Myeloma Dispatches: New Drug, New Experiences
As I mentioned in my previous column, I started treatment with the newly approved myeloma drug Empliciti (elotuzumab) in February. I thought I would share more details about my experiences with the drug so far.
Before I started treatment with Empliciti, I had enjoyed a drug holiday for the previous three months. I appreciated the break from the side effects of drugs and numerous trips to the cancer center.
Before the drug holiday, I was on Kyprolis (carfilzomib), Revlimid (lenalidomide) and dexamethasone (Decadron) for a year. Kyprolis required infusions, on two days back to back, three weeks out of four. I was tired of the constraints of twice-weekly visits to the cancer center. As the year progressed, the side effects worsened and my quality of life started to fade.
When I returned to treatment in February, I was ready for something new.
When my myeloma specialist mentioned Empliciti, I was intrigued. Empliciti is a monoclonal antibody that was approved by the FDA just last November. It is for use in myeloma patients who already have been treated with other myeloma therapies. That definitely is true in my case – I now have been on five treatment regimens since my stem cell transplant in 2011.My multiple myeloma is high risk and tricky. However, fortunately for me, when one drug stops working, myeloma research has given me another choice. For this, I am grateful to be living in this time.
At my local cancer center, I was the first patient to receive Empliciti. I felt special, and a little nervous before my first infusion.
I learned that Empliciti binds to a protein called SLAMF7 found on the surface of myeloma cells. Once the drug binds to the myeloma cell, Empliciti signals and stimulates the immune system to destroy the myeloma cells. A Phase 3 study found that Empliciti in combination with Revlimid and dexamethasone was effective, and had relatively mild side effects, in patients like me where other treatment regimens were no longer working.
One risk with some monoclonal antibody treatments is that patients may have an infusion reaction when the drug is administered. This reaction is a dramatic inflammatory response, which can include a fever, chills, difficulty breathing, and sometimes even low blood pressure. The risk of this reaction is highest with the first infusion.
There is a risk of infusion reactions when Empliciti is given to patients, so it is given in combination with drugs that will prevent and manage an inflammatory response. These drugs are given one hour before the Empliciti infusion. I received Benadryl (diphenhydramine, an antihistamine), Pepcid (famotidine), and dexamethasone intravenously, plus oral Tylenol (acetaminophen / paracetamol) for fever prevention.
What surprised everyone during my first infusion was my response to the Benadryl. Shortly after its administration, I became sedated. I mean very sedated, and even confused and agitated. I could not walk without assistance. I slept the entire six hours required for the Empliciti infusion (Empliciti is administered over six hours to decrease the chances of an infusion reaction). I did wake up by the time the infusion was completed, yet my memories were blurry. I was disturbed by my loss of control.
As the week progressed, I noticed that the side effects were less harsh than those during the last few Kyprolis cycles. I did not experience the nausea, the bloating, and just feeling miserable for two days after the Kyprolis infusion.
The second week, the health care team gave me the same pre-drugs, but only half the Benadryl dose. Although I was not sedated or confused, I still slept most of the time, and was not awake enough to safely drive home.
At that point, everyone agreed that Benadryl was not the right drug for me. The pharmacist suggested we use Claritin (loratadine), an allergy medicine unlikely to cause drowsiness, before my next infusion. I would take the pill at home one hour before the appointment. The pharmacist reassured me that with each treatment, the risk of an infusion reaction would decrease.
During my third infusion, I had the best experience so far. I experienced no sleepiness with the Claritin, so I was able to drive myself to and from treatment. This is crucial for our family because my husband still works full time. My time at the cancer center became shorter because the drug could be given at a faster rate.
Unfortunately, by the third week on the Revlimid, I experienced uncomfortable, yet familiar, symptoms. I’ve been taking Revlimid off and on for five years, and I can tell you: This drug is not my friend. I resent the low energy, constipation, bloating, and dizziness by the end of the 21-day treatment cycle. My seven days off from Revlimid are precious.
My grown up self understands that I need to take the Revlimid with the Empliciti and dexamethasone to fight the progression of my multiple myeloma. However, my immature self can be heard whining about Revlimid.
After four weeks on the new regimen, my IgA – my marker for myeloma cell growth – has decreased significantly. The new drug seems to be working. That’s encouraging because, when I began the new treatment, my IgA was 11 times the normal level, even though I looked and felt fine.
Over the last month, I have also made friends with my new port. I appreciate the easy access, and that my hands are free during the long infusion time. I also swam several times with no interference from the port.
