Has anyone here gone into remission without having a stem cell transplant?
I have been reading so much here I believe I am on overload. As I write this, tears are in my eyes. I know I will get past this, but the initial shock, as I am sure everyone has experienced, is just beyond words and the emotions I can stand.
Good news anyone?
Forums
Re: Remission without a stem cell transplant?
I have been in very good partial remission for a year and 9 months. No transplant. I have been on VRD (Velcade, Revlimid, dexamethasone) for two years. I do not know if I will ever do a transplant.
You just keep your chin up. Your new normal doesn't have to be all bad.
Marvin
You just keep your chin up. Your new normal doesn't have to be all bad.
Marvin
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gmarv - Name: marvin
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: aug.2012
- Age at diagnosis: 57
Re: Remission without a stem cell transplant?
My husband has been in remission for 6 months or more. No transplant. Cytoxan and Velcade only for 4.5 cycles. And about 6 monthly treatments of Zometa!
Re: Remission without a stem cell transplant?
My daughter was in remission after 4 months of Velcade and dex. Because of her age, 33, at diagnosis, a transplant was recommended. She stayed in remission only 18 months after transplant. Now she is on carfilzomib (Kyprolis), hopefully going back in remission.
I'm feeling like if they suggest another transplant, she should try a while on drugs, but it is not my choice to make.
I'm feeling like if they suggest another transplant, she should try a while on drugs, but it is not my choice to make.
Re: Remission without a stem cell transplant?
Hi Mildred,
I know it's very scary to get this diagnosis, or to be a spouse or child of someone facing this disease. I think you will be encouraged by many of the stories you'll read here on the Beacon website. While many patients elect to have transplants, there are also many who chose not to for various reasons.
When my husband was newly diagnosed in 2011, he had a M-spike of either 4.9 or 5.1 g/dL (49 or 51 g/L), and, based on the two bone marrow biopsies done at different labs, had a bone marrow plasma cell percentage of 83-85%.
He joined a clinical study and received Kyprolis, Revlimid, and dex. He achieved a very good partial response the first month, and his M spike continued to drop over the 2 years he was in the study. He's still in remission, with no detectable M protein in bone marrow biopsy, labs, or flow cytometry. He takes 15 mg Revlimid for maintenance now.
My husband had stem cells collected and they're in storage at the University of Michigan -- just in case. He didn't want to have a transplant unless there was no other alternative. He's experienced many complications from the multiple myeloma, so he's had his challenges like others with multiple myeloma do. But now things are on an even keel and going very well.
Best wishes,
Chris M.
I know it's very scary to get this diagnosis, or to be a spouse or child of someone facing this disease. I think you will be encouraged by many of the stories you'll read here on the Beacon website. While many patients elect to have transplants, there are also many who chose not to for various reasons.
When my husband was newly diagnosed in 2011, he had a M-spike of either 4.9 or 5.1 g/dL (49 or 51 g/L), and, based on the two bone marrow biopsies done at different labs, had a bone marrow plasma cell percentage of 83-85%.
He joined a clinical study and received Kyprolis, Revlimid, and dex. He achieved a very good partial response the first month, and his M spike continued to drop over the 2 years he was in the study. He's still in remission, with no detectable M protein in bone marrow biopsy, labs, or flow cytometry. He takes 15 mg Revlimid for maintenance now.
My husband had stem cells collected and they're in storage at the University of Michigan -- just in case. He didn't want to have a transplant unless there was no other alternative. He's experienced many complications from the multiple myeloma, so he's had his challenges like others with multiple myeloma do. But now things are on an even keel and going very well.
Best wishes,
Chris M.
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Chris M.
Re: Remission without a stem cell transplant?
Many, many patients go into complete remission – if not stringent complete response – without a transplant. It can happen with 3 drugs, such as Revlimid plus Velcade plus dexamathasone; or with just 2 drugs, such as Revlimid plus dexamethasone. And other combinations.
