My husband had an autologous stem cell transplant in December 2015. He had lab work done last week and his M-spike is still at 0.43 g/dL, which what it was prior to the transplant. We have not yet talked with the doctor, but I feel like maybe the transplant was not successful. Have other had this type of result?
Also, I know we will be facing the decision for maintenance therapy, so I would like to know how soon did you start post transplant?
I appreciate all who have shared there experiences.
Forums
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pbear - Name: pbear
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 65
Re: M-spike the same after stem cell transplant
Pbear,
I assume the 0.43 g/dL M-spike reading was after his induction therapy but before the transplant, right? What was his M-spike before induction (at diagnosis)?
Also, he hasn't even reached the standard 100 day milestone yet if his transplant was in December. So, I wouldn't draw any conclusions just yet since the immune system is still undergoing a lot of reconstitution just now. Also, you might want to read this article:
"Continued Response After Stem Cell Transplantation For Myeloma May Signal Improved Survival," The Myeloma Beacon, Aug 23, 2013
I assume the 0.43 g/dL M-spike reading was after his induction therapy but before the transplant, right? What was his M-spike before induction (at diagnosis)?
Also, he hasn't even reached the standard 100 day milestone yet if his transplant was in December. So, I wouldn't draw any conclusions just yet since the immune system is still undergoing a lot of reconstitution just now. Also, you might want to read this article:
"Continued Response After Stem Cell Transplantation For Myeloma May Signal Improved Survival," The Myeloma Beacon, Aug 23, 2013
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: M-spike the same after stem cell transplant
His M-spike at diagnosis was 3.79 g/dl. We never got to zero before transplant. The lowest we got was 0.32 g/dl after his induction treatments, which included Velcade, Cytoxan, and dex. He also had 21 radiation treatments due to plasmacytoma mass on his rib.
Then we had transplant in December 2015. We are now on Day 75. I appreciate the link to the article.
I hope we continue to see response well after the transplant. I was really hoping that it would be at zero as I feel like we have to go to maintenance soon.
How soon did others start maintenance after transplant?
Then we had transplant in December 2015. We are now on Day 75. I appreciate the link to the article.
I hope we continue to see response well after the transplant. I was really hoping that it would be at zero as I feel like we have to go to maintenance soon.
How soon did others start maintenance after transplant?
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pbear - Name: pbear
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 65
Re: M-spike the same after stem cell transplant
I had the same M-spike immediately pre-transplant as post transplant at 0.5 g/dl. I, too, never reached CR pre-transplant with 0.5 g/dl my best level. About 6 months post transplant, my M-spike began to move lower and by 7 months was at 0 g/dl. All along the way prior to reaching 0, my other blood levels improved.
My oncologist recommended maintenance at 100 days. I was on the borderline about starting maintenance, but finally decided to do it. 5 days after starting 10 mg of Revlimid a day, I had some really bad side effects. My oncologist had me stop taking the Revlimid and told me that when, and if, I relapsed that there would be plenty of other medications to try. This was 6 years ago when maintenance was just beginning to be done.
I relapsed almost 3 years post transplant and went back on Revlimid with no problems. I felt at the time that I started the maintenance that it was too soon for my body to be doing the drugs again.
Don't despair. Your husband's numbers may still drop towards 0 g/dl. All the best to him and to you to have some patience.
Nancy in Phila
My oncologist recommended maintenance at 100 days. I was on the borderline about starting maintenance, but finally decided to do it. 5 days after starting 10 mg of Revlimid a day, I had some really bad side effects. My oncologist had me stop taking the Revlimid and told me that when, and if, I relapsed that there would be plenty of other medications to try. This was 6 years ago when maintenance was just beginning to be done.
I relapsed almost 3 years post transplant and went back on Revlimid with no problems. I felt at the time that I started the maintenance that it was too soon for my body to be doing the drugs again.
Don't despair. Your husband's numbers may still drop towards 0 g/dl. All the best to him and to you to have some patience.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: M-spike the same after stem cell transplant
My husband is about 10 months post transplant. His M-spike wavered between 0.4 and 0.3 pre-transplant. After transplant it was still 0.3. Now it hovers between 0.3 and 0.2 occasionally. His other numbers are all good (well obviously his WBC is affected by Revlimid maintenance) and his kappa / lambda free light chain ratio is normal.
He didn't have any real issues prior to diagnosis - his M-spike was 1.3 at that time. He only started treatment because he had 2 small lesions show up in the PET.
While we had hoped to have his M-spike go down to 0, we are realizing this may not happen. However, doctors have told us (both at Yale and Dana Farber where he did his transplant) that he could remain stable at this level for a very, very long time – particularly because his numbers never were very bad, even at diagnosis. They said from his tests, his myeloma isn't active and given that his M-spike is so low, we should just keep doing what we are doing.
He has blood work now once a month and sees his local doctor at Yale once every 2 months. Obviously, if anything shows up in blood work that is worrisome, we will readdress. Or if he has any bone pains, we'll have additional tests. But, for right now, it's just 10 mg Revlimid 21/27. And he's only supposed to see his doctor at Dana-Farber once or twice a year (our choice).
Our outlook now is - he's feeling well. He tolerates the Revlimid. He has energy and hasn't had any bad colds. He doesn't have bone pain. We took a trip to Rome 7 months post transplant and are planning our next trip.
Do we think about the M-spike and wish he were in CR? Sure. But we don't dwell on it and, for us, that's the best way to enjoy this time we have now!
Your husband's may come down. It may stabilize. As long as he is doing well, don't focus on it and just keep moving forward!
Good luck.
He didn't have any real issues prior to diagnosis - his M-spike was 1.3 at that time. He only started treatment because he had 2 small lesions show up in the PET.
While we had hoped to have his M-spike go down to 0, we are realizing this may not happen. However, doctors have told us (both at Yale and Dana Farber where he did his transplant) that he could remain stable at this level for a very, very long time – particularly because his numbers never were very bad, even at diagnosis. They said from his tests, his myeloma isn't active and given that his M-spike is so low, we should just keep doing what we are doing.
He has blood work now once a month and sees his local doctor at Yale once every 2 months. Obviously, if anything shows up in blood work that is worrisome, we will readdress. Or if he has any bone pains, we'll have additional tests. But, for right now, it's just 10 mg Revlimid 21/27. And he's only supposed to see his doctor at Dana-Farber once or twice a year (our choice).
Our outlook now is - he's feeling well. He tolerates the Revlimid. He has energy and hasn't had any bad colds. He doesn't have bone pain. We took a trip to Rome 7 months post transplant and are planning our next trip.
Do we think about the M-spike and wish he were in CR? Sure. But we don't dwell on it and, for us, that's the best way to enjoy this time we have now!
Your husband's may come down. It may stabilize. As long as he is doing well, don't focus on it and just keep moving forward!
Good luck.
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: M-spike the same after stem cell transplant
My spike has been 0.3 g/dL for three years now since transplant while on Revlimid maintenance.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: M-spike the same after stem cell transplant
Interesting read. My M-spike 100 days post transplant is 0.4 g/dL, which is the same as what I went in with.
My PET scan is free and clear along with my other tests.
Very odd.
My PET scan is free and clear along with my other tests.
Very odd.
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Tigerboy74 - Name: Mike
- Who do you know with myeloma?: Me and few others
- When were you/they diagnosed?: 2007
- Age at diagnosis: 32
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