[sunriseinn]

Experiencing lots of side effects during treatment

by sunriseinn on Tue Jun 28, 2016 8:54 am

I have had a variety of different combinations of drugs.The current one is Kyprolis and Cytoxan, which I'm being taken off, and dex. With this combo. the Kyprolis most likely has given me short­ness of breath and tightness in my chest, among other things. I spend a lot of time down because of the side effects, and maybe have a day and a half where i feel functional. I'm anemic along with neuropathy, a fall risk, lots of fatigue, weight loss(60-65 pounds since last August).

Has anyone else had these issue with Kyprolis and, if so, how do you deal with the side effects?

I was taken off of Velcade, Revlimid and Ninlaro due to all the problems they created. In spite of this, my M-spike has gone down from 2.7 to 0.45 g/dL (27 to 4.5 g/L). I just can't seem to get a combo of drugs that give me a decent quality of life. It's like I'm just existing from day to day for the most part.

I have chromosome deletion deletion 17, so a stem cell is out of the question, although I'm being asked to consider an analogous [?] stem cell that supposedly has a 20% mortality rate due to the harshness of the side effects. I'm 55 years old.

Thanks for any advice posted.

[Denise H]

Re: Experiencing lots of side effects during treatment

by Denise H on Tue Jun 28, 2016 11:58 am

I haven't posted much, but have been a faithful reader here for several years.

So sorry you are in this situation. I am not able to give some of the more intricate advice or in­formation that many on this forum provide. I study the disease enough to know the basics and to ask questions of the professionals taking care of my husband. He has kappa light chain myeloma going on 9 years with a q13 deletion.

Hubs has had many chemo regimens and two autologous stem cell transplants. To make a long story short, when it came time for him to try some of the newer drugs, we were disappointed. He could not tolerate Pomalyst (pomalidomide) (extreme back pain and fatigue) and Kyprolis (carfilzomib) was not effective enough. He is currently on Darzalex (daratumumab), Velcade and dex. We can only hope for the best. With just two treatments under his belt, it is too early to tell. He is also undergoing plasmapheresis to bring his kidney function back. Kidneys went downhill on Kyprolis / dex.

[Denise H]

Re: Experiencing lots of side effects during treatment

by Denise H on Tue Jun 28, 2016 2:41 pm

I wouldn't begin to advise you on a stem cell transplant, but you are certainly young enough to consider it.

I wanted to add that even though we are hitting a wall right now, with my Al in the hospital for more than a few weeks' stint, he has had periods of excellent quality of life, all things considered. Try not to linger in negativity if you can. There will be better days ahead for you. You have quite a few options.

[Little Monkey]

Re: Experiencing lots of side effects during treatment

by Little Monkey on Tue Jun 28, 2016 10:30 pm

Just a point of clarification, were you given Velcade (bortezomib) and Ninlaro (ixazomib) together as a treatment?

[rumnting]

Re: Experiencing lots of side effects during treatment

by rumnting on Wed Jun 29, 2016 2:26 pm

Having a 17p deletion does not make you ineligible for an autologous stem cell transplant. My husband had one 4.5 years ago (as have many other contributors to this forum) and is doing well.

Make sure that is the only reason why your doctor says that an auto transplant is not a viable option for you. If that is the only reason he gives, I would strongly recommend a second opinion.

[Multibilly]

Re: Experiencing lots of side effects during treatment

by Multibilly on Wed Jun 29, 2016 5:46 pm

Sunriseinn,

You will likely get different opinions as to whether to do an autologous transplant with a 17p deletion. There were some now somewhat dated studies done that showed the outcome for del 17p patients undergoing ASCT yielded somewhat poor results.

"Myeloma patients with translocation t(4;14) or deletion of 17p have poor outcomes after treatment with high-dose therapy, and these patients require novel agent–based induction, consolidation, and maintenance."

Source: M.A. Gertz and D. Dingli, "How we manage autologous stem cell transplantation for patients with multiple myeloma," Blood, August 2014 (full text of article)

But you should balance the above comments against these threads:

"Deletion 17p and stem cell transplants" (discussion started Apr 18, 2015)

"Great article - cytogenetics (chromosomal abnormalities)" (Nov 3, 2015)

For example:

"recent studies show that early use of bortezomib, autologous stem cell transplantation and bortezomib-based maintenance may improve outcome significantly in patients with high-risk multiple myeloma owing to del(17p)"

So, like Rumnting mentioned, getting a second opinion would make a lot of sense.

Whether to do an allogeneic (donor) stem cell transplant or not involves even more soul searching than doing an autologous transplant. Mark11 on our forum would likely argue that one's best chances for success with an allo transplant would be to do one early on in one's treatment program.

And, of course, you can also simply consider the non-transplant route and investigate some of the brand new therapies, such as the monoclonal antibodies – Darzalex (daratumumab), Empliciti (elotuzumab), etc. Some patients experience little or no side effects while on the new antibodies.

[dianaiad]

Re: Experiencing lots of side effects during treatment

by dianaiad on Thu Jun 30, 2016 12:13 am

I'm a little confused here. I, too, have a P17 deletion, and I not only had an autologous stem cell transplant, I've been in remission for close to three years as a result. If that is the only reason your doc has given you for not having one, I would, along with others on this thread, urge you to get a second opinion.

That said, this disease is very individual; we all have different experiences with it. I hope that you will soon find a medication combination that gives you a good quality of life as well as controlling the disease.