Crusty nose with Tykerb

Roz · 04-20-2008, 08:30 PM

Has anyone else experienced a crusty nose while on Tykerb? It is similar to the Herceptin crusty nose, but didn't appear until I had been on Tykerb 6 months. This was the same with Herceptin.

Joannie · 04-21-2008, 05:55 PM

A crusty nose is a good way to describe it! I had bloody nose in the beginning of Tykerb. But my nose hasn't stopped being crusty from about 9 months to present. It scabs, crusts, runs, etc. I thought maybe it was just from the dryness of the winter time. I swab the inside of my nose with vaseline about 4-6 times a day. It seems to help.
Joannie

PatS · 04-21-2008, 06:13 PM

I was also part of the TEACH Trial. I didn't get a lot of symptoms so am not sure whether or not I received the actual drug, but while I was taking the pills I constantly had sores and cracks in my nose that would never heal. Once I finished the trial and stopped taking the pills my nose cleared up.

Pat

Joannie · 04-21-2008, 06:19 PM

Pat:
When did you finish the TEACH trial? I am done around May 8. I am fairly certain that I got the real thing. I have had quite a few symptoms. Did you notice any difference in anything when you were done?? I am just wondering if I will notice anything different when I complete the trial. I hope the crusty nose goes away!! Will they ever tell you if you received placebo vs Tykerb. I thought my trial nurse said they would tell me after I was done.
Joannie

PatS · 04-21-2008, 07:42 PM

Hi Joannie,

I finished the trial the first week of January. I didn't have the definite symptoms you had so I'm not sure whether or not I got the drug. I did have some slight issues that resoloved once I finshed the trial, so I'm hopeful that I did get the drug. I had a couple of mild symptoms at the beginning that went away a couple of weeks after they started. I had the nose issues the whole time, and from about August til I finished the trial I had problems with things healing. Along, with my nose i had a few other things that wouldn't heal for months and then once I stopped taking the medication everything started healing. I also don't seem to be as tired as when I was doing the trial. Hopefully, whatever symptoms you're having will go away once you're done too. Unfortunately, we don't get told which we got until they unblind the study. According to my dr. they probably won't unblind it until they get whatever info. they're trying to get from the study....so it sounds like it will be a while.

Pat

hutchibk · 04-22-2008, 08:31 AM

Over the year I have been on Tykerb, I have noticed an increase of crustiness in my nostrils, but it is not terribly bothersome for me. Early on it was accompanied by mild abrasions in the nostrils and I just used neosporin on a Qtip applied to those spots and it healed really quickly. I don't get runniness, tho, that ended when I stopped Herceptin.