Paul C here. First post in 2 months. Hard winter, with a bad cold, pulled back and hip (trying to do too much after being laid up with cold), followed by a trip to ER and diagnosis of bilateral pneumonia, and three courses of antibiotics. This forced a hiatus in Empliciti treatment, with unwanted results.
Empliciti had reversed the rising M-spike, from untraceable (June 2014) to 1.3 g/dL in December (while on Revlimid maintenance). Under Empliciti, I dropped to 0.7 g/dL, but then held at 0.7, and in March, the M spike rose to 1.5 g/dL, so it appears not to be working.
Doc says his usual protocol is to switch after two rises, so we'll see what next reading is. I am a "good risk" for long term survival, but for 2 years, no treatment has lasted as long as it is supposed to. I run through the drugs, all of them, much too fast. So this is kind of depressing. Next M-spike reading will be mid-April. We'll see.
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Re: My Empliciti (elotuzumab) treatment experience
Paul, I was very interested to see your post, as I've also just recently started the Empliciti / dex / Revlimid combo, and I think there are still relatively few people on the forum who are trying this new drug.
I also didn't get as much of a remission from my stem cell transplant as I had hoped; I had mine in June 2014 and was on Velcade maintenance. In my case my doctor tracks my kappa light chains instead of the M-spike. The kappas started rising in January and after a couple of months of this the doctor suggested starting this regimen instead.
I've had two infusions so far. I also didn't have any negative reaction from the infusion itself. In my case they are giving me 20 mg of Decadron (dexamethasone) via infusion (half the usual) as I have had such strong reactions to it in the past. I'm also taking 25 mg of Revlimid for 21 days, with 7 days "off". The doctor also has me taking two baby aspirin a day as well as acyclovir. I was taking Prilosec (omeprazole) for years for GERD but just switched to Zantac (ranitidine) after reading all of the studies regarding side effects from long-term use.
Before each infusion they've been giving me a whole slew of pre-meds including Benadryl (diphenhydramine), Prilosec, Compazine (prochlorperazine) and Tylenol (acetaminophen / paracetamol).
So far I think most of the negative side effects I've had have been from the Decadron - sleeplessness, feeling spacey, general fuzziness of thinking. I hope the combination of drugs works at this lower dose of Decadron as I do not think I could tolerate the full dose.
For the first week or so of taking Revlimid I also had a very itchy scalp, but fortunately that has subsided.
For the past few days I've had a minor sore throat and I think my glands are swollen a bit; not sure if this is a side effect or if I'm getting a cold!
Blood work after just one infusion showed a slight drop in the kappa number. Hoping this trend will continue, but I'm also feeling a bit depressed at the thought of feeling like this for another 6 weeks (the doctor said he wants me to do 8 weeks straight of infusions once a week, then probably every other week for some indeterminate time.) However, I am glad that when I go in for the third infusion this Tuesday, it will go faster. I too, though, enjoy having the time to just sit and read.
I wish you all the best with the treatment and I hope it does start working for you again now that you're back on schedule.
Karen
I also didn't get as much of a remission from my stem cell transplant as I had hoped; I had mine in June 2014 and was on Velcade maintenance. In my case my doctor tracks my kappa light chains instead of the M-spike. The kappas started rising in January and after a couple of months of this the doctor suggested starting this regimen instead.
I've had two infusions so far. I also didn't have any negative reaction from the infusion itself. In my case they are giving me 20 mg of Decadron (dexamethasone) via infusion (half the usual) as I have had such strong reactions to it in the past. I'm also taking 25 mg of Revlimid for 21 days, with 7 days "off". The doctor also has me taking two baby aspirin a day as well as acyclovir. I was taking Prilosec (omeprazole) for years for GERD but just switched to Zantac (ranitidine) after reading all of the studies regarding side effects from long-term use.
Before each infusion they've been giving me a whole slew of pre-meds including Benadryl (diphenhydramine), Prilosec, Compazine (prochlorperazine) and Tylenol (acetaminophen / paracetamol).
So far I think most of the negative side effects I've had have been from the Decadron - sleeplessness, feeling spacey, general fuzziness of thinking. I hope the combination of drugs works at this lower dose of Decadron as I do not think I could tolerate the full dose.
