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

[elcalabrese]

Glad to find out I am not crazy

I have been on Herceptin for 4 1/2 yrs.
Side effects.
Finger nails split and thin.
Finger tips cracked (I now wear fake nails to protect them).
Toe nail fungus.
Can't sleep
Medicinal "smell"
Runny nose especially when I eat something
Horribly dry eyes
Vision problems especially after treatment
Memory issues
Trouble speaking - forgetting words or completely drawing a blank. Also using wrong words or thinking one thing and saying something completely different.
Muscle and bone pain
Bloating and weight gain
Digestion problems
Congestion
ringing in ears
Prone to stomach and sinus disorders
And now my hands and feet are peeling. They burn and itch and even slightly warm water feels like it's scalding hot.
el

[bobbiw]

Oh boy elcalabrese does that sound like me! I am very happy for the Herceptin and will certainly put up with the side affects dont get me wrong. But in my case it seems that it has also disrupted my ability to find gainful employment due to the cognitive stuff that I seem to have going on. I cant even imagine trying to learn a new skill these days or multi tasking or working in a fast paced environment. The madening part for me is that possible side affects such as these dont seem to be recognized by the medical community. AND if you are stage IIb and doing well physically, SS disability does not recognize the difficulties either.
Well one day at a time one foot ahead of the other huh.
Bobbi

[tousled1]

Since we have so many new members, I am taking the liberty of moving this thread up. I'm sure that the "newbies" might find it helpful.

[Doris]

Hi,

I've been on Herceptin alone since April 2006. At first it was weekly; then I switched to every 3 weeks. My symptoms are as follows:
- Diarrhea
- Joint pain, particularly in my hip. (I actually have lots of joint and muscle pain throughout my body! But since I have arthritis, it's hard to say what is due to the Herceptin. The hip pain began after Herceptin was started.)
- Fingernails that split and shred
- Intermittent dull headaches
- Increasing problems with finding the right word and with thinking clearly
- Runny eyes
I was diagnosed 12/05 with Stage IIIA, Her++, ER negative, cancer found in 4 lymph nodes. I had 6 wks of chemotherapy and 6 wks of radiation.

[dchips1]

I was dx stafe 4 IDC 1/06 now it is 1/07 and I am NED!!! Been that way since August. Liver and bone mets are gone!! Praise God and good drugs. I am a very active person, I have a blended family of 5 teens and a 6 yr old and I take care of special needs children, and work part time for the school as a nurse.
Timeline:
2/06 Mastectomy 3/9 nodes pos er/pr neg her2 pos
2/06 port placed
3/06 Taxol, carboplatnium, herceptin weekly x 3 then herceptin only for 6 months Zometa monthly (1rst two doses very sick 102 fever etc)
took neupogen, neumega, arasnep PRN
Good case of allergic reaction to carbo after the 16th dose
still on weekly herceptin
Good case of chemo brain!! Hot flashes and fatigue pretty much gone now
Brain still is not where it should be, Is this herceptin or chemo? Good question.
Finger nails brittle, peel MUGA at 62%-72%. I am going to get herceptin past a year, I feel like it has been the "juice of life" for me. I am NED and would like to stay that way.
I am going to continue weekly and I take coq10 and flax fish and a multivitamin.
My message to others with stage 4 is too never give up, be your own advocate!!! Darita

[Tigerlily]

Hi from Australia. My name is Kim.
This support group is a godsend. I have a lot of side effects I feel my onc. brushed off - esp diminshed concentration, crusty nose, nails and hair affects, breathyness, hip pain, nech pain and tiredness. He feels my immune system is just reacting. Nothing more scary could be under the surface to due the how good herceptin is for my situation. You are encouraged to report aches and pains - then made to feel you're a nut for thinking somehting might be stirring below.

I currently on Herceptin every 3 weeks. Have done so for 5 months. Previously I had AC+ taxetere every 3 weeks for 4 rounds and Taxol every 2 weeks by itself for four rounds. Plus 7 weeks of radiation. My start to treatment was a mastcetomy in Dec 2005.

So wonderful to have contact with sisters in similiar situations and taking control of their dis-ease. It can be very isolating in the non BC affected world.

Thank you and regards Kim

Stage IIIa 4 tumors - grade 3 11/24 nodes Her2 3+