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When do you do SCT?
I just started my first initial treatment RVD. My doctor has started the SCT conversation, more to be revealed. I’d like to know for those who did SCT was it immediately after initial treatment or later?
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mso - Name: Mic
- Who do you know with myeloma?: self
- When were you/they diagnosed?: Sept 2010
- Age at diagnosis: 53
Re: When do you do SCT?
Mso,
I think you should ask your Doctor what his/her long term strategy is since you are a younger patient by myeloma standards. If I were you I would be more concerned with using an IMID (Revlimid in your case) and a proteasome inhibitor (Velcade in your case) as Induction than I would be if I used high dose Melphalan. Resistence to IMID's and proteasome inhibitors is the biggest problem a myeloma patient faces in 2012. The new generation IMID (pomalidomide) and proteasome inhibitor (carfilzomib) only work in approximately 25-35% of patients that are resistent to Revlimid and Velcade.
"We studied 286 patients with relapsed multiple myeloma, who were refractory to bortezomib and were relapsed following, refractory to or ineligible to receive, an IMiD (immunomodulatory drug), had measurable disease, and ECOG PS of 0, 1 or 2. The date patients satisfied the entry criteria was defined as time zero (T0). The median age at diagnosis was 58 years, and time from diagnosis to T0 was 3.3 years. Following T0, 213 (74%) patients had a treatment recorded with one or more regimens (median=1; range 0–8). The first regimen contained bortezomib in 55 (26%) patients and an IMiD in 70 (33%). A minor response or better was seen to at least one therapy after T0 in 94 patients (44%) including partial response in 69 (32%). The median overall survival and event-free survival from T0 were 9 and 5 months, respectively. This study confirms the poor outcome, once patients become refractory to current treatments. "
http://www.nature.com/leu/journal/v26/n1/full/leu2011196a.html
I would be asking your Doctor what their strategy is to keep you from getting in that situation.
Here is a link to the IMWG statement on Autos.
http://bloodjournal.hematologylibrary.org/content/early/2011/03/29/blood-2011-02-297325.full.pdf+html
Mark
I think you should ask your Doctor what his/her long term strategy is since you are a younger patient by myeloma standards. If I were you I would be more concerned with using an IMID (Revlimid in your case) and a proteasome inhibitor (Velcade in your case) as Induction than I would be if I used high dose Melphalan. Resistence to IMID's and proteasome inhibitors is the biggest problem a myeloma patient faces in 2012. The new generation IMID (pomalidomide) and proteasome inhibitor (carfilzomib) only work in approximately 25-35% of patients that are resistent to Revlimid and Velcade.
"We studied 286 patients with relapsed multiple myeloma, who were refractory to bortezomib and were relapsed following, refractory to or ineligible to receive, an IMiD (immunomodulatory drug), had measurable disease, and ECOG PS of 0, 1 or 2. The date patients satisfied the entry criteria was defined as time zero (T0). The median age at diagnosis was 58 years, and time from diagnosis to T0 was 3.3 years. Following T0, 213 (74%) patients had a treatment recorded with one or more regimens (median=1; range 0–8). The first regimen contained bortezomib in 55 (26%) patients and an IMiD in 70 (33%). A minor response or better was seen to at least one therapy after T0 in 94 patients (44%) including partial response in 69 (32%). The median overall survival and event-free survival from T0 were 9 and 5 months, respectively. This study confirms the poor outcome, once patients become refractory to current treatments. "
http://www.nature.com/leu/journal/v26/n1/full/leu2011196a.html
I would be asking your Doctor what their strategy is to keep you from getting in that situation.
Here is a link to the IMWG statement on Autos.
http://bloodjournal.hematologylibrary.org/content/early/2011/03/29/blood-2011-02-297325.full.pdf+html
Mark
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Mark
Re: When do you do SCT?
I recognize you were asking for those who had a SCT. However, I've taken the other approach for now. I've been on induction treatment with CRD since Mar 2011, and will continue thru Jan 2013. I had stem cells collected in Aug 2011 so I have them in case I have a SCT later. I'm currently in complete response and plan to wait until I relapse before considering a SCT. If I can get several years in before that happens, I'd much rather wait. Something to consider and discuss with your doctor, particularly since some people have good responses with RVD.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: When do you do SCT?
Hi Mso,
EJ was your age when diagnosed 21 months ago. His induction therapy was Velcade and dex, followed by an SCT. He is in remission, and he's back to playing competitive vollyball. In fact, he made it to the semi-finals in a beach tournament recently!
