I had my autologous stem cell transplant in November 2017. I was concerned because both my M-Spike and my involved free light chain level increased during the time between stopping treatment in early October and the actual transplant. My M-spike rose from 0.38 to 1.5 g/dL (3.8 to 15 g/l), and my kappa free light chain level also increased.
I mentioned my concerns to my hematologist-oncologist at my first check up after I was released to come home, and he did an serum protein electrophoresis (SPEP) to check where we are now. Not sure if it's good news, but the M-spike has reduced slightly from 1.5 to 1.3 g/dL.
I'm not even 2 months post transplant and know from reading other posts on this forum that the numbers can change even past the 100 day check to re-stage the disease burden and the efficacy of the transplant.
I had a pretty smooth transplant experience but still wouldn't want to go through it again any time soon. I'm afraid they might recommend doing another in March or April and I'd rather not at this point. So I'm trying to determine if my experience is common or unusual. I think it's too early to tell if my transplant was successful but sure could use some good news.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Should I be scared, or just patient, re: SCT response?
All I can say is that my M-spike continued to change over the course of six months or so after the transplant. I would go with being patient at this point.
If the stem cell transplant does not do the job, then I'd be surprised if your doctors recommended another one. From what I've read, a second transplant is generally done only if the first one puts the patient in remission for at least 18 months or so. I would think that they'd want to try you on some of the newer drugs (which can work quite well) rather than go with another transplant.
Whatever the treatment course, I hope it ends up working well for you.
If the stem cell transplant does not do the job, then I'd be surprised if your doctors recommended another one. From what I've read, a second transplant is generally done only if the first one puts the patient in remission for at least 18 months or so. I would think that they'd want to try you on some of the newer drugs (which can work quite well) rather than go with another transplant.
Whatever the treatment course, I hope it ends up working well for you.
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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: Should I be scared, or just patient, re: SCT response?
Whereas I can understand your concern for the results you have received following your stem cell transplant, I myself have had an M-spike of more than double this amount during the past two years and I would never have known had it not been for my routine blood tests. The real reduction came when I started the Imnovid (Pomalyst, pomalidomide) treatment, which slashed my 35 g/L (3.5 g/dL) M-spike by almost 80%. Over the past year my M-spike has fallen by very small amounts each month, hardly noticeable month by month, but when compared with the figures from one year ago, a 20% reduction has been achieved.
I am sure everybody hopes that you will soon have encouraging results and it would be wonderful if you could post an update.
Best Wishes, Victor L
I am sure everybody hopes that you will soon have encouraging results and it would be wonderful if you could post an update.
Best Wishes, Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Should I be scared, or just patient, re: SCT response?
Update (per Victor's request. thanks Victor).
I've had my results from my 100 day post-transplant evaluation, and it's mostly good news I think.
I'm still anemic and have low WBC but the thinking is that is due to the antibiotic dapsone. I was on dapsone to prevent pneumocystis (I'm allergic to Bactrim). I'm changing to a different antibiotic until May.
My M-spike was 1.5 g/dL (15 g/l) prior to the stem cell transplant (it was 0.38 at the end of induction in early October but rose quickly to 1.5 in the time between ending induction and transplant in mid November). Since the transplant, my M-spike has dropped to 1.0, my involved light chain (kappa) has dropped from 71 to 41, bone marrow at 7% monoclonal plasma cells, no abnormal protein in urine, no evidence of active myeloma on PET scan, all other lab work good. It seems as though as things are moving in the right direction while I'm currently not on any myeloma medications.
I expected to start a maintenance protocol of 10 mg Revlimid 21/28 days and maybe some dexamethasone. When I met with my specialist she also suggested maybe adding some Velcade as well.
I'm torn between wanting to see if my numbers continue to drop without additional medication as my immune system reconstitutes, or jumping full on into a more aggressive consolidation / maintenance schedule. Since my appointment earlier this week, my myeloma doc called and said she's actually recommending that I start Kyprolis, Revlimid, and dexamethasone (KRD) for a couple of months, and then move to maintenance. She feels I may be refractory to Velcade already. I had a good response to RVD, but my numbers bounced back up immediately following any break in treatment. It seems that despite my low level of disease when first diagnosed a year ago, along with my good FISH results, my myeloma is more aggressive than they would expect.
I'd appreciate any opinions, concerns, or encouragement other forum members may have regarding moving to consolidation (KRD) and then maintenance. I feel good and more like my old self everyday, so I'm not looking forward to the fatigue and other potential side effects, but I'd sure like to beat everything back to 0 and normal blood work for as long as possible.
I've had my results from my 100 day post-transplant evaluation, and it's mostly good news I think.
