My husband was diagnosed on New Year's Day 2012. 1 Cycle of D-PACE and 3 cycles of Velcade - dexamethasone later, he underwent tandem auto stem cell transplants. 100 days later, he was in complete remission. He then started a Revlimid-dexamethasone maintenance regimen. In June 2013, during the check up for the one year anniversary of his first SCT, his M spike showed up at 2. He is now classified as being relapsed or refractory.
The real kicker here is that he had NO symptoms. He felt good; was riding a bicycle 20-30 miles per week and was seriously pursuing full time work. He never had an out of range CBC number. No backaches, no kidney issues, nothing. We were stunned and felt sure there was some mistake. After another round of tests and a consult with another myeloma expert, we had to accept it. The cytogenetics are telling us it's high risk and a poor prognosis.
At this time, he is starting his third round of Kyprolis (carfilzomib) - dexamethasone with only a slight decrease in the M spike. However, he feels pretty good. He's had none of the traditional side effects from the Kyprolis and his blood work is "pristine" (as his doc puts it). So, we're hopeful that even if the we never see "remission" on his chart again; that we can find some kind of "manageable" level of disease and treatment.
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rav4fan - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 1/1/2012
- Age at diagnosis: 56
Re: Myeloma relapse signs?
Sorry to say, mine came back with a roar with normal labs. I had 1 year of heaven on earth with just maintenance, felt good, but had a sore spot in my jaw I assumed was recurrent ONJ. Turned out it was a plasmacytoma -- one of multiple per the PET-CT scan.
Now back on active chemo, can't follow with blood work since I am now a non-secretor. I have to have a PET-CT every 3-6 months. Wish me luck , I'm going for the 1st one early Oct.
God Bless you all, Carol
Now back on active chemo, can't follow with blood work since I am now a non-secretor. I have to have a PET-CT every 3-6 months. Wish me luck , I'm going for the 1st one early Oct.
God Bless you all, Carol
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Carol Y
Re: Myeloma relapse signs?
After successful treatment with Thalomid/Dex, followed by a SCT, I was in complete remission in 2010 and was taking Revlimid as a maintenance drug. I had a hard time with it, so my blood counts always looked crappy, but I had no M-spike, so I was happy.
One of the side effects of Revlimid for me was a really itchy scalp the first couple of days of each cycle, and it usually took me three-four weeks for my counts to climb high enough to start a Revlimid cycle again. So this is how I knew that I wasn't responding to Revlimid any more: in June of 2012, I had an M-spike again -- low, but nonetheless, there it was. Last fall, the itching stopped, and my blood counts rose after only two weeks. And the M-spike was creeping up incrementally each quarter. So, my oncologist did a bone marrow biopsy, and sure enough, I have 1% myeloma cells again.
I've now been off of Revlimid since January and my blood counts have stabilized. My new "normal" is still borderline low red and white counts. My M-spike is still there and low -- low enough that I'm in the MGUS phase. And I hope to stay that way for a very long time. And if not, on to the next drug!
My point is that, while it is disappointing, a change in blood counts or light chains or M-spike is not the end of the world. We are all so lucky that there are multiple drugs to try and sooo many lines of research underway.
Dana
One of the side effects of Revlimid for me was a really itchy scalp the first couple of days of each cycle, and it usually took me three-four weeks for my counts to climb high enough to start a Revlimid cycle again. So this is how I knew that I wasn't responding to Revlimid any more: in June of 2012, I had an M-spike again -- low, but nonetheless, there it was. Last fall, the itching stopped, and my blood counts rose after only two weeks. And the M-spike was creeping up incrementally each quarter. So, my oncologist did a bone marrow biopsy, and sure enough, I have 1% myeloma cells again.
I've now been off of Revlimid since January and my blood counts have stabilized. My new "normal" is still borderline low red and white counts. My M-spike is still there and low -- low enough that I'm in the MGUS phase. And I hope to stay that way for a very long time. And if not, on to the next drug!
My point is that, while it is disappointing, a change in blood counts or light chains or M-spike is not the end of the world. We are all so lucky that there are multiple drugs to try and sooo many lines of research underway.
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Myeloma relapse signs?
My myeloma looks like it is coming back as my paraprotein is showing again whereas since my stem cell transplant it has been undetectable. I had a bone marrow biopsy today which should confirm how active it now is.
