[Paul C]

My Empliciti (elotuzumab) treatment experience

by Paul C on Mon Dec 14, 2015 1:00 pm

I start treatment with Empliciti (elotuzumab), Revlimid, and dex today. Just read the FDA info sheet for Empliciti. Yikes, I'm getting closer to the cure being worse than the ailment. (Not true, but feels like it)

This is the latest in a disconcerting journey:

• October 2013 - Diagnosed stage 3, M-spike 5.1 g/dL (51 g/L), "good risk" for survival
• November 2013 - Kyphoplasty
• December 9, 2013 - Revlimid, Velcade, and dex (RVD). Lasted 2 weeks on Revlimid 25 mg before skin started failing. It was that bad.
• December 30, 2013- Substituted Cytoxan for Revlimid, with dex and Velcade continuing
• January 2014 - M Spike down to 0.9 g/dL. It then wavers between 0.5 and 0.7 all year. Major insomnia and fatigue being the worst side effects. A year without energy, but otherwise free of major side effects. Johns Hopkins MD wavered back and forth on whether to do stem cell transplant.
• July 2014 - Halted use of Zometa because osteonecrosis of the jaw (ONJ) developed.
• August 2014 - Eager to stop spinning in place, switched to University of Maryland Hospital. Determination made to do autologous stem cell transplant.
• October 2014 - One year after diagnosis, underwent stem cell transplant.
• January 20, 2015 - M spike 0.0 in blood; trace in bone marrow.
• February 2015 - Maintenance program of 5 mg Revlimid alone.
• May 2015 - No trace of disease
• August 2015 - It's back at 0.3 Increase Revlimid to 10 mg
• November 2015 - M spike up to 0.7
• December 14, 2015 - Increase Revlimid to 15 mg (staying away from 25 mg because of severe reaction 2 years ago; we're going to see if 15 works) + dex and Empliciti.

It's hard to assess where I am. On the positive side, the readings put me in the "good risk" arena, but on the negative side, my acceptance of some standard treatments (Revlimid + Zometa) has been problematic, and, while the stem cell transplant was beaten back, the cancer returned all too quickly. It's a good thing that I am a good risk, but I had hoped for more from the transplant.

Oh, and 14 months after my stem cell transplant, the straight hair is still curly.

[Paul C]

Re: My Empliciti (elotuzumab) treatment experience

by Paul C on Thu Dec 24, 2015 7:41 pm

Two treatments under my belt. Fatigue and fuzzy thinking on the current regimen of Empliciti, Revlimid, and dex, but today, Christmas eve, is a good day. Thought I was coming down with a cold as weather is relatively poor here in Phoenix (50s/30s, drizzly). Tylenol Cold is the best thing to help me sleep, more so than the pain killers.

24 days after the FDA approval of Empliciti, and I am the only Empliciti patient my oncologist is aware of in the Scottsdale, Arizona area.

[Paul C]

Re: My Empliciti (elotuzumab) treatment experience

by Paul C on Tue Dec 29, 2015 5:00 pm

Infusion #3 delayed until labs come back. Checking electrolyte levels. My hands and feet have occasional cramping, seizing up for 1-5 minutes a couple of times a day, with some low pain. Yesterday both hands cramped off and on for hours. That was new. I used hands a lot on new crossword puzzle and some handwriting yesterday, and perhaps that triggered problem. Laid off that activity today.

Because Empliciti is so new, it is thought best to try and see if these levels are a drug-induced problem before administering the third infusion. The drug maker's instructions do not, as is usually the case, offer lower levels of drug administration, so we are just holding off until labs come back.

[Paul C]

Re: My Empliciti (elotuzumab) treatment experience

by Paul C on Thu Jan 07, 2016 12:17 am

No new prolonged hand cramping, and no other significant problem arose in the last week, so received the third Empliciti infusion yesterday. So far, no reactions to the infusions themselves. And this week, we speeded up the drip after cautious go-slow drips the first two times around.

I am also on 28 mg dex the day before, and 8 mg dex as part of the infusion process. Absolutely sleepless last night. Second time within a week. (Last time was Wednesday, December 30. I had no infusion, as I said, but had taken the 28 mg two days before, so if connected, a slight delay in that case.)

The new treatment was in order. The M-spike lab for December 2015, taken just before the first infusion, showed 1.3 g/dL. After October, 2014 BMT, untraceable in June, 0.3 in August (so went from 5 mg Revlimid to 10 mg), doubled to 0.7 in November (so went to Revlimid 15 mg), and doubled again in one month to 1.3 – my highest level since January 2014, one month after induction regimen began. Ah, sic transit BMT.

As I may have mentioned in an earlier post, Empliciti masks the true M spike readings, so we won't really know the true value of whatever number comes back from now on. Perhaps just have to wait to see if I live 5 months longer than I otherwise would. Not sure how to measure it against the future that doesn't happen.

As for Empliciti, I am gratified that I have suffered no infusion reaction, and one day after a third treatment, no serious build up reaction to the drug. That's good news in my case, as I rejected 25 mg of Revlimid in December 2013 after just 2 weeks, the reason for low post-BMT dosage in 2015, and acquired osteonecrosis of the jaw (ONJ) after 7 months on Zometa. So don't have a great track record with the best drugs.

