Herceptin side effects
 

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

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 :D) It's those nights that I wake up with the puffy eyes.

but i have hair!! :D

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.

Fatigue
Painful joints- hips, knees, lower back.

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.

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

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

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

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

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

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!

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

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-

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

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

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

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

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

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

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

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

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

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 :)

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

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.

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

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.

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

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.

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

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

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

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...

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

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

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

i just started herceptin on october 8th and am currently getting it weekly for my 18 wk chemo tour of duty. i am salivating like pavlov's dog. i'm assuming it's herceptin since i haven't had chemo for over 2 wks at this point. it's weird, but better than having my eyes tear, which happens for about 2 days after H. i've also started having morning headaches and wasn't sure if it was storm Ida that caused it (i get barometric pressure related head stuff) or herceptin. i'm thinking herceptin. the latest is that my whole head feels swollen. i mean literally swollen - my wigs suddenly feel too tight! now that is really annoying. i dig my wigs, especially Desiree, and i don't care to do the scarf or bare head thing at work. one time, though, Desiree was itching me bad (again, i have no idea why that day and no other) and so i took her off and hung her on the coat rack over my pink winter coat, which looked quite comical. i passed the day in my little black velvet oliver twist cap. i have yet to brave going bare-headed (except in my house and backyard). i've developed a fascination for petting my freshly shaved head. velvety soft!
valerie

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

Swallowed my last Tykerb at 7:30 this morning. Had my last Herceptin on Wednesday. Finished!!! (I hope)

I am looking forward to days where I don't have to be in close proximity to a bathroom, can eat fresh fruit, and have stamina to complete projects.

I am very thankful I was able to get into the phase II trial that included the Tykerb with the Herceptin along with the reg. chemo and radiation, especially since ALL my lymph nodes under my left were positive. I understand there are already phase III trials going on that look at Tykerb as a "stand alone" or in combination with Herceptin treatment. Time alone will tell if this combo protects me from this HER2 dragon.

Just wanted to share this very special day with those who understand.

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

Thought I'd bump this up.

I didn't get Herceptin. My doc said that he's seeing quite a lot of SE's from it. He said some do better than others, but a few unlucky ones are really sick. He said: "They feel like old women, in stead of the 40-something they are in reality". He told me he'd rather save Herceptin for a recurrence and see how I do without it. So far so good. I'm almost 6 yrs out from diagnosis.

Jacqueline

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

Thanks Lien for bumping up---all my recent SE's fit the Herceptin model--except the dizziness--

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

I am on my 34th Herceptin treatment. Doctor want me to continue until summer 2010 to give me greatest chance of cure. I have to go sleeveless to oncology clinic. I get hot flashes within minutes to infusion starting. My face is all red. Since I started fosamax I have not had as many joint and bone aches. Maybe just timing not sure but I will take it.

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

I am perplexed. I received Herceptin as part of my chemo and am now receiving treatments of herceptin alone through April or May - every 3 weeks. I don't think I've experienced anything like what is being described. Are side effects cumulative like taxotere and carboplatin?

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

I finished herceptin in Sept. and have noticed since stopping that I sometimes get what I call the chills. I get really cold even tho I am bundled up. Other times I get hot. It's very annoying.

Anyone else? If so what does your doctor say?

Thanks

Dianne

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

I sometimes get chills but the hot flashes drive me crazy esp when I first receive my weekly treatment. I react to all chemo though so everyone is different. It seems that for me the side effects other than hot flashes (headaches, muscle and joint aches) are getting to be less with time. I can only hope that it does not get worse since I am roughly half way through my post operation year of Herceptin.

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

I think one of the side effect of Herceptin is that I am so much tougher now than two years ago. (Psychologically and physically.) The side effect of Herceptin is that I've found so many warriors here that I could immulate and be inspired.
[I'm writing this to get rid of the bombardment of Tololo Ads...

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

Has anyone had anemia from taking the Herceptin. My counts are still not back into the normal range 6 months after finishing taxol -- still on Herceptin weekly.

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

I had quit Herceptin long time ago. During the 18 weeks of TCH, I had to have 'shots' to boost both my red blood cells (once) and white blood cells (twice) I did only 4 weekly Herceptin only infusion and had to quit because of decreased MUGA score.

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

I have been on 3 weekly herceptin since August 2005. I have had very few side effects just the ocassional flu like symptoms on the 3rd day after treatment. In fact mostly I have felt remarkably well. However I have developed Parkinson's like symptoms, shaking, small writing, weakness in one side; I am due to have a brain scan to rule out a brain tumour, and then I will see the neurologist who will do the diagnosis. I may well have Parkinson's and these symptoms are nothing to do with herceptin, just an unlucky cooincidence. I'll keep you posted.

