[MrPotatohead]

Kyprolis, Cytoxan, and dex - treatment update

by MrPotatohead on Thu Jun 23, 2016 1:34 pm

Hello Everyone,

As previously reported, I had an excellent response to a CCyd (KCD) regimen – carfilzomib (Kyprolis), cyclophosphamide (Cytoxan), and dexamethasone. This regimen is described in

Bringhen, S., et al, "Carfilzomib, cyclophosphamide, and dexamethasone in patients with newly diagnosed multiple myeloma: a multicenter, phase 2 study", Blood, 2014 (full text of article)

I have kappa light chain myeloma, and on this treatment my kappa free light chain level came down to 0.6700 mg/dL (normal range is 0.33-1.9 mg/dL). I was at 325 mg/dL at diagnosis. And CCyd was the third treatment I tried. Revlimid and prednisone worked for 3 months before I relapsed, and Velcade and dex never worked at all.

All my blood counts began to improve during CCyd, I completed the course of treatment, and am now on the maintenance regimen described in the referenced paper – just Kyprolis and dexamethasone in two infusions every other week.

However, I have noticed, since being on maintenance for 3 cycles, that my free light chains have begun to climb slowly – from 0.6700 mg/dL on April 21st to 0.6880 on May 19, to 0.7820 on June 17.

This is still within the normal range, and I wonder if it may be normal for the numbers to bounce around a bit, or if it is more likely that I am facing another early relapse.

Any opinions would be appreciated! My oncologist is on vacation, so I won't get to talk to him about this for another two weeks.

[mikeb]

Re: Kyprolis, Cytoxan, and dex - treatment update

by mikeb on Fri Jun 24, 2016 5:29 pm

Hi MrPotatoHead,

Glad to hear you've had a good response to the most recent treatment!

Yes, the free light chain levels can vary a fair amount. I was told by a representative of the company that makes the test commonly used to measure serum free light chain levels that both the kappa reading and the lambda reading can vary by as much as 30% day to day, just due to normal fluctuations.

So I would not be concerned by the readings you've had recently. In addition, those readings are all well within the normal range.

Keep up the good work!
Mike

[MrPotatohead]

Re: Kyprolis, Cytoxan, and dex - treatment update

by MrPotatohead on Fri Jun 24, 2016 5:59 pm

Hi Mike

Thanks a million for your message. What a relief!

I tend to really over worry about stuff like this, especially after having two previously failed treat­ments. So your message helped a lot and now I can relax and enjoy the weekend (except for the heat!).

Thanks again.

[mikeb]

Re: Kyprolis, Cytoxan, and dex - treatment update

by mikeb on Sun Jun 26, 2016 4:36 pm

Hi MrPotatohead,
Thanks for the kind comment. You made my day!

I know exactly what you mean about worrying over stuff like this. I try to moderate myself to not get too worried about numbers that go in the "wrong" direction, or get too happy about numbers that go in the "right" direction. But it's hard to do.

Hang in there. Here's hoping you see good numbers for a long, long time!

Mike

[Myeloma Fighter]

Re: Kyprolis, Cytoxan, and dex - treatment update

by Myeloma Fighter on Tue Jun 28, 2016 2:17 am

Mr P H,

I am curious about the side effects of Cytoxan. Did you suffer any gastrointestinal issues? Did you experience any hair loss / thinning?

I have been told that Kyprolis with Cytoxan and dex is a very effective treatment – more so than its predecessor, Velcade, Cytoxan, and dex (CyBorD). I have been reluctant to consider it as my next treatment only because of a general aversion to alkaline agents.

Having an idea of the side effects would be most helpful.

Thanks and all the best on your journey.

[MrPotatohead]

Re: Kyprolis, Cytoxan, and dex - treatment update

by MrPotatohead on Sat Jul 02, 2016 8:40 pm

Hi Myeloma Fighter

I did experience a few episodes of nausea and vomiting while on Cytoxan. I was prescribed 8 mg tablets of ondansetron for that, and if I took one at the first sign of nausea, that generally took care of it.

No hair thinning or other noticeable side effects.

Good luck!

[Myeloma Fighter]

Re: Kyprolis, Cytoxan, and dex - treatment update

by Myeloma Fighter on Sun Jul 03, 2016 1:05 pm

Thank you Mr. PH. This is very helpful.

Good luck to you!

[MrPotatohead]

Re: Kyprolis, Cytoxan, and dex - treatment update

by MrPotatohead on Sun Sep 04, 2016 10:22 am

Here's my latest treatment update after following a regimen of Kyprolis, cyclophosphamide, and dexamethasone (CCyd), followed by Kyprolis and dex maintenance, that brought me to a complete response.

As mentioned, beginning in April, my kappa free light chains began to rise again, albeit slowly. As of my latest test, performed last week, my kappa free light chain level has reached 2.08 mg/dL, which puts it just outside of the reference range. So I guess that means I am no longer in "com­plete response". Discouraging, because I have had a similar scenario with both Revlimid and subcutaneous Velcade.

My oncologist is back from vacation in a week, at which point I imagine we will try something else. C'est la guerre!