I'd be interested to hear how many of you got Herceptin for early stage BC either before or after it came on the PBS about October 06. I was one of my oncologists first PBS patients. Carol

Hi Carol, I was one of the first to go on Herceptin after it went on the PBS. My experience wasn't good. My heart function plummetted and I was taken off the treatment after 11 sessions. I should have had 18 all up but it wasn't to be. My heart is still in trouble and I am now under a heart specialist. You can't win sometimes can you! LOL Did you have any problems? Rennay

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

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.

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

Mrs Carol W | BCNA Online Network

33 Replies

Rennay
Member
12 years ago
Hi Dribbler 12,

First you have to keep going for those who love you ... when you're tired and feeling dispirited this is really hard ... just keep your eyes on the prize ... and soon you will be living life for yourself as well as for those you love and the journey becomes easier.

I still get a lump in my throat when I read about others starting the journey and I wish I could help them all. My advice is to remember everything passes and before you know it it will be in the past. Never truly forgotten but definitely in the past.

I wish you strength , stamina and the belief that it is do-able ...we're women after all ... we can do anything and everything.

xxx Rennay
Dribbler12
Member
12 years ago
Rennay, I am so pleased to hear that you are doing well 8 years later. It was just what I needed to hear. Thanks :)
Rennay
Member
12 years ago
Just caught up with this thread after a long absence. Pleased to report I am well and enjoying life.

It will be 8 years since my diagnosis ... time flies ... and all's well!

Rennay
Dribbler12
Member
12 years ago
Hi all,

I have had 9 Herceptin treatments and so far so good and hoping it stays that way. Though do have some aches and joint pain. Thank God for the drug Herceptin and for the push by the BCNA to get it on the PBA because without it our outlook would not be good. Most of the time I am positive but sometimes the negative thoughts creep in. A cancer diagnosis changes your life forever.