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

[Kaye]

My thoughts are that it was most likely the Arimidex which caused the side effects and not the Herceptin. The first pancreatitis attack occurred about 8 weeks after I started the Arimidex. I had already been on the Herceptin for 5 mos. by that time. Arimidex affects hormone levels which, in turn, can affect cholesterol. High cholesterol may be associated with pancreatitis. My cholesterol levels became high for the first time after I started Arimidex--and had lost a good amount of weight. (30+ lbs).
One private radiologist told us that he thought my enlarged retroperitoneal nodes may have been responsible for the pancreatitis. Perhaps the Arimidex had some play and was related to that as well.
I am not sure about becoming hypothyroid--that could have been from the radiation but do wonder if the pancreatitis could have caused some damage which caused it to develop.
Also, another thought--at same time thyroid became hypothyroid, my testosterone levels were high. Testosterone is also a hormone and there very well could be some relationship between that and the arimidex which affects estrogen levels.
However, in addition other tests were off, too--one liver enzyme--AST--oh, and my bilirubin count was elevated then as well.

[al from Canada]

If Genentech had a postmarketing surveillance system then they forgot to tell Roche because it never got to Canada.


Aside from the usual runney nose, waterly eyes and leg cramps; the one I would like to see more study on is the vision changes. Linda was practically blind, for what ever reason, in her distance vision. She couldn't even see faces in the TV; to the point where she either stopped watching or we buy a big-screen TV (we did the latter). Strangely, where she used to need reading glasses; she could now read without glasses.

Side effects aside, without herceptin........

Al

[sarah]

Herceptin every 3 weeks, 2nd year,
DCIS in 1999, recurrence invasive in 2003,
Taxol and Herceptin started March 2004, continue Herceptin
Femara started after chemo

side effects:
fatigue
cataracts - but was told probably the cortisone given with Taxol or the Taxol - still coping but eventually will have to do something about it
dry, sore nose
dry eyes and skin
skin rashes
split finger nails that never grow
cramps - somewhat helped with Magnesium B6
periodic head aches

all said and done, I don't feel my side effects are that bad - except the fatigue and the eyes, the others are just a nuisance that I cope with. I may look into the anti-fatigue pills mentioned.
I want to stay on Herceptin as long as my heart can take it. Maybe now that it will be given to more people, the price will come down a bit and that will help more people get it and be able to stay on it longer.
sarah

[Karen t]

I have been on weekly Herceptin for two years plus Navelbine (3wks on/1 wk off except for a 6-mo break in the middle of the 2 yrs). Symptoms include (not in order of importance):
UTI's that started during the AC (4 yrs ago) but seem finally under control now
Diahrrea on the day of Herceptin infusion, constipation after that
Muscle cramping including abdominal, aching legs at night
Runny nose with periodic bouts of crustiness, bleeding, pimples, funny smell like an infection
Runny eyes - and most recently a horrid bout of dry eye & SEVERE blurry vision that has taken 2 full wks to improve (after taking Claritin, etc. that further dried my eyes)
Swelling ankles
Numbness/pain in 3rd and 4th right toes
Elevated pulse
Inhale ok but it does not feel refreshing
Rib and some breast pain in area of mastectomy (but could be from Navelbine) plus shoulder and arm pain
Lymph fluid build-up in chest area after infusions (could be Herceptin or Navelbine)
Some anxiety
Last but not least: NO insomnia! With gratitude.