Tykerb causing dryness!
 

I've been on tykerb (only) for 16 months now, and have experienced all the same issues with fingers and toes, diarrhea, etc. as everyone here. Now I am experiencing extreme drying in "thin tissue" areas like the inside of my nose - nothing will keep it moisturized. I've tried Ayr gel spray, and other moisturizers. The thin "cuts" we all have on our fingers and toes are also showing up in my nose - it's gross and painful. It is a fight between having "bloody crusties" or bleeding that won't stop (sorry - that's gross too).

I'm going to ask my doctor about taking a break from Tykerb to help clear some of this up - just wondering if anyone else is having issues with extreme dryness.

Beth

Georgia Girl:
I had the same issue on Tykerb. In fact, the soreness of my nostrils was probably one of the worst side effects I encountered. I used vasline.....several times a day I would line the inside of my nostrils with it and it was about the only thing that helped. My nose bled from the sores and I had continual scabs! Not fun, but once I finished the TEACH trial, the sores went away. Try the vaseline. Hopefully it will work for you too!
Joannie

Are you in a trial? Or on Tykerb alone or in combo with a chemo or Herceptin?

I sometimes have dryness and torn tissue in my nostrils, so on those occasions, I use antibiotic ointment in my nostrils and it really helps clear it up. Usually I treat it for 2 days and then it doesn't recur for me for about 3-4 weeks... but everyone is different, so what works for me might not work for you.

Good luck, let us know.

I'm not on a trial, just had to quit herceptin because of LVEF being too low - 19%. Switched to Tykerb only and ejection fraction improved drastically. I'm hoping a month off of Tykerb will help all my little cuts clear up. I have one on my thumb that has not healed for over 2 months.

Beth

I will offer that Herceptin is probably more the cause of the nostril issues... I had much more problem with my nostrils on Herceptin than on Tykerb. But giving yourself a few weeks between treatments might very well give your body a chance to heal and adapt easier to the new treatment. Your body is probably just freaking out by the change.

I was in the TEACH trial for a year so don't know for sure whether I was getting Tykerb or a placebo, but I had the same nose issues you're having. I also keep vaseline on them and it helped a little but they never healed while I was taking the pills. I also had other issues with healing. Once I stopped taking the pills though, everything started to heal.

Pat

HI Beth -
have to nose in on this one. I thought it was the avastin! I am constantly doing nose control...either it's running - or I'm sneezing or bloody yucky stuff appears and I use AYR spray constantly or else I have some cuts usually following treatment which is why I blamed avastin. When I was on herceptin for 18 mos in the past I did not have these nose issues. Also I seem to have several canker-sores and a sore gum area so I am going to the dentist on Friday to make sure I am not having anything severe like that jaw bone side effect of zometa. Now I just sound crazy...

I do what Hutchy does - neosporin on any open nose cuts. But instead of vasoline I use AQUAPHOR which comes in small little tubes and is what all the teens are told by their dermatologists to use when they are on acne meds and have extreme chapped lips. AQUAPHOR is great for lips and finger cracks and putting up the nose.
It's like Spackle for me:) My onc fully approves it too. Someone else on the board has mentioned it in the past.

Maybe rather than stopping you can just cut back to 3 or 4 pills a day and see if you see an improvement. If I cut back to 4 pills I have a ton more energy and when I fly I always take only 3 pills that day and then have NO side effects at all. Good luck!
Flori