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Are you in a multiple myeloma clinical trial?
I am wondering how many people are currently participating in a clinical trial? Also, is it working?
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Are you in a multiple myeloma clinical trial?
Hi there,
I'm currently 18 months into the seven-year Millennium trial. 28 day cycles of Revlimid, dex, and a placebo or a new drug. It's a double blind trial, so no one knows who is on the drug or the placebo.
It's working, no problem. M-spike back to 0, and all other bloods back in the normal range. On bone marrow biopsy there is still some small sign of multiple myeloma.
I was originally diagnosed in 2009, treated with thalidomide for 6 months, then had a stem cell transplant which gave me 19 months remission. I started the trial in 2013. The trial drugs do have tedious, and often very unwelcome, side effects, though I am able to work full time.
I'm currently 18 months into the seven-year Millennium trial. 28 day cycles of Revlimid, dex, and a placebo or a new drug. It's a double blind trial, so no one knows who is on the drug or the placebo.
It's working, no problem. M-spike back to 0, and all other bloods back in the normal range. On bone marrow biopsy there is still some small sign of multiple myeloma.
I was originally diagnosed in 2009, treated with thalidomide for 6 months, then had a stem cell transplant which gave me 19 months remission. I started the trial in 2013. The trial drugs do have tedious, and often very unwelcome, side effects, though I am able to work full time.
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kefrewin - Name: Karen Frewin NZ
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 53
Re: Are you in a multiple myeloma clinical trial?
Hi Karen, Do you mind sharing what Millennium drug is on the trial? Is it an oral version of Velcade? Best wishes with the trial. It sounds like it is working well, whether or not you are taking the placebo or the trial drug!
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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: Are you in a multiple myeloma clinical trial?
Hi,
I am currently on my second trial, called LenaRIC, in the UK. Trial is testing if using lenalidomide (Revlimid) in the first 12 months following a reduced intensity conditioning (RIC) allogeneic (donor) stem cell transplant reduces the relapse rate.
I'm at about 7 months post transplant and haven't relapsed, but difficult to say whether or not it is working.
I believe there is a much greater uptake of clinical trial participation in the UK and Europe compared to US.
Laura
I am currently on my second trial, called LenaRIC, in the UK. Trial is testing if using lenalidomide (Revlimid) in the first 12 months following a reduced intensity conditioning (RIC) allogeneic (donor) stem cell transplant reduces the relapse rate.
I'm at about 7 months post transplant and haven't relapsed, but difficult to say whether or not it is working.
I believe there is a much greater uptake of clinical trial participation in the UK and Europe compared to US.
Laura
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LauraScot - Name: Laura
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 47
Re: Are you in a multiple myeloma clinical trial?
Hi blair77,
I am in NCT01208662 "Randomized Trial of Lenalidomide, Bortezomib, Dexamethasone vs High-Dose Treatment With SCT in multiple myeloma Patients up to Age 65." The protocol of the trial has been guiding the general course of my treatment since I started almost 2 years ago. My medical team has made lots of individualized adjustments in my treatment as we've gone along, though, within the guidelines of the trial.
The basic goal of this trial is to assess whether there is still benefit to receiving an early auto SCT in this age of novel agents like Revlimid (lenalidomide) and Velcade (bortezomib). Quite a few myeloma centers in the US and France are participating.
No results from the trial have been released yet. I was told unofficially that the French have some interim results, but that those are being held until US interim results are ready too.
I was randomized into the SCT arm of the study. I have been very fortunate, achieving sCR and MRD negative status in July 2014. Plans are to continue with the Revlimid maintenance portion of the trial for 2 years, which will end for me in September of this year. Of course, as with all clinical trials, either I or my medical team can discontinue my participation at any time.
I also participated in a much smaller clinical trial, NCT01811862 "Acupuncture for Symptom Control in Hematopoietic Stem Cell Transplantation Patients." While blindfolded, so I would not know which arm of the trial I was in, I received acupuncture or "sham acupuncture" treatment several times during my hospital stay after my SCT. It was my favorite part of the whole SCT experience. Very relaxing! I was sure I was in the acupuncture arm of the trial, but at the end of the trial I found out I was in the sham arm. Shows what I know.
And I would be remiss if I didn't use this as a chance to say, yet again, how important clinical trials are to finding a cure for multiple myeloma and other cancers. Only 3% of eligible cancer patients participate in clinical trials, though. I feel like my participation in these trials (especially the large one) has been a big win-win. I've gotten truly state-of-the-art care, and I feel like I've been able to contribute in my small way to moving the ball forward toward a cure. If you are offered an opportunity to participate in a clinical trial, please consider it.
Mike
I am in NCT01208662 "Randomized Trial of Lenalidomide, Bortezomib, Dexamethasone vs High-Dose Treatment With SCT in multiple myeloma Patients up to Age 65." The protocol of the trial has been guiding the general course of my treatment since I started almost 2 years ago. My medical team has made lots of individualized adjustments in my treatment as we've gone along, though, within the guidelines of the trial.