For the first week or so of taking Revlimid I also had a very itchy scalp, but fortunately that has subsided.
For the past few days I've had a minor sore throat and I think my glands are swollen a bit; not sure if this is a side effect or if I'm getting a cold!
Blood work after just one infusion showed a slight drop in the kappa number. Hoping this trend will continue, but I'm also feeling a bit depressed at the thought of feeling like this for another 6 weeks (the doctor said he wants me to do 8 weeks straight of infusions once a week, then probably every other week for some indeterminate time.) However, I am glad that when I go in for the third infusion this Tuesday, it will go faster. I too, though, enjoy having the time to just sit and read.
I wish you all the best with the treatment and I hope it does start working for you again now that you're back on schedule.
Karen
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Karen - Name: Karen
- When were you/they diagnosed?: December 2010
- Age at diagnosis: 51
Re: My Empliciti (elotuzumab) treatment experience
Thank you, Karen, for your report. Gives me something to bounce off of, since there are so few of us Empliciti patients.
Consulted with doc today. Next test of M-spike and kappa-lambda ratios (mine went from 1.5 to 17.5 between February and March) will be April 12.We're not sure if my poor health (long lasting pneumonia causing 1-week delay in infusion) was a causation, but regained health can't hurt.
If my M spike climbs again, we'll switch to something new. But we did make one reactive change decision now. Because I had rejected 25 mg of Revlimid early on, I've been very cautious with it since. But in view of bad numbers, have decided to chance going from 15 mg to 20 mg and seeing what happens. I had scalp psoriasis when I first went on Revlimid, but after some months it disappeared. We'll see if 20 mg triggers it again. Back to the T-Sal shampoo!
I have a friend who is trying to get me to send my files to MD Anderson in Texas for second opinion. They are very well respected, but their webpage, to someone like me that's been reading this stuff for 29 months, is boiler plate. "We tailor our treatment to the individual." But everyone who's up to snuff does. They identify the chromosome that is out of whack and treat that according to best practice and protocols. They determine if you are on your 1st or 2d or 4th or umpteenth treatment, and see what's best for that. That's what all my doctors in Maryland and Phoenix have been doing. I figure if my doctor knows about an FDA fast track approved drug the day after the announcement, he's up to speed. And as long as I take an active part in this, reading all I can and discussing this intelligently, and we seem to be on the same page, then I am happy. Besides, Texas is out of network, and I can't see spending the money for telling me what I probably already know. We have Mayo here, if it comes to that.
Best wishes on your future reaction to treatment. This is one hell of a fight, eh?
Consulted with doc today. Next test of M-spike and kappa-lambda ratios (mine went from 1.5 to 17.5 between February and March) will be April 12.We're not sure if my poor health (long lasting pneumonia causing 1-week delay in infusion) was a causation, but regained health can't hurt.
If my M spike climbs again, we'll switch to something new. But we did make one reactive change decision now. Because I had rejected 25 mg of Revlimid early on, I've been very cautious with it since. But in view of bad numbers, have decided to chance going from 15 mg to 20 mg and seeing what happens. I had scalp psoriasis when I first went on Revlimid, but after some months it disappeared. We'll see if 20 mg triggers it again. Back to the T-Sal shampoo!
I have a friend who is trying to get me to send my files to MD Anderson in Texas for second opinion. They are very well respected, but their webpage, to someone like me that's been reading this stuff for 29 months, is boiler plate. "We tailor our treatment to the individual." But everyone who's up to snuff does. They identify the chromosome that is out of whack and treat that according to best practice and protocols. They determine if you are on your 1st or 2d or 4th or umpteenth treatment, and see what's best for that. That's what all my doctors in Maryland and Phoenix have been doing. I figure if my doctor knows about an FDA fast track approved drug the day after the announcement, he's up to speed. And as long as I take an active part in this, reading all I can and discussing this intelligently, and we seem to be on the same page, then I am happy. Besides, Texas is out of network, and I can't see spending the money for telling me what I probably already know. We have Mayo here, if it comes to that.
Best wishes on your future reaction to treatment. This is one hell of a fight, eh?
