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

[harrie]

Bonnie, I have been on herceptin only for 2 months now and it is a breeze. I am really good and pretty much back to normal from chemo. I, like you, was worried about the side effects from chemo (oops...I mean HERCEPTIN) alone after reading about all the problems other people had encountered. So I started a thread a while ago asking for those who experience little to no side effects at all from herceptin alone and there were quite a few who responded.
So far, knock on wood, I have also experienced little to no side effects from herceptin.
Good luck.
Maryanne

[BonnieR]

I appreciate your message. Very encouraging. IF I take Herceptin (the jury is still out!) it will be my only IV drug. No chemo at all. Only Femara.

[Gerri]

Bonnie,

Herceptin was a walk in the park compared to chemo. Since you are not going through chemo I can only tell you that the side effects are annoying more than anything. You should go ahead and read the posts to see what you may experience. I finished my year of Herceptin in March and slowly but surely the side effects I experienced are subsiding.

Good luck! Believe it or not, the time will fly by!

[astrid]

I finished my year of herceptin in May of 2007. I had quite a few side effects that were not listed in the printed material for the drug. My blood pressure rose from 130 over 70 to 155 over 85. It is back to 130 over 75 at last check. My eyelashes fell out every three months over the year. My hair grew really slow while I was on H. But the worst part was the headaches that I started to develop the last few months. I am not prone to headaches and I would get headaches that put my in bed for several hours, a week after my treatment. Have not had a headache since I have been off. I also had to take my infusion for over an hour every time or the headaches the day of infusion would be bad. I had to have a driver to take me home because I would tire all of a sudden. My drive was an hour and I could not risk it. When I got home, I had to go to bed. The bad side effects did not really start until month 10. We quit my H one treatment short of my year protocol because my reactions were getting worse. I did not realize how bad I felt until I see how good I feel now that I am done.

[Nora B.]

gerri - i've been browsing through this thread looking for anyone who is still experiencing side effects months after finishing herceptin and i saw your post. if you don't mind, what side effects are you still experiencing? i finished in april and my joint aches and pains and swollen feet and fingers actually seem to be getting worse...
nora

[Lani]

Couldn't access your profile. Are you ER+ are you getting antihormonal therapy, are you postmenopausal, have you had your ovaries out?

The effects of chemo are long term and may have thrown you into premature menopause. Estogen deprivation can be hard on the joints and that may not improve for that reason after herceptin is stopped.

Knowing all these other factors helps one put together a picture of how people do on and off of herceptin to help guide others.

Let's see if others "pipe in"!

[Nora B.]

thanks lani, that menopausal link hadn't occured to me. i'm not ER+, no antihormonal therapy, still have my ovaries, and the chemo did toss me into premature menopause (was 42 when diagnosed, still had regular periods), so maybe that's the source of the ongoing joint pains.
nora

[kat in the delta]

NORA, Gerri,
Hi ! I've been finished with mine for I think... a yr+( my memory is terrible).
Yes, I am still having some of the side effects,
and a FEW are getting worse!!!

I just read an article in an MD's Journal that gave this opinion(not word for word)..
..as Now more of US are Surviving theChemotherapy & Cancer .Experience..

the researchers are Beginning to see that Dammage from Chemo's,etc.

..may not...even... show up UNTIL...8 to 10+ years AFTER stopping all
chemos,rads,..etc...
No one knew this before NOW...!!..

and......I personally hate to say it ..but most people close to you do NOT understand, nor will Never Understand what this has done to you
...... (( I do feel isolated at times..Thank you for this SITE !!))....
Others may think or Dare to Say:
" NOT HOOKED UP TO AN IV?" Then, "YOU CANNOT HAVE PAIN"!!

Well, I think it is only "AFTER" a PERSON has HAD... ALL ..

chemos, rads, surgery or whatever....
Not until all THIS IS OVER .and the DAMMAGE.. DONE.. IS ..This...
the true..
TIME A SURVIVOR IS STRUGGLING for THEIR DEAR LIFE !!!

This is WHEN almost EVERY CELL IN A PERSON"S BODY HAS BEEN

WRECKED !!! --the DNA or some part of EVERY CELL---SHATTERED !!!!

I think it will take ME YEARS--to build myself back..... if possible I'm trying... to control what I eat.,EXercise.,etc.,
Now STRESS..... is a little hard for me to control..


WHAT DO U THINK .... ???

Yes I have pain.. especially in my lower LEGS!! I think it is Not Only from the Herceptin , but as a result of receiving a combination of Chemo's.,rads.AND Herceptin.... My feet get Swollen...as well as my hands at times... I CANNOT wear any tight fitting socks or other clothing.., my fingers and toes..and feet get numb ..and I feel like I am walking on knubs, my mind seems to wander... and even gropes around trying to find a particular word.... I have a hard time going to sleep .... and really, I just do not look or feel well or LIKE I USE TO Before the Cancer Experience.

I am LIKE I AM>>>>> GOOD and BAD<<< and will NEVER BE THE SAME PERSON AGAIN !!!!!!
NO,, I canNOT do things that were once easily done. I am slower doing and thinking... and I DO NEED MY FAMILY TO PITCH IN AND HELP.

Kat in the Delta

[debski]

Kat in the Delta

Yes - I understand completely. Sorry to barge in on the chat- but had to say that I feel the same. My oncologist is the most lovely woman you could imagine- so kind and seems to understand. She told me that I may well never get back to normal. That's just how it is so I am going to try to get on with it BUT at the same time I am doing my best to eat well-exercise and be much more selfish.

I totally agree that other people cannot understand. In fact I am amazed at the lack of empathy. If I am being generous I would say that it is partly because they care so much they don't want to believe you feel the way you do- but actually I think we are just all programmed to be selfish.

So I am going to be the same.
Really hope you get through this rough patch soon. I am amazed at the progress I have made recently- but I am not eorking at the moment and that helps- I just sort of collapsed mentally and threw the towel in with work-temporarily.

It is unbelievable what has happened to us all- but I am wondering if denial would be a better place to live!

Love Debbie