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

[kat in the delta]

Hey person with the brown spots, too...,
AS you can see...I am chemo-brained too. I now think IT is also from poor circulation to the Brain..lack of O2.
Do you mind telling me or asking WHAT THE SCORE OF YOUR MUGA WAS LAST--make sure you get all of your scores..before letting your Onc know.. just ask the secretary or if needed --sign a Medical Release form to yourself. Let me know...
Mine went down to 47...but I never got the TRUE ENDING score as my onc would not scan my heart ...just kept giving me the Herceptin.... Glad to know other oncs give the Muga...or echo of heart like YOU had. I had only 3 scans of my heart altogether ..including B-4 Adriamycin/Cytoxin... what about YOU ..HOW OFTEN OR HOW MANY IN ALL ..echos did you have??? kat in the delta
kat in the delta

[gin-tx]

Dear Kat,

I am not on tykerb, only Herceptin and Aredia. Therefore I have no brown spots at this time. All I know is my onc nurse called and said my echo was perfect, I do not know the numbers but have had 3 in 18 months. I should have one every 6 mo but the time slipped by and it was 9 mo since my last echo. Sorry I can't supply you more info but I'll try to remember to ask onc when I see him the numbers of my echo. The technician scared me, said something did not look right and wanted to give me an injection to get better readings, I refused. I told her if my onc needed it I would come back, obviously he was happy with results and did not need further testing.

hugs,
ginkott1@aol.com

[kat in the delta]

I read on the package insert of Herceptin recently
that your Onc should be testing your heart at least every
3 month,,,not 6 months.....or MORE often if you have any
symtoms....short of breath.,pain.etc..ANY Symptoms??
Still when you go to your NEXT APT...ask the Secretary
for copies of all of your Echo's or Muga's or Rested-gaited
Heart scans/tests.... YOU YOURSELF needs to LOOK at the
Numbers...... Only 3 tests in 18 months ?? I'd want to see
them if I were you..and I DID GET MINE>>I WAS SHOCKED !!
I never mentioned it to my Onc after that.... I showed him the
brown spots ..told him about my pain and shortness or breath
and NOT being ABLE to Clean a room..much less the HOUSE !!
-------------you need to look at your scores.........MINE READ
ME A PREVIOUS SCORE OF 50%..when it was really 47, which
is too LOW to be giving ME --full strength doses of HERCEPTIN
and never ending...until the end of 1 and 1/2 YRS, like you..
OH,....your ONC should also TEST your Heart at the END of treatments
as well....and GET THAT NUMBER TOO...or you will feel..as BAD,
or worse than ME !!! NOW, don't say a word to onc..and GET THOSE
TEST NUMBERS...asap !!!! Kat
kat

[gin-tx]

I have not had the brown spots on my ankles up to now but Herceptin and Aredia are the only 2 drugs I am getting. Yes I get an echo every 6 mo, last one was perfect. As far as other symptoms, it could be from other drugs that you are being given. My onc is so good about discussing anything that is on my mind. I feel so lucky to have such a wonderful dr. Good luck to you and keep in touch to let me know how you are progressing. If your heart problems get worse, go see a cardiologist, don't wait for him to send you.

ginkott1@aol.com