[LadyLib]

Had SCT, achieved remission for a while or still enjoying?

by LadyLib on Wed Dec 11, 2013 1:45 am

Looking for those that have had SCT and trying to see if they achieved remission/VGPR or more normal numbers. If so, how long have you been enjoying the remission life? If not, how long did it take for you to shift from a remission/VPGR state?

[Maria]

Re: Had SCT, achieved remission for a while or still enjoyin

by Maria on Thu Dec 12, 2013 1:09 am

I was in complete remission according to my onc for 18 months, then bam hit so fast, starting a clinical trial Monday

[Wayne K]

Re: Had SCT, achieved remission for a while or still enjoyin

by Wayne K on Thu Dec 12, 2013 12:07 pm

I was diagnosed in March '09 and went through a Velcade/prednisone regimen which brought my numbers back to some semblance of normal. I then had a SCT in April of '10. My lambdas have started to rise and they can detect an M spike now.
I would say I've had about 36 months of a normal life to date. That's deducting the recovery from the transplant that wasn't easy, likely due mostly to my age.

[michelpion]

Re: Had SCT, achieved remission for a while or still enjoyin

by michelpion on Thu Dec 12, 2013 2:06 pm

I've had my SCT exactly two years ago this month. I was lucky enough to achieve a complete remission that is still holding for now. I'm having follow-ups with my oncologist every three months and so far so good. I'm completely off any meds having just stopped monthly Aredia infusion two months ago. I consider myself lucky.

[rav4fan]

Re: Had SCT, achieved remission for a while or still enjoyin

by rav4fan on Thu Dec 12, 2013 6:44 pm

My husband underwent a tandem transplant in June and September of 2012. In March of 2013, we were told we had a complete response. At our June appointment, we were told that the myeloma was back with a vengeance. He's currently on Pomalyst, Kyprolis and Dex combo (cocktail is far too casual a word for it). This is definitely his lowest point physically. Anticipating a progress report next week.

[NStewart]

Re: Had SCT, achieved remission for a while or still enjoyin

by NStewart on Fri Dec 13, 2013 1:57 pm

I had and ASCT in Jan 2010 and reached CR in July 2010. I started to have an m-spike under 1.0 in May 2011. It gradually increased over the next 15 months. My oncologist wanted me to restart treatment at that time, but I was scheduled for surgery the next month and refused. I finally restarted therapy in Dec 2012 on Rev 15 mg and Dex 20 mg. I responded quickly and continue on that regimen. I've been getting Zometa infusions every 6 weeks since May 2010 because of continued bone problems. I wasn't on any maintenance.

Nancy in Phila

[darnold]

Re: Had SCT, achieved remission for a while or still enjoyin

by darnold on Fri Dec 20, 2013 7:21 pm

Hi LadyLib. How is your husband doing?

I had a SCT in January of 2010 and achieved complete remission. I then went on a low (10 mg) dose of Revlimid as a maintenance drug and continued to receive Zometa quarterly. I had a really hard time with Revlimid. By June of 2012, I had a very small M-spike again, but a bone marrow biopsy showed only 1% or so cancer cells. By the fall of 2012, my response to Revlimid was fading quickly, and I've been off of medication since this past January. My M-spike is continuing to increase v-e-r-y slowly and at this point, isn't even in the MGUS levels. i know that, eventually, I will need to take medication again, but I'm hoping that is at least a year away.

Please remember that each myeloma patient is different in terms of where they started at time of diagnosis, how they responded to treatment, and what happened after they reach CR or a very good response. I hope this helps.

Dana