Hello,
I'm Angela, 38 years old from the Netherlands (Holland). Last year I was diagnosed with multiple myeloma, IgG kappa, M-spike of 65 g/l (6.5 g/dl).
I got treatment with bortezomib (Velcade), cyclophosphamide (Endoxan, Cytoxan), and dexamethasone (VCD, CyBorD), followed by a stem cell transplant in April 2016.
After the VCD, the M-spike wasn't measurable in my blood anymore. Now, only seven months after my stem cell transplant, the M-spike is 10 g/l (1 g/dL). At the end of October it wasn't measurable, and half way through November is was 10 g/l.
I don't understand how it's possible.
Last week I got a CT and a bone marrow biopsy. This week I will get the results.
What sort of treatments should I be considering if it is determined that I've relapsed? I think I'd prefer immunotherapy.
Since August I've been on Revlimid maintenance therapy (10 mg) as part of the HOVON95 study.
Angela
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Re: Treatment for early relapse after stem cell transplant?
Hi
I am probably not much help, but I can only offer what has happened to me in the last week.
Four weeks ago I was told that my bloods showed a stringent complete response (sCR) and my bone marrow was minimal residual disease (MRD) negative 100 days post transplant. I was diagnosed 8th February 2016 Stage III with collapsed L3/4 and stage 2 kidney failure, which my GP had ignored!
I had 4 cycles of cyclophosphamide, thalidomide, and dexamethasone (CTD) followed by an autologous stem cell transplant 30th June 2016. What should have been a walk in the park resulted in me having a brain haemorrhage behind my eyes, resulting in loss of vision in my left eye and loss of haemostasis. My husband was told to prepare for the worst.
Four weeks ago all bloods were normal (free light chain levels and ratio normal). Wednesday last week at routine bloods before Zometa all seemed well. Monday this week my consultant asked to see me and advised I had an increase in my paraprotein (M-spike) of 6 g/l (0.6 g/dl), and both kappa and lambda free light chain levels were slightly raised. Ratio was normal.
I asked the haematologist if this was definitely a relapse (5 months after stem cell transplantation) and he said yes.
I am struggling with this as all the research I have done on MRD negativity and a sCR suggest a median progression free survival of 80 months! So my options are to do auto transplant again, followed by an allo (donor) transplant, or Velcade + dexamethasone.
Sorry I can't be of more help.
I am probably not much help, but I can only offer what has happened to me in the last week.
Four weeks ago I was told that my bloods showed a stringent complete response (sCR) and my bone marrow was minimal residual disease (MRD) negative 100 days post transplant. I was diagnosed 8th February 2016 Stage III with collapsed L3/4 and stage 2 kidney failure, which my GP had ignored!
I had 4 cycles of cyclophosphamide, thalidomide, and dexamethasone (CTD) followed by an autologous stem cell transplant 30th June 2016. What should have been a walk in the park resulted in me having a brain haemorrhage behind my eyes, resulting in loss of vision in my left eye and loss of haemostasis. My husband was told to prepare for the worst.
Four weeks ago all bloods were normal (free light chain levels and ratio normal). Wednesday last week at routine bloods before Zometa all seemed well. Monday this week my consultant asked to see me and advised I had an increase in my paraprotein (M-spike) of 6 g/l (0.6 g/dl), and both kappa and lambda free light chain levels were slightly raised. Ratio was normal.
I asked the haematologist if this was definitely a relapse (5 months after stem cell transplantation) and he said yes.
I am struggling with this as all the research I have done on MRD negativity and a sCR suggest a median progression free survival of 80 months! So my options are to do auto transplant again, followed by an allo (donor) transplant, or Velcade + dexamethasone.
Sorry I can't be of more help.
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SusanTR1964 - Name: Susan
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 8th February 2016
- Age at diagnosis: 51
Re: Treatment for early relapse after stem cell transplant?
Hi Ladies:
I am so sorry to hear about your relapses after having gone though a stem cell transplant. You would certainly hope to get more than a couple months in remission, especially with your initial responses (being sCR and MRD negative) being so good.