The SCT itself was somewhat of a non event. He had 2-3 days where he didn't feel well and had trouble keeping food down. During those days, he just slept. The rest of the time he was able to walk around the hospital floor, read, work on the computer, etc. He did have some complications from an allergy to penicillin, but that's about it. He was back to work within two months. Would have been sooner but I was being overprotective and insisted he wait another week.
It took him close to 7 months for his m-spike to get to zero. I think waiting for the results was harder than the SCT! EJ opted not to go on maintenance. In part to enjoy the drug holiday, but also to avoid developing a resistence to Revlimid. His onc. wants to save it for when he needs it.
He's been very happy with how things turned out. His QOL is just about what it was before he was diagnosed. The only difference has been that he tires a little more easily and goes to bed earlier than he used to.
Hope that helps. Good luck!
Lyn
EJ was your age when diagnosed 21 months ago. His induction therapy was Velcade and dex, followed by an SCT. He is in remission, and he's back to playing competitive vollyball. In fact, he made it to the semi-finals in a beach tournament recently!
The SCT itself was somewhat of a non event. He had 2-3 days where he didn't feel well and had trouble keeping food down. During those days, he just slept. The rest of the time he was able to walk around the hospital floor, read, work on the computer, etc. He did have some complications from an allergy to penicillin, but that's about it. He was back to work within two months. Would have been sooner but I was being overprotective and insisted he wait another week.
It took him close to 7 months for his m-spike to get to zero. I think waiting for the results was harder than the SCT! EJ opted not to go on maintenance. In part to enjoy the drug holiday, but also to avoid developing a resistence to Revlimid. His onc. wants to save it for when he needs it.
He's been very happy with how things turned out. His QOL is just about what it was before he was diagnosed. The only difference has been that he tires a little more easily and goes to bed earlier than he used to.
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
Re: When do you do SCT?
I had mine late December 2011, immediately after RVD induction. I'm in a clinical trial where this is the protocol, but if I wasn't in the trial I would still have done the up-front ASCT because I have two high-risk chromosome anomalies. I was lucky and I tolerated my ASCT very well. Right now I feel 100% and life is completely normal.
If I wasn't high risk, I still think I would have done it up-front, but that's my personal preference. There are pros and cons either way.
If I wasn't high risk, I still think I would have done it up-front, but that's my personal preference. There are pros and cons either way.
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pgsatl - Name: Paul
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2006
- Age at diagnosis: 38
Re: When do you do SCT?
Hi Mso,
Do you have any cytogenetic abnormalities?
If not that is GREAT and places you in the group that has good outcomes with HDT.
If you do, the data does not support HDT.
" Remarkably, patients with two or more aberrations had significantly shorter overall survival (p=0.001), time to progression (p=0.036) and progression free survival (p=0.008)."
http://www.ncbi.nlm.nih.gov/pubmed/20099973
So, one of the primary questions you may wish to ask is about your cytogenetic profile as that makes a significant difference when it comes to HDT.
Do you have any cytogenetic abnormalities?
If not that is GREAT and places you in the group that has good outcomes with HDT.
If you do, the data does not support HDT.
" Remarkably, patients with two or more aberrations had significantly shorter overall survival (p=0.001), time to progression (p=0.036) and progression free survival (p=0.008)."
http://www.ncbi.nlm.nih.gov/pubmed/20099973
So, one of the primary questions you may wish to ask is about your cytogenetic profile as that makes a significant difference when it comes to HDT.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: When do you do SCT?
Hi Mark,
You write:
"If I were you I would be more concerned with using an IMID (Revlimid in your case) and a proteasome inhibitor (Velcade in your case) as Induction than I would be if I used high dose Melphalan."
Why?
You mention resistance. Is resistance the problem or is it that HDT destabilizes DNA further? Moreover, HDT has a 50% failure rate WITH SCT, do you think induction therapy changes that?
If so, how?
Do you think that not using IMID's changes that outcome? I have not seen data that supports that have you?
Afterall, the HDT was used to get a DR or CR...how does IMID therapy change that?
IOW's if you get DR with IMID's why then would one opt for HDT?
Allos certainly offer more, but do Autos? I think not.
You write:
"If I were you I would be more concerned with using an IMID (Revlimid in your case) and a proteasome inhibitor (Velcade in your case) as Induction than I would be if I used high dose Melphalan."
Why?