After eight weeks of treatment with Empliciti, Revlimid, and dexamethasone, I observed fatigue and low energy by mid-day. My hemoglobin, white blood counts, and platelet counts remain lower than I want, yet I feel all right. I avoid children with runny noses, wash my hands compulsively, and wipe grocery carts and door knobs with sanitizers. I don’t feel acutely ill as I did by the end of a Kyprolis cycle. I also appreciate the transition to a monthly schedule for the Empliciti infusion.
I’m hoping that this treatment regimen continues to be effective in my fight against multiple myeloma, as side effects have been tolerable with a less negative impact on my quality of life.
In Colorado, spring is coming in spurts of sunshine and snow. I am thankful to be alive. If I begin to be less grateful to be alive, I refer back to the words of Maya Angelou:
My mission in life is not to merely survive, but to thrive: and to do so with some passion, some compassion, some humor and some style.
Maureen Nuckols is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Dear Maureen,
I haven't commented much on the site, but I wanted you to know that I very much appreciate your articles, both for the information they contain and for the inspiration your courage and yes, wisdom, inspires.
I am an American living in Paris, France, with a tough case of multiple myeloma. At the moment I am at a low ebb both physically and psychologically, but I hope to bounce back soon.
Once again, thank you for sharing your thoughts and experiences.
All the best,
Mike
P.S.: My wife is a nurse who works in the hematology service in a Parisian hospital.
I am newly diagnosed with multiple myeloma and in a test study taking elotuzumab. I am on Revlimid, Velcade, and dexamethasone plus the elotuzumab. I have had no reactions and feel good after the elo infusion, which I get once a week. The best to us all!
This column is very helpful in providing an inside look at the use of elotuzumab. It seems that this will become the new treatment of choice for relapsed myeloma patients.
One question: what dosage of dex are you getting?
Dear Maureen,
I really appreciated knowing the details of your treatment regime with Empliciti. This is good information for us multiple myeloma patients to know. I wish you good days there in Colorado and a great spring. Thank you so much for sharing and helping.
Hi Maureen,
Great column today. What a frightening experience with the Benadryl. So glad your medical team was able to find an alternate medication. I believe I have mentioned before that you and my husband share many similarities in your multiple myeloma treatments. Like you, he was on Revlimid, Kyprolis, and dexamethasone for about 6 months. He then had his stem cell transplant on August 31, 2015. After a wonderful four months without chemotherapy, he began the same regimen as you - Revlimid (25 mg), elotuzumab (Empliciti) and dexamethasone (40 mg). He started this in January and now is on the elotuzumab infusions every other week vs. every week. Like you, his oncologist put him on elotuzumab because his myeloma is high risk.
So far, his only side effects seem to be fatigue and some gastrointestinal problems, which seem to be better when he eats plain greek yogurt every day.
Again, like you, he was the first patient in New Mexico to receive elotuzumab. Your articles are very hopeful and we truly appreciate learning about and learning from your experiences. (He is still putting off getting a port.) Keep sharing and stay well.
Hello Michael,
So good to hear that you are reading the Myeloma Beacon. Hopefully you have a myeloma expert in Paris who you trust. There are definite low periods for me, both emotionally and physically.
What do you do to cope? I exercise, spend time with friends who make me laugh and write. Hang in there,
Maureen
Hello Maureen,
Thanks for answering me. Yes, I do have doctors at the hospital who specialize in myeloma and I do trust them. As I said, my wife is a nurse at another hospital in Paris, where she has made a specialty of "therapeutic education" of patients with leukemia, lymphoma, and myeloma, helping patients understand their treatments, cope with side effects,and maximize well-being etc. Treatments and procedures seem to be the same here as in the U.S, but the newest drugs take a bit longer to be available here.
As for coping, I also exercise (I am almost 61). Lately, with side effects, plus a fever requiring additional antibiotics, I've been slacking.
Before I was ill, I swam every day. At the beginning of my illness (November 2013) I was told that there were too many germs at the pool, and advised not to swim. I note that you swim.
Sorry to go on so long. I was a professional musician and teacher, my instrument is the guitar and I still play. I guess that helps me cope too.
Finally I have 2 daughters who are a joy.
Once again, thanks for your columns.
All the best,
Michael
Thank you for the informative article about the use of Empliciti. I have been on a drug holiday for the past year plus. Although the Revlimid, Velcade, and dexamethasone I was on for six cycles before my autologous transplant did not cause me any problems, I chose with the consent of my doctors to watch the numbers and have a life without side effects. I have a feeling that is about to come to and end, and Empliciti seems exciting. I like the ideal of using my own defenses to fight for me, with a little help from friends like this. Let's see what my doctors from Moffitt say.