Perhaps the more pertinent question is whether patients can achieve long-term stable disease without a transplant – regardless of whether they reach complete remission. Here, as one example, I find it encouraging - if I understand the data - that the median time to progression is more than five years for standard risk patients being treated with the combination of the antibiotic Biaxin plus Revlimid plus dexamethasone (BiRd). Moreover, nearly 40 percent of BiRd patients attain a CR within 2 years, and more than 40 percent of all patients still appear stable after about 8 years. See, e.g.,
A Rossi et al, "BiRd (clarithromycin, lenalidomide, dexamethasone): an update on long-term lenalidomide therapy in previously untreated patients with multiple myeloma," Blood, 14 March 2013, 121:11 (full text pdf)
And in a different study, patients who were able to stay on Revlimid plus dexamethasone for at least three years (and have achieved at least a very good partial response) apparently were able to remain stable without ANY subsequent drugs for an additional 5 and a half more years.
Bottom line: There are many non-transplant options that can be effective and result in CR and long-term disease control, but their applicability will likely depend on the risk status of the patients and, of course, how well they respond.
P.S. A transplant is actually one drug - an otherwise lethal dose of melphalan that is only NOT lethal because the patients get a replacement of the immune stem cells destroyed by melphalan. Why melphalan is accorded such a high status is unclear to me. I know it is powerful, and it does kill replicating or would-be replicating cells, but wouldn't a lower chronic dose of melphalan (or other drugs) achieve the same?
Perhaps the more pertinent question is whether patients can achieve long-term stable disease without a transplant – regardless of whether they reach complete remission. Here, as one example, I find it encouraging - if I understand the data - that the median time to progression is more than five years for standard risk patients being treated with the combination of the antibiotic Biaxin plus Revlimid plus dexamethasone (BiRd). Moreover, nearly 40 percent of BiRd patients attain a CR within 2 years, and more than 40 percent of all patients still appear stable after about 8 years. See, e.g.,
A Rossi et al, "BiRd (clarithromycin, lenalidomide, dexamethasone): an update on long-term lenalidomide therapy in previously untreated patients with multiple myeloma," Blood, 14 March 2013, 121:11 (full text pdf)
And in a different study, patients who were able to stay on Revlimid plus dexamethasone for at least three years (and have achieved at least a very good partial response) apparently were able to remain stable without ANY subsequent drugs for an additional 5 and a half more years.
Bottom line: There are many non-transplant options that can be effective and result in CR and long-term disease control, but their applicability will likely depend on the risk status of the patients and, of course, how well they respond.
P.S. A transplant is actually one drug - an otherwise lethal dose of melphalan that is only NOT lethal because the patients get a replacement of the immune stem cells destroyed by melphalan. Why melphalan is accorded such a high status is unclear to me. I know it is powerful, and it does kill replicating or would-be replicating cells, but wouldn't a lower chronic dose of melphalan (or other drugs) achieve the same?
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JiminSD
Re: Remission without a stem cell transplant?
Hi JiminSD,
In your posting, you wrote "And in a different study, patients who were able to stay on Revlimid plus dexamethasone for at least three years (and have achieved at least a very good partial response) apparently were able to remain stable without ANY subsequent drugs for an additional 5 and a half more years."
Do you have a link to this study?
Also, you wrote: "Here, as one example, I find it encouraging - if I understand the data - that the median time to progression is more than five years for standard risk patients being treated with the combination of the antibiotic Biaxin plus Revlimid plus dexamethasone (BiRd). Moreover, nearly 40 percent of BiRd patients attain a CR within 2 years, and more than 40 percent of all patients still appear stable after about 8 years."
Here is what I read in that study.
33 out of 72 have done a transplant (45.8%). Only 10 out of 72 are still on lenalidomide (13.8%). 65% needed 2nd line therapy. Median PFS is only 49 months. If anything, this study shows how important proteasome inhibitors are in my opinion, as I do not view these results as very impressive.
