I received a SCT in Feb. of 2012. At my 100 day checkup my bone marrow biopsy showed 20% still infected. FLC's were also trending up to 810 mg per DL. My Dr. says to not be alarmed but, I tend to think the SCT was a failure and we are back to square one. Currently I am on a subcutaneous injection of Velcade every 2 weeks. I am waiting on my first lab results right now and hope to have them Monday. This seems more like maintenance therapy to me. My whites and reds are extremely low also which leads to a lot of fatigue issues.
My question is. Should I seek a 2nd opinion on this with all the dual and three drug treatments out there now or wait this out ? I want to be aggressive as possible. Would a dual treatment option help me feel less fatigued with more energy?
Any help or suggestions are greatly appreciated.
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Re: Question about success of SCT
Hi Runner,
Sorry to hear your SCT had minimal success so far.
I was told that the 100 day mark was where you evaluated the effect of the transplant. If multiple myeloma numbers were trending downwards at 100 days, the chemo during transplant might still be doing some work and evaluation at later date would be warranted. But if they are trending upwards at 100 days, I'd assume the SCT didn't do much good.
That might be why you are on Velcade now, and sometimes it takes time to start showing effect.
I have a friend who had no reduction in numbers from SCT and so they put him on a once a week Velcade program. Every month his numbers get better and better, and he's been doing the Velcade for over a year.
Also, prior to SCT, Velcade was no longer helping him. It seems the SCT resensitized his system to Velcade.
Sorry to hear your SCT had minimal success so far.
I was told that the 100 day mark was where you evaluated the effect of the transplant. If multiple myeloma numbers were trending downwards at 100 days, the chemo during transplant might still be doing some work and evaluation at later date would be warranted. But if they are trending upwards at 100 days, I'd assume the SCT didn't do much good.
That might be why you are on Velcade now, and sometimes it takes time to start showing effect.
I have a friend who had no reduction in numbers from SCT and so they put him on a once a week Velcade program. Every month his numbers get better and better, and he's been doing the Velcade for over a year.
Also, prior to SCT, Velcade was no longer helping him. It seems the SCT resensitized his system to Velcade.
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Stann
Re: Question about success of SCT
High dose melphalan and ASCT frequently takes time to work. I know that it may seem odd concidering you were given high-doses of chemotherapy (melphalan) and the cells should all be wiped out right away. In some cases yes, but it some no. In individuals it may take months (6-12) until maximal response- and this was without the addition of Revlimid or Bortezomib. Now you are on a "maintenance" dosing of Velcade. I would be patient and continue to evaluate.
Regarding a second opinion- anyone who has significant questions regarding therapy should seek a second opinion. Please ensure you are seeking it at a myeloma center of excellence.
Was the 20% an improvement from your pre-marrow numbers? How are that rest of your numbers? High-dose Melphalan & ACST are a consolidation of your initial therapy you should see an improvement. And even though you may read about VGPR, CR, sCR. The most important goal of therapy is to maintain your disease at a level where it is not causing you harm. I can only imagine how frustrating it is, but please continue to have patience and I would wait a bit before calling this a failure- based on the facts before me.
Good luck.
Regarding a second opinion- anyone who has significant questions regarding therapy should seek a second opinion. Please ensure you are seeking it at a myeloma center of excellence.
Was the 20% an improvement from your pre-marrow numbers? How are that rest of your numbers? High-dose Melphalan & ACST are a consolidation of your initial therapy you should see an improvement. And even though you may read about VGPR, CR, sCR. The most important goal of therapy is to maintain your disease at a level where it is not causing you harm. I can only imagine how frustrating it is, but please continue to have patience and I would wait a bit before calling this a failure- based on the facts before me.
Good luck.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Question about success of SCT
Thank you both for the help. To answer a couple questions. My pre transplant level was 45% bone marrow infected. So , yes it is an improvement. I get my most current lab results tomorrow 7/2/12. I am really curious to see my LGG and Lga #s and also FLC's after a couple doses of Velcade. My whites are hovering around 1.7 and Reds at 3.8. Platelets are 114 and the absolute Nuetrophils stay around .75. These numbers have remained steady Pre transplant and post transplant. I expected to see lower counts due to the Velcade but there is not much difference either way. Needless to say with the low counts Fatigue is a big issue right now.
Also in my previous treatment I could not tolerate Revlimid in the 25 mg dosage.
I have to remind myself " Slow and Steady wins the race "
I should also say I am at what is considered one of the best multiple myeloma research centers in the Midwest.
Also in my previous treatment I could not tolerate Revlimid in the 25 mg dosage.
I have to remind myself " Slow and Steady wins the race "
I should also say I am at what is considered one of the best multiple myeloma research centers in the Midwest.
Re: Question about success of SCT
Hi JUst wanted to chime in, that my 3 month mark I still had an m-spike over 5 (or .5 if you are in US), but at just over 6 months it was zero! and then a few months later Freelite test was also normal! So I guess I am one of those who takes time for the Malphalan to work.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Question about success of SCT
I, also, was a slow responder. It took 7 months for my m-spike to drop from pre-ASCT level. Then the following month it was gone. It took another couple of months for all of my blood work to reach normal ranges. I started maintenance with Revlimid, but had a bad reaction to it and it was stopped after 5 days. So, I've been drug free other than Zometa since then.
Unfortunately my numbers are trending up and may start treatment again soon.
Take a deep breath and "know" that things will improve. 100 days isn't necessarily the magic number for everyone.
Unfortunately my numbers are trending up and may start treatment again soon.
Take a deep breath and "know" that things will improve. 100 days isn't necessarily the magic number for everyone.
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Question about success of SCT
I just got more results last week.
Igc was at 624
Iga was at. 20
Kappa FLC was 460 .84
The FLC was a small drop. Hopefully the Velcade will continue to do its work.
Igc was at 624
Iga was at. 20
Kappa FLC was 460 .84
The FLC was a small drop. Hopefully the Velcade will continue to do its work.
Re: Question about success of SCT
My M spike dropped for about 4 months post SCT. It has stabilized at about 1.3 since Jan. on Revlimid. It is now at 1.3CDN/.13US and my doctor still expects a decline over time but the charted line is flat with no upward trending.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
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