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

[Jackie07]

Matria,

The molecule of Herceptin is usually considered too big to cross the blood-brain barrier in our brain (that's why 'Tykerb' is often used for brain mets - because its molecure is much smaller.) But new studies do show effectiveness of Herceptin even for brain mets. Chemobrain is, most likely just like the name suggested, caused by chemo agents - especially anthracyclines such as cytoxan, epirubicin, ...etc.

It takes a while for the problems to surface. Most likely the damage caused by chemotherapy did not reveal itself until after you had begun Herceptin-only infusion.

There are studies (at least one British study came to mind) showing 9 (or 12?) weeks woth of Herceptin achieves 98% the effect of the one year schedule. Breast cancer, especially Her2 breast cancer, has a bad reputation of recurring - either in the same area or the other breast, or even sometimes in other organs. It is prudent for us to remain vigilant.

Researchers are paying more and more attention to details about the cognitive decline related to breast cancer treatment. For example, the following abstract focuses on the very beginning of our cancer journey. It concludes that diagnosis and surgery do not have much effect on the cognitive decline:

Acta Oncol. 2011 May 9. [Epub ahead of print]
The effects of breast cancer diagnosis and surgery on cognitive functions.

Hedayati E, Schedin A, Nyman H, Alinaghizadeh H, Albertsson M.
Source

Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.

Abstract

Abstract Background.

Women with breast cancer (BC) report cognitive impairment. Receiving a BC diagnosis may have a negative psychological impact. We sought to determine whether a diagnosis of BC and subsequent surgical treatment reduced cognitive function.

Material and methods. We recruited women, who had a positive radiographic finding, consecutively from the mammography screening program at Stockholm South General Hospital.

All subjects completed the Headminder Web-based neuropsychological battery Cognitive Stability Index (CSI) for response speed, processing speed, memory, and attention at enrolment (T1, Baseline). CSI was administered again, after BC was ruled out, or after sector resection or mastectomy, if BC was confirmed by cytology or biopsy (T2, Retest). Results and conclusion. Of the 148 women approached, 146 were enrolled; 69 were healthy and 77 had BC.

Comparison between groups at baseline, according to independent t-test, showed significant differences in response speed and processing speed. Cognitive abilities did not decline in either group on any of the measured domains.

Our results suggest that a diagnosis of BC and subsequent surgery is not associated with substantial cognitive decline at retest. However, the lack of improvement in attention at retest among BC patients may be suggestive of a decline.



Ps. Idelle Davidson, one of our members on this Board, has written (with Dr. Dan Silverman) a very nice book entitled "Your brain after chemo". There are quite a few threads on the topic of chemobrain and/or 'cognitive decline' here on the Board. You can use the 'search' window on top to look them up.

I was diagnosed with Stage IV breast cancer in 2006 with mets to liver. I have been taking Herceptin since May of 2006. I really did not have any bad side effects until this year - I took it once a week and usually just had a headache on the day of treatment and some fatigue. I had been having some bad shoulder and neck pain which is irritated by the use of the port-a-cath so they suggested switching me to the once every 3 week infusion. This really messed things up. I started feeling very tired and each successive treatment my bone and joint pain started getting really bad - it got to the point that my knee would feel like it was going to give out and I could not walk on it the pain was so bad(I am only 35 years old so I should be capable of walking around but I was having to use a cane.) I also had hip and ankle pain on that same side as well as upper back pain. I noticed it would start to lessen as I was nearing the end of the cycle getting ready for the next dose and as soon as I got the next dose it would get really bad again. I called the onc. and they switched me back to the weekly which I have been doing for about 5 weeks now. The symptoms are less severe than the 3 week dose but the knee, ankle and back pain has not gone away it is just not as severe - it does get worse on treatment day and slowly lessens as the week goes by but it is really starting to wear on me. I am thankful for this drug as I would probably be dead without it but taking this drug for over 5 years now is starting to take it's toll. The onc. says I will take it until it stops working or I have heart issues but I am thinking on asking if I can have a short break and see if that helps - I don't know if he will do it or not but a girl can hope right?

[Mary L]

Hello, my name is Mary and Herceptin saved my life. I was diag. with Inflammatory Breast Cancer stage IIIb and given a 28% chance of surviving 2 years. Herceptin saved my life and this Oct 2011 I will be an 8 year survivor. Yes, I had side effects, quite a few of them and most of them are going away. The alternative for me was to die. I am so thankful for Herceptin and if my cancer does return, I know Herceptin will be there for me. I wish you the very best. I just wanted to tell you my story with Herceptin. Best Wishes, Mary L