Thank you, Maureen, for sharing your experiences with the new monoclonal antibody treatment plus Revlimid, dex and the antihistamine and also drugs for fever prevention. I know you are a real trooper to be coping with this! The longest infusions I had were for 4 hours with Aredia (pamidronate) when I first started with that in 2009. Later the infusion time was changed to 2 hours (change of protocol). I used to walk all over the hospital, do knitting, etc, since that was such a long session. That was not in the area where chemotherapy is given, though, such as where I had Velcade infusions. I don't think I would have been able to leave that area. Do you take some good books and music in with you to while away the time? It must be at least 7 hours!
Also, if you don't feel up to doing any driving, is there a volunteer driving service at your cancer centre? I often see the volunteer drivers waiting for the patients. Maybe since the infusion is just once a month now, that will help too. I don't drive much when I am taking dex, actually!
HI Maureen. So good that new medicines keep being approved. My husband, who is 59, was diagnosed in June of 2014 with high risk multiple myeloma. Of course the first treatment, Revlimid and dex, worked wonders, and the numbers dropped so quickly. He was only in remission for about 5 months. He then went on trial, but it didn't work. He has had the most trouble with Velcade, and he is currently on dex, Kyprolis, and Cytoxan. The doctors thought maybe Velcade caused the bladder and nerve issues. We just started, so we are hopeful this will help. He has also had many other issues – kidney issues, staying around 4.0, and a neurogenic bladder, which is the most annoying for him, impacting his quality of life. He also has some nerve pain, which hurts at night.
He has not had a transplant, and I suppose we will need to cross that bridge, but I struggle with this, because with him being so high risk, will this put him in remission, and if so for how long?
Thank you.
Thanks for this "first patient" review of elotuzumab. Something to tuck away in my memory for future use!
Hi Maureen - Thank you for a very informative column. I am 4 months post ASCT. My doctor is starting me on Empliciti, Pomalyst and dex as a maintenance therapy this week. As with you, Revlimid did not agree with me. I am a little bit nervous starting this regiment but also hopeful. There are several new drugs on the market now (Farydak, Darzalex, Ninlaro, Emplicity). Hopefully one of them will work for a myeloma patient. There are good reasons for us to be optimistic that a cure will be found in a not too distant future. The trick is to survive long enough to benefit from the cure discovery.
Mike from NY
Maureen, thank you for sharing your story with us. I'm glad that your response has been largely favorable to the new regimen. Your columns continue to inspire and inform me. Happy spring!
Anne, good to hear that you are already taking elotuzumab,and it is working, with not a lot of side effects. Different combo with Velcade and not Revlimid. Another lesson in how each of our myeloma is different.
Andrew, I am taking 40 mg of dex weekly IV with the infusion of elotuzumab
Sylvia, thank you for your kind comments, this is why I keep writing.
Take care, Maureen
Patti, thanks for the update on your husband's journey. Yes, we share some similarities, although I have been on 5 other treatment regimens since my autologous stem cell transplant in 2011. I'm glad he's responding. Yes, I use Greek yogurt plus a good probiotic. Seems like a common side effect is the GI area.
J.Fosntpa, so glad you have had a drug holiday. I'm a great believer in drug holiday. Take each day as it comes, who knows when and what is next.
Nancy S, I always enjoy your column. I can't leave the cancer center, but I do visit with other patients, listen to music and read. I don't knit and never will. The quality of time during an infusion is strange, dream like, floaty. I would like to write about that at some point.
Thanks for all the comments.
Thank you, Maureen, for sharing your experience so far with Empliciti. I really hope you get a long response to the drug and that you'll be able to give a one-year update next April.
Hello fellow myeloma companions, I have been slow responding because of a nasty bronchitis infection after an arthroscopic surgery. Good news is that I'm recovering. It encourages me to be part of this tribe who writes regularly.
Thank you to April and Sean for your kind words because I read both your column every month and enjoy and learn something each time.
Jenn C., Sounds like your husband's journey has unique challenges because of the neurogenic responses. Just this week, Myeloma Beacon published an article about treatment with individuals with kidney issues. I am hopeful for both of you with the new drug treatments , there is a treatment regimen for him.
Mike, you are a member of the present myeloma patient who is already on Empliciti for maintenance. I wish you a long remission on maintaince.
And JimNY, Thanks for the positive wish, I needed that today.
This tribe of myeloma patients that read, write, and reach out to others keeps me alive and hopeful.