Re: My Empliciti (elotuzumab) treatment experience
Hi Paul,
I am also on elotuzumab (aka Empliciti). I've been on it nearly two years, so before they came up with it's current fancy name. It is still "elo" to me. I'm in a clinical trial for newly diagnosed high-risk patients. Started May 2014. I also am taking dex, Revlimid, and Velcade, so a 4 drug combo, plus monthly Zometa infusions.
I'm currently in the maintenance phase. Revlimid down to 15 mg and dex is 8 mg weekly. Velcade now 1 shot a week. I have not had a stem cell transplant. My high risk feature is 17p deletion.
Needless to say that I'm pleased to still be doing well and myeloma under control for so long. Side effects are minimal. I have light chain myeloma and kappa light chains have stayed in normal range except ratio a bit over normal due to low lambda. I hope I can stay on this protocol as long as possible because it is working for me and I'm so used to it and it has given me a great quality of life.
Keep us posted on what happens with your treatment.
I am also on elotuzumab (aka Empliciti). I've been on it nearly two years, so before they came up with it's current fancy name. It is still "elo" to me. I'm in a clinical trial for newly diagnosed high-risk patients. Started May 2014. I also am taking dex, Revlimid, and Velcade, so a 4 drug combo, plus monthly Zometa infusions.
I'm currently in the maintenance phase. Revlimid down to 15 mg and dex is 8 mg weekly. Velcade now 1 shot a week. I have not had a stem cell transplant. My high risk feature is 17p deletion.
Needless to say that I'm pleased to still be doing well and myeloma under control for so long. Side effects are minimal. I have light chain myeloma and kappa light chains have stayed in normal range except ratio a bit over normal due to low lambda. I hope I can stay on this protocol as long as possible because it is working for me and I'm so used to it and it has given me a great quality of life.
Keep us posted on what happens with your treatment.
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Janet1520
Re: My Empliciti (elotuzumab) treatment experience
Hi Paul, Karen and Janet,
Seems like you are doing well on the elotuzumab. Janet, you seem to be doing very well given that you have 17p deletion. I've heard that the new monoclonal antibodies like elotuzumab are agnostic for that high risk deletion. Your experience seems to confirm that.
I've been on elotuzumab for about fifteen months. Initially diagnosed in December 2014. M spike was 6.5 g/dL (65 g/L) in early January 2015 just before starting on elotuzumab, Revlimid 25 mg, and dexamethasone 40 mg. By August 2015, M spike dropped to 0.1 g/dL, but since then has been creeping back up. It was 0.7 g/dL two weeks ago. My Revlimid had been cut to 15 mg and the dex cut to 20 mg about six months ago. We decided to increase the dex to 40 mg once a week about three weeks ago.
Except for a sleepless night once a week followed by a down day from the dex, I've had no side effects or problems from any of the drugs. The preinfusion meds of Zantac, Benadryl and 8 mg dexamethasone are given together by IV over 30 minutes, as well as oral Tylenol.
I feel great, except for the one down day a week, with good energy levels and no symptoms from the myeloma.
If my M-spike etc keep creeping up, I'll probably be put on a different immunomodulatory med but kept on the elotuzumab and dex.
Seems like you are doing well on the elotuzumab. Janet, you seem to be doing very well given that you have 17p deletion. I've heard that the new monoclonal antibodies like elotuzumab are agnostic for that high risk deletion. Your experience seems to confirm that.
I've been on elotuzumab for about fifteen months. Initially diagnosed in December 2014. M spike was 6.5 g/dL (65 g/L) in early January 2015 just before starting on elotuzumab, Revlimid 25 mg, and dexamethasone 40 mg. By August 2015, M spike dropped to 0.1 g/dL, but since then has been creeping back up. It was 0.7 g/dL two weeks ago. My Revlimid had been cut to 15 mg and the dex cut to 20 mg about six months ago. We decided to increase the dex to 40 mg once a week about three weeks ago.
Except for a sleepless night once a week followed by a down day from the dex, I've had no side effects or problems from any of the drugs. The preinfusion meds of Zantac, Benadryl and 8 mg dexamethasone are given together by IV over 30 minutes, as well as oral Tylenol.
