This is such a rollercoaster.
My husband was scheduled for cardiac cath tomorrow, to place 3 or 4 stents. His heart disease is much worse now with the multiple myeloma. Today we found out his creatinine is up from 1.7 to 2.5. No heart cath tomorrow, we'll be seeing the oncologist instead.
I am really not sure what to think of any of this. His myeloma has been in remission, so is the increase in creatinine a sign of relapse?
At initial diagnosis his creatinine was 2.3. He was only treated with Cytoxan [cyclophosphamide] and Velcade initially, for 5 cycles. Treatment was stopped due to neuropathy from the Velcade. But his numbers have remained good since November. Around March is when we noticed the creatinine going up.
If anyone has any thoughts on this, I would appreciate hearing them.
Thanks. Cindy
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Re: Increasing creatinine levels - sign of relapse?
So, no answers yet. With additional hydration, creatinine is down to 2. BUN has increased to 40. Protein in random urine is 4. Calcium is in the high end of normal, and IgG is still in the lower normal range. Hemoglobin has dropped back down to 12.5, he had just recently gotten into the low end of normal. Waiting on results of a kidney ultrasound. Hoping to hear something today.
I have absolutely no idea what to think of all of this. We are still seeing a myeloma specialist, but not the same one we started with. My concern is,obviously, relapse. But also, there is no amount of doctors notes (or anything I could write here) that would describe the level of mental instability my husband had at the time of his diagnosis. I don't know how I could possibly get thru that again and want to prevent that at all costs.
That is not an easy thing to convey to a doctor with my husband present and doing well mentally at this time. It makes me hyper-vigilant for any changes in comprehension, or changes in behavior. I don't think he looks quite as well as he had been. But again, I'm really worrying a lot. We also cannot work on repairing his heart with his kidneys in this condition.
I'm rambling now. and venting. If anyone has any comments that would be great, but I also realize that no one has those answers, and we simply have to wait on the test results. I hate waiting.
I have absolutely no idea what to think of all of this. We are still seeing a myeloma specialist, but not the same one we started with. My concern is,obviously, relapse. But also, there is no amount of doctors notes (or anything I could write here) that would describe the level of mental instability my husband had at the time of his diagnosis. I don't know how I could possibly get thru that again and want to prevent that at all costs.
That is not an easy thing to convey to a doctor with my husband present and doing well mentally at this time. It makes me hyper-vigilant for any changes in comprehension, or changes in behavior. I don't think he looks quite as well as he had been. But again, I'm really worrying a lot. We also cannot work on repairing his heart with his kidneys in this condition.
I'm rambling now. and venting. If anyone has any comments that would be great, but I also realize that no one has those answers, and we simply have to wait on the test results. I hate waiting.
Re: Increasing creatinine levels - sign of relapse?
Hello Cindy,
I'm very sorry to hear about the change in plans regarding your husband's surgery. I've been following your husband's story off and on since you've started posting here, so I can completely why you would feel the fear you described in your most recent update.
I'm not a doctor, but I think that the increase in your husband's creatinine and BUN levels are not particularly good signs. Has your husband had any free light chain tests or M-spike measurements done recently and, if so, what have been the results of those tests?
The good thing is that, even if your husband is starting to relapse, he has lots and lots of options for additional treatment. Most likely, his doctors will want to see if he responds to Velcade, or Velcade and cyclosphosphamide, again. You didn't mention dexamethasone, but did he also get it with his Velcade and cyclophosphamide? Most of the time, dex is also included when the other two drugs are given.
Did your husband get the Velcade as an infusion or as an injection into the skin? If he got it as an infusion, the doctors may want to try giving it as an injection into the skin, since doing it that way reduces the chances of neuropathy occurring.
Please keep us updated on how things are going and any additional lab results or questions that you have.
Good luck!
I'm very sorry to hear about the change in plans regarding your husband's surgery. I've been following your husband's story off and on since you've started posting here, so I can completely why you would feel the fear you described in your most recent update.
I'm not a doctor, but I think that the increase in your husband's creatinine and BUN levels are not particularly good signs. Has your husband had any free light chain tests or M-spike measurements done recently and, if so, what have been the results of those tests?
The good thing is that, even if your husband is starting to relapse, he has lots and lots of options for additional treatment. Most likely, his doctors will want to see if he responds to Velcade, or Velcade and cyclosphosphamide, again. You didn't mention dexamethasone, but did he also get it with his Velcade and cyclophosphamide? Most of the time, dex is also included when the other two drugs are given.
Did your husband get the Velcade as an infusion or as an injection into the skin? If he got it as an infusion, the doctors may want to try giving it as an injection into the skin, since doing it that way reduces the chances of neuropathy occurring.
Please keep us updated on how things are going and any additional lab results or questions that you have.
Good luck!
Re: Increasing creatinine levels - sign of relapse?
As always, I'm not a doc, but I agree that this "could" be a potential sign of a developing relapse. I'm going to guess that your doc is probably going to want to monitor things for awhile, since in order to to be a a technical clinical relapse based on creatinine levels, your creatinine needs to move by 2mg/dL or more....so you are only about a third of the way there. It's also not clear that multiple myeloma is necessarily to blame for this creatinine rise.
As Cheryl asks, how is is his remission being determined? (are there any changes in his M-Spike and Serum FLCs, etc). Has he had a PET/CT and/or a BMB recently?
And, like Cheryl says, there are many, many options available to you should he relapse. It's not as if you you've got to go through all the earlier mental illness issues again (I remember your earlier threads on the topic) if he does relapse. It may simply mean just starting up and/or adjusting a specific drug treatment program that makes sense under these circumstances.
