Mrs Carol W
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Comments
Herceptin
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
herceptin issues
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
Herceptin
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
treatments
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
Hi Carol,
I have just finished my herceptin treatment in July this year! I guess I'm one of the lucky ones as I didn't have any major problems. I still get heart palputations but it doesn't stop my active life. I think my age has something to do with it though as I was only 29 when I commenced treatment. It is interesting to hear everyone elses experience!
Good luck everyone with the rest of treatment
Nat
Herceptin
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.
Cannulation
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!
Herceptin vs Lapatinib (Tykerb)
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
herceptin
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
life after treatment
hi girls, i am new to this website. Finished all my treatment (herceptin and avastin) in July 2010. Am doing pretty well. I also had aching joints and i put it down to the avastin i was taking. also had nose bleeds as well. Needed to get on line as am pretty positive but just at moment am going through a negative patch. just wondering if any one else has that from time to time so many months after treatment has finished
Looking forward to hopefully hearing from you guys
Kath
life after treatment
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
life after treatment
i katsam,
thanks for the reply. i now know what my problem is. i have just lost a friend to cancer. she started off with breast cancer and then it became metistatic in the bones then liver. she was there for me when i first was diagnosed and i think i am not only greeving but a little scared as well. it always seems make you analyze everything again when this happens. normally when i hear about things like this i tend to become positive again fairly quickly but this time i think it is a little too close to home and it is taking a little longer than usual , however i know i will get back on track.
thanks for your reply kathm
Stay positive kathm ... I finish my Arimidex in a month or so and after 5 years I simply can't wait. Last week my heart surgeon told me my heart was back to normal at last after my 'Herceptin' fiasco ... it's only taken 4 years! LOL
Some days are better than others ... I too have lost dear friends to Cancer and when that happens you question your own mortality wondering what's around the corner for you ... but I try to shake off the worries and stay focussed on all the good things in my life rather than the irritations.
The network of caring professionals that are around us all is amazing and the knowledge that there are others out there trudging along on the very same journey as myself inspires me and I am truly in awe of the strength of women and how well they deal with everything.
God bless you all.
Rennay
Hi Kath, I know exactly how you are feeling having been in that exact situation myself. I had been told that towards the end of my treatment I would start to feel very low and even though i didnt want to believe it, the person who told me was correct. I think we all go through our highs (wonderful to be alive days) and lows (how long will it last). To have friends lose their battle really does bring it close to home. I finished chemo & rado in 2008 and Herceptin in Jan 2009 and everyday is a new day. I tolerated both the chemo and the herceptin without to much trouble - a small price to pay to stay alive. I have a saying on my desk 'Unless its life threatening, it doesnt matter' and that keeps me from sweating the small stuff. Kath, accept your low days and enjoy your high days. Pretty soon, you will have more highs than lows and hey, isn't life just wonderful. !!!!
Herceptin
Hi all, I was first diagnosed in Feb 09. I had Chemo and then Herceptin for 12 months. Tolerated all very well and was glad to finish. In Feb 11 my surgeon found a lump on my mastectomy scar line which turned to just be a local recurrence. When I say "just" - it was scarier this time than the first. I had to have a PET scan - it showed up nowhere else. So I am now on Herceptin for the forseeable future. I have had a port inserted and am having no dramas. Some days it is hard to be positive - but my friends and family keep me going.
Hi All, I start chemo shortly and am HER2+. Its good reading all these blogs to get a realistic idea of what really happens and all the side effects. Herceptin sounds like a really nasty drug so I'm not looking forward to that one! On the upside so far I've felt pretty upbeat about it all and looking at the positves, hope it stays that way. Cheers.
That's the spirit TWH keep positive ... I'm thinking of you ...
I'm through and out the other side and I look at myself in the mirror and say 'well done girl, you did it!' lol There are lots of folk around to help ... you're not on your own. Big hugs and kisses xxx Rennay
Thanks Rennay!
herceptin issues
I found Herceptin was far nicer than the chemo drugs and their side effects or the side effects of Arimidex. It just was a pain going in for an infusion every third week and having some swelling for a week - again nowhere near as bad as with chemo.
I now have lymphoedema which is an expensive chronic condition requiring constant vigilence tp prevent further tick & mozzie bites or nicks, burns etc which result in further swelling then massage, creams & bandaging and for me a month of intensive treatment with complex manual therapy.