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Diagnosed at Stage 3? SCT or Maintenance?
My husband was Stage 3 at diagnosis. He has been offered SCT as an option. Looking for others that may have been diagnosed as Stage 3 and held off on SCT as a treatment option at this time. If so, what is your maintenance process? What was your induction treatment?
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Diagnosed at Stage 3? SCT or Maintenance?
I too was stage 3 and had four cycles of RVD which knocked it down to almost CR. My thought was to avoid the SCT and just go on maintenance. My local oncologist and the "expert" in Denver warned me against this as multiple clinical studies indicated relapse would occur in less than 24 months. These same docs also told me don't look at stats because everyone is a individual and results vary.
My wife and kids were on my case to do the SCT but I waited a few weeks to make a decision and it was great, no drugs in the system. I felt great.
So after much nagging from the family I went through the SCT. I did it out patient since I was within 45 minutes of the transplant center. It wasn't as bad as I expected. Yes there were some tough days but in general it wasn't bad except for a two week period after the big dose of chemo at the start. I was back at work fulltime 8 weeks after the start of the SCT.
90 days post transplant they pulled my marrow and ran my blood. To say the least I was disappointed when the results showed no change from the biopsy and blood work pulled just before the SCT.
At that point it was time to make a decision on maintenance. They offered me a choice of doing nothing or taking Revlimid 10mg every day until relapse or three years, whichever came first. I was pretty much disgusted with the whole thing at this point but again I took a more conservative approach and did the Revlimid maintenance.
I'm nine months post transplant and have had my blood work checked at 3 month intervals. Each three month check has shown improved numbers. My m-spike was .4 and my light chains were 27 after transplant. I'm now at ,2 and 7.
Was it the transplant that helps drive the number down? Is it the maintenance? Is it the combination of the two? Who really knows. If I had to do it all over again I'd probably skip the transplant but what would have happened at this point without the transplant. You just don't know. If I would have relapsed I would have kicked myself for not doing the SCT.
The standard treatment as these docs like to call it is a SCT and maintenance. I figure these guys are all smart and have years of experience so why question them, just do what they suggest so long as you can get at least two of them to tell you the same thing twice.
I would make sure you get your treatment options from a multiple myeloma specialist. My local oncologist sent me to one from the start and works with the specialist to drive my treatment.
Sorry for the long winded response. Jerry.
My wife and kids were on my case to do the SCT but I waited a few weeks to make a decision and it was great, no drugs in the system. I felt great.
So after much nagging from the family I went through the SCT. I did it out patient since I was within 45 minutes of the transplant center. It wasn't as bad as I expected. Yes there were some tough days but in general it wasn't bad except for a two week period after the big dose of chemo at the start. I was back at work fulltime 8 weeks after the start of the SCT.
90 days post transplant they pulled my marrow and ran my blood. To say the least I was disappointed when the results showed no change from the biopsy and blood work pulled just before the SCT.
At that point it was time to make a decision on maintenance. They offered me a choice of doing nothing or taking Revlimid 10mg every day until relapse or three years, whichever came first. I was pretty much disgusted with the whole thing at this point but again I took a more conservative approach and did the Revlimid maintenance.
I'm nine months post transplant and have had my blood work checked at 3 month intervals. Each three month check has shown improved numbers. My m-spike was .4 and my light chains were 27 after transplant. I'm now at ,2 and 7.
Was it the transplant that helps drive the number down? Is it the maintenance? Is it the combination of the two? Who really knows. If I had to do it all over again I'd probably skip the transplant but what would have happened at this point without the transplant. You just don't know. If I would have relapsed I would have kicked myself for not doing the SCT.
The standard treatment as these docs like to call it is a SCT and maintenance. I figure these guys are all smart and have years of experience so why question them, just do what they suggest so long as you can get at least two of them to tell you the same thing twice.
I would make sure you get your treatment options from a multiple myeloma specialist. My local oncologist sent me to one from the start and works with the specialist to drive my treatment.
Sorry for the long winded response. Jerry.