You mention resistance. Is resistance the problem or is it that HDT destabilizes DNA further? Moreover, HDT has a 50% failure rate WITH SCT, do you think induction therapy changes that?
If so, how?
Do you think that not using IMID's changes that outcome? I have not seen data that supports that have you?
Afterall, the HDT was used to get a DR or CR...how does IMID therapy change that?
IOW's if you get DR with IMID's why then would one opt for HDT?
Allos certainly offer more, but do Autos? I think not.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: When do you do SCT?
Suzierose,
Hope you are doing well. All is well with me - I got to celebrate one full year without any Myeloma therapy - I cannot wait to thank my Donor for that. No problem with GVHD or any other therapy related side effect - I am indeed Blessed.
My point above with respect to why I think Mso should be more concerned about using a proteasome inhibitor and an IMID as Induction is based on the statistic I posted above. IMO that is the universal statistic that applies to all Myeloma patients. No matter what therapies you did earlier, if a patient is relapsed and is not responding to to those two classes of drugs, they will very likely face a bad QOL and tough therapy ahead. As you know I am no fan of alkylating agents and like you I do not view Autos as real transplants. They are clearly inferior to IMID's and proteasome inhibitors. I just worry about patients counting on newer therapies that seem "over-hyped" IMO by Doctors that are on the payroll of Celgene, Millennium and other Big Pharma.
As you know, I am a big believer in the philosophy of a patient gaining an Molecular Response and that will lead to a great outcome. If a patient can achieve that without using an IMID or a proteasome inhibitor, all the better. I mentioned the IMID above because I have seen instances of Velcade combined with Cytoxan or Velcade/thalidomide/DEX consolidation after high dose Melphalan (with no novel agents as Induction) gaining MR.
https://ash.confex.com/ash/2011/webprogram/Paper36584.html
http://www.ncbi.nlm.nih.gov/pubmed/22422823
Certainly the combo of proteasome inhibitor/IMID/DEX can gain MR as well but if the patient does not get the MR early (Induction) using that combo it is difficult to get it later. Check out how few patients could upgrade to MR after RVD Induction to high dose melphalan to RVD consolidation in this study at 2011 ASH:
"Consolidation therapy with 2 VRD cycles upgraded response in 26% of pts but only 1 pt achieved MRD negative (among 24 assessed). At time of reporting, Len maintenance did not improve response rate but 1 pt get MRD negative. One pt progressed during maintenance phase and 2 pts turned into MRD positive again without evidence of relapse."
https://ash.confex.com/ash/2011/webprogram/Paper37709.html
I am thrilled you got MR with your Induction. For patients that do not, they do not have a great chance of getting it later unless they do an Allo. As you know I got it as well but I have another good chance of getting it with Revlimid/DLI's. Looks like you and I are going to be around a long time discussing things here in the Beacon Forums!
Mark
Hope you are doing well. All is well with me - I got to celebrate one full year without any Myeloma therapy - I cannot wait to thank my Donor for that. No problem with GVHD or any other therapy related side effect - I am indeed Blessed.
My point above with respect to why I think Mso should be more concerned about using a proteasome inhibitor and an IMID as Induction is based on the statistic I posted above. IMO that is the universal statistic that applies to all Myeloma patients. No matter what therapies you did earlier, if a patient is relapsed and is not responding to to those two classes of drugs, they will very likely face a bad QOL and tough therapy ahead. As you know I am no fan of alkylating agents and like you I do not view Autos as real transplants. They are clearly inferior to IMID's and proteasome inhibitors. I just worry about patients counting on newer therapies that seem "over-hyped" IMO by Doctors that are on the payroll of Celgene, Millennium and other Big Pharma.
As you know, I am a big believer in the philosophy of a patient gaining an Molecular Response and that will lead to a great outcome. If a patient can achieve that without using an IMID or a proteasome inhibitor, all the better. I mentioned the IMID above because I have seen instances of Velcade combined with Cytoxan or Velcade/thalidomide/DEX consolidation after high dose Melphalan (with no novel agents as Induction) gaining MR.
https://ash.confex.com/ash/2011/webprogram/Paper36584.html
http://www.ncbi.nlm.nih.gov/pubmed/22422823
Certainly the combo of proteasome inhibitor/IMID/DEX can gain MR as well but if the patient does not get the MR early (Induction) using that combo it is difficult to get it later. Check out how few patients could upgrade to MR after RVD Induction to high dose melphalan to RVD consolidation in this study at 2011 ASH:
"Consolidation therapy with 2 VRD cycles upgraded response in 26% of pts but only 1 pt achieved MRD negative (among 24 assessed). At time of reporting, Len maintenance did not improve response rate but 1 pt get MRD negative. One pt progressed during maintenance phase and 2 pts turned into MRD positive again without evidence of relapse."
https://ash.confex.com/ash/2011/webprogram/Paper37709.html
I am thrilled you got MR with your Induction. For patients that do not, they do not have a great chance of getting it later unless they do an Allo. As you know I got it as well but I have another good chance of getting it with Revlimid/DLI's. Looks like you and I are going to be around a long time discussing things here in the Beacon Forums!
