Xeloda/Tykerb Scalp Sore

[koolmom]

Okay this is weird, may not be related to these drugs at all, but I thought i would see if anyone else was having this problem. My scalp is really really sore. It seems to be more on the top of my head. I also have a headache. But when I touch my hair on the top of my head, it hurts.

Any ideas?

[Carolyns]

No ideas, but I had that too, from different meds. I described it as my hair hurting...it was pain in my scalp. Kind of like when you wear a pony tail for too long or pull your hair up in the wrong direction.

This happened to me on Gemzar.

Let's see what the others have to say.

Carolyn

[SoCalGal]

Dear Koolmom,
My scalp is weird - my skin is weird - some brown spots that I have on my legs from long ago sun worshipping became darker and weird. My girlfriend and I have a running joke about my head lice because I think I can feel crawling at times. My hair hurts on top sometimes. Headaches - for sure from the ty/xe combo - second time I've had migraines on my week "off". My oncologist said that years ago, when they gave 5FU, there were a lot of skin issues and since xeloda is a derivative, he considers it all a side effect.

I suggest you call your doc and mention your symtoms. It's good to be reassured by the professionals.

okay I am going to call mine and nag for my markers from last week. Oy.
Flori

[StephN]

Hi -might get more responses if the question was asked on the main board.

My scalp was VERY sore for months and months. This was during and after taking 27 rounds of Taxol, Navelbine and Herceptin for my mets. It took a long time to resolve. Just washing my hair vigorously hurt. Ever heard of taking a tylenol before washing you hair? I had to do that so I could get through the washing, conditioning and drying process.

My med onc said that complaint was not very common when I mentioned it.

Hair cuts also had to be done gingerly for a while.

P.S. I also had some headaches in front right area of my head. Not like a normal headache. Onc said this WAS a common complaint.

[Joy]

My scalp feel sore off and on and it reminds me of the times I've lost my hair, which is often accompanied my scalp soreness. I hope I don't lose my hair on ty/xel. And Flori, I'm so glad you posted because I had been noticing that my freckles, brown spots and barnacles (as my mother calls those little raised skin things) are darker. I thought it was my imagination or just by virtue of being summer they darkened. And I know it isn't just in my head because a friend thought my face seemed more freckly. So I find it so interesting that you have noticed this too!

I'll be anxious to hear about anyone's test results and of course thinking the very best!

[Lolly]

I've had a sore scalp off and on for several weeks now, and my hair has been thinning quite a bit. Don't know if it's the Abraxane or Tykerb, but I suspect Abraxane as hair loss is listed as a side effect.

<3 Lolly

[koolmom]

Thanks for your responses! Glad to know I'm not the only one. I did call my oncologist and asked them regarding this. Symptoms of scalp soreness along with weird headaches, they wanted me to get head MRI. I did that yesterday. Now just awaiting results. I am hoping this is overkill, but better safe than sorry. My head hurts even if I move it to fast. It doesn't hurt to touch my hair/scalp hard, but if you just rub your hands over it.....oouch! Weird, I know. Now they have me concerned about brain mets. I don't think this is an indication of that though.

Hope everyone is doing well!

[Lolly]

Koolmom, I don't think you have anything to worry about either, my scalp feels just as you describe and my brain mri was clear. I'll be thinking of you as I know once the thought is in there it's hard not to worry, so big hugs and keep us posted.

<3 Lolly

[hutchibk]

i remember one of the abstracts from ASCO last week about Tykerb, and it suggested that something like 50% of folks in the trials suffered from alopecia? Or did I dream that? I hope it's not true, as I am so excited that my hair is growing back since Taxol....

[Joannie]

I too have had a sore scalp on the TEACH Trial. It seems to have subsided some. I've been on the trial about a month. It was really tender for awhile, sort of like when I lost of hair the first time on AC.
Joannie