But so far so good.

[Paul C]

Re: My Empliciti (elotuzumab) treatment experience

by Paul C on Fri Jan 08, 2016 7:31 pm

Too soon to tell, but looks like Empliciti might be working. The M-spike reading went from 0.7 g/dL in November to 1.3 g/dL in December (on a Revlimid 15 mg only maintenance program). Now, after two Empliciti infusions, it is back down to 0.7 g/dL.

This is the first time since June it has gone in the right direction.

[Cheryl G]

Re: My Empliciti (elotuzumab) treatment experience

by Cheryl G on Sat Jan 09, 2016 11:47 am

Thanks for sharing your experience with us, Paul, and welcome to the forum.

Have you noticed any side effects from the Empliciti that seem specific to it, rather than Revlimid or dex? Also, how cumbersome do you find all the things you have to take to prevent infusion reactions from the Empliciti? As I recall, there are quite a number of drugs that are supposed to be taken pre-infusion to avoid infusion reactions.

I hope the Empliciti does the trick for you and that you get a very extended response from it.

[Paul C]

Re: My Empliciti (elotuzumab) treatment experience

by Paul C on Mon Jan 11, 2016 12:40 pm

Paul C

Hi Cheryl. Sorry for the delay – laid out this weekend with cold that moved into the chest.

I do not detect any symptoms that I definitively attribute only to the Empliciti. For a time, I thought maybe the serious hand seizures, which peaked before the 3d weekly treatment, which we delayed. The hand problem subsided, and did not resurface after I resumed Empliciti. Without any definitive medical info, I attribute it to the drug AND the sort of repetitive hand motions (picking up jigsaw pieces) that triggered it. We'll see over time.

Otherwise, the occasional insomnia, the fatigue, susceptibility to cold-turned-pneumonia, I think are the ordinary result of any and all drug cocktails I had so far.

The M spike number is positive ... so far. Extended response would be nice, as that has been the problem I've faced. "Good risk" for longer term survival, but running too quickly through treatments.

As Chief Dan George says in "The Outlaw Josie Wales," ... "We must endeavor to persevere"

[Paul C]

Re: My Empliciti (elotuzumab) treatment experience

by Paul C on Mon Jan 11, 2016 4:08 pm

Cheryl, a little fog brain there. Never answered your questions about the drugs associated with the Empliciti infusion. I do not find it burdensome.

On the day before infusion, I take 28 mg of dex, and then on the day of infusion, I first receive the blood draw for labs, then receive saline solution, 8 mg of dex, and some amount of Benadryl. The whole process took 4-5 hours at first because we did a slow-go drip of Empliciti.

Speeded up last week, and the process, I think, took no more than 3 hours. Sped by. It's an opportunity to dive into a book, and I am happy as a clam.

I've posted before that there have been no infusion reactions. Three treatments in, no serious adverse reactions due to buildup that I or labs can detect.

For me, so far so good.

[Cheryl G]

Re: My Empliciti (elotuzumab) treatment experience

by Cheryl G on Mon Jan 11, 2016 6:08 pm

Hi Paul,

Thanks for your follow-up postings.

The hand seizures (cramping) that you mentioned sounds a lot like cramping people get from Revlimid. It seems to be a common side effect of the drug. You'll see various recommendations for dealing with the problem, which I believe is linked to electrolyte imbalances caused by the treatment.

Glad to hear that you don't find the pre-infusion regimen too cumbersome. The Empliciti prescribing information,

http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/761035s000lbl.pdf

says that dex, diphenhydramine (Benadryl), ranitidine (Zantac), and acetaminophen (Tylenol) should be given prior to the Empliciti infusion. It sounds like you're getting the dex and Benadryl. I wonder if you're also getting the Zantac and Tylenol?

Again, good luck with the treatment regimen. I really hope is holds your myeloma at bay for a long time.

[NStewart]

Re: My Empliciti (elotuzumab) treatment experience

by NStewart on Tue Jan 12, 2016 8:49 pm

Paul-

Thank you for posting your experience with Empliciti. I may be starting Empliciti if my M-spike goes up. This month it was down a little from last month when we increased my Revlimid to 10 mg every day and decreased dex to 12 mg once a week. I was having some pretty un­com­fort­able side effects from long-term dex use. So, my doctor gave me the choice of increasing Revlimid and possibly having more side effects from that and decreasing dex, or the opposite and dealing with the dex side effects. I chose to decrease the dex because the side effects were becoming de­bili­tating.

Anyway, my concern with Empliciti has been that the trials used 25 mg of Revlimid and 40 mg of dex. Those levels of Revlimid and dex would be impossible for me to tolerate. I wanted to know if anyone was getting Empliciti at lower doses of both Revlimid and dex. It's good to know that you are using lower doses of Revlimid and dex than those used in the trials.

I hope that Empliciti continues to work well for you. Please keep us up to date as to how things are going. I am particularly interested.

Nancy in Phila