Patients on never ending cycles of lenalidomide also have to put up with continuous side effects while those that get long therapy breaks can have health related quality of life on par with the general population in the long term.
Mark
In your posting, you wrote "And in a different study, patients who were able to stay on Revlimid plus dexamethasone for at least three years (and have achieved at least a very good partial response) apparently were able to remain stable without ANY subsequent drugs for an additional 5 and a half more years."
Do you have a link to this study?
Also, you wrote: "Here, as one example, I find it encouraging - if I understand the data - that the median time to progression is more than five years for standard risk patients being treated with the combination of the antibiotic Biaxin plus Revlimid plus dexamethasone (BiRd). Moreover, nearly 40 percent of BiRd patients attain a CR within 2 years, and more than 40 percent of all patients still appear stable after about 8 years."
Here is what I read in that study.
Seventy-two patients enrolled on the BiRd study. With a median follow-up of 6.6 years, 10 patients remain on lenalidomide (3 with dexamethasone), and 47 have received second-line therapy. Thirty-three patients have now undergone ASCT, thereafter followed by active observation alone. Median PFS was 49 months, and median EFS was 47 months. While the median OS has not been reached, 5-year OS was 75.2%. Post hoc analysis by transplant status showed no effect on PFS or OS, indicating that the benefit of lenalidomide maintenance exists even in the absence of transplantation; however, formal conclusions regarding ASCT should be addressed by prospective randomized studies. Patients who underwent ASCT received a median of 10 cycles (range, 2-36) of BiRd, compared with 26 cycles (range, 3-93) for those on continuous therapy. Eleven patients (5 BiRd, 6 ASCT) had high-risk cytogenetics, which did not significantly affect PFS or OS, although a trend is seen in OS.
33 out of 72 have done a transplant (45.8%). Only 10 out of 72 are still on lenalidomide (13.8%). 65% needed 2nd line therapy. Median PFS is only 49 months. If anything, this study shows how important proteasome inhibitors are in my opinion, as I do not view these results as very impressive.
Patients on never ending cycles of lenalidomide also have to put up with continuous side effects while those that get long therapy breaks can have health related quality of life on par with the general population in the long term.
Mark
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Mark11
Re: Remission without a stem cell transplant?
Hi Mark
A link to the first observation is found here.
"Researchers Take A Closer Look At Extended Revlimid-Dexamethasone Therapy For Newly Diagnosed Myeloma," The Myeloma Beacon, January 15, 2014.
As for the second point I made about PFS, if you look at the description of graph E, you will see that the median time of Progression-Free Survival for NO-TRANSPLANT patients is 60 months. (See below) Notably, this same Graph E shows a plateau at 60 months, with nearly 40 percent of patients still not progressing at about 90 months, leading to the expectation that these patients may still be without progression in 2014; this study was reported in 2011.
But I certainly agree that there are nuances here, including complexities of ASCT, second line therapy, and continuous Revlimid use. But at least in non-transplant (non-alkylating agent) patients, the risk of secondary malignancies is negligible with long-term use.
But I regard 60 months median PFS at 5 years as good. As a contrast, consider all the hoopla recently about the supposedly definitive study showing the benefits of transplant versus chemotherapy.
"[url=NEJM article on transplantation & Revlimid maintenance]NEJM article on transplantation & Revlimid maintenance[/url]," Beacon forum discussion started Sep 4, 2014.
This the key summary of the study kindly provided by the Beacon (see below). Note that PFS WITH both transplant and maintenance is still less than that with BiRD alone in the absence of transplant. I know it is comparing apples and oranges to some extent, but this underscores the difficulties facing patients (and doctors) when considering options.