Mark
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Mark
Re: When do you do SCT?
Currently doing initial therapy of Rev/Vel/Dex since diagnosis of multiple myeloma in January 2012. Local Dr. suggested RVD, while consult with Moffitt (who will do SCT) noted either Rev or Velcade with Dex. 1st series of Rev/Dex and then I decided to add Velcade for 2nd and 3rd series based on studies I saw. Just started 4th series.
Both Moffitt and local Dr. have spoken of possible Transplant, but have also mentioned not going the way of a transplant and just harvesting cells for now. Went to information gather meeting with with Transplant Team at Moffitt who offered information on 2 studies, one using Auto SCT with 3 possible treatment arms - 1) Single SCT with Consolidation Therapy, 2) Single SCT w/o Consolidation Therapy, 2) Tandem SCT with Lenalidomide maintenance. Second choice is a "Evaluation of Melphalan + Bortezomib as a Conditioning Regime for Autologous and Allogeneic Stem Cell Transplants after Cytoreductive Therapy.
It's been10 years as MGUS/Smoldering before Myeloma got "teeth". In May of 2011 my local Dr. wanted to start treatment, however Moffitt suggested waiting for IGG. I have no bone or kidney involvement, with anemia being my main issue.
Clearly I'm in a quandary about what to do. And I'm gathering info. I see mention of an allo and this is something I'm wondering about as a possibility. The risk is higher though and of course there is just no data to tell me that since I went 10 years until full blown multiple myeloma that the myeloma is not very aggressive. I have been told I am standard risk, that I do have chromosome 13 deletion which showed up in the FISH testing in January, but had not been noted previously at University of Arkansas during my consultation years there from 2003 to 2007.
Your information about the Rev/Velcade initial therapy was something I had not been aware of and perhaps will affect my reaction to an Allo transplant.
Research and drugs have come a long way since what they told me in 2002. I am very grateful for the 10 years I have had without having to face the tiger. I am reaping many benefits from this delay. Still though, myeloma varies so much from person to person, it affects people with very different health profiles and these breakdowns are not part of the statistics. I believe that I must take an active part, within my powers, to make decisions. Any help you can provide would be appreciated.
Both Moffitt and local Dr. have spoken of possible Transplant, but have also mentioned not going the way of a transplant and just harvesting cells for now. Went to information gather meeting with with Transplant Team at Moffitt who offered information on 2 studies, one using Auto SCT with 3 possible treatment arms - 1) Single SCT with Consolidation Therapy, 2) Single SCT w/o Consolidation Therapy, 2) Tandem SCT with Lenalidomide maintenance. Second choice is a "Evaluation of Melphalan + Bortezomib as a Conditioning Regime for Autologous and Allogeneic Stem Cell Transplants after Cytoreductive Therapy.
It's been10 years as MGUS/Smoldering before Myeloma got "teeth". In May of 2011 my local Dr. wanted to start treatment, however Moffitt suggested waiting for IGG. I have no bone or kidney involvement, with anemia being my main issue.
Clearly I'm in a quandary about what to do. And I'm gathering info. I see mention of an allo and this is something I'm wondering about as a possibility. The risk is higher though and of course there is just no data to tell me that since I went 10 years until full blown multiple myeloma that the myeloma is not very aggressive. I have been told I am standard risk, that I do have chromosome 13 deletion which showed up in the FISH testing in January, but had not been noted previously at University of Arkansas during my consultation years there from 2003 to 2007.
Your information about the Rev/Velcade initial therapy was something I had not been aware of and perhaps will affect my reaction to an Allo transplant.
Research and drugs have come a long way since what they told me in 2002. I am very grateful for the 10 years I have had without having to face the tiger. I am reaping many benefits from this delay. Still though, myeloma varies so much from person to person, it affects people with very different health profiles and these breakdowns are not part of the statistics. I believe that I must take an active part, within my powers, to make decisions. Any help you can provide would be appreciated.
