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

myraazzopardi · 09-29-2007, 08:52 AM

Hello girls. Changed hospital and have a really unsympathetic onc here Spain.
I sort of stated that prognosis for Her2 positive was not good. His answer yes that’s why we are giving you herceptin. I then asked what when the herceptin treatment is finishes. His answer “ Would have been better if you were node positive as we would have given you a tablet for five years” Anyone know what tablet and after all is it true that I am worse of being node negative. Second question. Does anyone else have discomfort with the operated breast? It’s now nearly a year and a half and I am sometimes still supporting my breast with my hands. My nipple area very sore to the touch and I am still wearing a constraint on my car seat belt so that it does not touch my breast at all.
Hate being a cry baby but hope someone can answer my questions. Love and hugs to all my hamster sisters.

tousled1 · 09-29-2007, 09:17 AM

The tablet or pill he was talking about was Tamoxifan which has nothing at all to do with node negative or positive. It has to do with whether you are estrogen/progesterone postive. I think you need to get a copy of your pathology report.

myraazzopardi · 10-01-2007, 06:44 AM

Hello Tousled. Thank you for replying. My report is in Spanish and though I speak the language not I think for some medical terms. I am her2 positive I CDI (carcinoma ductual filtranete. 1.5cm. with 10% intraductal Grade 3 with what seems to be hormonal receptors negative B2 3+ Oh dear I really need to see if I can get this all English. All my best wishes. Myra.

BonnieR · 10-06-2007, 09:35 AM

yes, it sounds like he was referring to "hormone" positive, not node. I know you said you speak Spanish but are you and the onc speaking the same language? I mean that in a couple of ways really. Sometimes I dont feel that my doc and I are speaking the same English! I dont always understand what she has told me. That is why I am sure to write my questions and her answers to be able to review them later. And ask for clarification. My husband has been with me during appts and he will hear things very differently than I did. And he is usually right. Anxiety can cloud our comprehension.
And get that report translated into English. Or at least have it explained to you...
Keep the faith,
Bonnie

myraazzopardi · 10-07-2007, 02:26 AM

Hello Bonnie. Than you for replying to my question especially as you are so recently diagnosed and we all know what we go through in the first few months. You are totally correct about the language. I will check out my pathology report. I wish you, your dear husband and all you family all the love and care in the world. Myra.

kat in the delta · 10-20-2007, 12:33 AM

I had a masc. in Apr. of 2005. and I am in PAIN.... my new Onc. said my chest was very tight...,my New Onc also asked me if I had been doing my EXERCISES,,?? ,( no one told me to do Exercise for chest..) Anyway. after going to the cardiologist to check out my Heart..&if it was O.K., he said HE was sending me for some physical therapy....
Remind your Spanish Onc. to test your Heart every 3 months while you are taking HERCEPTIN. You do NOT want it to fall below 50. (LVentricle output or Input "score"). Have you all had a genetic test ??
Anyone hear of the gene Topel or Topell...only 8% of HER2+ have it. I do not know if that is good or bad... rsvp,
kat in the delta

myraazzopardi · 10-20-2007, 05:12 AM

Hello Kat. Thank you for responding to my email. I am having the heart tests every three months. I will take note of your advice and see that I do not fall below 50. Reading a book by Eckhart "THE POWER OF NOW" Its not religious. It really helps girls. I also stated a couple of months back that I had no side effects from Herceptin. Well now my 7th treatment and yes knee joints bad sometimes (could have been that I was shopping in Marbella with some lovely high heels and unstead of walking like a cripple as I felt the pain and difficulty I strode proud till i got to the car and kicked them off. Will still put on my heels now and again. No other symptoms that I am noticing. I feel for all of you great girls that are suffering so many side effects. Kat let me have a private email and I will send copy of the book. The Power of Now has a simple immune booster. I use my mind as much as poss. Health to you all we will fight this and show that Her2 wont win. Love ya all.