[Joy]

Kyprolis & Pomalyst together - any experiences?

by Joy on Thu May 22, 2014 7:16 pm

I have a couple of questions for anybody that might be able to give me some feedback on their experience.

1) If you've been on Kyprolis and Pomalyst, did it work for you and if so, how long until you saw results?

2) Have you had these drugs with an added drug such as Cytoxan [cyclophosphamide]?

Apparently I have a VERY aggressive myeloma. My auto stem cell transplant was in October, plasmacytomas formed on the skull at day 80. RVD [Revlimid, Velcade, dexamethasone] at induction levels started on day 90. Two cycles of that and then two reduced cycles at maintenance levels. Had radiation on the skull plasmacytomas. One went away and one is larger.

Now on Kyprolis, Pomalyst, and dexamethasone and am in the second week of the second cycle. My M-spike has gone from 1.2 at the beginning of this drug regimen to 2.3 now.

My specialst at Farber thinks it's too soon to abandon it but I think I'm ready for an alkalating agent either added to the mix or as an alternate. My hip is now really hurting and I have a golf ball growing out of my skull. I go there tomorrow and am going to advocate for that.

Any thoughts or experiences?

Thanks!

[Jade]

Re: Kyprolis & Pomalyst together - any experiences?

by Jade on Fri May 23, 2014 7:57 pm

Hi Joy,

My husband just completed 8 months of Kyprolis, Pomalyst, dex, and IV Cytoxan. It was very effective, we saw an effect by the second cycle, even though he had become resistant to Kyprolis and Pomalyst individually.

The only problem he had was extreme fatigue. He has just stopped treatment for a few weeks to have a break, but he has aggressive myeloma, has had bone and head involvement so the doc's don't want to keep him off meds too long. They will probably put him back on just Kyprolis and Pomalyst. Hopefully that will keep him stable for a while.

After 8 years of treatment for myeloma you get to the point where you have to try new combinations to see what works for you and balance it with some quality of life. Wish some of the new drugs would get approved.

[Joy]

Re: Kyprolis & Pomalyst together - any experiences?

by Joy on Sat May 24, 2014 3:41 pm

Thanks for your reply Jade! That's very encouraging. I'm going to mention it to my oncologist and will hopefully have a new plan in place soon. I wish you and your husband good things and hope that his fatigue eases soon.

Thanks again!

[JonEman]

Re: Kyprolis & Pomalyst together - any experiences?

by JonEman on Thu May 29, 2014 10:59 am

Hi Joy, I had been on the combination of Kyprolis and Pomalyst for approaching 6 months. I saw improvement after 2 cycles. The drug maker claims it can take up to 6 months to respond.

For me, the only issue is the side effects seemed to have doubled too. The combination, although working, hits me hard. I know it's different so I would weight its effectiveness against potential side effects, try it, and see how it interferes with quality of life aspects. With the aggressiveness of your case it might be an effective treatment.

This combination is the first time I have responded to treatment in over 7 years. That includes the stem cell transplant I underwent several years ago.

[Joy]

Re: Kyprolis & Pomalyst together - any experiences?

by Joy on Fri May 30, 2014 7:24 am

Hi Jon,

Thanks for your reply. Wow! That's great that you are responding to it. Hopefully the side effects can be managed or will subside for you.

I did not realize that the manufacturer said a time for effectiveness could be as long as 6 months! Wow!

On April 1st of this year my IgG had crept up to 1705 and by May 23rd it was 3281. I started on this regimen on April 15th. Now an MRI from this week shows that I have a lot more significant bone damage in my femurs and pelvis since February.

I was suggesting that they change me to CYCLONE which would involve keeping the Kyprolis and dex, changing Pomalyst to thalidomide and adding Cytoxan. My specialist's first idea was to put me in the hospital for DCEP.

I am not ready to go down that road and sacrifice quality of life for a treatment that I believe has a higher mortality rate and a shorter durability than an auto stem cell transplant. Ay Caramba!

After taking my concerns into account, both of my doctors offered the idea of Velcade, Doxil, Cytoxan and dex. So, that is what will start next week.

It seems that the only things that are for sure with this disease is that everyone responds differently to it and the treatments and that everyone experiences anxiety. In a way, we are all in our own uncharted waters.

But, at least there are advances and possibilities for treatment. My dad passed away in December from cancer of an unknown source. He felt fine in October when he was diagnosed, declined toward the end of November and died on December 16th.

So I guess I should be thankful that there are options to keep me ticking for awhile. It's all relative.

Thanks again for your response and best wishes for your continued treatment. Positive thoughts your way!

[first_finder]

Re: Kyprolis & Pomalyst together - any experiences?

by first_finder on Fri May 30, 2014 5:17 pm

My wife was on Krypolis, Pomalyst and dexamethasone for about 9 months. Early this year she could not breathe adequately enough to walk and talk at the same time. The Krypolis was causing her lungs to deteriorate to the point of needing oxygen, and the Pomalyst caused and is still causing serious fatigue.

She has had to quit Krypolis completely and has had the dose of the Pomalyst reduced twice so far this year. Hope this helps.

Interestingly, we caught the problem because of a physician's lack of concern about symptoms and x-ray results. This is the second major problem we have uncovered at the center and had to force the issue. Our local oncologist and family doctors helped us solve the issues. The problems were discovered by a major myeloma center's testing, but weren't caught by their physicians. In this recent case we were told the results were normal.