[aussiegirl]

Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by aussiegirl on Mon Jun 08, 2015 11:22 am

Hi,

I am on the second week of the first cycle of Kyprolis, Doxil, dex, and Pomalyst.

I noticed today that the skin is peeling off my lips. It's not sore, and I have no mouth sores, just layers of skin coming off.

Does anyone else have this problem and what did you do to overcome it?

[SharonH]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by SharonH on Tue Jun 09, 2015 8:05 pm

Hi there,

I am on the Gold Coast, and yes, the peeling lips drive me crazy. It slowed down a lot after my stem cell transplant (SCT), which was in February. Lip gloss is only way, the denser the better. The paw paw stuff is ok but not really buttery (?) enough. And scrubbing the lips with a toothbrush morning and night helped a bit.

Cheers

[Robshines]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by Robshines on Wed Jun 10, 2015 6:16 pm

Hi,

Just a query and unrelated to the peeling lip problem.

We live in Brisbane, Australia and my husband is 3 1/2 years down the track from diagnosis. He has had a SCT and trials of many drugs, all of which work initially and then the FLCs start coming back and we are back to square one. I note you are on Kyprolis and was wondering how you're finding it. We have mentioned this to our oncologist and he says it is not available in Australia.

We are starting to run out of options and Kyprolis and Pomalyst are our last hope apart from another SCT, which my husband doesn't really want to undergo again as the first one only brought about 6 months remission. If you can get Kyprolis in Australia, we'd be willing to give it a shot.

Thanks and good luck in fighting the good fight!

[Robshines]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by Robshines on Fri Jun 19, 2015 5:00 am

Hi Sharon,

I submitted a query previously regarding the Kyprolis. If you are in Australia I'd love to know how you are getting the Kyprolis as our oncologist says it is not available here and we are getting desperate. We are in Brisbane.

Cheers,
Robyn

[Cheryl G]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by Cheryl G on Fri Jun 19, 2015 2:34 pm

Hello Robyn,

I'm not 100 percent sure, but I believe "aussiegirl" lives in the US, despite her username.

I checked clinicaltrials.gov to see if there are any Kyprolis (carfilzomib) trials currently running in Australia that might help your husband get access to the drug, but I couldn't find any that he would be eligible for. However, you might want to contact Amgen's Australian headquarters to see if perhaps they know of any programs to give your husband access to the drug, perhaps on a compassionate use basis.

You also may want to see if your husband is eligible for a trial testing some other new myeloma therapy, such as one of the CD38 monoclonal antibodies (daratumumab, SAR650984, and MOR202). This link will show you a list of myeloma clinical trials that are currently recruiting patients and which have locations in Australia.

Good luck!

[aussiegirl]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by aussiegirl on Sat Jun 20, 2015 5:00 pm

Hi,

Aussiegirl here. Yes, I now live in California and see Dr. Berenson in LA. Have been on clinical trial for Kyprolis on a previous regimen, but this particular regimen with Kyprolis is not a trial. This is my 4th regimen in 18 months!

[Robshines]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by Robshines on Mon Jun 22, 2015 2:04 am

Oh thank you for getting back to me, Cheryl and Aussie Girl!!

We have now cornered our oncologist and asked that he try and get his hands on Kyprolis, as my husband is now not eligible for Velcade (it wasn't doing anything for him anyhow) and, as I mentioned before, our options are fast running out.

Our doctor has made application for Pomalyst and dex and, if we can get our hands on it, he will include the Kyprolis. We will investigate your link Cheryl, so wish us luck and, as I mentioned, keep fighting the good fight!!

Cheers from downunder.
Robyn

[Wayne]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by Wayne on Mon Jun 22, 2015 7:11 am

Have you thought about trying daratumumab in a trial?

[Robshines]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by Robshines on Wed Jun 24, 2015 3:59 am

Hi Wayne,

Thanks for the thought. Daratumumab hasn't come up in our discussions with the oncologist yet (surprise, surprise). My husband and I seem to be the ones coming up with the suggestions to our oncologist at the moment, so I'll run it by him.

Are you in Australia? If so, what is your current treatment?

Cheers, Robyn

[Wayne]

Re: Skin peeling off lips - Kyprolis, Doxil, Pomalyst & dex

by Wayne on Wed Jun 24, 2015 5:05 am

Hi Robyn,

I am actually Wayne's wife. Unfortunately Wayne passed away in April. Dara­tu­mu­mab is being run in a trial in Sydney, if I can be of any help as far as treatments in Australia go, please don't hesitate to contact me.

Good luck,
Patricia