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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Kyprolis (carfilzomib) Experiences?

by Lisa B. on Mon Dec 03, 2012 2:47 pm

Hi Everyone!

It's been quite some time since I posted. My mother was diagnosed last November with IgG lambda multiple myeloma (FISH detected del 13 & t(4;14). She initially responded very well to Rev + low dose Dex, but true to her "high risk" profile, she became resistant to this treatment and IgG began to climb again after 4-5 months. She was then started on subQ Velcade and responded well for 6 months but has now shown a slight IgG increase for 2 consecutive months. Her oncologist wants to start carfilzomib as a next line of treatment.

Mom is doing extremely well, all things considered. She has no bone involvement, blood levels are good, no kidney damage, and overall health is good. She has had no infections and little to no peripheral neuropathy from the Velcade. Her only issues with treatment so far are, (in order of severity): "chemo brain", dex crash (fatigue), and a mild case of shingles. Mom has always been a super organized and efficient lady and she claims the "chemo brain" slows her down and makes her feel "stupid". When I asked her to explain, some of the "problems" she described are things I do all the time, and I certainly can't blame it on "chemo brain"!! :)

I would love to hear some feedback from those of you who have already taken or are taking carfilzomib (Kyprolis) regarding the "goods" and "bads" of this treatment.

Thanks so much!

Lisa B.

Lisa B.
Name: Lisa B.
Who do you know with myeloma?: My mother, Barbara Henson
When were you/they diagnosed?: 10-28-11
Age at diagnosis: 71

Re: Kyprolis (carfilzomib) Experiences?

by cometcountry on Tue Dec 04, 2012 1:00 pm

I had the good fortune to be in a clinical trial for Carfilzomib-Dex-Revlimid. Within 2-3 months, most people in our trial saw a marked reduction in their Multiple Myeloma numbers. When the trial was over after 2 years, several people showed no sign of Multiple Myeloma after a bone marrow test. There is no way to know how long that will last, but it's very encouraging. I was on a reduced dose of the drugs at the end of the study, so my numbers didn't hold. But I'm back on the same drugs now and again my numbers are great. I'm thrilled with the results. My blood counts are even holding up this time around. The advantages for me: effective, no nausea or hair loss, very little fatique, only 2 hours in infusion 6 times a month. Wishing you the best with your decision.

cometcountry

Re: Kyprolis (carfilzomib) Experiences?

by Stann on Tue Dec 04, 2012 1:28 pm

Comet--thanks for uplifting post! At some point, that will probably be on my "menu".
I wonder what percent of patients had a good response to your regiment?
Velcade didn't do much for me, so I've been concerned about whether carfilzomib will work for me when the time comes.

Stann

Re: Kyprolis (carfilzomib) Experiences?

by IndyMike on Tue Dec 04, 2012 1:50 pm

Thanks for that very encouraging report Comet. How many prior treatment regimens had the participants in the clinical trial had if any?

IndyMike

Re: Kyprolis (carfilzomib) Experiences?

by terryl1 on Tue Dec 04, 2012 2:10 pm

Hi, I am currently in my 8th cycle of CRD--carfilzomib/rev/dex-- at the NIH for newly diagnosed myeloma. I would imagine Comet was in the CRD trial in Michigan? The NIH trial now is the only open one to my knowledge. I personally have had great results. I am light chain only and my disease is tracked by the FLC assay primarily. When I started in early May, my kappa LC's were 16,200! They are now at about 60 to 70. In early May, my blood counts were a shambles and I felt like crap. Now they are normal...hemoglobin 14.7, WBC 5,000, etc. I feel and look 100% better and that is on chemo. One point of my trial is to see if the response caused by carfilzomib could equal or better a SCT. Participants in my trial get their stem cells collected and stored, but we complete the almost two year protocol without a SCT. Also, Kevin Jones, who writes columns for the MB, has written about carfilzomib in his columns. Read his columns in the archive section. For me, the toxicities have been minimal....no PN, etc. The worst reaction I had was non-chemo....pamidronate (Aredia). It gave me a flu-like haze for three days. Terry L.

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: Kyprolis (carfilzomib) Experiences?

by Sioux City on Tue Dec 04, 2012 4:08 pm

My husband started clinical trial with carfilzomib Feb 2012. He did well through Cycle 7, (no side effects of mention). His M-spike continually lowered for 7 months. At the end of 7, his M protein doubled, then doubled again to 4.0. He started Cycle 8 with carfilzomib and 15 mg of Revlimid. After Cycle 8, abnormal M protein down to 1.4. He is just starting Cycle 9 with Carf and Rev today. He was diagnosed 6.5 years ago, no SCT, had great luck for over 4 years with Revlimid and Dexamethasone. We tried malphalan?, with poor results. Then entered clinical trial. I'm not quite as up technically as are so many of the people who write posts so I hope this makes sense. The marker I follow is the abnormal M Protein, or M-Spike. I know there is a difference in the way the proteins present. My husband was diagnosed after experiencing bone pain; he has a plate in his left arm, he missed two days work. He can be prone to pneumonia or "pneumonia scares" so has had some down time in the hospital. One thing I have learned is ..."run, don't walk" to ER or to your doctor if you suspect something...a cough, a slight fever...just GO. My husband is 80 years old, still running his business and I probably won't see him until 6:00 or later tonight. There is hope.

