Hi everyone,
I haven't posted in a while - have been enjoying a nice period of remission since my transplant in June 2014. I was on Velcade maintenance and was doing great until my kappa light chains suddenly popped up from the normal range. The doctor wanted to wait until the next scheduled blood work (I was going every 6 weeks) just to see, but they went up again. They're not "high," I believe they are around 4, but he doesn't want to let things get worse (and from my experience since diagnosis in 2010, I must say I've never seen them go down on their own, only up).
So he and the team at my hospital advise starting a new treatment regimen, which would be Empliciti (elotuzumab), dexamethasone (ugh) and Revlimid. I have taken dex and Revlimid before - didn't have many issues with the Revlimid at all, but had all the usual unpleasant side effects with the dex, so I'm not really happy about going back on it . He is starting me at 25 mg instead of 40 (once a week), which hopefully will do the trick without quite so many side effects.
I don't know much about elotuzumab except that it's very new and is promising. My doctor wants me to get it once a week for 8 weeks and then go to every other week. I'll get the dex infused at the same time and take the Revlimid at home. The hospital is handling getting the Revlimid from the manufacturer for me and says it will be mailed to me through the specialty pharmacy, so I'll have to find out how much the co-pay will be. Last time I took it it was through a study so I didn't have to pay, which was nice.
I must admit that I'm feeling a little down and discouraged - I'd been hoping to get a little longer remission out of the transplant. And I was enjoying only being on one drug as opposed to now having to be on three (plus all of the extra drugs they make you take for potential nausea, stomach issues, etc.) If anyone has input for me about the treatment regimen – efficacy, side effects, etc. – I'd love to hear your perspective!
Thanks and I wish everyone here success with their treatment as well.
Forums
Re: Empliciti, Revlimid & dexamethasone: what to expect?
Hi Karen,
Nice to see you back in the forum, but I'm sorry to hear that you have to start treatment again.
There have been a bunch of threads here in the forum about Empliciti (elotuzumab), including some where people have either asked questions similar to yours, or shared their experiences so far with elotuzumab. Here's a list of elotuzumab-related discussions I found by doing a forum search.
A couple of threads that may be of particular interest:
"My Empliciti (elotuzumab) treatment experience" (started Dec 14, 2015)
"New here - on elotuzumab, Revlimid, and dex" (started Jul 14, 2015)
I think that, overall, there isn't that much experience with Empliciti (elotuzumab) yet, just because it's still a rather new drug.
I hope your respond well to the treatment regimen, and that it gets you into remission and keeps you there for a long time. Please keep us posted on how things go with the treatment.
Nice to see you back in the forum, but I'm sorry to hear that you have to start treatment again.
There have been a bunch of threads here in the forum about Empliciti (elotuzumab), including some where people have either asked questions similar to yours, or shared their experiences so far with elotuzumab. Here's a list of elotuzumab-related discussions I found by doing a forum search.
A couple of threads that may be of particular interest:
"My Empliciti (elotuzumab) treatment experience" (started Dec 14, 2015)
"New here - on elotuzumab, Revlimid, and dex" (started Jul 14, 2015)
I think that, overall, there isn't that much experience with Empliciti (elotuzumab) yet, just because it's still a rather new drug.
I hope your respond well to the treatment regimen, and that it gets you into remission and keeps you there for a long time. Please keep us posted on how things go with the treatment.
Re: Empliciti, Revlimid & dexamethasone: what to expect?
All,
After almost four years following my autologous stem cell transplant, I've relapsed. My specialist has recommended an Empliciti (elotuzumab), Revlimid, and dexamethasone (ERD) treatment regimen. After a positive response and remission, a second transplant is recommended. I've done research online and feel confident in this plan.
So, like Karen above, I'm interested to learn more about what to expect from the treatment regimen.
Also, I'll return to a Zometa treatment every 90 days. Trying to figure out exactly why.
Thanks in advance for any advice.
