Please post your two cents on Herceptin "side effects" real or perceived!

[DianneS]

Hi Terri,

So your eyes sound like mine. I look sometimes like I've been on a crying jag, esp. when I wake up in the a.m. Everyone in the medical world says they don't see anything about Herceptin causing it. Yeah right.

Have you found anything to help?

I sent you a reply that might help your feet and sinuses. This stuff sucks...my doc/onc calls it 'baby chemo'. Is she crazy?

Diannes

[Terri B]

Dianne, Steph,

Yeah, I'll be seeing my onc on Monday. I will tell her all about my issues. I'm almost done with my year. I think I have 2 treatments left. Muga keeps dropping slowly. Last one was 53.

I just feel UGH. slow, sluggy and worthless.

Steph, if i have a clot, will my port work? because my port has been working okay.

It's like I have allergies, and I never had allergies before. I have really bad nights where my nose is so clogged that I snore (at least that's what my daughter told me ) It's those nights that I wake up with the puffy eyes.

but i have hair!!

[Terri B]

Oh yeah, and I forgot to mention...

My lymph nodes seem to be puffy too. On the clavicle (right side). I don't feel them, like rocks, it is a soft, puffy area. When i look in the mirror, you can tell that the right side is puffed up. I saw my breast surgeon last week, and she said that she wasn't concerned because they weren't "hard". But she told me to point it out to my onc when I see her.

I'm just one big puffy mess.

[Cal-Gal]

Fatigue
Painful joints- hips, knees, lower back.

[pmm10414]

I took Taxol/Herceptin prior to surgury and now am on Herceptin only weekly. I will go to every 3 weeks soon. The biggest issues are with my nose -- doctor has me taking daily Claritan which seems to help. I have some soreness but am not sure if that is still from my surgery -- bilateral masectomy 4 weeks ago. Radiation not started yet.

[Lani]

bumping this 3 1/2 year old thread up. It holds quite a wealth of information thanks to the over 440 contributions from her2support members

[juanita]

i think the main problem i have still is sinus problems. they just won't go away!

[bejuce]

My teeth seem to be very sensitive now, especially when I eat something. I haven't had this feeling before and it's hard to explain. Has anyone else experienced weird teeth sensations/pain while on Herceptin?

Thanks!

[Cal-Gal]

Hello bejuce-

Interesting that you posted this.

Yes-just recently this past week started having sensitivity in my teeth-and I did not relate it to the Herceptin!!!!

I have completed 15 treatments of 52 --

All of a sudden I am sensitive to cold-sweets-

[Jackie07]

Be sure to gargle with salt + specks of baking soda after every meal and before going to bed.

[DianneS]

Diarrhea more frequent around herceptin infusion. Runny eyes, drippy nose but not all the time. Leg muscles more fatigued than usual after walking (but I did 2 hr hike today) lower leg/knees/ankle feel sore or puffy or something. My feet hurt first thing in the a.m. until I get moving around.

Hot flashes! Is this associated with herceptin? I was wondering. I am postmenopausal since bilat oophorectomy Feb. 2008. How long do these hot flashes last? I am not taking any Taxoxifen or AI's that might cause it.

Oh yeah. Occasional cough - from drippy nose?

Also my eyelashes are growing towards my eye on my right eye. I have had to have the doc tweeze them out more than once. It's only about 4-6 eyelashes but I never had this before chemo/herceptin. They are recommending I get the offending lashes lasered to kill the follicle. Chemo: the gift that keeps on giving.

Dianne

[Marily]

I have had very weird feeling in my teeth and sensitivity to cold especially . I have been going to my dentist about every three months since we found weird little worm like holes in a couple teeth ( a friend also had this same thing happen to her teeth on Herceptin.) I have not had cavities but had to have the teeth with the worm holes (sorry about that) drilled and capped. I really do not know the reason? but I have learned not to drink icy cold water etc and just have the dentist watch my teeth.
Not much information on why but hope it helps to know others have had similar side effects.
Marilyn

[harrie]

Re: teeth sensitivity
The most common reason why teeth are sensitive is because of root exposure above the gumline. Even with a small amt of gum recession and root exposure, sensitivity, can occur. The sensitivity will mainly be to either cold or maybe brushing.
Clenching can encourage this to happen. Many times people clench while stressed.
It is not unusual for people to have more recession as they age. with acidic types of food or drinks, erosion can occur and then can also contribute to cold sensitivity.
To minimize or eliminate the sensitivity, you can rinse with a fluorided mouthwash such as ACT which contains fluoride.
OR...you can use a sensitive toothpaste. (sorry Jackie, but I don't think salt water or baking soda will do much)
If you can pinpoint the spot of sensitivity, you can also dab a bit of the sensitive toothpaste on the spot and leave it on. Dont rinse it off. Put it on before going to bed maybe. It may not work after one treatment, but after doing it for a wk or so, it should help significantly.
HOpe this helps.
Maryanne

[Jackie07]

No problem, Maryanne. I was just relaying what I was told during chemo. You are probably right, because later on I needed to use the 'Swich' (licodine, malox, and ?)to treat mouth sores. (Sorry, evidently I was thinking about something other than sensitive teeth. But my Father-in-law has also been told to gargle with salt and baking soda to strengthen his gums

[Brenda S]

Since ending my chemotherapy--see below-- I have continually endured significant bone aches. I have an especially painful right hip. The "pain" is ongoing and is ever present.

[pmm10414]

I had pain for a long time and still do somewhat while still on Herceptin. As painful as it is I see exercise as helpful. I go to physical therapy which also help.

[PatriceH]

Yeah, I'm not crazy. I finished chemo (taxotere/carboplatin) in June and am just now restarting herceptin...most of my joints are painful. After sitting, it takes me several steps to get going. I tell people "I can't go 0-60, like I used to." My hands hurt, my feet hurt and are changing. I have neuropathy in feet and hands, it is getting better but the middle finger on my right hand...oh my! I had been wondering why I could barely get around...force myself to walk for exercise because I love it.

[margiermc]

I'm on herceptin every 3x - a long 90 min. infusion. Bad taste, urine
smells, and blow my nose i can smell the chemical. I drink 8 glasses of water day before and after - this keeps all side effects down. I eat small before treatment. After treatment, I eat something light. I sleep after treatment - my family cooks and takes care of things, they know it's herceptin day. I get bloody irritated nose - when I blow, it hurts and same area of my neck and in ear - sinus is really a big side effect. I take saline nose drops - to clear sinus. Other than that, walk and keep healthy diet. But, def. drink lots of water day before and after treatment - it helps the kidneys flush chemicals out.
I learned this all from a handbook rec'd about herceptin at my chemo. clinic.

margie

[SoCalGal]

after about two years on herceptin, the man in my life leaves. he gets tired of my side effects (see all 23 pages of this post for clarification on s/e's)

I wasn't positive it was the herceptin, but it's happened twice now. Sigh...

[ElaineM]

Sorry Flori. Some men just can't handle a strong woman like you. There are alot more fish in the sea. Smile.