I was diagnosed with smoldering myeloma 9 mos ago. When my creatinine started to rise to 2.4 and my kappa free light chains went over 1000, my doctor decided to start treatment with Velcade / Cytoxan / dex - 4 weeks on 1 week off. I am not headed for a transplant.
After 4 cycles, my kappa free light chains is 400 and paraprotein [M-spike] is 0.9 g. My creatinine has stabilized at 1.8. My doctor would like my light chains to go closer to zero. The light chains seem to have held at 400.
Is it likely that more cycles will do this, or will I need to be switched to another regimen?
Thanks
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Re: How long for complete response?
Like you my, light chains remained high after 4 cycles. I was told that we keep treating until we get the numbers down to below 100 before a SCT or maintenance. I did another two rounds of treatments and got the numbers down to the 20's. After that, they sent me in for a SCT, which dropped the number down into teens.
After 1.5 years of Revlimid maintenance, my numbers are now single digits. They are slowly going down, but it has taken many months to get to this point.
I doubt they will change your treatment until you go through a couple more rounds and show no improvement. I was told it's not unusual to be treated for 8+ months to get the light chains into an acceptable range.
After 1.5 years of Revlimid maintenance, my numbers are now single digits. They are slowly going down, but it has taken many months to get to this point.
I doubt they will change your treatment until you go through a couple more rounds and show no improvement. I was told it's not unusual to be treated for 8+ months to get the light chains into an acceptable range.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: How long for complete response?
Unfortunately very few patients will achieve a complete response. Don't worry about achieving a CR. Just get your numbers as low as possible. A very good partial response (VGPR) would be nice as well. To be honest, any response a good response.
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JonEman
Re: How long for complete response?
My husband started Velcade / cyclophosphamide / dexamethasone 4 weeks on, I week off, in August and had his paraproteins (M spike) down to "too faint to quantify" by February of the following year, so a total of 6 months. In consultation with our doctor, he continued for the entire 9 courses of the chemo and is now exactly 1 year in remission, which I assume is equal to complete response.
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
Re: How long for complete response?
It will depend on when you were diagnosed. i.e. how long have you had myeloma before it was discovered?
I suspect that whatever the treatment, it clearly takes quicker to zap down the paraproteins and light chains if the myeloma has not taken over rampantly.
I think I was lucky and was easily diagnosed in January 2008 and immediately went on to cyclophosphamide, dexamethasone and thalidomide. 6 x 28 cycles and I was as low as I was ever going to get. They then planned for me to have a stem cell transplant starting in September.
For one reason and another, I was found to have poor kidneys just before starting the stem cell process and so I never had a stem cell transplant, but, whilst I have not had one, I have spoken and heard about many in UK who have had stem cell transplants and I am sure that if you can have one you should have one.
What slightly worries me about USA and all what I read in the Beacon, is that you all seem to have all the best drugs altogether for the first course of treatment. Fine, but what happens when you need a second course of treatment? I had Velcade and dexamethasone. Well you can't because you already had it! Then the third treatment - I am currently on lenalidomide (Revlimid) for me is working brilliantly! But so often I wonder if having all the goodies all at the beginning will mean you will run out of treatments much too quickly. I would expect Velcade to be not so good the next time it is used. Likewise, cyclophosphamide is usually only used once.
Going back to the question, I would expect to be as low as one could expect in paraproteins and light chains (some can get down to zero but others cannot quite get down to zero and it is not a problem)
Good luck - in my myeloma support group I have some now well over 10 years since they were diagnosed and they are happy bunnies!
Brian from UK
I suspect that whatever the treatment, it clearly takes quicker to zap down the paraproteins and light chains if the myeloma has not taken over rampantly.
I think I was lucky and was easily diagnosed in January 2008 and immediately went on to cyclophosphamide, dexamethasone and thalidomide. 6 x 28 cycles and I was as low as I was ever going to get. They then planned for me to have a stem cell transplant starting in September.
For one reason and another, I was found to have poor kidneys just before starting the stem cell process and so I never had a stem cell transplant, but, whilst I have not had one, I have spoken and heard about many in UK who have had stem cell transplants and I am sure that if you can have one you should have one.
What slightly worries me about USA and all what I read in the Beacon, is that you all seem to have all the best drugs altogether for the first course of treatment. Fine, but what happens when you need a second course of treatment? I had Velcade and dexamethasone. Well you can't because you already had it! Then the third treatment - I am currently on lenalidomide (Revlimid) for me is working brilliantly! But so often I wonder if having all the goodies all at the beginning will mean you will run out of treatments much too quickly. I would expect Velcade to be not so good the next time it is used. Likewise, cyclophosphamide is usually only used once.
Going back to the question, I would expect to be as low as one could expect in paraproteins and light chains (some can get down to zero but others cannot quite get down to zero and it is not a problem)
Good luck - in my myeloma support group I have some now well over 10 years since they were diagnosed and they are happy bunnies!
Brian from UK
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BrianO
Re: How long for complete response?
There is no set length of time to reach a stable paraprotein (spike) or a low number. The lowest I achieved before transplant was 0.6 g/dL, but this was stable for a few cycles. I was on Revlimid and dex for induction for 8 cycles.
Brian - As you can see, I started with Revlimid and dex for induction. When I relapsed my oncologist put me back on the same combination because I had responded to it so well during induction. I responded quickly again and my M-spike has been consistently at 0.5-0.7 for the last 14 months. If the regimen begins to not control the myeloma, he has said that he would like to add Velcade to the mix.
I, too, have been surprised at how many people are starting with Cytoxan, Velcade and dex.. Maybe this is because of their genetic mix that puts them in a high risk category?
Nancy in Phila
Brian - As you can see, I started with Revlimid and dex for induction. When I relapsed my oncologist put me back on the same combination because I had responded to it so well during induction. I responded quickly again and my M-spike has been consistently at 0.5-0.7 for the last 14 months. If the regimen begins to not control the myeloma, he has said that he would like to add Velcade to the mix.
I, too, have been surprised at how many people are starting with Cytoxan, Velcade and dex.. Maybe this is because of their genetic mix that puts them in a high risk category?
Nancy in Phila
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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
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