I have had no symptoms at all of the resurgence - just the blood results. Since my transplant 18 months ago I've been fit and healthy (I'm now 47) and don't feel any worse now than I have been the last year or so.
Peter
I have had no symptoms at all of the resurgence - just the blood results. Since my transplant 18 months ago I've been fit and healthy (I'm now 47) and don't feel any worse now than I have been the last year or so.
Peter
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PeterSydney - Name: Peter Mansfield
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2011
- Age at diagnosis: 45
Re: Myeloma relapse signs?
Good luck, Peter.
My experience is that while the cancer cells are back, they are at such a low level (1%), and my M-spike is so low (0.33) that I don't have active cancer. You might not either.
My experience is that while the cancer cells are back, they are at such a low level (1%), and my M-spike is so low (0.33) that I don't have active cancer. You might not either.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Myeloma relapse signs?
My husband was diagnosed in May 2011 at age 47 and had back fractures and pain and low hemoglobin. He had an autologous stem cell transplant in October 2011 and went on Velcade chemo 4 weeks on and 2 weeks off.
Then in December 2012 his cancer returned with an M spike of 4. Then he started on Revlimid-dexamethasone and, within 6 weeks, his M spike was 0 and stayed that away for a year.
He now has low back pain without any injury and has an s2 fracture and had to have another biopsy, which we get results tomorrow. So we assume it will mean having to go on another chemo. Has leg cramps too and he tires easily and has no energy some days. Hoping for good news but are concerned.
God bless you all with this disease and the caregivers who have to see our spouses fight their disease!!
Then in December 2012 his cancer returned with an M spike of 4. Then he started on Revlimid-dexamethasone and, within 6 weeks, his M spike was 0 and stayed that away for a year.
He now has low back pain without any injury and has an s2 fracture and had to have another biopsy, which we get results tomorrow. So we assume it will mean having to go on another chemo. Has leg cramps too and he tires easily and has no energy some days. Hoping for good news but are concerned.
God bless you all with this disease and the caregivers who have to see our spouses fight their disease!!
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Dalton
Re: Myeloma relapse signs?
My husband went to the doctor Friday and his numbers are 26. It was 4 three months ago. He had a stem cell transplant two years ago. I am so worried. He will see the doctor again Tuesday to see what we can do. Pray for him. He is 63.
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nel
Re: Myeloma relapse signs?
Dalton wrote:
Thank you for your kind words . I went through a stem cell transplant on June 29th 2016 . After waiting the usual 100 days, I was told in September that I was in remission and obviously delighted.
On April 2017 I was told that the bloods I had taken at my Zometa appointment showed that
my paraprotien was 2, but that the bloods I had taken almost two weeks later showed it had went down to 1, so again I was optimistic ... until I went back last week when it showed it was sitting at 3. I asked if this meant I was no longer in remission ,and I was told " yes" . I won't know what's going to happen regarding treatment until next month, but fingers crossed it works.
My husband is my caregiver, like yourself, and on behalf of all myeloma sufferers I want to thank my wonderful husband and all myeloma caregivers. We couldn't do it without you.
God bless you all with this disease and the caregivers who have to see our spouses fight their disease!
Thank you for your kind words . I went through a stem cell transplant on June 29th 2016 . After waiting the usual 100 days, I was told in September that I was in remission and obviously delighted.
On April 2017 I was told that the bloods I had taken at my Zometa appointment showed that
my paraprotien was 2, but that the bloods I had taken almost two weeks later showed it had went down to 1, so again I was optimistic ... until I went back last week when it showed it was sitting at 3. I asked if this meant I was no longer in remission ,and I was told " yes" . I won't know what's going to happen regarding treatment until next month, but fingers crossed it works.My husband is my caregiver, like yourself, and on behalf of all myeloma sufferers I want to thank my wonderful husband and all myeloma caregivers. We couldn't do it without you.
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Maggie
Re: Myeloma relapse signs?
Dear Maggie:
You wrote:
Reading 2,1, and 3 you are mentioning is for what? Is that M-Spike reading and, if so, in what units?
I have not gone for a stem cell transplant yet, although I had my stem cell collection done two years ago.
I wish you the best. God bless.
You wrote:
On April 2017 I was told that the bloods I had taken at my Zometa appointment showed that
Reading 2,1, and 3 you are mentioning is for what? Is that M-Spike reading and, if so, in what units?
I have not gone for a stem cell transplant yet, although I had my stem cell collection done two years ago.
I wish you the best. God bless.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
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