Herceptin

bjsvaughn

Herceptin

bjsvaughn

Anyone out there taking herceptin. I started chemo with  taxotere and carboplatin and it did me in so we went to weekly taxol... After 7 weeks I could not feel my fingers so we stopped that for the past 2 weeks ( secretly I hope that we are done). I now am doing Herceptin and trying to figure out what symptoms are from chemo and what are herceptin.. Lord help me when they add the tamoxifen.... The Herceptin folks send so much mail and it all states the "damage to the heart" clause... making one feel soooooo comfy about dripping it into your body... Anybody had Herceptin or neuropathy in the fingers??? 

cmharris59

I did not take the same protocol that you have taken. But I did take Taxol and Herceptin. I developed permanent neuropathy in my legs and feet and congestive heart failure from the Herceptin and Adriamiacin. Be aware that this only occurs in rare cases.

Some people get the pain and numbness and it is only temporary. Some people only see a slight drop in their heart function during Herceptin treatments. Your doctors should be monitoring your heart with scans every few months. The neuropathy may be controlled or managed with the use of Lyrica or Neurontin. These may also help you sleep.

C

Juli50

I have congestive heart failure and neuropathy too. I had 4 AC followed by 8 weekly Taxol and Herceptins (quit Taxol from finger pain). 3 more weekly Herpceptins, then hospitalized with CHF. I am on Digoxin because my ejection fraction has not improved since March. I have a little neuropathy left in my feet, my fingers are better. My skin stings when I get hot... apparently an even rarer side effect from who knows what. It started in the middle of rads (mid-April) and no doctors can make it go away. Most look at me like I am making it up.

I am taking half the recommended dose of Tamoxifen (10 mg instead of 20 mg), since 9/19 and no SE's so far.

I'm doing great now that summer is over, but I can't exercise yet...not till the stinging goes away.

Best of luck to you!

hugs

Mocity

I did Taxol + Herceptin and finished the Herceptin last month (Nov 09).  DUring the weekly Taxol I developed neuropathy.  I also had nail issues which added to the finger and toe pain.  However, the neuropathy got better once I stopped Taxol.  I would say within 3 months of ending the Taxol the pain went away fully.  Every now and then my fingers get a little "stingy" but nothing to bother me really.

Good luck to you!

rosemary-b

I also have congestive heart failure from Herceptin. It has been a year and a half and my heart is not back to normal. I am taking 3 heart meds and had a defibbralator(sp?) put in because my heart function went so low the cardiologist thought I might suffer from sudden cardiac death. Get MUGA scans or echcardiograms regularly and ask your onc what you can do to protect your heart. Severe heart problems are rare but they do happen.

I also had neuropathy and used Lyrica. It helped. Every once in a while I will get tingly still but it is nowhere near as bad as it was. Now it is just annoying, not painful.

AzKim

I did Taxol and Herceptin also. I had to stop (Herceptin)  just once for a month because of the heart issue,.but,.I was back to normal after the month and had no other problems with it. My last treatment was March 20th. I had it for a year. Taxol was strange,.the nueropathy is the pits,.for me anyway. It's been over a year and I STILL have trouble with my toe nails and pain. Joints ache nonstop,.but,.nothing I can't deal with. I've noticed,.the more I move,.the better I feel. Good luck