[AliceNorth]

Is length of remission an indication of risk?

by AliceNorth on Sun Aug 18, 2013 5:06 pm

Hi

I am wondering if the length of remission is any indication of my myeloma risk in the absence of cytogenetic testing. I was diagnosed in Feb/March2011 with IGA lambda myeloma. My lambda light chain was 152 mg/l. My bone marrow biopsy showed 20-30% plasma cells. At the same time, I was also diagnosed with amyloidosis, affecting my kidneys predominantly, but also liver and spleen.

I immediately started on 6 months CTD and was fortunate to achieve a complete response at the end of the second cycle. I had my stem cells harvested in June 2012 and put on ice. I did not want chemo for the harvest and relied on gcsf injections. Although my numbers looked great, I harvested only 0.8 million stream cells. I was given plexiflor after the first night and then collected 1.4 million the following day. I therefore have enough for one transplant.

Since August 2011, I have not been on any treatment, except monthly zometa, although I have no bone issues. My kidney function is normal, although I do have proteinuria due to the amyloidosis. However this has I improved from nephrotic range that I initially suffered from.

I was pressured to have a SCT early on, but I have resisted, preferring to hold back on it. My initial bone marrow sample was not tested for cytogenetics. My second bone marrow sample was to be tested for abnormalities, but the sample was normal and therefore a test for cytogenetics was not possible and as a result, any chromosomal abnormalities are still unknown. I was told 18 months ago that my myeloma clone would reappear 'at any time now'. My latest light chains are still in normal range and ratio.

Based on the fact that I have been in remission now for around 28 months without a SCT, do you think it less likely that I have high risk disease, or can high risk disease still have such a response to frontline treatment? I had read somewhere that poor stem cell harvesting was a prognostic factor and this worries me. My bloods are monitored monthly and every month I wonder if this is the month I will relapse. My amyloidosis specialist told me that the longest remission without SCT any of her patients with both myeloma and amyloidosis has attained was 7 years. The average was 2-5 years. When I relayed this to my myeloma specialist he was pretty scathing and declared those figures as 'extremely optimistic'. I am 45 years old and live in the UK.

[dnalex]

Re: Is length of remission an indication of risk?

by dnalex on Sun Aug 18, 2013 7:23 pm

Hi Alice,

I cannot offer any sort of medical advice, because I am not qualified to do so.

Having said that, there are a few things I can say from a personal, lay person perspective. If you are doing well, still in remission with improving stats, then it doesn't seem to me that it would make sense to begin any sort of treatment, much less a stem cell transplant. It also does appear that your myeloma is not a rapidly progressing kind. While it may suggest that yours a lower risk type, that's something that can on be done with cytogenetics. In the mean time, you most definitely can say that the treatment worked well for you. I hope that you will continue to be in remission for many many years to come.

Alex

[AliceNorth]

Re: Is length of remission an indication of risk?

by AliceNorth on Thu Aug 29, 2013 10:24 am

Hi Alex

Thanks for the kind words. I certainly don't want to rush into any more treatment just yet! I feel very fortunate in that I had a relatively easy ride on treatment and achieved great results. I know that others have a much harder struggle. However, it doesn't lessen the fact that every month, when I have my bloods tested, I am a nervous wreck wondering if this is the month that I am no longer in remission.

Best wishes to you.

Alice

[dnalex]

Re: Is length of remission an indication of risk?

by dnalex on Thu Aug 29, 2013 2:48 pm

Hi Alice,

It's the same rollercoaster ride with us here.

Best wishes to you as well.

Alex

[Stan W.]

Re: Is length of remission an indication of risk?

by Stan W. on Sun Sep 01, 2013 1:18 pm

I'm IgG/Kappa. After my first 4 rounds of Velcade (1x/wk.) 15mg Revlimid and 30 mg. of Prednisone 3x/wk, I'm in SCR. It'll be 2 months without chemo (had 6 cycles) when I harvest my stem cells. My labs last week show no M-Spike and, the FLC is still within normal.
I was looking for info on how long someone remains stable without a SCT. Being I'm in the same place as someone having a transplant, why would I want to go through it?
Alice, I'm hoping we can both continue to remain stable without a transplant.

[Rebecca Craze]

Re: Is length of remission an indication of risk?

by Rebecca Craze on Fri Nov 18, 2016 12:53 pm

My niece was diagnosed with the last stages of multiple myeloma one day and her kidneys shut down the next from amyloidosis. She went through the stem cell transplant, pretty intense. She was in remission from the myeloma after treatment but she was on kidney dialysis til she passed 13 years later.

7 years after her diagnosis I was diagnosed also but I found mine earlier. I did all the normal testings and took the wait and see approach for several years before I started treatment of Revlimid for 5 months. My levels went down immediately. I have been in remission now for 6 years. My levels are creeping back up slowly.

I know how you feel. Each time you go in for a checkup, you always wonder is this the time it will come back full force.

Wishing you well for a long time.

[Dean UK]

Re: Is length of remission an indication of risk?

by Dean UK on Fri Nov 18, 2016 2:05 pm

Hi Alice

You ask a good question regarding your risk factor.

I'm in the same situation. I have the same type of myeloma as you have. My myeloma specialist said with IgA lambda based on his experience has a 50% chance of being high risk . When I have put this to my team of doctors in London, they disagree.

So who knows? Based on your good remission, I would say your myeloma is a slow one as the average stem cell transplant in the UK is 18 months but their thinking is may be you would get even a longer remission from a stem cell transplant . But I'm not a doctor and sometimes they don't know so you have to go with what's best for you. Everyone is different with this disease that's for sure. Shame that us both didn't have a FISH test done, our decision making would be so much easier.

I was diagnosed this April; up to my last blood test (yes, I stress getting the result), I was in complete remission. Having a stem cell transplant soon when I get a bed.

All the best, Alice,

Dean

[dianaiad]

Re: Is length of remission an indication of risk?

by dianaiad on Wed Nov 23, 2016 9:37 pm

I don't actually know.

I am considered to be 'high risk,' (that P-17 deletion thing) I had a stem cell transplant, and am on Revlimid for maintenance. I just passed my three year post transplant anniversary, and am still in complete remission.

At least, that's what I'm told by doctors, who do a happy dance whenever I see them. True, my light chain levels are a wee bit wonky, but still well within the 'normal' range, and my protein levels are also a little, er, wonky, but again, still VERY much in the normal range.

I'm doing fine and my docs don't see any reason that I won't continue to be fine for quite some time to come.

I'll take that.

The thing is, multiple myeloma is a very individual disease. Attempting to predict the course of it for any one of us is VERY much like trying to nail warm jello to a wall.

Right now, for instance, the multiple myeloma isn't giving me ANY trouble. Wish I could say the same for the Revlimid, but, hey, I'll put up with quite a bit to keep multiple myeloma from giving me trouble.