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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Myeloma relapse signs?

by rav4fan on Tue Sep 17, 2013 5:48 pm

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.

rav4fan
Who do you know with myeloma?: Husband
When were you/they diagnosed?: 1/1/2012
Age at diagnosis: 56

Re: Myeloma relapse signs?

by Carol Y on Thu Sep 19, 2013 9:32 am

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

Carol Y

Re: Myeloma relapse signs?

by darnold on Sun Sep 22, 2013 11:24 am

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

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?

by PeterSydney on Mon Sep 23, 2013 2:19 am

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

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?

by darnold on Tue Sep 24, 2013 4:38 pm

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.

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?

by Dalton on Thu Mar 27, 2014 9:44 pm

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!!

Dalton

Re: Myeloma relapse signs?

by nel on Mon May 05, 2014 1:10 am

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.

nel

Re: Myeloma relapse signs?

by Marvin on Mon May 05, 2014 5:59 pm

I'll pray for him and you, God bless.

Marvin

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