Kully
After almost four years following my autologous stem cell transplant, I've relapsed. My specialist has recommended an Empliciti (elotuzumab), Revlimid, and dexamethasone (ERD) treatment regimen. After a positive response and remission, a second transplant is recommended. I've done research online and feel confident in this plan.
So, like Karen above, I'm interested to learn more about what to expect from the treatment regimen.
Also, I'll return to a Zometa treatment every 90 days. Trying to figure out exactly why.
Thanks in advance for any advice.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Empliciti, Revlimid & dexamethasone: what to expect?
My husband has been on this regimen for about 2.5 years. He went into a clinical trial with this protocol directly following his autologous stem cell transplant in 2015. I remember him being really, really tired and achy for a few days after infusions for the first few months, but since then it's been just another day to him. He goes once a month now, but in the beginning he had to go more often (I can't remember how often, I'm sorry).
Best of luck to you.
Debra
Best of luck to you.
Debra
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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: Empliciti, Revlimid & dexamethasone: what to expect?
Thanks for the response Debra, I hope your husband is doing well.
My first treatment included a doctor consult, pre-treatment of Tylenol (acetaminophen / paracetamol), oral dexamethasone, Benadryl (diphenhydramine), and an antacid. My first Empliciti (elotuzumab) bag took about 3 hours. Combined with the 3 pre-treatments, I was in the infusion chair at just over 4 hours. Tough night of sleep, but that was to be expected.
I'll repeat the process 3 consecutive weeks (Wednesday for me) along with 25 mg Revlimid daily for 21 days. I'll take a 7-day break from Revlimid and have blood work done.
After 8 weeks and confirmation of a response I'll move to every 2 weeks. I've been advised to contact the transplant team at Roswell Park to coordinate my autologous stem cell transplant and have questions about continuation of maintenance treatments.
Lessons learned: My local oncologist recommended I complete a PET/CT scan, skeletal survey and DEXA bone density test. Wish I had asked these questions at my specialist visit. With the first treatment completed, the genie is out of the bottle per se. I will have these done at the transplant center as previously test completed at outside facilities have presented challenges (unreadable disc, loss results) in the past.
Thanks for any additional advice. I'm my best advocate, but even I get overwhelmed at times.
Kully
My first treatment included a doctor consult, pre-treatment of Tylenol (acetaminophen / paracetamol), oral dexamethasone, Benadryl (diphenhydramine), and an antacid. My first Empliciti (elotuzumab) bag took about 3 hours. Combined with the 3 pre-treatments, I was in the infusion chair at just over 4 hours. Tough night of sleep, but that was to be expected.
I'll repeat the process 3 consecutive weeks (Wednesday for me) along with 25 mg Revlimid daily for 21 days. I'll take a 7-day break from Revlimid and have blood work done.
After 8 weeks and confirmation of a response I'll move to every 2 weeks. I've been advised to contact the transplant team at Roswell Park to coordinate my autologous stem cell transplant and have questions about continuation of maintenance treatments.
Lessons learned: My local oncologist recommended I complete a PET/CT scan, skeletal survey and DEXA bone density test. Wish I had asked these questions at my specialist visit. With the first treatment completed, the genie is out of the bottle per se. I will have these done at the transplant center as previously test completed at outside facilities have presented challenges (unreadable disc, loss results) in the past.
Thanks for any additional advice. I'm my best advocate, but even I get overwhelmed at times.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Empliciti, Revlimid & dexamethasone: what to expect?
Hello all of you!
My mom has been diagnosed with IgG multiple myeloma stage IIIa in December 2016. Due to an underestimation of this deadly illness, she started treatment in late November 2016 with cyclophosphamide, bortezomib (Velcade), and dexamethasone. But only had 1,5 cycles because of very intense polyneuropathy and severe fatigue. She needed almost 3 months to recover, but the bone pain was getting more and more severe.
Now the doctor put her on 25 mg Revlimid, elotuzumab (Empliciti), and 20 mg dexamethasone. She also took some supplements like curcumin, resveratrol, papaya enzymes, etc.
