[Ellen Harris]

Pre-ASCT test results - am I in remission?

by Ellen Harris on Fri Oct 03, 2014 9:24 am

Good morning all,

I am getting ready for a stem cell transplant (SCT) Monday. Wish me luck! I don't know how much I will be able to post so I am not promising anything. I anticipate being a total wuss!

I did want to ask a question, however. It probably doesn't even really matter but I like to be informed.

My bone marrow biopsy from 2 weeks ago showed no myeloma cells, normal. I have IgA kappa light chain so I never had much of an M-spike. At diagnosis, my kappa light chains were 12,000 and my M-spike was 0.4 g/dL. I have had 7 1/2 rounds of RVD (Revlimid, Velcade, dexamethasone). My light chains are normal or within a few points of that (in the 16 to 26 range). My PET/CT was normal last week.

However, after disappearing and then being faint in the last month or so, I am showing the IgA monoclonal band on immunofixation. No Bence Jones in urine. I am slightly anemic. My creatinine is 1.3 from light chain damage. I am feeling well at this point, no symptoms.

In terms of my status, am I in remission? My transplant doc says I am, however I am concerned about the IgA band reappearing. Is this likely to disappear from the SCT? Does it mean that I am more likely to relapse?

I also have iq21 amplification but no other abnormalities on FISH. I will be on maintenance meds after SCT regardless.

Thanks all. I don't post often but I have found the Beacon to be a wonderful resource. Some of you regulars are unbelievably knowledgeable. Utmost respect for you.

[Christa's Mom]

Re: Pre-ASCT test results - am I in remission?

by Christa's Mom on Fri Oct 03, 2014 3:37 pm

Hi Ellen,

Best of luck to you with your SCT! When EJ had his several years ago, we found the worrying worse than the actual process (almost!). Hopefully you will sail through it.

I did notice that in the time between the end of his induction therapy and when he went for his SCT, EJ's numbers rose slightly. I was never sure if it was a true progression or just the result of having his tests done at different labs.

However, he did very well with his SCT, and although he never really reached CR, his M-spike has held pretty steady at 0.1 - 0.3 g/dL for more than three years.

Good luck!

Lyn

[antelope1225]

Re: Pre-ASCT test results - am I in remission?

by antelope1225 on Sat Oct 04, 2014 5:06 pm

Hi Ellen.

I do wish you luck! I hope your SCT goes smoothly and I will be watching for your posts.

It seems you are trying to predict whether you will relapse after SCT? I do not know if doctors can predict how someone will respond to an SCT, though it sounds like your multiple myeloma responded quickly and completely to your initial treatment.

My bone marrow biopsy never showed anything and I was like you in the high kappa free light chains, though yours were higher than mine.

I consider my kappa free light chains as my "cancer marker". My kappa free light chains began to "creep up" almost immediately after my SCT but then I started eating a "diabetic diet" and they came down and were in normal range the last 2 months- and that was 1 1/2 years after my SCT.

[Ellen Harris]

Re: Pre-ASCT test results - am I in remission?

by Ellen Harris on Sat Oct 04, 2014 9:27 pm

Thanks Kathy! I have been following your thread with the diabetic diet and thought it was interesting. When i was younger i used to try losing weight with that technique. Always missed the carbs and it didn't do my digestion any favors. However, if it held the multiple myeloma at bay, I would certainly be more than willing. Right now, I have been trying to maintain my weight and not lose any more. We will see where I am after the SCT.

Thx for the response!

[antelope1225]

Re: Pre-ASCT test results - am I in remission?

by antelope1225 on Mon Oct 06, 2014 9:21 am

Hi Ellen.

Now is not a good time for you to change your diet - you will have enough on your schedule with the SCT.

I tried low carb to lose weight years ago and I never could stick with it either. But now I have blood tests every month - so I would just try for one month and I was so surprised at how my kappa free light chains went down each month. Then I started using a blood glucose meter and testing my blood 6-8x per day and seeing how much my diet impacted my blood. It is completely different when I can see results in blood tests and my goal is to live a few more years rather than lose a few more pounds.