Treatment sequence PFS 5-year OS
(months) (%)
1. Rd -> transplants -> Revlimid maintenance 54.7 78.4
2. Rd -> transplants -> no maintenance 37.4 66.6
3. Rd -> MPR -> Revlimid maintenance 34.2 70.2
4. Rd -> MPR -> no maintenance 21.8 58.7
Full Disclosure: I have been on BiRD for nearly 30 months. I have had no ill effects - although in my case, I probably have (knock wood) a very slow disease. I was diagnosed with an IgG kappa M-spike of around 5 g/dl (and normal FLCs) - with no overt effects apart from increasing anemia. Over two years, the M-spike has declined to a CR. In fact, my values for Hb, albumin and other markers are better than than they have ever been, suggesting that this treatment is still deepening my response.
Now, I would love to have someone tell me that NOW is the time to go after a cure, with another treatment, but there is no consensus or impetus to do so from my doctor. So what bugs me is knowing that, if a relapse comes, that is it: a series of increasingly less effective treatments leading to a downward spiral and death. That is the way I see it, and I don't like it. I am in my early 50s and ten years is not that acceptable.
I am not wedded to anything, and have no permanent attachment to any treatment modality. If there was a trial for immunotherapy or a therapeutic vaccine for treated patients in CR, I would jump in.
A link to the first observation is found here.
"Researchers Take A Closer Look At Extended Revlimid-Dexamethasone Therapy For Newly Diagnosed Myeloma," The Myeloma Beacon, January 15, 2014.
As for the second point I made about PFS, if you look at the description of graph E, you will see that the median time of Progression-Free Survival for NO-TRANSPLANT patients is 60 months. (See below) Notably, this same Graph E shows a plateau at 60 months, with nearly 40 percent of patients still not progressing at about 90 months, leading to the expectation that these patients may still be without progression in 2014; this study was reported in 2011.
But I certainly agree that there are nuances here, including complexities of ASCT, second line therapy, and continuous Revlimid use. But at least in non-transplant (non-alkylating agent) patients, the risk of secondary malignancies is negligible with long-term use.
But I regard 60 months median PFS at 5 years as good. As a contrast, consider all the hoopla recently about the supposedly definitive study showing the benefits of transplant versus chemotherapy.
"[url=NEJM article on transplantation & Revlimid maintenance]NEJM article on transplantation & Revlimid maintenance[/url]," Beacon forum discussion started Sep 4, 2014.
This the key summary of the study kindly provided by the Beacon (see below). Note that PFS WITH both transplant and maintenance is still less than that with BiRD alone in the absence of transplant. I know it is comparing apples and oranges to some extent, but this underscores the difficulties facing patients (and doctors) when considering options.
Treatment sequence PFS 5-year OS
(months) (%)
1. Rd -> transplants -> Revlimid maintenance 54.7 78.4
2. Rd -> transplants -> no maintenance 37.4 66.6
3. Rd -> MPR -> Revlimid maintenance 34.2 70.2
4. Rd -> MPR -> no maintenance 21.8 58.7
Full Disclosure: I have been on BiRD for nearly 30 months. I have had no ill effects - although in my case, I probably have (knock wood) a very slow disease. I was diagnosed with an IgG kappa M-spike of around 5 g/dl (and normal FLCs) - with no overt effects apart from increasing anemia. Over two years, the M-spike has declined to a CR. In fact, my values for Hb, albumin and other markers are better than than they have ever been, suggesting that this treatment is still deepening my response.
Now, I would love to have someone tell me that NOW is the time to go after a cure, with another treatment, but there is no consensus or impetus to do so from my doctor. So what bugs me is knowing that, if a relapse comes, that is it: a series of increasingly less effective treatments leading to a downward spiral and death. That is the way I see it, and I don't like it. I am in my early 50s and ten years is not that acceptable.
I am not wedded to anything, and have no permanent attachment to any treatment modality. If there was a trial for immunotherapy or a therapeutic vaccine for treated patients in CR, I would jump in.
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JiminSD
Re: Remission without a stem cell transplant?
I have had a very good response from Revlimid / dex for the last 7-8 months. Not a complete remission, but the numbers were very good. I had to stop Revlimid due to a really bad rash and swelling.