Yesterday we did get the blood work results of the first cycle:
IgG dropped from 89 g/l to 59 g/l (Reference 7-16 g/l)
Total protein dropped from 136 g/l to 107 g/l (Reference 66-83 g/l)
Kappa from 34,50 mg/l to 18,40 mg/l (Reference 3,30-19,40 mg/l)
Lambda from 2,11 mg/l to 3,60 mg/l (Reference 5,70-26,30 mg/l)
We're wondering, of course, if this is a satisfying result, or if it should have dropped more, and what we can expect from the second cycle (will it drop another 30 g/l).
Cheers,
Steffen
My mom has been diagnosed with IgG multiple myeloma stage IIIa in December 2016. Due to an underestimation of this deadly illness, she started treatment in late November 2016 with cyclophosphamide, bortezomib (Velcade), and dexamethasone. But only had 1,5 cycles because of very intense polyneuropathy and severe fatigue. She needed almost 3 months to recover, but the bone pain was getting more and more severe.
Now the doctor put her on 25 mg Revlimid, elotuzumab (Empliciti), and 20 mg dexamethasone. She also took some supplements like curcumin, resveratrol, papaya enzymes, etc.
Yesterday we did get the blood work results of the first cycle:
IgG dropped from 89 g/l to 59 g/l (Reference 7-16 g/l)
Total protein dropped from 136 g/l to 107 g/l (Reference 66-83 g/l)
Kappa from 34,50 mg/l to 18,40 mg/l (Reference 3,30-19,40 mg/l)
Lambda from 2,11 mg/l to 3,60 mg/l (Reference 5,70-26,30 mg/l)
We're wondering, of course, if this is a satisfying result, or if it should have dropped more, and what we can expect from the second cycle (will it drop another 30 g/l).
Cheers,
Steffen
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SteffenBerlin - Name: Steffen
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: December 2016
- Age at diagnosis: 65
Re: Empliciti, Revlimid & dexamethasone: what to expect?
Hi Steffen,
Was there a typo in your post? Was your mother diagnosed in December 2016, but waited to start treatment until November 2017 (not 2016)?
If she did wait until November 2017, did she not have any treatment whatsoever during that time?
Finally, what happened to your mother's M-spike (paraprotein level) when her IgG dropped by 30 g/l (3 g/dL)? Did it also drop by about 3 g/dL? Or did it stay relatively constant?
Was there a typo in your post? Was your mother diagnosed in December 2016, but waited to start treatment until November 2017 (not 2016)?
If she did wait until November 2017, did she not have any treatment whatsoever during that time?
Finally, what happened to your mother's M-spike (paraprotein level) when her IgG dropped by 30 g/l (3 g/dL)? Did it also drop by about 3 g/dL? Or did it stay relatively constant?
Re: Empliciti, Revlimid & dexamethasone: what to expect?
Hello Steffen,
Welcome to the forum, but I am sorry that your mother has suffered a lot with the myeloma. I hope that she is feeling better now, and continues to respond well to the treatments of Empliciti, Revlimid and dexamethasone.
It seems to me that a drop of 20% in total protein and a drop of the kappa-lambda ratio from 16.4 to 5.1 is a really good result so far. Normal kappa-lambda ratios are from 0.26 - 1.65. It is just calculated by dividing the kappa values by the lambda values and may be posted on your lab results. Please keep us posted on results.
Terry H has asked about the monoclonal protein. If it is present in the blood, it is an important myeloma marker. There is no 'normal' range for that (it is 0 in people without myeloma or MGUS), but hopefully is falling too. It might be listed under the heading of 'Immunology' on your test results. In some countries, I think it is listed as 'paraprotein'. Hope that helps!
Welcome to the forum, but I am sorry that your mother has suffered a lot with the myeloma. I hope that she is feeling better now, and continues to respond well to the treatments of Empliciti, Revlimid and dexamethasone.
It seems to me that a drop of 20% in total protein and a drop of the kappa-lambda ratio from 16.4 to 5.1 is a really good result so far. Normal kappa-lambda ratios are from 0.26 - 1.65. It is just calculated by dividing the kappa values by the lambda values and may be posted on your lab results. Please keep us posted on results.