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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: Diagnosed at Stage 3? SCT or Maintenance?
Thank you so much for your story. It really helps to have perspective. 4 different doctors said SCT. So, we are planning on doing it at the end of Cycle 4. His light chains are 27 (after Cycle 2).
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Diagnosed at Stage 3? SCT or Maintenance?
We started some of the pre-work for the SCT. His urine was free from any presence of cancer, light chains, etc. His bone marrow showed less than 2% involvement after Cycle 4.
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LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
Re: Diagnosed at Stage 3? SCT or Maintenance?
Hi LadyLib. Keeping my fingers crossed that all goes well for your husband's SCT. I think I told you in response to one of your other posts that I was also stage 3 when diagnosed. I reached more than 90% remission from my initial therapy and CR from the SCT. That lasted for about 2 years. I've had a low M-spike for a year and a half now, but so far, it is staying very low, and I'm feeling good.
Dana
Dana
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Diagnosed at Stage 3? SCT or Maintenance?
My husband was diagnosed with stage 3 and is on his 4th cycle. He no longer has an m-spike and light chains and raio are in normal range. Can he just wait for relapse to ge the SCT. Why get it immediately after intial treatment?
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Stacy
Re: Diagnosed at Stage 3? SCT or Maintenance?
This is essentially am unanswrable question given the state of the science.
The doctors who favor transplant for all eligible transplant patients will tell you that achieiving a deep response followed by a transplant gives the best chance of delayed progression and longest overall survival. Some studies support this position but other doctors believe that those studies are too dated given advances in novel therapies and that transplant can be avoided.
I have examined these competing positions in light of my own personal situation and concluded that a transplant is the best choice. It is decidedly a personal choice.
The doctors who favor transplant for all eligible transplant patients will tell you that achieiving a deep response followed by a transplant gives the best chance of delayed progression and longest overall survival. Some studies support this position but other doctors believe that those studies are too dated given advances in novel therapies and that transplant can be avoided.
I have examined these competing positions in light of my own personal situation and concluded that a transplant is the best choice. It is decidedly a personal choice.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Diagnosed at Stage 3? SCT or Maintenance?
Yeah everyone's story will be different. So many more factors than just staging determines treatment...chromosomal factors, age, responses to treatment, kidney outlook, etc.
Hematologist/oncologist wants auto treatment after 6 chemo cycles, them maint. Specialist wants auto treatment...then 2 mo wait...then allo treatment. I think I will have no problem with auto, but allo has higher potential of complications and I'm not to cool with all of that.
Hematologist/oncologist wants auto treatment after 6 chemo cycles, them maint. Specialist wants auto treatment...then 2 mo wait...then allo treatment. I think I will have no problem with auto, but allo has higher potential of complications and I'm not to cool with all of that.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: Diagnosed at Stage 3? SCT or Maintenance?
Allo is certainly risky although many have gone that route successfully. It would be interesting to see a study which attempts to pinpoint success factors since when it works it can be a "cure."
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Diagnosed at Stage 3? SCT or Maintenance?
Hi Goldmine,
Generally speaking the answer to the question of when allos are a cure are the same for all blood cancers. The key factor is that the transplant is done in first complete response (CR1). As a general rule of thumb:
"Stem-cell transplantation from allogeneic donors may be curative for 10–20% of patients with chemotherapy-resistant, refractory hematologic malignancies, and for up to 80% of patients who are transplanted in remission. Much of the high response and curative potential of allografts is attributed to a ‘graft-versus-tumor’ effect."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3017399/
For male patients having a female donor is more likely to end up with the allo being curative:
"This study clearly demonstrates that transplantation of a male patient with a graft from a female donor involves a graft vs myeloma effect. This donor gender-specific effect has not been seen in previous studies of myeloma transplants, probably because of lack of detectable advantageous effect on OS, masked by increased transplant-related mortality, and inadequate follow-up."
http://www.nature.com/bmt/journal/v35/n6/full/1704861a.html
Unfortunately in myeloma we do not know what percentage can be cured due to the fact that allos are not considered appropriate therapy for most patients 70 and older. The older studies were done on patients that were not in CR1 because prior to Velcade few myeloma patients were in CR prior to transplant. Dr. Shain and his colleagues are involved in a study that could help answer that question. He is kind enough to comment here so if he sees this maybe he could provide some commentary and add on to what I wrote.
