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SoCalGal 04-08-2008 08:19 AM

wanted to post this here (c) too...
 
hand & foot probs without xeloda <hr style="color: rgb(204, 0, 51);" size="1"> <!-- / icon and title --> <!-- message --> I have been on tykerb for a year now. Herceptin for about 3 months and 1 treatment of Avastin. I am having weird feelings in my hands. Kind of like when you have a bandade on your fingertip and then you remove it and the finger feels weird-numb-sore. My whole hand feels like that (both of them) and they seem extra sensitive to hot water. Ditto for my feet - they can start out fine and then heat up in my shoes and then hurt like I'm walking on crunchy glass. I am not a very hot person (except for the obvious hot-girl ness) and don't know why my feet seem to randomly get hot and hurt for no reason. If I use my hands without wearing gloves it's trouble. I don't know if I should reduce tykerb for a few days and see if I improve or maybe just stop it for a few days to see if the hands/feet and rash resolve.

Does anyone else have this and what can we do about it?
Thanks.
Flori

Andrea Barnett Budin 04-08-2008 01:02 PM

Flori, Flori, Morning Glory...
 
Hey Flori in La La Land! I just wanted to share my experience, for whatever it's worth. I truly wish I had easy remedies for your woes, but here's what I think.

When I was on Taxotere/Herceptin my fingertips hurt (among many other more awful side effects). I thought that was weird. It was crazy. Then, soon after, my nails all turned Goth. Black and creepy looking. Then my nails began to lift from the nail bed (all 10, on my hands only) and an oozy crust was evident under the raised nails. I had pain in my hands and neuropathy which basically meant I seemed to drop everything I picked up (involuntarily). Good mandatory exercise for me who resists -- bending, stretching and cleaning up what fell every ten minutes.

I would wake up with the bottoms of feet feeling like I had been walking on hot coals all night. Serious creams and Vaseline (w/socks) seemed to mitigate this.

This went on throughout my 8 mnths of Taxotere, and beyond. The Taxotere did bring my ca into remission (obviously the GOOD news) slowly but surely, so I just endured all the rest, as the price I had to pay (which is the BAD news). At times I had to resort to Roxicet to relieve the pain. Meditation helped keep me sane and centered.

What I wish for you is REMISSION and a tango with Ned. God knows you deserve this as you have been through so much crap and have earned such status to be sure!

The Herceptin I remain on (from Nov '98 to present!!!!!!!!!!) has only effected my energy level. Whereas, you Morning Glory, seem to have fabulous strength (physically, psychologically and spiritually). I can't tell you how much I admire the woman you are!

Stay close to the Light my sweet. God is with you, and within you. Connect w/your sacred Spirit, at your core, and let it guide and empower you. I know you are open to such wisdom, Flori. May it come to bless your life. Sending you loving, healing energy. Remember -- you are never alone. Never. Teachers and Guardian Angels walk with you. They are just over your shoulder...

BIG HUGS, Andi http://cdn-cf.aol.com/se/clip_art/gs...mals-butterfly

IRENE FROM TAMPA 04-09-2008 12:08 PM

know it all too well
 
Hi Flori

I was on Tykerb/Xeloda for 1 year and I had severe hand/foot syndrom from the Xeloda (I am sure that the Tykerb did not help the matters )

The soles of my feet were extremely red and my hands turned dark. My toe nails looked terrible with oozing from under them and hollow areas (they never did fall off though) I had major cracking and peeling. I tried about every lotion I could but to no avail. Once I stopped the Xeloda, my feet and hands returned to normal.

I am on Xeloda again now with Ixempra and my feet are once again very sore (like walking on glass like you said) I went back to basics and now slather my feet at nite with good old fashioned VASELINE and put socks on and that seems to keep them from the severe cracking.

Good luck Flori - Xeloda is a great drug so I felt it was worth it. If you get worse, maybe your onc can lower the dosage. I had to and this time I am on a lower dosage so so far its been tolerable.


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