Herceptin side effects

[carol7403]

Hi everyone-I'm new to this board and I've got a question for everyone taking herceptin. I finished chemo about 6 months ago, and have only 3 more herceptin treatments to go before I'm done. I was wondering if anyone else out there is having a hard time with feeling tired, achey and just generally unwell with herceptin? I know a lot of people say that they have no side effects from it, but I just feel run-down, beat-down and exhausted. I had a muga recently that was fine, and blood work is fine. I just am so tired all the time, and the herceptin makes me feel flu-ish for quite a few days, with an increasing tired feeling with each treatment. Kind of dreading the last 3 treatments. Anyone out there with a similiar experience? Thanks-I hope I'm not the only one struggling with herceptin!

[Sheila]

Carol
I believe there is a thread about Herceptin Side Effects, you can do a search on it...many of us have had little or none, some have had an awful time with Herceptin. Like any treatment, we all react differently. Have you tried taking Benedryl and Tylenol after the treatment and for a couple days? It might help...just be happy you have only 3 to go....I am fortunate that I really have had no side effects other than the runny nose on it...next month will be 5 years straight of the super H....I am sure others can respond...but remember, we are each individuals, and we respond differently.

[DanaRT]

Carol, Here is a good thread to read about side effects --

http://her2support.org/vbulletin/showthread.php?t=23696

I am tired a lot of the time and then don't sleep well. Nerves, negavtive thoughts keep me awake. I take Ambien every night for that. There are still days I have "re-group" or "re-energize" and they happen to be about four days after a herceptin treatment. All I want to do is be alone, read, rest, watch a movie.

Best wishes,
Dana

[madubois63]

Hi Carol - Welcome to the boards. Sorry your here, but you've found a great place for finding support, making friends and getting the best an most up to date info. I took Herceptin for 1 1/2 and am back on Herceptin again after 2 years. I am one of the lucky ones that has had no side effects from the Herceptin. You may still be feeling tired from the chemo. Chemo is accumulative and many people feel the fatigue for years. If I were you, I would take Sheila's advice and ask for Benadryl and Tylenol prior to infusion. Keep it up sweetie. Remember, you physically and emotionally have been through a war and deserve time to recoup...We are lucky to have Herceptin. You've only got 3 more to go...Good luck!!

[Gerri]

Carol,

I read that recovering from treatment takes at least as long as your treatment lasted - for most of us that is well over a year. This made a lot of sense to me. I still feel tired and I have been done with treatment for a year and a half. I do take Femara which probably adds to my fatigue. Give your body the time it needs to recover and yourself permission to take it easy when you need to.

[juanita]

Give yourself time to heal. It's probably left over fatigue from your chemo.

[SoCalGal]

Hi Carol-

I thought of a couple of things - when I was on herceptin for 20 months I wound up spacing out the last 6 months of treatment to every 4 weeks. It made a big difference in my energy level. I agree with Sheila - I would for sure use benedryl and if you can tolerate - ask about taking a single dose of prednisone before each infusion. Some people have a little allergic reaction to herceptin. Also - walking (or exercising) each day really is the only known "cure" for deep chemo fatigue.
Flori

[Louise O'Brien]

I finished Herceptin a few months ago - but the nurses always gave me two Tylenol before every infusion. I think it helped.

[Joan M]

Carol,

I'm back on Herceptin but it seems to have very little side effect on me. I go every 3 weeks. The nurses give me two Tylenol and one Benedryl, which actually make me sleepy there.

But glad to here you have only a few treatments to go!

Joan

[BonnieR]

I was tired alot. Worse towards afternoon. So I learned to do my errands earlier in the day. And my stamina in general was decreased.

[murphyrose]

Hi,

I am just finishing my one year on Herceptin and have noticed it getting harder with each treatment. I have alot of pain (feel like someone is beating me with a baseball bat!) and fatigue. I also feel more emotional as I am nearing the end. The tylenol is a good idea and some days I have even had to take a percocet for the pain. Hang in there...you are almost done!! You can do it!!

[juanita]

I am two years out from the end of herceptin and those side effects do go away. the only two things I still have problems with are tingling in toes on right foot and sinus infections a lot more easily. Hang in there!!!!

[Joan S.]

I have been on Herceptin for over a year now and the main side effect for me is fatigue. I find that exercise really helps to give me energy(and it's good for us) and I try to pace myself. By about 4:00PM in the afternoon, I am usually pooped. I find that if I over do it and get really tired I pay for it big time. It takes me longer to get back to myself. I feel like if it works it's a small price to pay.
Best of luck to you!

[carstell]

Hey Carol,
I am right there with you.I get bodyaches and goose bumps all the time. At least once a day. My onc thought that maybe the Herceptin might be prolonging the side effects of the Taxol. I think that it is just the dang Herceptin. And yes, I am also tired all the time.I have been taking Alieve in the am and pm, but sometimes still have to resort to my Vicoden to take away the aches! Hang in there.

Cheryl

[lexigirl]

I remember being tired the day of my infusions. I would pretty much go home that afternoon and sleep the rest of the evening away. Never an upset tummy, sometimes loose stools (sorry), but overall the herceptin was not to bad for me.

I hope that you feel better soon.

Lexi

[mimiflower07]

hi Carol
I just wanted to share with you that i too am still getting herceptin and fatigue is with me like an appendage. I take ibuprophen into my infusion aswell that evening. No real body aches just fatigue...blabla but..my newest compaint are my feet. Since starting tamox my feet ache!! So your not alone, i have about seven more herceptins to go.
good luck
suzanne