Hope this helps.
As Cheryl asks, how is is his remission being determined? (are there any changes in his M-Spike and Serum FLCs, etc). Has he had a PET/CT and/or a BMB recently?
And, like Cheryl says, there are many, many options available to you should he relapse. It's not as if you you've got to go through all the earlier mental illness issues again (I remember your earlier threads on the topic) if he does relapse. It may simply mean just starting up and/or adjusting a specific drug treatment program that makes sense under these circumstances.
Hope this helps.
Last edited by Multibilly on Sat May 17, 2014 7:36 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Increasing creatinine levels - sign of relapse?
The creatinine level, I did not believe was a sign directly linked to cancer. Kidneys can be under attack for several reasons - hydration, blood pressure, diabetes, etc. People with elevated creatinine levels do not all have cancer, so I guess what I am saying - do not assume it is related to a relapse.
At diagnosis, my husband's level was 6.7. He was not in a good place. Since treatment, he is at a 3.5 - so still not the best, but his new normal. He had a sinus infection and had to take different medications - the creatinine level went up again to 4.3 or so, now it is back down.
So, once again, I want to just let you know that the body can have adjustments. Don't worry and don't accept the word "relapse" unless you know that specifically - via urine, m-spike, BMB, etc.
Be well!
At diagnosis, my husband's level was 6.7. He was not in a good place. Since treatment, he is at a 3.5 - so still not the best, but his new normal. He had a sinus infection and had to take different medications - the creatinine level went up again to 4.3 or so, now it is back down.
So, once again, I want to just let you know that the body can have adjustments. Don't worry and don't accept the word "relapse" unless you know that specifically - via urine, m-spike, BMB, etc.
Be well!
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Increasing creatinine levels - sign of relapse?
Wow, thank you all for the responses and good questions. I'll try to hit them all.
Last bone marrow biopsy was in March at Mayo. No M spike, hence the reimission. We are still waiting for results on urine immunofication. No PET or CT scan yet. And his kidney ultrasound was normal. His Velcade was given by injection but caused quite severe neuropathy. That has receded now and he only feels it very minorly in his toes.
He's never taken dex because at the time of diagnosis he was suffering from delirium, and the doctor felt it would just make things worse. While I hate the cancer, and I hate the heart disease: it is the delirium I worry about the most as his kidney function declines. At diagnosis my husband was in the med/psych unit at the University of Iowa. This was not a good time at all. He could not be left alone for a moment at home, and he was paranoid, delusional, and hallucinating. I give huge credit to the university for diagnosing the myeloma, rather than putting him in a rubber room for the rest of his life.
During this time his creatinine was 2.3 and his hemoglobin was around 11. When he started treatment, it took 3 weeks before he finally came out from his delirium. He has been more mentally well since then, than I have see him since his brain injury in 2011.
So really, there is nothing but the kidney issue to worry me right now as far as the myeloma is concerned. But he's never had a kidney issue outside of the myeloma. The slight drop in his hemoglobin with it really concerns me as well.
I think I am understandably frightened. I think breaking in a new oncologist on top of it makes it harder for me. I did make that very clear to them on Friday. I just don't think any amount of doctors' notes could possibly explain where we've been. We have been very fortunate tho, and he has only ever been treated by doctors specializing in myeloma.
Thank you all again for any input. I truly think this has become my safe space to vent and ramble.
Last bone marrow biopsy was in March at Mayo. No M spike, hence the reimission. We are still waiting for results on urine immunofication. No PET or CT scan yet. And his kidney ultrasound was normal. His Velcade was given by injection but caused quite severe neuropathy. That has receded now and he only feels it very minorly in his toes.
He's never taken dex because at the time of diagnosis he was suffering from delirium, and the doctor felt it would just make things worse. While I hate the cancer, and I hate the heart disease: it is the delirium I worry about the most as his kidney function declines. At diagnosis my husband was in the med/psych unit at the University of Iowa. This was not a good time at all. He could not be left alone for a moment at home, and he was paranoid, delusional, and hallucinating. I give huge credit to the university for diagnosing the myeloma, rather than putting him in a rubber room for the rest of his life.
During this time his creatinine was 2.3 and his hemoglobin was around 11. When he started treatment, it took 3 weeks before he finally came out from his delirium. He has been more mentally well since then, than I have see him since his brain injury in 2011.
So really, there is nothing but the kidney issue to worry me right now as far as the myeloma is concerned. But he's never had a kidney issue outside of the myeloma. The slight drop in his hemoglobin with it really concerns me as well.
I think I am understandably frightened. I think breaking in a new oncologist on top of it makes it harder for me. I did make that very clear to them on Friday. I just don't think any amount of doctors' notes could possibly explain where we've been. We have been very fortunate tho, and he has only ever been treated by doctors specializing in myeloma.
Thank you all again for any input. I truly think this has become my safe space to vent and ramble.
Re: Increasing creatinine levels - sign of relapse?
I had a high, 6+, creatinine when diagnosed 5 years ago. I'm now out of remission and on Revlimid and my creatinine was 1.3 in my last labs. This is from a range of 1.3 to 1.9.
The rise could be from light chains, but the kidneys wouldn't be the only indication.
I think LadyLib is right and the cause is more likely something else, dehydration being the first suspect. You would also need a trend. If he is having only occasional tests it's hard to know what the trending is.
The rise could be from light chains, but the kidneys wouldn't be the only indication.
I think LadyLib is right and the cause is more likely something else, dehydration being the first suspect. You would also need a trend. If he is having only occasional tests it's hard to know what the trending is.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
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