Taxol and Facial Numbness

MarieNJ

I have been on a 12 week taxol/herceptin treatment program.  My last taxol infusion will be this Monday.  I will continue with herceptin only for the next 9 months every 3 weeks.

I am experiencing facial numbness and was wondering if anyone else has had this SE while being on taxol.  A few weeks ago, I had a CT scan and MRI of my brain and thank God all were negative.  

Will greatly appreciate hearing from you.

Mary

mmtagirl

Hi Mary.  Yes, I have experienced facial neuropathy with taxol.  I have my final infusion next Tuesday.  My MO called it peri-oral neuropathy and said that more doctors are now recognizing it as a se with taxane based chemo.  Mine was mostly in my tongue, cheeks, lip area.  Glutamine seems to help.

Best to you.

tucker3

Hi Mary, yes I too have experienced a little numbness in the upper lip area. I had no idea to make the connection until I read about it somewhere on line. One more Taxol treatment to go for me as well. Take good care.

MarieNJ

mmtagirl & tucker3 - 

Thank you both for your input.  It helps to know there are others out there who are experiencing this not so common se.  What a coincidence all 3 of us will be done with taxol this coming week!  YAY!!   I saw the Dermatologist today for a rash (which is finally lightening up) on my knuckles of my right hand and he also said he believes all this numbness is from the taxol.

Thank you again.

Cheers to our final infusion!

shelleyt

my last taxol tratment was may 7th and that is when the numbness on my face and inside my mouth started. i then went on with herceptin until july 9th and the onc stopped it cuz of the numbness inside my mouth. it seemed to get worse after herceptin treatment. it has been 4 months since taxol and 2 months since herceptin and i still have numbness on the roof of my mouth , my gums, lips, right side of my face, my front teeth are numb also. it feels as if i have had a shot of novocane before a dental procedure// it is literally driving me insane. I also have dry mouth which is awful on top of the numbness. they want me to have a spinal tap cuz i cannot have an MRI cuz the tissue expanders i have in have a metal port in them , they dont come out until november 4th. all of the oncs say that they have never heard of herceptin giving numbness like this , but i am living proof.. i cant believe they ecpect me to believe that i am the only one on the planet who has this.. i just wish it would go away, but it has been this long and it isnt feeling like its letting up at all.. i pray it goes away...

MarieNJ

Hi Shelly - 

I think mine is from the taxol.  I have tingling and numbness on my feet and hands which are common se's from taxol.  Taxol can effect the nerves. Remember, taxol is accumulative. So the worst of the se's can be at the end.  I have a little numbness on the tip of my tongue, around my lips and mostly the left side of my face.  I also feel this funny sensation around my head. The doctors said that could be from the hair loss.  I even sometimes feel the numbness on my upper back and upper abdomen.  It is weird.  I went on neuropathy.org and read about  chemotherapy induced nueropathy.  It can effect the feet, hands, face, mouth, back and chest.  I have it all!!   It sounds like they set you up to see a neurologist.  I had the CT scan and MRI.  Thank God, it all came out negative.  I think this will take time to go away.  Some things go away quickly and some could take a while.

I finished taxol on Aug 28th.  My nails were fine while on taxol and only afterwards did I see discoloration on 3 fingers.  The taxol lingers in our system for sometime. 

Keep me updated and you can always private message me.  

Good luck!

Mary