The basic goal of this trial is to assess whether there is still benefit to receiving an early auto SCT in this age of novel agents like Revlimid (lenalidomide) and Velcade (bortezomib). Quite a few myeloma centers in the US and France are participating.
No results from the trial have been released yet. I was told unofficially that the French have some interim results, but that those are being held until US interim results are ready too.
I was randomized into the SCT arm of the study. I have been very fortunate, achieving sCR and MRD negative status in July 2014. Plans are to continue with the Revlimid maintenance portion of the trial for 2 years, which will end for me in September of this year. Of course, as with all clinical trials, either I or my medical team can discontinue my participation at any time.
I also participated in a much smaller clinical trial, NCT01811862 "Acupuncture for Symptom Control in Hematopoietic Stem Cell Transplantation Patients." While blindfolded, so I would not know which arm of the trial I was in, I received acupuncture or "sham acupuncture" treatment several times during my hospital stay after my SCT. It was my favorite part of the whole SCT experience. Very relaxing! I was sure I was in the acupuncture arm of the trial, but at the end of the trial I found out I was in the sham arm. Shows what I know.
And I would be remiss if I didn't use this as a chance to say, yet again, how important clinical trials are to finding a cure for multiple myeloma and other cancers. Only 3% of eligible cancer patients participate in clinical trials, though. I feel like my participation in these trials (especially the large one) has been a big win-win. I've gotten truly state-of-the-art care, and I feel like I've been able to contribute in my small way to moving the ball forward toward a cure. If you are offered an opportunity to participate in a clinical trial, please consider it.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Are you in a multiple myeloma clinical trial?
My husband is participating in a trial of RVD (Revlimid, Velcade, dexamethasone) + panobinostat in newly diagnosed myeloma patients. He's just completed the third of four cycles and has had a great response. All numbers are in the normal range except for hemoglobin - he's currently at 12.8, but that's a huge improvement, as he was 9.1 when the trial started.
Obviously, we don't know that the panobinostat is helping, since RVD seems to get a really good response anyway with newly diagnosed patients. But, so far, so good.
Obviously, we don't know that the panobinostat is helping, since RVD seems to get a really good response anyway with newly diagnosed patients. But, so far, so good.
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reece93 - Name: reece93
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 2014
- Age at diagnosis: 57
Re: Are you in a multiple myeloma clinical trial?
I participated in a trial of conditioning chemo for my stem cell transplant involving a two-drug combo. Instead of just receiving melphalan, I also received bendamustine on the second day. Supposedly, they are trying to determine if the two drugs provide a deeper response.
I haven't had my 100-day checkup yet, so I cannot report on the results. However, going into transplant, I had a clean bone marrow and PET scan. Electrophoresis was still showing an IgA band; I am light chain, so there was no M-spike; light chains and ratio were normal.
So far, blood work has been pretty good; very low light chains (in the 6 range) and also the appearance of oligiclonal banding in the last two blood tests. My hemoglobin is still low, however (9.5 -10.5). The doctor doesn't seem too concerned, but I'm wondering if it means that the myeloma is still active despite blood work. Anyone have experience with this?
I haven't had my 100-day checkup yet, so I cannot report on the results. However, going into transplant, I had a clean bone marrow and PET scan. Electrophoresis was still showing an IgA band; I am light chain, so there was no M-spike; light chains and ratio were normal.
So far, blood work has been pretty good; very low light chains (in the 6 range) and also the appearance of oligiclonal banding in the last two blood tests. My hemoglobin is still low, however (9.5 -10.5). The doctor doesn't seem too concerned, but I'm wondering if it means that the myeloma is still active despite blood work. Anyone have experience with this?
Re: Are you in a multiple myeloma clinical trial?
Hi Nancy
Regarding the Millennium trial drug and the 7-year trial; no one knows what the experimental drug is, other than the people running the trial. My specialist doesn't know and apparently we will be told at the end of the trial (if we're still around). It goes by the name MLN9708 4 mg / placebo cap, and is taken on days 1, 8 and 15 of the 28 day cycle.
Regarding the Millennium trial drug and the 7-year trial; no one knows what the experimental drug is, other than the people running the trial. My specialist doesn't know and apparently we will be told at the end of the trial (if we're still around). It goes by the name MLN9708 4 mg / placebo cap, and is taken on days 1, 8 and 15 of the 28 day cycle.
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karen frewin
Re: Are you in a multiple myeloma clinical trial?
Hi Nancy,
I've just done a web search on the Millennium trial drug, and it looks like it is oral Velcade. Previously, there was no online information available, so things have clearly changed. At least I know now what I'm on, or not (lol), so thanks for your enquiry. I'll tell my specialist next Friday - and probably find out he knew all along.
I've just done a web search on the Millennium trial drug, and it looks like it is oral Velcade. Previously, there was no online information available, so things have clearly changed. At least I know now what I'm on, or not (lol), so thanks for your enquiry. I'll tell my specialist next Friday - and probably find out he knew all along.
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karen frewin
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