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NancyStLou - Name: NancyStLou
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: multiple myeloma 1/2012; SMM 5/2005; MGUS 10/2002;
- Age at diagnosis: 47
Re: When do you do SCT?
I read the other posts with interest. My brother is now a candidate for SCT, age 62. Info on my profile. Suppose the patient is in partial remission after 2 months RVD, but had to stop due to Stage 2 peripheral neuropathy. Protein number is now 0.9, so he's doing pretty good. Now talking about SCT, which sounds scary. The most important issue is quality of life. Right now he feels good if you don't count the neuropathy. He has a pain patch for that and it isn't as bad as it was.
So why do an SCT if you're feeling pretty good now? Isn't this just borrowing trouble? Could he lose the quality of life he has now? What really is the expected outcome for someone his age? Perhaps doing a lighter chemo is a better idea so he isn't trading one set of problems for worse ones caused by SCT????
What happens to patients at this stage who don't do the SCT even though the doctors say it's the next step they recommend? Do they get worse as a natural course of the disease even when continuing a lighter version of chemo?
He has only one minor lesion on his skull, kidneys are fine, bones great. His biggest worry is he wants to enjoy what years he has, not be subjected to countless drugs and treatments that worsen his quality of life. His biggest concern is that doing an SCT opens a big bad pandora's box, and he could end up much worse off than before. Being alive is not the most important thing; being able to enjoy life as best as he can under the circumstances counts most.
Another question: sorry I have lots. Drs at Moffitt and Dana Farber discussed Tandem Autos, Moffit also described Allo, but no one mentioned tandem auto-allo with reduced intensity chemo. What about this tandem auto-allo? Isn't this less stressful on the body? Less damage to vital organs? I read that Sloan Kettering and City of Hope use reduced intensity image guided radiation prior to transplant to avoid damage to the rest of the body and target the marrow. Also, there are several siblings in this family. Wouldn't that be good odds he could find a good HLA match?
Final thought: I've read reports of female to male allo .... does this really enhance GVD, but creates worse GvHD? Or what? Is this all still too new to know what it a ll means?
I'm going to City of Hope to ask questions for my brother in a few weeks, so would like to learn as much as I can. Anyone have a list of the abbreviations you all use... I understand some, like GVHD and RVD, but LDI??? Anyway, I could really use a dictionary for multiple myeloma... LOL
THANKS! SuzieQ
So why do an SCT if you're feeling pretty good now? Isn't this just borrowing trouble? Could he lose the quality of life he has now? What really is the expected outcome for someone his age? Perhaps doing a lighter chemo is a better idea so he isn't trading one set of problems for worse ones caused by SCT????
What happens to patients at this stage who don't do the SCT even though the doctors say it's the next step they recommend? Do they get worse as a natural course of the disease even when continuing a lighter version of chemo?
He has only one minor lesion on his skull, kidneys are fine, bones great. His biggest worry is he wants to enjoy what years he has, not be subjected to countless drugs and treatments that worsen his quality of life. His biggest concern is that doing an SCT opens a big bad pandora's box, and he could end up much worse off than before. Being alive is not the most important thing; being able to enjoy life as best as he can under the circumstances counts most.
Another question: sorry I have lots. Drs at Moffitt and Dana Farber discussed Tandem Autos, Moffit also described Allo, but no one mentioned tandem auto-allo with reduced intensity chemo. What about this tandem auto-allo? Isn't this less stressful on the body? Less damage to vital organs? I read that Sloan Kettering and City of Hope use reduced intensity image guided radiation prior to transplant to avoid damage to the rest of the body and target the marrow. Also, there are several siblings in this family. Wouldn't that be good odds he could find a good HLA match?
Final thought: I've read reports of female to male allo .... does this really enhance GVD, but creates worse GvHD? Or what? Is this all still too new to know what it a ll means?
I'm going to City of Hope to ask questions for my brother in a few weeks, so would like to learn as much as I can. Anyone have a list of the abbreviations you all use... I understand some, like GVHD and RVD, but LDI??? Anyway, I could really use a dictionary for multiple myeloma... LOL
THANKS! SuzieQ
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SuzieQ - Name: Shelley
- Who do you know with myeloma?: relative
- When were you/they diagnosed?: 1985 MGUS, 2010 Smoldering, 2011 Active
- Age at diagnosis: 61
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