I'm still anemic and have low WBC but the thinking is that is due to the antibiotic dapsone. I was on dapsone to prevent pneumocystis (I'm allergic to Bactrim). I'm changing to a different antibiotic until May.
My M-spike was 1.5 g/dL (15 g/l) prior to the stem cell transplant (it was 0.38 at the end of induction in early October but rose quickly to 1.5 in the time between ending induction and transplant in mid November). Since the transplant, my M-spike has dropped to 1.0, my involved light chain (kappa) has dropped from 71 to 41, bone marrow at 7% monoclonal plasma cells, no abnormal protein in urine, no evidence of active myeloma on PET scan, all other lab work good. It seems as though as things are moving in the right direction while I'm currently not on any myeloma medications.
I expected to start a maintenance protocol of 10 mg Revlimid 21/28 days and maybe some dexamethasone. When I met with my specialist she also suggested maybe adding some Velcade as well.
I'm torn between wanting to see if my numbers continue to drop without additional medication as my immune system reconstitutes, or jumping full on into a more aggressive consolidation / maintenance schedule. Since my appointment earlier this week, my myeloma doc called and said she's actually recommending that I start Kyprolis, Revlimid, and dexamethasone (KRD) for a couple of months, and then move to maintenance. She feels I may be refractory to Velcade already. I had a good response to RVD, but my numbers bounced back up immediately following any break in treatment. It seems that despite my low level of disease when first diagnosed a year ago, along with my good FISH results, my myeloma is more aggressive than they would expect.
I'd appreciate any opinions, concerns, or encouragement other forum members may have regarding moving to consolidation (KRD) and then maintenance. I feel good and more like my old self everyday, so I'm not looking forward to the fatigue and other potential side effects, but I'd sure like to beat everything back to 0 and normal blood work for as long as possible.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Should I be scared, or just patient, re: SCT response?
If you go the consolidation route, I would suggest making absolutely sure that you've become refractory to Velcade before trying a regimen that includes Kyprolis. I make the suggestion for several reasons.
First, I'm a big believer in exhausting a medication's efficacy before moving on to something different. You only have so many tools in your myeloma tool chest, and the more you can do with each one, the longer you're likely to live. Why give up on a tool unless you're sure it's no longer effective?
Second, I'd want to try Velcade to avoid the potential cardiac side effects of Kyprolis. As I'm sure you know, the cardiac side effects of Kyprolis are not common, and they're often transient, but they also can be very serious. Here are a couple of links on the issue:
https://myelomabeacon.org/forum/kyprolis-carfilzomib-heart-related-side-effects-t9572.html
https://myelomabeacon.org/forum/kyprolis-carfilzomib-and-the-heart-t9152.html
Third, there's another potentially very serious side effect of Kyprolis that I'd want to avoid unless absolutely necessary: thrombotic microangioapathy (TMA). It doesn't get discussed a lot, partly because it's a rare side effect, but it's my understanding that TMA is more likely to occur in the post-transplant setting, and it's very serious if it happens. You can read more about Kyprolis and TMA here:
https://myelomabeacon.org/news/2016/03/30/myeloma-morning-cometriq-kyprolis-thrombotic-microangiopathy/
Finally, if for some reason you do decide to go ahead with a Kyprolis-based consolidation regimen, try to make sure it's not a high-dose Kyprolis regimen. Most of the studies I've seen that have looked into the issue have shown that higher doses of Kyprolis are more likely to cause the serious side effects that can be caused by the drug.
Good luck!
First, I'm a big believer in exhausting a medication's efficacy before moving on to something different. You only have so many tools in your myeloma tool chest, and the more you can do with each one, the longer you're likely to live. Why give up on a tool unless you're sure it's no longer effective?
Second, I'd want to try Velcade to avoid the potential cardiac side effects of Kyprolis. As I'm sure you know, the cardiac side effects of Kyprolis are not common, and they're often transient, but they also can be very serious. Here are a couple of links on the issue:
https://myelomabeacon.org/forum/kyprolis-carfilzomib-heart-related-side-effects-t9572.html
https://myelomabeacon.org/forum/kyprolis-carfilzomib-and-the-heart-t9152.html
Third, there's another potentially very serious side effect of Kyprolis that I'd want to avoid unless absolutely necessary: thrombotic microangioapathy (TMA). It doesn't get discussed a lot, partly because it's a rare side effect, but it's my understanding that TMA is more likely to occur in the post-transplant setting, and it's very serious if it happens. You can read more about Kyprolis and TMA here:
https://myelomabeacon.org/news/2016/03/30/myeloma-morning-cometriq-kyprolis-thrombotic-microangiopathy/
Finally, if for some reason you do decide to go ahead with a Kyprolis-based consolidation regimen, try to make sure it's not a high-dose Kyprolis regimen. Most of the studies I've seen that have looked into the issue have shown that higher doses of Kyprolis are more likely to cause the serious side effects that can be caused by the drug.