I am certainly no doctor, and my knowledge only comes from my own experience, so please do not take my experience as one that would work for everyone.
I was diagnosed in July 2015 with lambda light chain myeloma, with multiple back and rib lesions and 4 compression fractures. I have never had any measurable M-spike. I went through 6 cycles of cyclophosphamide, Velcade, and dexamethasone (CyBorD), then had my autologous stem cell transplant in May. So we aren't too far apart in our treatments.
I achieved a complete response (CR) after 4 cycles of the CyBorD, but my doctor wanted me to complete what he considered a "full cycle" of once a week for 6 months. I too achieved MRD negativity, and sCR. status, after the transplant.
One difference in our treatment seems to be that at 100 days my doctors said I should go on a maintenance regimen of Revlimid. Initially it was 10 mg for 21 days on, 7 days off, but I didn't tolerate it well. I am now on 5 mg 21 days on, 7 days off, and am doing much better. I am still in sCR, I don't know about the MRD negativity since I haven't had another bone marrow biopsy.
Maybe all that is needed is a maintenance plan, especially since both of your light chain ratios are still in the normal range. I wish you both the very best in your myeloma journey.
Warmest regards,
Kathleen
I am so sorry to hear about your relapses after having gone though a stem cell transplant. You would certainly hope to get more than a couple months in remission, especially with your initial responses (being sCR and MRD negative) being so good.
I am certainly no doctor, and my knowledge only comes from my own experience, so please do not take my experience as one that would work for everyone.
I was diagnosed in July 2015 with lambda light chain myeloma, with multiple back and rib lesions and 4 compression fractures. I have never had any measurable M-spike. I went through 6 cycles of cyclophosphamide, Velcade, and dexamethasone (CyBorD), then had my autologous stem cell transplant in May. So we aren't too far apart in our treatments.
I achieved a complete response (CR) after 4 cycles of the CyBorD, but my doctor wanted me to complete what he considered a "full cycle" of once a week for 6 months. I too achieved MRD negativity, and sCR. status, after the transplant.
One difference in our treatment seems to be that at 100 days my doctors said I should go on a maintenance regimen of Revlimid. Initially it was 10 mg for 21 days on, 7 days off, but I didn't tolerate it well. I am now on 5 mg 21 days on, 7 days off, and am doing much better. I am still in sCR, I don't know about the MRD negativity since I haven't had another bone marrow biopsy.
Maybe all that is needed is a maintenance plan, especially since both of your light chain ratios are still in the normal range. I wish you both the very best in your myeloma journey.
Warmest regards,
Kathleen
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: Treatment for early relapse after stem cell transplant?
Hi Kathleen,
Many thanks for posting a reply. Unfortunately we do not get the option of maintenance here in the UK. I was on the Myeloma XI trial, and part of this was randomisation for maintenance. However I could not be put forward for this as my platelet count was below 100 (trial criteria they had to be above 100). My options now are further induction with Revlimid + dexamethasone followed by Revlimid maintenance or Velcade + dexamethasone. My consultant recommended the Revlimid.
It is good to hear that you are sCR. Well done.
Many thanks for posting a reply. Unfortunately we do not get the option of maintenance here in the UK. I was on the Myeloma XI trial, and part of this was randomisation for maintenance. However I could not be put forward for this as my platelet count was below 100 (trial criteria they had to be above 100). My options now are further induction with Revlimid + dexamethasone followed by Revlimid maintenance or Velcade + dexamethasone. My consultant recommended the Revlimid.
It is good to hear that you are sCR. Well done.
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SusanTR1964 - Name: Susan
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 8th February 2016
- Age at diagnosis: 51
Re: Treatment for early relapse after stem cell transplant?
Angela,
I feel for you. I don't know what to do, either.
I had an autologous stem cell transplant in November of last year, experienced a "good response"; my M-protein went from 0.8 to 0.2 g/dL (8 to 2 g/L), and then dropped even further to "unable to assign a number". It hovered around this "faint" amount for 3 months, and, for the past 2 monthly doctor visits and evaluations, started coming back up at an approx. rate of 0.1 per month increase. Right now, per this writing, I'm back up to 0.5, 6 months after the transplant.
