Hi,
I had an autologous stem cell transplant (ASCT) back in July 2013 after 10 cyles of Velcade, thalidomide, and dexamethasone (VTD) for my del(17p) light chain myeloma. Without any maintenance, I maintained a pretty much smooth sail until last month's result, which showed a jump of my kappa free light chain level from 58 (Feb 18) to 173 (May 18), now with a kappa-lambda ratio of 11.
I am yet to inform my newly assigned doc next week because my old doctor has recently moved to a different practice. But I'm pretty sure that this would be considered as relapse (hopefully early).
My question is, what sort of treatment is considered best for relapse after treatment like I've received? Does anyone have experience similar to mine that might help me decide what might be best for me?
Thanks all. I wish all of you well.
Forums
Re: Treatment for relapse after VTD & stem cell transplant?
There may be others here who can answer your question better than I. but I think most would agree that you have a lot of options. One would be a second stem cell transplant. From what I've read, doctors will consider this if remission from a first transplant goes more than 18 months (or something like that). Since you were able to get nearly five years of remission without maintenance, a second transplant might work well.
Then there are all of the potential options for drug therapy. Carfilzamib, Pomalyst, and daratumumab are all potential therapies for relapsed myeloma, and they can be combined in various fashions with each other or with Veldade or Revlimid. From what I understand, one of the biggest issue in myeloma treatment right now is choosing a drug or combination of drugs from all of the various available ones.
Best of luck with your choice of therapy!
Then there are all of the potential options for drug therapy. Carfilzamib, Pomalyst, and daratumumab are all potential therapies for relapsed myeloma, and they can be combined in various fashions with each other or with Veldade or Revlimid. From what I understand, one of the biggest issue in myeloma treatment right now is choosing a drug or combination of drugs from all of the various available ones.
Best of luck with your choice of therapy!
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Treatment for relapse after VTD & stem cell transplant?
Since you did not have any maintenance and had originally responded to VTD as induction therapy, it is logical that they would start with VTD or VRD (Velcade, Revlimid, and dexamethasone) first. You are not refractory to any drugs, so the entire arsenal is available.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Treatment for relapse after VTD & stem cell transplant?
You might want to consult the Mayo Clinic's mSMART guidelines for treatment of relapsed myeloma (see attachment).
mSMART_MM_relapse_2017_03.pdf- (472.73 KiB) Downloaded 267 times
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Treatment for relapse after VTD & stem cell transplant?
Thanks for the information and the guidance.
As I am approaching 67, I may or may not be a candidate for a second autologous stem cell transplant. I also did not store my excess stem cells (even if I did, they would have been expired in November 2017, since i did the collection in 2012, a year before my August 2013 autologous transplant). I have read in an article that using post-melphalan stem cells may not be as effective as using pre-melphalan stem cells.
But in general I am scared and reluctant to undergo a second transplant, because of the physical exhaustion it will cause.
Darzalex and Kyprolis are definitely inaccessible in my country, and though I may be able to get them from other country, it is financially impossible. As for Revlimid, it also is a challenging option from an access / cost perspective. Perhaps the original VTD will be prescribed for me.
Anyway, I am due to see my new doctor next week. I am hoping that she will be able to guide me to get away from this mess.
P.S. - I've been in this forum since 2011 and i am very thankful to be alive, and see most of the people I encountered in 2011 still posting invaluable information about myeloma!
As I am approaching 67, I may or may not be a candidate for a second autologous stem cell transplant. I also did not store my excess stem cells (even if I did, they would have been expired in November 2017, since i did the collection in 2012, a year before my August 2013 autologous transplant). I have read in an article that using post-melphalan stem cells may not be as effective as using pre-melphalan stem cells.
But in general I am scared and reluctant to undergo a second transplant, because of the physical exhaustion it will cause.
Darzalex and Kyprolis are definitely inaccessible in my country, and though I may be able to get them from other country, it is financially impossible. As for Revlimid, it also is a challenging option from an access / cost perspective. Perhaps the original VTD will be prescribed for me.
Anyway, I am due to see my new doctor next week. I am hoping that she will be able to guide me to get away from this mess.
P.S. - I've been in this forum since 2011 and i am very thankful to be alive, and see most of the people I encountered in 2011 still posting invaluable information about myeloma!
Re: Treatment for relapse after VTD & stem cell transplant?
Hello tpt,
The drug free 5-years you have enjoyed after your autologous stem cell transplant (ASCT) is well above average. I would think that the thalidomide maintenance (with or without dex) would be the first line of treatment your oncologist would recommend. I know of a few patients choosing to stay on the thalidomide maintenance for years after Revlimid was available, here in the U.S., because it has been working for them for years.
Also, you are barely on the threshold of a relapse as defined by mSMART. I hope the sudden jump in your kappa free light chain level was due to some reaction to an infection and the next test result would show a lower reading. Your kappa-lambda ratio is well below the threshold of the 100 recommended in this article. I think two of your consecutive blood tests should confirm these high readings before the relapse is 'confirmed'.
Your oncologist may prescribe Velcade only, Velcade + dex, thalidomide only, or thalidomide +dex for the maintenance. The thalidomide options avoid the routine hospital visits.
Wish you all the best.
The drug free 5-years you have enjoyed after your autologous stem cell transplant (ASCT) is well above average. I would think that the thalidomide maintenance (with or without dex) would be the first line of treatment your oncologist would recommend. I know of a few patients choosing to stay on the thalidomide maintenance for years after Revlimid was available, here in the U.S., because it has been working for them for years.
