Hi,
August marks year 2 with multiple myeloma and 18 months post stem cell transplant [SCT]. Transplant achieved complete response. I am very fortunate to have excellent care both locally and at the BMT center at the University of Minnesota.
However,
1. Revlimid is misbehaving
2. Stage 3 left collapsed and fractured vertebra with much pain
3. Kidney damage at about 51% function.
Still, altogether huge improvement from onset in 2012. Many more good days to come.
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10 posts
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Re: Newbie from Minnesota
Hi Valentine,
That's great that you had a complete response! I wish you the best with improving your kidney and bone situation. I'm sure your positive outlook has helped you a lot!
That's great that you had a complete response! I wish you the best with improving your kidney and bone situation. I'm sure your positive outlook has helped you a lot!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Newbie from Minnesota
Welcome to the forum Valentine.
I agree with Joy - it's great that you've achieved a complete response.
What sort of problems are you having with Revlimid?
I agree with Joy - it's great that you've achieved a complete response.
What sort of problems are you having with Revlimid?
Re: Newbie from Minnesota
Cheryl,
Six months into maintenance I had a large deep vein thrombosis that actually got me hospitalized. The kicker was days 19, 20, and 21 were really tough for me, with more than normal fatigue, stomach and digestive track issues and even attitude. Turned out if you took my blood panel on day 21 vs 27 or 28 they were significantly more out of line. It has now been reduced from 10 mg to 5 mg for the last two cycles, so really low dose. We will see what the panel says next week.
Six months into maintenance I had a large deep vein thrombosis that actually got me hospitalized. The kicker was days 19, 20, and 21 were really tough for me, with more than normal fatigue, stomach and digestive track issues and even attitude. Turned out if you took my blood panel on day 21 vs 27 or 28 they were significantly more out of line. It has now been reduced from 10 mg to 5 mg for the last two cycles, so really low dose. We will see what the panel says next week.
Re: Newbie from Minnesota
Hi Valentine,
Are you still in complete response with these renal and skeletal issues in play, or are these legacy issues that carried over from before your transplant? I'm just trying to understand how you could be in complete response, yet be dealing with these issues, especially if they developed post-transplant?
Are you still in complete response with these renal and skeletal issues in play, or are these legacy issues that carried over from before your transplant? I'm just trying to understand how you could be in complete response, yet be dealing with these issues, especially if they developed post-transplant?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newbie from Minnesota
I am approaching my 18 month check so will see if I am still in complete response. Renal and skeletal issues are both from onset. I was told at one early point I was going to need dialysis if numbers hadn't improved. I recently had an MRI and have additional L5 damage that needs investigating.
So at this point we are still hopeful I am still in complete response.
So at this point we are still hopeful I am still in complete response.
Re: Newbie from Minnesota
Valentine,
I take it you are aware of the potential complications and cautions of Revlimid in patients with kidney impairment? Is there a specific reason your doctor doesn't have you on something like Velcade instead of Revlimid? Note that there has been at least one study that has shown that Velcade-based approaches can help reverse kidney impairment (in NDMM patients). Just something to consider discussing with your doc.
https://myelomabeacon.org/news/2012/08/08/novel-agents-help-reverse-kidney-impairment-in-newly-diagnosed-multiple-myeloma/
I take it you are aware of the potential complications and cautions of Revlimid in patients with kidney impairment? Is there a specific reason your doctor doesn't have you on something like Velcade instead of Revlimid? Note that there has been at least one study that has shown that Velcade-based approaches can help reverse kidney impairment (in NDMM patients). Just something to consider discussing with your doc.
https://myelomabeacon.org/news/2012/08/08/novel-agents-help-reverse-kidney-impairment-in-newly-diagnosed-multiple-myeloma/
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newbie from Minnesota
Sorry to hear about the blood clot that you experienced, Valentine. I sometimes wonder if clots happen to people on Revlimid a lot more than what you see in statistics from clinical trials.
Multibilly - If I recall from another post that Valentine made, her transplant was an allo transplant. I think there is research suggesting that Revlimid after an allo transplant can be helpful. I don't think there is similar research at this time when it comes to Velcade.
Perhaps Mark, who comments here in the forum frequently about allo transplant issues, can chime in on the issue.
You are right I believe that Velcade is generally preferred versus Revlimid in patients with kidney issues.
Multibilly - If I recall from another post that Valentine made, her transplant was an allo transplant. I think there is research suggesting that Revlimid after an allo transplant can be helpful. I don't think there is similar research at this time when it comes to Velcade.
Perhaps Mark, who comments here in the forum frequently about allo transplant issues, can chime in on the issue.
You are right I believe that Velcade is generally preferred versus Revlimid in patients with kidney issues.
Re: Newbie from Minnesota
Cheryl,
Good point about the allo consideration with regard to drug selection. I have no idea how that factors in when you couple in that aspect of the situation along with kidney impairment.
Good point about the allo consideration with regard to drug selection. I have no idea how that factors in when you couple in that aspect of the situation along with kidney impairment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newbie from Minnesota
Both DVT and renal issues have been discussed. I have a nephrogist that works with multiple myeloma that is a great blessing in a rural area. This doctor was the first to say "5 to 10" year outlook even if it is just for kidney function. Yes, DVT is a known issue with Revlimid, but we'll see what the reduced dose does.
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