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

[Carol Carlson]

I was on Herceptin for a year ( every 3 weeks ) from June /05 to May0/6
I was 9 months out of standard chemo when I started--I am stage 2B

Noted side effects
!. stiffness and achyness esp. in hands in the morning, hip pain while walking any distance ( still have that ) could be arthritic.It would also take a while for my feet to get going in the morning... sometimes they didn't feel like mine.

2. insomnia-- never was a "good" sleeper but definitely worsened on Herceptin.
( in fact I still have a PRN supply of a sleeping med and take it maybe 2-3 times a week)

3 weight gain-- 10-15 lbs, lost it after I stopped taking Herceptin but it seems to have crept back on

4. the nails-- Still split and don't grow as long as before

5. I've noted some thinning of my hair and that has remained the same

6. fatigue-- wonder if that will ever go away... after my surgeries, chemo, rads and then a year of Her., just don't seem to have the same energy level
and I do all the right things ( could be my age.. I'm 66 ) an oldie in the group

7. mental status-- didn't notice anything remakrable there.... maybe I've always been a little " foggy"---- just kidding---- I'm sharp as a tack


Overall, even though these things are annoying, I would say that after standard chemo, it was a breeze.

Hope this helps.
There seem to be many common threads re: side effects.
And as someone said previously, sometimes my onc. would look at me as though... how could you possibly have these things wrong, they aren't listed
in the medication insert !!!
Now, perhaps, they will start to look at these symtoms a bit more seriuosly with collected data.

Regards,
Carol

[Val Pfeiffer]

I am now on Herceptin only quarterly. I had a triple dose on Thursday. I never noticed this before, but yesterday when I went to my spin class, I drank THREE bottles of water in one hour. I am very thirsty for a couple days after (which isn't a bad thing). I just found that strange, and I didn't notice it as much when I was on a more regular dosage. I have a few of the symptoms that you guys mention, but not nearly as bothersome as some of you have experienced. I have had no weight gain--same weight as always, which didn't change during chemo or radiation either.

[Gerri]

Hi All,

I have been waiting for the day when I would finally be done with my Herceptin treatments and it is now here! I was on the every three weeks plan for one year and had my final (I hope) dose on Friday, March 16. My side effects (not necessarily in the order of frequency or annoyance factor) are:

*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting

When all is said and done, this was a pretty easy road to travel. The year went by quickly and now I am looking forward to my "new normal".

Wishing you all good health!!

Gerri

[janet/FL]

Gerri
Your list was perfect and a "must read" for newbies. I had everyone of them except for "losing my eye brows." I am now 8 months since my last treatment and am happy to report most these changes--GONE !!
I am going to add it to the bottom of this list. If anyone would like to add more, I would think copying the list and adding it might be helpful to clarify all that can happen. And eventually the list could be posted by itself.

The only side effect I had that I would add--is insominia. And that too is getting better.
*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting
*Insomnia