Please post your two cents on Herceptin "side effects" real or perceived! - Page 15

harrie · 09-23-2009, 12:25 AM

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 · 09-24-2009, 03:15 PM

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 · 10-05-2009, 05:31 AM

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 · 10-08-2009, 07:38 AM

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 · 10-26-2009, 07:14 PM

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.

SoCalGal · 11-15-2009, 12:54 AM

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...

v-ness · 11-15-2009, 04:42 PM

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

PatriceH · 04-11-2010, 06:37 PM

Interesting...My lower back has been hurting a few weeks...still not sure if my monthly is coming back. that is what it feels like.

I feel tired, but thought it was a remnant of all of what I've been through...Though I must say that I've been weaning off of Cymbalta that I was on for neuropathy and I'm not as tired. Hopefully neuropathy stays minimally at bay without being on it...I thought it was worth a try..

And I suppose kind of a blessing...This is the worst pollen in 12 years where I live and this is the first year it hasn't bothered me! It's funny what you trade off for!

Sandra in GA · 11-17-2009, 09:06 AM

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.

Lien · 11-27-2009, 12:47 AM

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

Cal-Gal · 11-27-2009, 05:35 PM

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

pmm10414 · 12-05-2009, 02:59 PM

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.

PatriceH · 12-05-2009, 04:51 PM

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?

DianneS · 12-05-2009, 05:19 PM

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

pmm10414 · 12-05-2009, 06:55 PM

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.

Jackie07 · 12-10-2009, 03:09 PM

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...

pmm10414 · 12-10-2009, 06:19 PM

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.

Jackie07 · 12-10-2009, 07:12 PM

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.

simpo · 12-13-2009, 12:01 AM

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.

Sandra in GA · 01-07-2010, 12:11 PM

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.