Terry H has asked about the monoclonal protein. If it is present in the blood, it is an important myeloma marker. There is no 'normal' range for that (it is 0 in people without myeloma or MGUS), but hopefully is falling too. It might be listed under the heading of 'Immunology' on your test results. In some countries, I think it is listed as 'paraprotein'. Hope that helps!
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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: Empliciti, Revlimid & dexamethasone: what to expect?
Your mother's decrease seems reasonable / good.
I was on Empliciti, Pomalyst (pomalidomide / Imnovid), and dexamethasone for almost 2 years before I recently stopped responding to it and had to change treatment. My response at the beginning was as follows for the first 5 cycles:
IgA (mg/dL): 1430 1100 823 612 503
M-protein (g/dL): 0.9 0.6 0.4 0.3 0.2
KFLC (mg/dL): 1.3 1.3 1.15 1.0 0.9
After 5 cycles, I remained in stable response, with values around those at the end of the fifth cycle. The drops in IgA and M-protein (M-spike) were ~25% and 33% respectively, which are similar (and actually not as good) as your mother's.
My doctor indicated that the response to Empliciti tends to be a bit more gradual than some other drugs (e.g., Kyprolis tends to have a greater drop off at the beginning, then levels off). Obviously, not everyone will respond the same way, but from my perspective, I would be happy with the response your mother has had so far.
Good luck, and I hope your mother continues to respond well.
I was on Empliciti, Pomalyst (pomalidomide / Imnovid), and dexamethasone for almost 2 years before I recently stopped responding to it and had to change treatment. My response at the beginning was as follows for the first 5 cycles:
IgA (mg/dL): 1430 1100 823 612 503
M-protein (g/dL): 0.9 0.6 0.4 0.3 0.2
KFLC (mg/dL): 1.3 1.3 1.15 1.0 0.9
After 5 cycles, I remained in stable response, with values around those at the end of the fifth cycle. The drops in IgA and M-protein (M-spike) were ~25% and 33% respectively, which are similar (and actually not as good) as your mother's.
My doctor indicated that the response to Empliciti tends to be a bit more gradual than some other drugs (e.g., Kyprolis tends to have a greater drop off at the beginning, then levels off). Obviously, not everyone will respond the same way, but from my perspective, I would be happy with the response your mother has had so far.
Good luck, and I hope your mother continues to respond well.
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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: Empliciti, Revlimid & dexamethasone: what to expect?
Hi Terry - Thanks for your answer. No, there wasn't a typo in my post.
As I mentioned, the delayed start of the therapy was due to the underestimation of this illness. My mom did start in November 2017. She didn't have any treatments before. I'm sorry but I don't know the M-spike after the first cycle. I only have the M-spike from before this regimen did start. It was 61.3 g/l (6.13 g/dL)! I hope we do get the current M-spike soon.
Hi Nancy - Thanks for your answer. I hope the total protein will drop even further. I'm really curious how many cycles my mom is going to get. She has tremendous pain. I hope this will get better the more cycles she receives!
Hi Kevin - Thanks for your answer. Sorry to hear that you did not respond to the treatment anymore. Are you on some other treatment right now?
As I mentioned, the delayed start of the therapy was due to the underestimation of this illness. My mom did start in November 2017. She didn't have any treatments before. I'm sorry but I don't know the M-spike after the first cycle. I only have the M-spike from before this regimen did start. It was 61.3 g/l (6.13 g/dL)! I hope we do get the current M-spike soon.
Hi Nancy - Thanks for your answer. I hope the total protein will drop even further. I'm really curious how many cycles my mom is going to get. She has tremendous pain. I hope this will get better the more cycles she receives!
Hi Kevin - Thanks for your answer. Sorry to hear that you did not respond to the treatment anymore. Are you on some other treatment right now?
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SteffenBerlin - Name: Steffen
- Who do you know with myeloma?: My Mom
- When were you/they diagnosed?: December 2016
- Age at diagnosis: 65
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