My local oncologist's plan while I was having such a good response from the Revlimid / dex was to get a second opinion for a transplant now, or at a later date, from a myeloma transplant / treatment center, which I did.
I went to USC Norris in southern California. Their idea was to get a stem cell harvest done as soon as possible and store the cells for future use. That idea just seemed right for me. I might not need the transplant right away, but the cells are there for me if I do. I believe that the cell collection and storage is key.
I like having all the ammo that I can stored up for this disease. SCT might not be the thing you want to do, but at least have the cells stored and have that SCT as another option as things may change.
I just started Velcade with dex. Again, the stem cell harvest is still first, but I will just have to see how the Velcade works out and go from there. Zometa will also start in about a month.
Hang in there. There are a lot of treatment options and a lot of support here on the Beacon.
Castaway
My local oncologist's plan while I was having such a good response from the Revlimid / dex was to get a second opinion for a transplant now, or at a later date, from a myeloma transplant / treatment center, which I did.
I went to USC Norris in southern California. Their idea was to get a stem cell harvest done as soon as possible and store the cells for future use. That idea just seemed right for me. I might not need the transplant right away, but the cells are there for me if I do. I believe that the cell collection and storage is key.
I like having all the ammo that I can stored up for this disease. SCT might not be the thing you want to do, but at least have the cells stored and have that SCT as another option as things may change.
I just started Velcade with dex. Again, the stem cell harvest is still first, but I will just have to see how the Velcade works out and go from there. Zometa will also start in about a month.
Hang in there. There are a lot of treatment options and a lot of support here on the Beacon.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Remission without a stem cell transplant?
MARK: In my previous post, I confused my citations and descriptions regarding my first point. My apologies.Here are the improved descriptions and cites
(1) In one study, patients (called "long-term responders") who were able to stay on REV plus DEX for at least three years had a median PFS of 102 months and an OS that has not been reached. But some of these patients appear to remain on therapy 3 years and far beyond.
"Researchers Take A Closer Look At Extended Revlimid-Dexamethasone Therapy For Newly Diagnosed Myeloma," The Myeloma Beacon, January 15, 2014.
(2) In a different NON-transplant study, patients who were on REV therapy for at least one year and who achieved at least a VPGR had a median PFS (apparently from the time of discontinuing Rev) of 48 months. Those who only had a partial response had a median PFS of only 14 months.
TV Kourelis et al, "Long-term disease control in patients with newly diagnosed multiple myeloma after suspension of lenalidomide therapy," American Journal of Hematology, March, 2014, 89:3, pp 302–305, (abstract only)
This second study, for course, would seem to rub against the current notion of continuous Revlimid therapy. A big advantage of taking a drug break, though, is not just reduced toxicity (as you have noted), but also a decreased likelihood of resistance upon relapse. Indeed, in this same study, all patients who progressed and were rechallenged with Revlimid and dex responded.
(1) In one study, patients (called "long-term responders") who were able to stay on REV plus DEX for at least three years had a median PFS of 102 months and an OS that has not been reached. But some of these patients appear to remain on therapy 3 years and far beyond.
"Researchers Take A Closer Look At Extended Revlimid-Dexamethasone Therapy For Newly Diagnosed Myeloma," The Myeloma Beacon, January 15, 2014.
(2) In a different NON-transplant study, patients who were on REV therapy for at least one year and who achieved at least a VPGR had a median PFS (apparently from the time of discontinuing Rev) of 48 months. Those who only had a partial response had a median PFS of only 14 months.
TV Kourelis et al, "Long-term disease control in patients with newly diagnosed multiple myeloma after suspension of lenalidomide therapy," American Journal of Hematology, March, 2014, 89:3, pp 302–305, (abstract only)
This second study, for course, would seem to rub against the current notion of continuous Revlimid therapy. A big advantage of taking a drug break, though, is not just reduced toxicity (as you have noted), but also a decreased likelihood of resistance upon relapse. Indeed, in this same study, all patients who progressed and were rechallenged with Revlimid and dex responded.
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JiminSD
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