[JBarnes]

Re: Stay on Pomalyst or switch to Darzalex?

by JBarnes on Fri Jul 15, 2016 10:01 pm

Facing a similar decision. I'm curious to the side effects following infusion. In particular, on the day(s) following, do you feel like you could work a part time job? Still being employed plays into my treatment plans.

Thanks, Jerry

[JPC]

Re: Stay on Pomalyst or switch to Darzalex?

by JPC on Sun Jul 17, 2016 6:34 am

Jumping in really quick here. In my wife's case, Darzalex has not yet been needed (and we are hoping it will be a very long time until it is needed). However, I have read a lot about it (and you can use the forum search box to find find forum participants who have shared their experience with the drug). Usually, the first infusion is the worst, with potentially fevers and feeling ill for several days, and once you get through the first, it usually gets somewhat better, and goes down to almost no reaction, eventually in most cases. The big thing is the four to eight hour infusion time, which, depending on your center, you could potentially do on a Saturday. The reaction, I am advised, is more like an allergic one, which of course could be bad, but in most cases you gain a tolerance to it, and the reaction goes away.

I have asked about it in our treatment center (Memorial Sloan Kettering in New York City). Generally, the answer I get is that the patients who are given Darzalex are mostly very sick people with multiple relapses (they have been hanging on by a "thread"), and the drug is doing very well for them. Even at their very advanced condition, the majority of them can tolerate the drug, and in almost all cases there is some response, and often times a very impressive response.

I also have read that subcutaneous Darzalex is under clinical trial. Since many people report that the worst side effect is the long infusion time, that would be a very good thing.

Good luck to you.

[rumnting]

Re: Stay on Pomalyst or switch to Darzalex?

by rumnting on Sun Jul 17, 2016 10:09 am

My husband began Darzalex in January after becoming refractory to just about everything else. He is taking it along with Revlimid and dexamethasone. These past 7 months, he has felt the best he has in a couple of years. Unfortunately, his last M-spike took quite a jump, and a PET scan shows new myeloma activity.

[Jackbo1]

Re: Stay on Pomalyst or switch to Darzalex?

by Jackbo1 on Tue Nov 08, 2016 3:26 pm

Progress report:

Since I'm the guy who started this thread, I thought a brief progress report might be in order.

Initially the Darzalex seemed to be working well. I began the treatments in February and a PET scan in early June showed no new lesions and a reduction and no activity in the existing ones.

Unfortunately, almost immediately after that scan I began to have intermittent chest pains. Since I have a nonsecretory type of myeloma, there are no blood markers such as M-spike to provide a status of my disease. That meant I had to wait until my insurance would pay for another scan. I finally had a new scan in October and it showed renewed activity on existing lesions.

In a meeting today with my oncologist, we decided to irradiate at least one or two of the three newly active lesions in order to relieve the pain. He also added Pomalyst to my existing Darzalex and dexa­metha­sone therapy. Since I had good results but bad side effects with Pomalyst last year, I am a little concerned about this decision, but I think we are running out of options and I am willing to give it a shot . That's about it.

I will update y'all in a month or so. Good luck to all.