My wife is 58 and was diagnosed in March 2013 after months of worsening back pain. Since then she has been through four months of CTD [cyclophosphamide (Cytoxan) + thalidomide + dexamethasone] and then an ASCT [autologous stem cell transplant] in October. The 100 days were recently up and a bone marrow biopsy carried out. Results were in last week. Paraproteins at 12% and 'partial remission' declared.
My wife is bowled over by this as the reward for the melphalan and ASCT was supposed to be 'a longer and deeper remission'. Now we are left completely at sea with regard to what this means, and indeed how to interpret 'partial remission', when it seems in practice as if no improvement has been made from before.
Worse still, there seems to be no clear-cut guidance in the UK about what happens next - do nothing or do something? Wait till first relapse (traditional approach) or try to get to CR now with Velcade. The problem is a lack of empirical evidence-based data, but that is of little consolation when you are at a road junction and don't know which way to go.
So in my wife's case 'partial remission' only means more anxiety and uncertainty.
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Re: Partial remission after transplant - not sure what next
Hi David, I am sorry to hear that your wife's treatments didn't get her into a remission yet. When you mention going on to Velcade, is Revlimid also an option where you are?
I was able to go onto a year of Revlimid here in Canada after my ASCT. (It literally had just been approved here at that time.) That helped to put me into a CR, but I also understand that sometimes one's myeloma proteins will decrease over time after an ASCT even if one doesn't do further 'consolidation' treatments. I am grateful that I got the Revlimid treatments though.
Hope that helps!
I was able to go onto a year of Revlimid here in Canada after my ASCT. (It literally had just been approved here at that time.) That helped to put me into a CR, but I also understand that sometimes one's myeloma proteins will decrease over time after an ASCT even if one doesn't do further 'consolidation' treatments. I am grateful that I got the Revlimid treatments though.
Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Partial remission after transplant - not sure what next
I know how frustrating and depressing it can be to not have reached complete response by 100 days post transplant. It took me 7-8 months post transplant for my m-spike to begin to drop from pre-transplant levels and then reach complete response. I was started on maintenance of Revlimid 10 mg daily at day 100, but it was stopped 5 days later because of a bad reaction to the Revlimid. I went 35 months without medications post transplant until I relapsed and restarted treatment with Revlimid and Dex.
Have you asked your wife's oncologist about possibly starting a maintenance schedule of treatment? I don't know what the guidelines are in the UK.
Nancy in Phila
Have you asked your wife's oncologist about possibly starting a maintenance schedule of treatment? I don't know what the guidelines are in the UK.
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
Re: Partial remission after transplant - not sure what next
Hello David,
As is true for all myeloma therapies, stem cell transplantation does not always deliver a complete remission. In this situation several options should be considered. All options of course are dependent on the health care policies of the country that one lives in. The new drugs like Revlimid and Velcade are very expensive.
It will also be valuable to know the amount of myeloma that remains in your wife's bone marrow.
Potential options:
A. Further treatment with chemotherapy for 4-6 months to "consolidate" the transplant and deepen the response. More CTD would be reasonable. Or a Velcade-based consolidation with CyBorD would be good as well.
B. Switch to maintenance therapy with thalidomide or dexamethsone. This could also deepen the response.
C. Simply observe your wife. No further therapy until the disease requires treatment again. That would mean her m-spike climbs significantly and/or she develops "CRAB" criteria.
In the UK Revlimid and Velcade may not be available and this of course will limit options.
It is true that achieving a complete response is the general goal of treatment in myeloma. Having said that many patients do well for many years without getting to a CR. I would strongly encourage you to seek out research studies for your wife in the UK as this may give her access to the newer drugs.
All my best to you and your wife.
As is true for all myeloma therapies, stem cell transplantation does not always deliver a complete remission. In this situation several options should be considered. All options of course are dependent on the health care policies of the country that one lives in. The new drugs like Revlimid and Velcade are very expensive.
It will also be valuable to know the amount of myeloma that remains in your wife's bone marrow.
Potential options:
A. Further treatment with chemotherapy for 4-6 months to "consolidate" the transplant and deepen the response. More CTD would be reasonable. Or a Velcade-based consolidation with CyBorD would be good as well.
B. Switch to maintenance therapy with thalidomide or dexamethsone. This could also deepen the response.
C. Simply observe your wife. No further therapy until the disease requires treatment again. That would mean her m-spike climbs significantly and/or she develops "CRAB" criteria.
In the UK Revlimid and Velcade may not be available and this of course will limit options.
It is true that achieving a complete response is the general goal of treatment in myeloma. Having said that many patients do well for many years without getting to a CR. I would strongly encourage you to seek out research studies for your wife in the UK as this may give her access to the newer drugs.
All my best to you and your wife.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Partial remission after transplant - not sure what next
Hi David
I'm very new to this forum, however I can appreciate what your wife felt. I was diagnosed (age 56) in June 2013 and have gone through induction therapy, stem cell transplant and I'm 8 weeks post transplant. I received my results this week and I was PR. What I needed to do was to look at the big picture. My light chains are within the normal range, my paraprotein (urine test) is at 7 and results from bone marrow biopsy was <10% Myeloma Cells. Due to this factor of <10% I'm deemed PR.
In Australia I'm involved in a trial called a maintenance phase that consists of thalidomide & prednisolone. The aim is to put the multiple myeloma into a deeper response, or stabilise the PR.
I must admit I did feel a little down for a couple of days when I first received my news, however I then re-grouped as there are so many different options available, and I also need to give my body time to heal and for the transplant to take.
I would suggest you continue to research all options, ask lots of questions, and see if there are any trial in your country for the stage your wife is at.
Warmest Regards
Bev
I'm very new to this forum, however I can appreciate what your wife felt. I was diagnosed (age 56) in June 2013 and have gone through induction therapy, stem cell transplant and I'm 8 weeks post transplant. I received my results this week and I was PR. What I needed to do was to look at the big picture. My light chains are within the normal range, my paraprotein (urine test) is at 7 and results from bone marrow biopsy was <10% Myeloma Cells. Due to this factor of <10% I'm deemed PR.
In Australia I'm involved in a trial called a maintenance phase that consists of thalidomide & prednisolone. The aim is to put the multiple myeloma into a deeper response, or stabilise the PR.
I must admit I did feel a little down for a couple of days when I first received my news, however I then re-grouped as there are so many different options available, and I also need to give my body time to heal and for the transplant to take.
I would suggest you continue to research all options, ask lots of questions, and see if there are any trial in your country for the stage your wife is at.
Warmest Regards
Bev
Re: Partial remission after transplant - not sure what next
Hi David,
100 days after his SCT, EJ's m-spike was at .4, and it came down to .1 over the next few months. He never did achieve a complete response. He has low risk disease, and elected not to be on any type of maintenance. He has been stable for 31 months now.
We suspect that EJ had smoldering myeloma for a long time before he was diagnosed. I understand that it is hard for many patients who had smoldering myeloma to achieve a CR, but they do very well nonetheless.
Hope that helps -- Good luck,
Lyn
100 days after his SCT, EJ's m-spike was at .4, and it came down to .1 over the next few months. He never did achieve a complete response. He has low risk disease, and elected not to be on any type of maintenance. He has been stable for 31 months now.
We suspect that EJ had smoldering myeloma for a long time before he was diagnosed. I understand that it is hard for many patients who had smoldering myeloma to achieve a CR, but they do very well nonetheless.
Hope that helps -- Good luck,
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
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