I am stage 1, Grade 2/3, ER pos, Prog pos, and Her2+++. I have just finished my 4th FEC, I start herceptin next session along with Docitax for 4 more sessions, then carry on with Herceptin by itself every 3 weeks for a year. My oncologist says I have a 90% 5 year survival rate. the first two years being the most important. I am in Spain, and they seem to follow USA guidelines, with no expense spared, and they are very up do date with the most recent technology and medicine. I hope that this makes you feel a bit better. The most important thing is to keep positive, visualize yourself in 5 years time doing something exciting! I am planning on doing a hike for canceruk abroad somewhere late next year. I feel that if I have a plan and visualize this is will happen. I have done this all my life, and believe me it really works if you truly beleive it. So… no negative thoughts, everytime one slips in just think of something completely different and change the pattern. Take care now xx
Hi I have just had MX with recon 3 weeks ago, I seen my onc last week I’ve been asked if I want to go into a trial, instead of getting a full year of herceptin just get 3… because they dont they think 1 year is too much… there is no presure I can refuse just want to know what everyones thoughts are on this? xxx
What is in it for you?? I’d refuse, and go for the year if I were you. Unless it causes an allergic reaction, or weakens your heart, I cannot see any reason to risk it,
Tracey
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I was asked the exact same thing back in Oct. I decided to opt for the usual 1 year of Herceptin instead. I believe they are trying to see if it makes any difference if you have Herceptin for a shorter period and also if is more effective given with chemo right from the beginning, (I was told it was). I felt that it was a lot of strain to put your body under (especially when you are already having chemo) but also as I am 34 it was too big a risk for me to take and was much happier having the treatment that had been ‘tried and tested’. I was told a lot of patients were happy to go ahead with the trial as it meant they were finished treatment earlier and able to get back to normal quicker.
But I think we would all be naive if we didn’t think that money had something to do with it as well. Especially as we know the Herceptin is an expensive drug.
But the decision is up to you but don’t be afraid to say ‘No’. Although I did find it a bit difficult to get through to my onc that I was not happy to do it.
My onc has me sussed and knew that I had done a lot of reading about my cancer, treatments, different chemo regimes etc etc. He told me about the trial and said in the same breath “but I don’t think you’d want to do that, I expect you want the full 12 months”. He was right, of course. So I’m up for 12 months of Herceptin at the end of my 6 lots of FEC.
This is something I fear every single day. Having had a right MX and left WLE, I keep praying that I dont lose my other breast to BC. It already looks mishaped after the WLE.
Tracy like you being ER+ makes me feel that I am at double the risk of recurrence.
I too am having herceptin for 12months, will be having my 4th infusion on thursday. I hope that herceptin is the life saver for all us HER2 girls.
BC is truly an unpredictable disease having been exposed to this from my mothers diagnosis 16yrs ago. She was ER+ and had 4/12 nodes involved. She had a new diagnosis in her left breast last year (after 16yrs) again ER+. Luckily it was picked up very early due to the routine mammograms. Unfortuntely, I was diagnosed with BC 6months after my mum. Having experienced BC with my mother, I feel that the risk of recurrence with BC is always there regardless of us being ER+ or HER2+.
Its going to take some time to come to terms with this because for me its still early days. I feel I am still at my most vulnerable stage. Negativity seems to dominate all positive thoughts at the moment. Listening to other womens experiences really helps me cope with this better. So thankful to this website.
hatty,
I always thought that too, but as I mentioned my mum had a new diagnosis being ER+. A close friend of mine had a local recurrence within 4yrs of original diagnosis and she was also ER+.
I truly believe that BC is not a ‘one size fits all’. We can only pray and hope for the best.
amethyst - it’s just that ER+ is the most common type of breast cancer, so in absolute terms you will see lots more people having a recurrence - and you’ve been unlucky to see that with your mum and friend. But that doesn’t mean it is more likely to happen with ER+ cancers than ER-, in fact it is less likely to recur.
Amethyst5,
We could look at it that we have 2 variants that have been identified, and are being treated! That is what I try and do; MOST days! It’s not always possible, but it seems from some of the wise words on this forum, that it might not get better, but it does get easier,
Tracey
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I wanted to bump this thread up as I would be keen to hear how folks are coping with Herceptin and thereafter. I had my 7th Herceptin today and find these days rather strange as it seems to throw me back to the diagnosis, treatment path etc. and I realise although I have come a long way I still feel quite fragile from it (at times). I seem to be coping well with the herceptin (no cardiac issues so far) however I do feel very fatigued and have achy joints. I am now back at work full time as from this week and I wonder and worry at times how I am going to cope. I feel as if I am firing on 3 cylinders rather than all 6 (if that makes sense).
I too declined the offer of a trial whereby I would get only 3 Herceptins as opposed to 18. I said thanks but no thanks. I just want to throw everything at it that is possible to improve my chances. I try to remain positive but occasionally I find that quite hard. How are others coping? J.
Jaynek - it’s a long haul, isn’t it? I’m having no. 5 next week and another heart echo. I naively thought that I would be raring to get stuck into life again by now, but like you am finding that tiredness and achey bones are holding me back. And with my 1st year mammo coming up in July, I’ve been torturing myself with the idea that the aches are bone mets.
Is anyone else having aches and shivers on Herceptin? I’m on Tamoxifen too, so it could be that instead.
Lilac x
I am also on Letrozole so like you not sure what to contribute the SE’s to. I am due my 1st mammo in August and feel the same apprehension as you. I definitely feel that the aches are muscular and joint aches although I have found it hard to get used to my ‘new breasts’. I have a wide excision with removal on affected site and reduction on other. Don’t like the feel of the scarring on the affected site and have to continually try and convince myself that the lumps are scar tissue and not something more sinister. Not an easy journey at all…
Hi, I had my 9th Herceptin today (half way now!) I have achy joints and back ache but not all the time. I have osteoarthritis in my spine anyway so have back ache due to that so don’t really know if it’s the Herceptin or not. I have the occasional "tired "day but otherwise managing to get on with a busy retirement.
I had Herceptin for 12 months until Summer 2007.I was diagnosed in July 2005. Just been diagnosed with a local / chest wall recurrence.
I am going to have Herceptin again along with Taxotere.
I am sorry to hear that you are having to go through more treatment due to your local recurrence. I suppose that is what many of us worry about once the Herceptin stops…what happens next. Do you mind me asking what treatment you had following your diagnosis in 2005 along with the Herceptin? I do hope that your current treatment works well for you. Thinking of you. J.