Also, you are barely on the threshold of a relapse as defined by mSMART. I hope the sudden jump in your kappa free light chain level was due to some reaction to an infection and the next test result would show a lower reading. Your kappa-lambda ratio is well below the threshold of the 100 recommended in this article. I think two of your consecutive blood tests should confirm these high readings before the relapse is 'confirmed'.
Your oncologist may prescribe Velcade only, Velcade + dex, thalidomide only, or thalidomide +dex for the maintenance. The thalidomide options avoid the routine hospital visits.
Wish you all the best.
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Treatment for relapse after VTD & stem cell transplant?
Hello TPT,
I also hope that your kappa and lambda light chain results subside and that you do not need treatment for a relapse. I don't see mention of the monoclonal proteins, though, or what sort of immunoglobulin disease that you have (IgG, IgA, IgM, or other). Also, are you being tracked for other signs of myeloma, such as the creatinine levels for kidney function, hemoglobin tests for anemia, or tests such as the skeletal x-ray survey, or PET scans to determine if lytic lesions are present, and if so, increasing.
So I think that until you have more information by getting those tests done you wouldn't know about a relapse. Even if in your country you do not have access to some of the newer drugs, you might be eligible to get onto a clinical trial. Those trials can run for years, thus providing the newer medications to those patients. A myeloma specialist in your area should know what trials are available and open to relapsed patients. I hope that helps and good luck!
I know that thalidomide is an effective drug against myeloma, but does have the potential side effect of neuropathy, so you might want to investigate other options of treatment also.
I also hope that your kappa and lambda light chain results subside and that you do not need treatment for a relapse. I don't see mention of the monoclonal proteins, though, or what sort of immunoglobulin disease that you have (IgG, IgA, IgM, or other). Also, are you being tracked for other signs of myeloma, such as the creatinine levels for kidney function, hemoglobin tests for anemia, or tests such as the skeletal x-ray survey, or PET scans to determine if lytic lesions are present, and if so, increasing.
So I think that until you have more information by getting those tests done you wouldn't know about a relapse. Even if in your country you do not have access to some of the newer drugs, you might be eligible to get onto a clinical trial. Those trials can run for years, thus providing the newer medications to those patients. A myeloma specialist in your area should know what trials are available and open to relapsed patients. I hope that helps and good luck!
I know that thalidomide is an effective drug against myeloma, but does have the potential side effect of neuropathy, so you might want to investigate other options of treatment also.
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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: Treatment for relapse after VTD & stem cell transplant?
I am not sure which type of myeloma I have, but I have never been tracked for my M-spike. The doctors only monitor my light chain and complete blood count every four months. Luckily my hemoglobin and creatinine are still within normal range (my hemoglobin is always around the 11-12 range because I have thalassemia). But I have not been tested on my calcium level and skeletal survey. I suppose this will be next.
But the good news is that I'm feeling great overall. Thanks so much for your support.
But the good news is that I'm feeling great overall. Thanks so much for your support.
Re: Treatment for relapse after VTD & stem cell transplant?
Hi All,
I have consulted my doctor, and I was prescribed 25 mg lenalidomide (Revlimid) + weekly 20 mg dexamethasone. I was surprised to be "treated" instead of being "maintained" with the 10 mg dose of lenalidomide. She said she will prescribe the treatment for six cycles and then follow that by a maintenance period.
My doctor said that it is better to not prescribe combos that have been prescribed to me previously, i.e. VTD or TD or VD. This is quite contradictory to many readings that I came across, e.g. to restart treatment from agent combinations that have worked previously.
Thankfully my bloodwork came out all aright, so the doctor ruled out any bone scans and marrow biopsies. She said that none of my organs are involved.
Thanks for reading!
I have consulted my doctor, and I was prescribed 25 mg lenalidomide (Revlimid) + weekly 20 mg dexamethasone. I was surprised to be "treated" instead of being "maintained" with the 10 mg dose of lenalidomide. She said she will prescribe the treatment for six cycles and then follow that by a maintenance period.
My doctor said that it is better to not prescribe combos that have been prescribed to me previously, i.e. VTD or TD or VD. This is quite contradictory to many readings that I came across, e.g. to restart treatment from agent combinations that have worked previously.
Thankfully my bloodwork came out all aright, so the doctor ruled out any bone scans and marrow biopsies. She said that none of my organs are involved.
Thanks for reading!
Re: Treatment for relapse after VTD & stem cell transplant?
Hi TPT,
Coincidentally, after my relapse in 2014, I was also prescribed 25 mg of Revlimid 21/28 days and 20 mg of dexamethasone weekly. This combination, although stressful to take at times, was successful in bringing my monoclonal protein level down from about 12 g/l (1.2 g/dl) to around 2 g/l, but it took about nine months to do that. My kappa/lambda ratio also fell from about 5 (high value) to 1 (normal value). The regimen worked, but I was surprised at how many months it took to reverse the relapsing trend.
It's good that you seem to have no other problems associated with the myeloma, apart from the light chains.
Good luck!
Coincidentally, after my relapse in 2014, I was also prescribed 25 mg of Revlimid 21/28 days and 20 mg of dexamethasone weekly. This combination, although stressful to take at times, was successful in bringing my monoclonal protein level down from about 12 g/l (1.2 g/dl) to around 2 g/l, but it took about nine months to do that. My kappa/lambda ratio also fell from about 5 (high value) to 1 (normal value). The regimen worked, but I was surprised at how many months it took to reverse the relapsing trend.
It's good that you seem to have no other problems associated with the myeloma, apart from the light chains.
Good luck!
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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
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