Re: side effects
 

taxol causes hot flashes so herceptin may not be the culprit

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

I finished Herceptin and Tykerb the middle of Nov. and while most of my side effects are clearing up, my hands and feel stay cold. I always had rather warm hands and feet before this bout with bc. I don't know if Herceptin is causing this or not. I do suspect it may be the culprit.

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

Hi: I am in the middle of year-long herceptin treatment. compared to taxol, there are much fewer side affects, however, as I progress, I have found myself to have increased muscle and joint achiness, lethargy, weight gain. I keep mum about it, due to the comparison to chemo, however, I am definitely not myself..

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

I am almost at the end of my 12 months Herceptin, feeling old and lethargic, still aching feet (taxol?) have very itchy skin on my arms and occasional diarrhea. Not sure how much of this can be blamed on Herceptin, it will be interesting to see how things change when I finish. Like Islandgirl I am definitely "not myself" but maybe that is the legacy of this whole cancer process.

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

Hi Cheezy: Just got your comments regarding your herceptin side effects. It IS difficult, isn't it, to discern what is what. I'm told I have fibromyalgia now (which, frankly, I don't even like to say out loud because people seem to roll their eyes). I have been an avid gardener and though petite, have always prided myself in being able to lift lots of weight, be strong, tough. Now I seem to pick up the "Joy of Cooking" cookbook and feel sore in my thumbs and arms. I mean, how dumb is that? I wish you well.

Islandgirl

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

Hi islandgird & chezzy,
I feel very similar to both of you. At 43 I'm getting off the couch like I'm 70 years. It takes a few tipples before I can straighten up. I didn't attribute this to Herceptin and thought this was left over from Taxol (Mine is not quite as bad as islandgirl though). I finished the Taxol first part of Dec 09 and I feel like it has gradually gotten better (very, very gradual but at least change in the right direction.)

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

Diagnosed Feb. 2009
Double Mastectomy Feb 2009
Started Chemo (6 rounds) and 52 weekly Herceptin Mar. 20, 2009
Stage 2B Grade 3, 2 lymph node positive.
er+/pr+ HER2+++

I too have had thin cracking nails but am also on Arimidex so thought that was the cause. Have been taking 1800 calcium a day and Boniva once month

Sinus issues. Never have had these problems. Assumed it was residual from chemo. Never thought about Herceptin connection

Feet and leg cramps!! Again, thought it was my shoes!!

Back pain.

As of late I have round finger tip sized spots that appear. Don't itch, don't hurt just appear and then go away in a few days. No sign of a head on it like a bite. Little tiny vein like appearance inside the spot.

Eye pain and discomfort. Was told by an opthomologist that chemo can damage tear production. Put on Ristacia (sp?) for dry eyes. Does not seem to make any difference and has been over a month. Vision in my right eye has continued to worsen and my glasses were new last summer.

Fatigue. Assumed that was from the chemo and all I have been thru.

I have only 3 treatments left!!!

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

I had stage 1A, mastectomy, HER2+, negative receptors, etc. I completed my chemo on Nov. 17 and am continuing Herceptin every three weeks with 1.5 hour infusions until July unless I change my mind over the side effects.

The nurses tell me to see my primary care doc, suggesting these are not related to Herceptin, but after reading above, I think they are:
. really painful knee problems
. now starting pain in lower back
. the combination makes it very painful to raise or lower myself from standing, sitting or prone positions
. all my finger nails have deteriorated [never had problems before] They break vertically and none are normal anymore
. got first in my life ingrown toenail on big toe. It got infected requiring antibiotics. By the time I got to the foot doc, the other big toe had an ingrown nail. After those were better, the first toe had another ingrown nail on the other side from the first time. It got infected and I was on Cipro before I saw the foot doc. It appeared that there was fungus under the nail by this time. I chose not to get the liver test and do the meds for fungus and now that nail is white, loose and ready to fall off.
. I am constantly hungry and am gaining weight.
. Also feel bloated and my body is bigger than the weight gain. In other words, for a 5 pound weight gain, I am up one size. When I gained that much in the past, it did not affect my dress size.
. recently I have been having numbness in my right hand upon awakening every morning. This morning I paid special attention and noticed that I was not sleeping on it in an unusual manner.
. I have itchy spots especially around the area of the mastectomy and near my underarms.
. My hair is growing back but not as fast as it used to grow.