"The use of allogeneic hematopoietic cell transplantation (HCT) in multiple myeloma (multiple myeloma) remains controversial but the role of allogeneic HCT for consolidation of initial response in the era of novel agents has not been defined. Therefore, we conducted a phase 2 study of allogeneic HCT in multiple myeloma patients achieving at least very good partial response (VGPR) after initial therapy."
"These results indicate that allogeneic HCT for multiple myeloma in VGPR or CR as consolidation achieves favorable disease control. The study is ongoing to assess long-term safety of this modality. A multicenter trial is planned to evaluate the utility of allogeneic HCT in high-risk multiple myeloma. "
https://ash.confex.com/ash/2013/webprogram/Paper64926.html
My allo worked great. I did mine in CR1. I was fortunate enough to have an unrelated female donor. The best part of my myeloma journey was to become friends with such a special person. My quality of life is back to what it was prior to diagnosis other than the bone damage from the disease. The only pharmaceutical drug I need to take is Zometa once every 3 months. IMO doing an allo is a whole lot less risky than having relapsed myeloma and being resistant to proteasome inhibitors and IMIDs due to never ending cycles of both drugs early in disease course.
Mark
Generally speaking the answer to the question of when allos are a cure are the same for all blood cancers. The key factor is that the transplant is done in first complete response (CR1). As a general rule of thumb:
"Stem-cell transplantation from allogeneic donors may be curative for 10–20% of patients with chemotherapy-resistant, refractory hematologic malignancies, and for up to 80% of patients who are transplanted in remission. Much of the high response and curative potential of allografts is attributed to a ‘graft-versus-tumor’ effect."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3017399/
For male patients having a female donor is more likely to end up with the allo being curative:
"This study clearly demonstrates that transplantation of a male patient with a graft from a female donor involves a graft vs myeloma effect. This donor gender-specific effect has not been seen in previous studies of myeloma transplants, probably because of lack of detectable advantageous effect on OS, masked by increased transplant-related mortality, and inadequate follow-up."
http://www.nature.com/bmt/journal/v35/n6/full/1704861a.html
Unfortunately in myeloma we do not know what percentage can be cured due to the fact that allos are not considered appropriate therapy for most patients 70 and older. The older studies were done on patients that were not in CR1 because prior to Velcade few myeloma patients were in CR prior to transplant. Dr. Shain and his colleagues are involved in a study that could help answer that question. He is kind enough to comment here so if he sees this maybe he could provide some commentary and add on to what I wrote.
"The use of allogeneic hematopoietic cell transplantation (HCT) in multiple myeloma (multiple myeloma) remains controversial but the role of allogeneic HCT for consolidation of initial response in the era of novel agents has not been defined. Therefore, we conducted a phase 2 study of allogeneic HCT in multiple myeloma patients achieving at least very good partial response (VGPR) after initial therapy."
"These results indicate that allogeneic HCT for multiple myeloma in VGPR or CR as consolidation achieves favorable disease control. The study is ongoing to assess long-term safety of this modality. A multicenter trial is planned to evaluate the utility of allogeneic HCT in high-risk multiple myeloma. "
https://ash.confex.com/ash/2013/webprogram/Paper64926.html
My allo worked great. I did mine in CR1. I was fortunate enough to have an unrelated female donor. The best part of my myeloma journey was to become friends with such a special person. My quality of life is back to what it was prior to diagnosis other than the bone damage from the disease. The only pharmaceutical drug I need to take is Zometa once every 3 months. IMO doing an allo is a whole lot less risky than having relapsed myeloma and being resistant to proteasome inhibitors and IMIDs due to never ending cycles of both drugs early in disease course.
Mark
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Mark
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