Back into the land of treatment....sigh...

Hi Cellbird,

I don't want to be a downer but I can't understand why they are trailling these drugs again.  Haven't these drugs already been trialled?  I've done searches on both of these drugs and they already have findings on the efficacty of them and have discovered in the Hera trials ( I think it was Hera) that they work best when combined with several therapies!

On a lighter note though, I wouldn't be too worried about Herceptin I know intravenous administration (or whatever you say) isn't pleasant, but I've had little or no side effects from Herceptin and I've survived 4 rounds of A/C (repulsive) 12 weeks of Taxol and the Herceptin is very minimal in comparison.

So hang in there and good luck.  But don't worry overly about Herceptin, provided it's not given in conjunction with a cycototoxic  (or however you spell it) you and your heart will probably be fine.

Good Luck.

Good thinking Tonya, yes you might be right! I will ask about that, thanks, Celeste x

Hello Kathy, yes its certainly a bummer about the herceptin...I guess thats the risk you take going into a clinical trial! Yes i have read all about herceptin and its advantages, disadvantages etc. I'm not looking forward to it to be honest. At the moment I'm just feeling that i have to go ahead with it, not only for my sake but for my 13 year old daughter's sake too. I am a sole parent, so i have to think about how a decision NOT to have herceptin may affect her. Thanks again Kathy, take care Celeste x

Thank you Tonya for your kind words....they mean so much x.  I participated in the international clinical trial in 2009/2010 and was randomised to the lapatinib only arm of the trial. Other people either got herceptin only, herceptin and lapatinib at the same time, or herceptin first followed by lapatinib (6 months each). At the time I agreed to participate, the 'word on the street' was that lapatinib was most probably a far superior drug to herceptin, with many less side effects, so I was thrilled to have been chosen to take lapatinib only! There were a number of side effects, but everyone kept telling me how lucky I was not to have to have herceptin intravenously every 3 weeks (lapatinib is in tablet form) and be at the risk of heart failure. I thought I was on the next best drug to take over from herceptin, until I received a phone call at work on Monday from my Oncologist. I was shocked to hear that the preliminary results have shown that lapatinib may not even be as effective as herceptin! My Oncologist was also very surprised and very apologetic. They've had to stop the lapatinib only arm of the trial now, and all patients on that arm are being offered herceptin as 'compensation'. It doesn't mean I have to accept herceptin as lapatinib is an effective HER2 drug...its just not as effective as herceptin. Early results of the trial have shown that those on lapatinib only are having 'higher recurrences of relapse, sooner'. I dont know the exact statistics, but I will be discussing this with my Oncologist on October 4th. My feeling is to go ahead with herceptin however, due to the news I've just received. I was so angry and sad for a few days after receiving the news as I was just starting to get my life back together and had set myself some wonderful goals for early next year. Anyway, I have my fingers crossed that all will go well with few side effects. Thanks again Tonya, Celeste x

Hello June, thanks for your comments. Yes, I was shocked to say the least! I have been told that if I go ahead with herceptin, I'll have 17 doses over 12 months...you only have 3 to go June...wow, fantastic! I also suffer from joint stiffness, but this is from Tamoxifen and have also put on a bit of weight because of it. I'm hoping weight gain isn't a side effect of herceptin too. Thanks again June, all the best, Celeste

hi celeste,

 what a lovely name and a lovely pic of you in red with flower in your hair, or is it a hair clip ?

 sorry to hear you are recommended to have herceptin. i did not have it, bit i had chmotherapy.

i expect you  have you read the statistics about herceptin and advantages and disadvantages?

thanks for the post, kathy. OOXX.

What a pain to have to have more treatment after all this time has elapsed. I was so sorry to hear your news.I mean,you just want to put it behind you and get on with life don't you.Did you know that this was a possibility back in 2009/2010?I'd be really p----off if I hadn't been told.Sorry I can't help you with Hercepton but I send you my sympathy on having to face more treatment.

                               Tonya xx

Hi Celeste.

What a blow that the trial drug not as good as Herceptin and having to start over again.

I have been having Herceptin and have had 14 treatments to date with just three more to go. Its a long drag with the 17 treatments over 12 months. I have tolerated this fairly well and apart from getting very tired haven't had any problems. My treatment takes about an hour but this depends on how busy they are in the oncology Dept. My main problem now is joint stiffness and aches from the Femara but with the weather improving that may decrease (I hope!) I have also put on alot of weight over the past year and am hoping that will go when I have finished.

Hope all goes well with your treatment.

Cheers  June