I feel great, except for the one down day a week, with good energy levels and no symptoms from the myeloma.
If my M-spike etc keep creeping up, I'll probably be put on a different immunomodulatory med but kept on the elotuzumab and dex.
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Ted Kan - Who do you know with myeloma?: Self
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 75
Re: My Empliciti (elotuzumab) treatment experience
Paul C here.
Yesterday I went from a 15 mg Revlimid level to 20 mg. (In December 2013, at the very beginning of my treatment, I lasted only 2 weeks at the usual 25 mg before Stevens Johnson syndrome set in, and we switched to a Cytoxan cocktail.) So we know 15 mg isn't stopping the cancer from growing. We know that 25 mg is a bit problematic. We shall see if I can tolerate 20 mg, and that, in concert with Empliciti and dex (40 mg) it does what it is supposed to.
Last night, following the first 20 mg pill, I had my first foot cramps in weeks, and sleep was uncomfortable due to leg pains (a recurring problem since I contracted the disease). Pain killers (tramadol, oxycodone) tend to interfere with sleep, so I began taking lorazepam (Ativan) to relax. We'll see if that's the answer now that the cramps have returned.
A question was asked earlier if I receive Zantac along with the Empliciti infusion. Yes, indeed. Sorry for the delay in reply. Lots of house guests lately, and a low energy level after they left.
Yesterday I went from a 15 mg Revlimid level to 20 mg. (In December 2013, at the very beginning of my treatment, I lasted only 2 weeks at the usual 25 mg before Stevens Johnson syndrome set in, and we switched to a Cytoxan cocktail.) So we know 15 mg isn't stopping the cancer from growing. We know that 25 mg is a bit problematic. We shall see if I can tolerate 20 mg, and that, in concert with Empliciti and dex (40 mg) it does what it is supposed to.
Last night, following the first 20 mg pill, I had my first foot cramps in weeks, and sleep was uncomfortable due to leg pains (a recurring problem since I contracted the disease). Pain killers (tramadol, oxycodone) tend to interfere with sleep, so I began taking lorazepam (Ativan) to relax. We'll see if that's the answer now that the cramps have returned.
A question was asked earlier if I receive Zantac along with the Empliciti infusion. Yes, indeed. Sorry for the delay in reply. Lots of house guests lately, and a low energy level after they left.
Re: My Empliciti (elotuzumab) treatment experience
Hi,
My father was diagnosed with multiple myeloma in October 2013 as well. At time of diagnosis, he was given 2 months to live without beginning treatment. His kappa light chain numbers were out the roof.
He started off with Alkeran (melphalan) and Velcade. Later he went on Revlimid. He developed leukemia from this short course of chemo. We started Empliciti last month.
He is red blood and platelet dependent, getting transfused twice weekly most of the time. He currently has pneumonia, so treatment was held last week. At the hospital at present receiving blood and platelets. Has had a nosebleed since last night.
Please continue to share your multiple myeloma experiences; it actually helps to accept and deal with this ugly disease. My dad is a fighter and refuses to give up.
My prayers for each of you and your family.
My father was diagnosed with multiple myeloma in October 2013 as well. At time of diagnosis, he was given 2 months to live without beginning treatment. His kappa light chain numbers were out the roof.
He started off with Alkeran (melphalan) and Velcade. Later he went on Revlimid. He developed leukemia from this short course of chemo. We started Empliciti last month.
He is red blood and platelet dependent, getting transfused twice weekly most of the time. He currently has pneumonia, so treatment was held last week. At the hospital at present receiving blood and platelets. Has had a nosebleed since last night.
Please continue to share your multiple myeloma experiences; it actually helps to accept and deal with this ugly disease. My dad is a fighter and refuses to give up.
My prayers for each of you and your family.
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Dawn T
Re: My Empliciti (elotuzumab) treatment experience
We're sorry to report that Paul C passed away at the end of July, 2016. Further information about the treatments he received after his Empliciti regimen, and the challenges he faced, can be found in this forum thread:
"Paul Cool - Diagnosed October, 2013, passed July 2016" (Sep 2, 2016)
"Paul Cool - Diagnosed October, 2013, passed July 2016" (Sep 2, 2016)
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