Good luck!
Re: Should I be scared, or just patient, re: SCT response?
Follow up:
I'm about 140 days post autologous stem cell transplant. Based on my most recent blood work, bone biopsy, and PET scan, I have no evidence of active myeloma. I'm still anemic, but improving. My M-spike, which was of concern, has fallen from 1.01 g/dL (10.1 g/l) post transplant to 0.86 g/dL (8.6 g/l) with no treatment since the transplant.
I did start a consolidation of Kyprolis, Revlimid, and dexamethasone (KRD) for 2 months in the hope of deepening the response, to be followed by Revlimid (10 mg.) and dex (40 mg) 21/28 as maintenance going forward.
I did raise the issue of starting Kyprolis before determining if I was actually refectory to Velcade and was assured that I could use either drug again in the future if needed.
My remaining concern is my free light chain numbers. On the positive side, they are lower than they've ever been, and neither my hematologist-oncologist or my myeloma specialist seem concerned. I also had the flu and was treated with Tamilflu (oseltamivir) in late March.
Most recent numbers are:
KFLC-SPA 31.10 mg/dL 0.33-1.94
LFLC-SPA 0.53 mg/dL 0.57-2.63
K/L ratio-SPA 58.24 0.26-1.65
I've tried to wrap my head around what the free light chain numbers means specifically in my situation but still don't quite get it. 24-hour urine tests indicate everything is normal. Liver and kidney function tests are all good. The running joke with my doctors is that I'm otherwise young and healthy.
So far, no bad side effects from the KRD treatment, I feel good, and I'm looking forward to getting on with my life until something indicates otherwise.
I'm about 140 days post autologous stem cell transplant. Based on my most recent blood work, bone biopsy, and PET scan, I have no evidence of active myeloma. I'm still anemic, but improving. My M-spike, which was of concern, has fallen from 1.01 g/dL (10.1 g/l) post transplant to 0.86 g/dL (8.6 g/l) with no treatment since the transplant.
I did start a consolidation of Kyprolis, Revlimid, and dexamethasone (KRD) for 2 months in the hope of deepening the response, to be followed by Revlimid (10 mg.) and dex (40 mg) 21/28 as maintenance going forward.
I did raise the issue of starting Kyprolis before determining if I was actually refectory to Velcade and was assured that I could use either drug again in the future if needed.
My remaining concern is my free light chain numbers. On the positive side, they are lower than they've ever been, and neither my hematologist-oncologist or my myeloma specialist seem concerned. I also had the flu and was treated with Tamilflu (oseltamivir) in late March.
Most recent numbers are:
KFLC-SPA 31.10 mg/dL 0.33-1.94
LFLC-SPA 0.53 mg/dL 0.57-2.63
K/L ratio-SPA 58.24 0.26-1.65
I've tried to wrap my head around what the free light chain numbers means specifically in my situation but still don't quite get it. 24-hour urine tests indicate everything is normal. Liver and kidney function tests are all good. The running joke with my doctors is that I'm otherwise young and healthy.
So far, no bad side effects from the KRD treatment, I feel good, and I'm looking forward to getting on with my life until something indicates otherwise.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Should I be scared, or just patient, re: SCT response?
Follow-up:
I guess it all worked out.
I started this thread with a question about whether I should be scared or just patient. Then in April, I was about 120 days past my autologous stem cell transplant (which took place on November 15, 2017) and I was feeling well but my M-spike was still at 0.86 g/dL, or 8.6 g/l (down from 1.5 g/dL just prior to transplant). I was scared that maybe things didn't work out.
As you can see, everyone was very supportive and as others have commented here, my M-spike could continue to fall. I completed 3 rounds of Kyprolis, Revlimid, and dexamethasone (KRD) consolidation, and I've been on maintenance of 10 mg Revlimid (14 days on, 7 days off) since. While I still have a small M-spike and my free light chain results are not quite in range, I've been stable since June, feel great, and my doctor is not concerned.
My latest numbers as of October 22, 2108 are:
M-spike: 0.24 g/dL
All of these are within normal range:
Albumin 4.58 g/dL
Alpha1 0.18 g/dL
Alpha 2 0.69 g/dL
Beta 1 0.44 g/dL
Beta 2 0.20 g/dL
Gamma 0.71 g/dL
Total Protein 6.8
Kappa light chain (serum) 5.91 mg/dL (0.33 - 1.94)
Lambda light chain 0.74 mg/dL (0.57 - 2.63)
Kappa/lambda ratio 8.0
All other blood work is within normal range with the exception of slightly suppressed white blood cells and platelets at the end of my 14 days on Revlimid. I may never get to zero on my M-spike, or achieve minimal residual disease (MRD) negativity, but I am pleased with these results and hope to stay stable for a very long time.
