Anyone else feel HORRIBLE on Herceptin?

tousled1 · 02-21-2007, 10:00 PM

Kelly,

You are not alone! I too feel absolutely terrible on Herceptin. I've tried the every week and every three weeks, reconstitution with saline water (makes it a little more bearable), headaches constantly, and just an overall feeling of not feeling good. I have a PET/CT scan scheduled for Friday morning and when I go to the oncologist on March 1 for my next treatment I should get the results of my last HER2 serum test. I have been thinking very hard on this issue and have decided that if my PET/CT is clear and my HER2 serum level is down I might just stop the Herceptin. I only have until June to go but I'm feeling worse with each treatment. All I want is to feel "normal." I have no idea anymore what "normal" is but I know it's not how I'm feeling now. I have tried taking benedryl and tylenol right before the infusion and that doesn't help. Another reason I'm considering stopping the Herceptin if everything is ok is that my last echocardiogram showed atrial enlargement. I was informed that's from the Herceptin and it will be permanent. I don't want to beat this disease to then die of heart problems. My heart has me very concerned. Sorry for rambling but sometimes it helps to put things in writing.

KellyA · 02-22-2007, 01:42 AM

Thank you all so much for your replies. Everyone here is just wonderful and so encouraging. I feel a little ingrateful complaining about a drug that is so wonderful and has helped so many people, and try to keep telling myself that "this too will pass" as all of the other yucky parts of treatment have- that philosophy doesn't seem to be working lately!

I do get benadryl before each dose and take tylenol- that might be why I don't feel badly until about 48 hours after. It is like clockwork. I get Herceptin on Thursdays, and by Saturday the aches and pains start ( I feel like I have a really bad case of the flu coming) and the nausea starts. I have the diarrhea all the time (funny u would think that I might have lost a little weight- of course not the case!)

I am hoping that things might improve over time or that i will find a solution- September is a long time away. I will definitely try to make sure that I am drinking enough water and will try to eat a little differently. Thank you again for all of your help. I JUST LOVE EVERYONE HERE. Can I bring you all along on my next visit to my onc?!?!

Love, Kelly

sassy · 02-22-2007, 01:57 AM

Kelly,

Sorry you are having tough times with the herceptin. I remember one night just crying and telling my husband, I was just tired of hurting. Not sure if this will help, but sometimes Ativan seemed to help me. My worst days were always 48 hours after treatment too, but the farther into treatment--it did seem to get easier.

Hope things get better.
________
AdriannaMarie cam

MGordon · 02-22-2007, 02:20 AM

Lisa had her treatments every Thursday (herceptin + something for over three years). We used to joke about her lost days... She'd be "knocked out" the rest of Thursday (usually due to Benadrylt/Tylenol) then she'd feel good on Friday and overdo it (please DO NOT overdo it - just rest and heal) and then we'd "lose her" on Saturday and/or Sunday - a day spent 100% in bed. At first it was a miserable day - but over time - she'd "feel" better. Eventually we realized it was just a day of rest. To be honest I really got used to "resting" with her on weekends - but Sundays are football/NASCAR days so I'd always get up first! Tell hubby to snuggle up!

Remember - REST IS HEALING and never fell like your getting too much rest. This hurdle will pass - promise.

Love and Light
Mel

Sheila · 02-22-2007, 07:14 AM

KelleyAfter being on Herceptin 3 1/2 years, I can tell you that fluids are so important....I have never been a water drinker but on Herceptin, especially the day of treatment and a few days off, I drink like a sailor...water that is...it seems to help dissipate the effects....hope this helps!

suzan w · 02-22-2007, 09:43 AM

I had terrible joint and muscle pain while on herceptin...drinking water does help. If it is any consolation...I am 4 months out from my last treatment and the aches and pains are becoming a thing of the past! Hang in there!!!

Barbara2 · 02-22-2007, 10:15 AM

Kelly, Do you suppose you could skip a week and see how you feel during that off week? Herceptin stays in your system for a while, (not sure how long...it seems like a couple of months maybe) so perhaps a week off wouldn't hurt anything and you could get a bit of a break.

I took "late" herceptin with odds and ends of side effects, but nausia was not one of them. There was a little bit of diarrhea at first, but my body adjusted to "normal" stools...I've always had constipation issues, so the herceptin seemed to even that out a little.

I've had aches and discomfort here and there all over my body since beginning chemo, (especially in the ribs) so it's hard to know what caused what. I empathize with you and your wandering mind. So does mine, all the time.

I do feel it's a good idea to take Co Q10 while taking herceptin which gives the heart a boost. I even continued with it after finishing herceptin.

Hope you get to feeling better.

rinaina · 02-22-2007, 10:20 AM

Hi Kelly, I too do not feel as good as I use to since starting Herceptin, but I will say, I feel much better than I did while going through chemo. I have had headaches, aches and pains, nausea, diahrrea, skin cracking and nail problems. I also still struggle with fatigue. I just can't keep going like I use to. To me it feels like it has gotten worse with each treatment. I have been getting Herceptin since late August every 3 weeks. I just tell myself, it will all be worth it if it keeps the cancer from recurring or metastasizing. Hang in there Kelly, you are not alone in how you are feeling. Ask the doctor what else he might recommend for each and every side effect you have and use the recommendations.