I've been put on 10 mg of Revlimid maintenance, and last month they raised it to 15 mg. My doctor has informed me that he doesn't want to change anything at this point, as he wants to see if it remains stable at 0.5 g/dL or changes at next month's office visit. I don't know if this is relapse or a margin of error interpretation by the labs doctor. To me, It doesn't seem positive because of the steady rate of increase in the M-spike - it's a little worrisome.
Anyway, I guess I can only wait and see what the doctor tells me during the next visit.
I will pray for you and hope that all goes well for you and that they'll be able to help you keep your multiple myeloma in remission, and I will keep you informed of my situation.
Right now, I am also thinking that immunotherapy with CAR-T is a way to go, should I need it in the future, or viral therapy using various engineered viruses to attack the multiple myeloma cells seems a good approach also.
I hope the best for you and God's Blessing for a total remission and cure for your multiple myeloma.
Mike G
I feel for you. I don't know what to do, either.
I had an autologous stem cell transplant in November of last year, experienced a "good response"; my M-protein went from 0.8 to 0.2 g/dL (8 to 2 g/L), and then dropped even further to "unable to assign a number". It hovered around this "faint" amount for 3 months, and, for the past 2 monthly doctor visits and evaluations, started coming back up at an approx. rate of 0.1 per month increase. Right now, per this writing, I'm back up to 0.5, 6 months after the transplant.
I've been put on 10 mg of Revlimid maintenance, and last month they raised it to 15 mg. My doctor has informed me that he doesn't want to change anything at this point, as he wants to see if it remains stable at 0.5 g/dL or changes at next month's office visit. I don't know if this is relapse or a margin of error interpretation by the labs doctor. To me, It doesn't seem positive because of the steady rate of increase in the M-spike - it's a little worrisome.
Anyway, I guess I can only wait and see what the doctor tells me during the next visit.
I will pray for you and hope that all goes well for you and that they'll be able to help you keep your multiple myeloma in remission, and I will keep you informed of my situation.
Right now, I am also thinking that immunotherapy with CAR-T is a way to go, should I need it in the future, or viral therapy using various engineered viruses to attack the multiple myeloma cells seems a good approach also.
I hope the best for you and God's Blessing for a total remission and cure for your multiple myeloma.
Mike G
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Michael G - Name: Michael A Garofalo
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 11/15
- Age at diagnosis: 60
Re: Treatment for early relapse after stem cell transplant?
My husband had a transplant in April of 2015. His M-spike was 0.4 g/dL going in and 0.3 coming out. His M-spike has risen 0.10 every few months since. It is now a bit over 2 years and at 0.8 g/dL. It was 0.7 for a number of months prior. But his kappa free light chain level (he is IgG kappa) has always been in normal range and actually goes up and down within that normal range. His ratio has been slightly off because the maintenance Revlimid suppresses his lambda. Because his WBC and platelets were getting low on the 10 mg dosage, he recently went to every other day and feels much better. And his ratio was normal since his lambda increased on the lower dosage while his kappa has been stable (or trending down). His PET last year showed no activity.
Talking with our doctor at Dana Farber, he said my husband's myeloma is indolent and not to really change anything at this point. Our local doc at Yale seems to agree for now. Will probably do another PET soon just to be sure but we aren't looking at a more intense treatment until doctors feel the relapse warrants it. His quality of life is great now and his kappa / lambda good too, so the rise in M spike is not enough at this point to worry them.
Perhaps the M-spike will stabilize.
Talking with our doctor at Dana Farber, he said my husband's myeloma is indolent and not to really change anything at this point. Our local doc at Yale seems to agree for now. Will probably do another PET soon just to be sure but we aren't looking at a more intense treatment until doctors feel the relapse warrants it. His quality of life is great now and his kappa / lambda good too, so the rise in M spike is not enough at this point to worry them.
Perhaps the M-spike will stabilize.
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
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