Maureen
I started Empliciti 2 months ago, combined with Revlimid 5 mg and dex 40 mg each Monday. After my first treatment, my platelets dropped very low, 37. So doctor put me on half dose of Empliciti, which I am still on. My platelets were too low to take my Empliciti treatment for two weeks after the first treatment, but have taken the half dose since. The Benadryl puts me to sleep for about an hour, but I feel slightly light headed. My wife drives me home but I could drive.
I get short of breath for short periods of time when I bend over, like to tie my shoe laces. I have neuropathy in feet and fingers and take Lyrica (pregabalin) 225 mg twice a day. I get cramps in legs and ankle a couple times a night and have to get up and stretch and walk a couple minutes. I take Ambien (zolpidem) 5 mg at night, I take my Revlimid at night too. I take acyclovir twice a day and have for 12 years now. I take hydrochlorothiazide 5 mg in the morning. Just started taking pill for acid reflux. I take several supplements and vitamins. Just started potassium and magnesium.
I exercise at health club 2-3 times a week but I plan on upping that. Funny thing, I can walk on the treadmill 30-50 minutes, do a few arm exercises on machines, a few chest exercises in machines, and never get shortness of breath.
I have been getting high stomach swelling lately. A couple of months ago had a liver biopsy when my liver counts went up, but it only showed a little inflammation that the doctor really felt was likely due to the chemo. Also had colonoscopy and test down my throat into stomach and found nothing wrong.
I go to UAMS, Myeloma Institute for Research and Therapy. My local oncologist is here in Louisiana. He is excellent and consults with my myeloma specialist in Little Rock, where I go for special testing 3 to 4 times a year, and I send blood and urine samples there monthly.
In May 2014 my lambda light chains had doubled for 4 straight months, so I went to Little Rock and was put on a 28-day chemo regimen, 4 chemos 24/7 for 28 days, outpatient. After a week I started to get some low blood pressure counts, I fell down once a night for a couple of nights straight, I could feel it starting to happen, so I just eased myself down. Once I didn't quite make it and bumped my head, but was ok.
But the next time I fell I could not get up and had to call 911. Went to emergency room, they said I had a mini stroke. Was in the hospital a week. When I got there I felt fine but I could not move, control my left arm and hand at times. I had all kinds of doctors examining me. They told me not to get out of bed for fear of falling. I had nurse help me to bathroom and then could not get up without feeling faint. My arm and hand were functioning well again in 3 days and I wasn't feeling lightheaded on 4th day. Had to use walker for a day but told therapist I was walking without one after that.
After the 28th and last day I talked to my myeloma specialist late in the day and told him my left ankle was swelling. He sent me for a CAT scan that showed I had blood clots in my my left leg and thigh and one in my lower lung. In the hospital I went again for a week. Next morning I had a titanium filter inserted through an artery in my groin up toward my heart to prevent clots from reaching my lung or brain. Funny thing, of all the brain scans and MRI's I had, they didn't find anything there anyway.
After a week they let me go home. That 28 days set me back some, but got my light chains down and protein down a good bit, around 1.4. My cbc counts were a little off though. Got back on Revlimid only. I have been on Revlimid since originally diagnosed in 2004. I had a port put in a month ago and am glad I did; would get stuck with needle too often.
My creatinine is a big worry for me; it went from 1.4 two weeks ago to 1.7 today. I worry about my kidneys. In 2008 my kidneys quit altogether. Luckily I was in my doctor's office and he put me in the hospital immediately. A surgeon put a port in my chest within the hour and I started apheresis, similar to dialysis, each day for 7 days. On the third day my kidneys began to slowly start working again and then started working normally.
I did a lot of praying that week even though I had prayed many times a day since I started this ordeal. Prayer has no doubt worked for me. I have never once been nauseated in my 12 years with multiple myeloma. I have always felt good, except in May of 2014. Even then I would not complain but always said "let's go and do what had to be done to battle multiple myeloma UNTIL there is a cure."
When I was diagnosed, the life expectancy was 2-3 years. I was scared. New medical treatments have come a long way since then. I forgot to state that in July I had a stem cell transplant at UAMS (outpatient). It worked well. I have been in and out of remission and am presently in a relapsed status. Feeling pretty good, I played golf this week.
This had been a long STORY, sorry for that; 12 years is a long time. I will be 69 in July and thank God everyday.
Hello John, Although you have had quite a few challenges you have persevered. I respect your determination for 12 years. You also gave me new info about Empliciti. My platelet count is bumping along 25 to 45. I am now on every 2 week infusion. My myeloma cells are aggressive so I'm hanging in with full dose. Take care, thanks for sharing your story. Maureen