Mrs Carol W

hi kathm,

i also have also been positive all the way trough my treatment, but i also have down  days every know & then. it has been nearly 16 months since i finished trarment. i look at it this way there are more  good days than bad, so can your chin up.

cheers katsam

hi all, i finished herceptin in sept 2009. i had no problems with my heart i suppose i was lucky. i am still having trouble with aching joints though. i still sometimes get cramps & runny nose.

cheers katsam

hi all, i finished herceptin in sept 2009. i had no problems with my heart i suppose i was lucky. i am still having trouble with aching joints though. i still sometimes get cramps & runny nose.

cheers katsam

Hi all, in 2009 I was invited to participate in a clinical trial (ALTTO Trial)which is investigating the effectiveness of lapatinib (tykerb) versus herceptin for HER-2 cancer. Is anyone else on the trial?  I was randomised to the lapatinib only arm of the trial (arms were- hercpetin only, lapatinib only, or herceptin for 6 months and lapatinib for 6 months). I finished taking lapatinib in April 2010. Lapatinib is an oral drug that has been proven to be as effective as herceptin for HER2 cancer, but apparently with much less side effects, especially as far as the heart goes (ie: it is supposed to be much kinder to the heart which is one of the main reasons why it is being pursued as an alternative to herceptin) . I took lapatinib for one year and so far all my heart functioning tests are excellent! I was so pleased to be able to just take tablets at home without having to go to the hospital for herceptin. Just wondering if anyone else is on the trial....I am yet to find anyone else who is!

Cheers, Celeste

Hi all, in 2009 I was invited to participate in a clinical trial (ALTTO Trial)which is investigating the effectiveness of lapatinib (tykerb) versus herceptin for HER-2 cancer. Is anyone else on the trial?  I was randomised to the lapatinib only arm of the trial (arms were- hercpetin only, lapatinib only, or herceptin for 6 months and lapatinib for 6 months). I finished taking lapatinib in April 2010. Lapatinib is an oral drug that has been proven to be as effective as herceptin for HER2 cancer, but apparently with much less side effects, especially as far as the heart goes (ie: it is supposed to be much kinder to the heart which is one of the main reasons why it is being pursued as an alternative to herceptin) . I took lapatinib for one year and so far all my heart functioning tests are excellent! I was so pleased to be able to just take tablets at home without having to go to the hospital for herceptin. Just wondering if anyone else is on the trial....I am yet to find anyone else who is!

Cheers, Celeste

A Chinese nurse advised me to drink two glasses of hot water just  before my chemo treatment. The chemo nurses also soaked my arm in hot water before they attempted to insert the cannula ... all this of course was towards the end of my treatment and it did seem to help. Too late for you but if someone else is having difficulty it might help!

Hi Rennay,

I feel for you - my only heart issue was that the hypertension that I had prior to surgery got worse leading to higher doses of Catapres and the Arimidex side effects listed elsewhere.

Like you I had quarterly heart ultrasounds but did not have problems so could complete the full year of Herceptin. I have heard of others not being able to complete the program.

My attidtude is what will be will be the doctors have so many treatment options available and what they advise depends on so many factors.

We are so lucky this and many other treatments are available on the PBS now thanks in part to lobbying by BCNA 

I try to remain positive and took pleasure in helping to organise my stepsons wedding a year ago; We have my older sons engagement party in a week and look forward to more family weddings and will damn well see some grandchildren arrive on this earth and hopefully grow to maturity as Mum did.

Hope this helps,

Carol

Dear Kay,

I also had a lot of joint pain but I put this down to also being on Arimidex (for post menopausal women and having no break between 4xAC; 4x taxol with peripheral .. pins & needles and numbness which eventually went; then radiotherapy to 4 locations starting 3 days after final chemo concurrently with Herceptin. After I think the 2nd or 3rd herceptin started on Arimidex which I am still on. Now 4 + years since surgery and 3 years into Arimidex - side effects weight gain, arthritis rings enlarged 4 sizes; elevated blood pressure; joint pain; osteporosis but finally over the hot flushes!

Carol

My main problems with Herceptin was that I had issues with cannulation. However I persevered learning that having more fluids e.g. water or juice before I was due for treatment and not rushing round or getting het up (easier to say than do!!!) helped here. I did not want to have a port as would have happened had they had a second time of trying 3 places to get in.

Also I think most of my other side effects were due to being put on Arimidex.

Hi Carol

I started on Herceptin in January this year and am 12 treatments in 5 to go. I am having a lot of trouble with joint and muscle pain and was interested to know if anyone else has this issues. I still have loss of feeling in my toes and balls of my feet but I am putting this down to the Taxotere.

I am hoping that the aches and pains might reduce when the Herceptin is finished. No problems with the heart so far. My kids think I don't have one anyway so thats no surprise.

Any info would help

Kay