The irony is that I am probably healthier now than I've been in the last 15 years. I lost weight, my knees work, I've been kayaking, golfing, and otherwise had a great summer. My energy is good, and it's nice to be able to plan on all the things we wanted to do in retirement.
I'm sharing this in the hopes that others who are dealing with difficulties with induction, transplant, or maintenance can be hopeful that things can get much much better. As always, everyone's experience is different, but it was very helpful to me when I was able to read about good outcomes on this forum, and when the doctors actually said positive things to me.
I guess it all worked out.
I started this thread with a question about whether I should be scared or just patient. Then in April, I was about 120 days past my autologous stem cell transplant (which took place on November 15, 2017) and I was feeling well but my M-spike was still at 0.86 g/dL, or 8.6 g/l (down from 1.5 g/dL just prior to transplant). I was scared that maybe things didn't work out.
As you can see, everyone was very supportive and as others have commented here, my M-spike could continue to fall. I completed 3 rounds of Kyprolis, Revlimid, and dexamethasone (KRD) consolidation, and I've been on maintenance of 10 mg Revlimid (14 days on, 7 days off) since. While I still have a small M-spike and my free light chain results are not quite in range, I've been stable since June, feel great, and my doctor is not concerned.
My latest numbers as of October 22, 2108 are:
M-spike: 0.24 g/dL
All of these are within normal range:
Albumin 4.58 g/dL
Alpha1 0.18 g/dL
Alpha 2 0.69 g/dL
Beta 1 0.44 g/dL
Beta 2 0.20 g/dL
Gamma 0.71 g/dL
Total Protein 6.8
Kappa light chain (serum) 5.91 mg/dL (0.33 - 1.94)
Lambda light chain 0.74 mg/dL (0.57 - 2.63)
Kappa/lambda ratio 8.0
All other blood work is within normal range with the exception of slightly suppressed white blood cells and platelets at the end of my 14 days on Revlimid. I may never get to zero on my M-spike, or achieve minimal residual disease (MRD) negativity, but I am pleased with these results and hope to stay stable for a very long time.
The irony is that I am probably healthier now than I've been in the last 15 years. I lost weight, my knees work, I've been kayaking, golfing, and otherwise had a great summer. My energy is good, and it's nice to be able to plan on all the things we wanted to do in retirement.
I'm sharing this in the hopes that others who are dealing with difficulties with induction, transplant, or maintenance can be hopeful that things can get much much better. As always, everyone's experience is different, but it was very helpful to me when I was able to read about good outcomes on this forum, and when the doctors actually said positive things to me.
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GoDucks - Name: GoDucks
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March, 2017
- Age at diagnosis: 61
Re: Should I be scared, or just patient, re: SCT response?
I just want to echo GoDucks on the importance to me of reading positive stories here.
It's about 5 months since my autologous stem cell transplant (ASCT), and I feel great. My last set of bloodwork showed no M-spike and all my light chains were normal. My standard bloodwork is all good as well, including normal hemoglobin for the first time in a long time. My last biopsy was in March, before the stem cell transplant, and that was completely clear. I'm currently on Velcade every two weeks and Zometa every four weeks.
As I navigate through my post-ASCT life with this disease, positive stories, including stories of patience like GoDucks, have been central to me keeping my optimism and my determination to do whatever it takes to beat this thing into long-term remission. It's a marathon, not a sprint. I don't get up and workout at 6:15 a.m. every day because it makes me happy!
I'm glad to see how great GoDucks is doing and I hope that my own experience is helpful to others.
It's about 5 months since my autologous stem cell transplant (ASCT), and I feel great. My last set of bloodwork showed no M-spike and all my light chains were normal. My standard bloodwork is all good as well, including normal hemoglobin for the first time in a long time. My last biopsy was in March, before the stem cell transplant, and that was completely clear. I'm currently on Velcade every two weeks and Zometa every four weeks.
As I navigate through my post-ASCT life with this disease, positive stories, including stories of patience like GoDucks, have been central to me keeping my optimism and my determination to do whatever it takes to beat this thing into long-term remission. It's a marathon, not a sprint. I don't get up and workout at 6:15 a.m. every day because it makes me happy!
I'm glad to see how great GoDucks is doing and I hope that my own experience is helpful to others.
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
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