backwards, if you will. To be honest they really didnt give me much hope for any recovery. At time of dx doctors words were, "this is very aggressive, its end-stage, you are too young, so the only thing we can do is fight it aggressively".....I had no choices, time was of the essence. But, with Myeloma you never know.....and you must never give up hope or pushing forward. I had an amazing team of doctors that were thrown into a scenario that forced complete cooperation and a single purpose, to see if they could actually save me! I am very thankful for their dedication and persistance, as well my families persistance in coming along side me to fight no matter what odds they threw at me. 2013 marks my 11th year with Myeloma.....I have to shake my head at times.....11 years ago, June 5th......that day I didnt think I would see Christmas that year! Thankfully, I have seen my children grow and go to college, get married and this past year got to hold my first grandbaby 1/2 hour after she was born! Never give up......
My doctors are watchful and on top of all my labs, tests etc. which are done monthly, but they have lessened their grip on me and have let me live my life a little less restricted. I did however follow a complete renal diet for many years, watching my potassium, sodium, calcium very carefully. Today not so strict, but ever mindful! My Myeloma has relapsed a few times where I have done several cycles of Velcade. I tried Thalidomide 5 years ago, that lasted only a few months, but I have found some success with Velcade. I am on a "treatment" break right now, as Velcade seems to help put me into a stable pattern, at which time I decide to stop treatment and wait and see. Although many struggle with Myeloma, each case is very individual and one treatment may work for some, but not for others.....It is very much unique to each person. The one thing I have found no matter how you respond to treatment is that we all have one thing in common for sure.....our desire to fight, to win, to do whatever we have to, to allow us to live! So, never give up, always look up!!! take care Cathy!!
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ktyhall - Name: Katrina
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2002
- Age at diagnosis: 40
Re: Weekly Poll - Kidney Disease At Myeloma Diagnosis
What an encouraging message, Katrina - especially to hear that you have had relapses, but then have gotten better.
Today was almost 90 days after my Auto Stem Cell replacement - and darn, my light chains are creeping back up. I am supposed to start Revlimid tomorrow.
The thing you, Katrina< are able to do, that I need to learn to do, is to have this multiple myeloma simmering and yet not be obsessed with it. I want to focus on life and my grandchildren and all I have to be grateful for.
So, I think I need to do whatever they tell me - take Revlimid & do a renal diet, but try not to get my focus on that. sigh
Thanks.
Cathy
Today was almost 90 days after my Auto Stem Cell replacement - and darn, my light chains are creeping back up. I am supposed to start Revlimid tomorrow.
The thing you, Katrina< are able to do, that I need to learn to do, is to have this multiple myeloma simmering and yet not be obsessed with it. I want to focus on life and my grandchildren and all I have to be grateful for.
So, I think I need to do whatever they tell me - take Revlimid & do a renal diet, but try not to get my focus on that. sigh
Thanks.
Cathy
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: Weekly Poll - Kidney Disease At Myeloma Diagnosis
Hi both,
Good to find this post. My husband is dealing with renal failure and multiple myeloma. So far I do not see signs of improvement and we have better days as well as worse days mentally when dealing with this. He has changed a lot - probably the shock of multiple myeloma and the kidney failure got him right to his head. He is 57 at the moment.
Good to find this post. My husband is dealing with renal failure and multiple myeloma. So far I do not see signs of improvement and we have better days as well as worse days mentally when dealing with this. He has changed a lot - probably the shock of multiple myeloma and the kidney failure got him right to his head. He is 57 at the moment.
6 posts
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