Sioux City

Re: Kyprolis (carfilzomib) Experiences?

by Kevin J on Tue Dec 04, 2012 7:38 pm

I have been on CRD as part of the trial for newly diagnosed patients since Mar 2011. Currently in my 22nd cycle, with two more to go after this cycle. I reached VPR after 3 cycles, and sCR after 12 cycles. Side effects have been very manageable – slight queasiness for a couple days after treatment, a bit of fatigue, water retention, and constipation. I tend to get a bit hyper and on edge from the Dex too. Red and white cell counts have been consistently around the lower range of normal throughout treatment. No issues with hair loss, peripheral neuropothy, or other such things common with other forms of chemo. I was healthy and active prior to diagnosis and have been able to remain so throughout my treatment, including several strenuous activities such as biking, lifting weights, and playing hockey (I even skate on Thursdays following treatment on Wed and Thu).

Kevin J
Name: Kevin J
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 52

Re: Kyprolis (carfilzomib) Experiences?

by Lisa B. on Tue Dec 04, 2012 9:27 pm

Wow! Thank you all so much for taking the time to respond. I'm very encouraged by all the positive results with minimal/manageable side effects, and am so happy for each of you that are being helped by this treatment!

Sioux City, I'm especially excited to hear that your husband achieved good results from adding Revlimid when carfilzomib alone stopped being effective. I'm assuming that he must have become refractory to Rev/Dex at some point, so it's great news that he is still able to get a response from the Revlimid/carfilzomib combination! Thank you for sharing his story, for the good advice, and for the HOPE!!

I will be sure to share Mom's experience with carfilzomib with the group. She has her first two infusions Mon. & Tue. of next week.

Lisa B.
Name: Lisa B.
Who do you know with myeloma?: My mother, Barbara Henson
When were you/they diagnosed?: 10-28-11
Age at diagnosis: 71

Re: Kyprolis (carfilzomib) Experiences?

by Chris M on Tue Dec 04, 2012 9:56 pm

Hello,
My husband began carfilzomib/Revlimid/Dex in June 2011. His treatment plan is for him to continue it until May 2013. His M protein was originally either 5.1 or 4.9 depending on the two different hospitals. His M protein dropped steadily until reaching 0.1 where it has remained for more than 6 months now. Still hoping it goes undetectable but realize even if it does, it's most likely lurking somewhere.

My husband has experienced some of the more significant side effects while on carfilzomib, so I think that just illustrates how multiple myeloma affects everyone differently. He has had a DVT and takes Lovenox injections daily for the last year and we expect that to continue. His breathing has been affected and despite taking Advair and albuterol, he gets winded just walking quickly and sometimes just getting dressed ( esp fighting to get those compression stockings on before having to travel long distances!). He also tires very easily still, probably because his hemoglobin consistently ranges in the high 10's. We were excited when it got to 11 one week but two weeks later it dropped again. To top it off, last week he learned he developed cataracts in both eyes and the relatively rapid onset has been attributed to the Dex. However, his oncologist said the Dex is too important to stop and so cataract surgery has been scheduled. And of course, he's had the textbook broken bones and infections.

On the plus side, he's had milder neuropathy than some multiple myeloma folks experience, but this is gradually getting worse as each cycle passes. I hang onto the positive thoughts that his multiple myeloma is not active now and his quality of life still allows him to work when he feels well enough, visit family, he still does a lot of the "guy" things around the house like he always did, and he's been deer hunting this fall!

I wish the very best for your mom and everyone else dealing with multiple myeloma.

Chris M

Re: Kyprolis (carfilzomib) Experiences?

by Lisa B. on Tue Dec 04, 2012 10:31 pm

Thank you for responding, Chris. I'm very glad your husband's myeloma is not active and that he's still able to do the things he enjoys. I pray that this will continue for a long, long time and that the side effects will not get any worse.

Yes, multiple myeloma is certainly an "individual" disease. It's difficult not knowing what to expect, but like you, we hang on to the positives, adapt/adjust when we have to, and hope & pray for the best! :)

Thank you again!

Lisa B.
Name: Lisa B.
Who do you know with myeloma?: My mother, Barbara Henson
When were you/they diagnosed?: 10-28-11
Age at diagnosis: 71

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