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

KayP
Member
16 years ago
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
Rennay
Member
16 years ago
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

Forum Discussion

Mrs Carol W

33 Replies

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