i had a reccurrance last sept 2011. while i was still on herceptin, it was nodules in the skin, and they said it was only local, i had them removed and no further treatment after, but after this i had heart issues so the herceptin was stopped, i was put on heart tablets, four months later i am back on it for lung mets, so what i am trying to say is when i was on it, i had no spread but because i at to stop it for a while had a chest wall reccurrance and noudules in the skin again, but hopefully now the herceptin will stopped the mets from spreading in any other of my organs,
I had a recurrence 5 months after finishing herceptin and a new BC diagnosed in the ither breast a few months after finishing 😞
i had a reccurance in my reconstruction side, in sept they removed four nodules, which some cancer left from original dx, i have three more herceptin left but its been stopped because of heart, got to go to see the cardioligist.
Hi All, i,ve only just discovered this thread and thought i would share my experience of herceptin etc with you all. I was first diagnosed in 2007 with bi-lateral er+ and her2+. Had six fec, radiotherapy, double mastectomy with reconstruction and one year of herceptin. Recently been diagnosed with recurrence, bone mets in spine and pelvis. I was told at the time of my first lot of treatment with herceptin that they were still not sure how long it was best to give it for. I personally feel that if they had kept me on it, i might not be in this possition today.
Anyway i am back on it indefinately and just hope it works to keep it under control, having it along with taxoter and zometa all delivered at the same time. Didn't have any problems for the year i was on it originaly so hopefuly be the same. There are quite a few women on this site who have been having herceptin for many years and are doing ok so i'll hang on to that.
I was asked to take part in a trial of a new herceptin type drug called pertuzamub, delivered along with TDM1, but to be honest the more i read about it and how little it had actually been tested so far, and some of the side effects, i was just too dammed scared!
Hi I start Herceptin next week. I was asked about the trial of 6 months v 12 months. They told me that many European country's only give herceptin for 6 months as standard treatment rather than the 12 months in this country. I was unsure when they first asked me but then I thought about it and decided to go on the trial. The way I saw it was that every drug and treatment I have been given for BC has started with some one taking part in a clinical trial other wise we wouldn't know how they work and their effectiveness, and if I can do the same to help others in the future I didn't mind. One day it could be my Sister or mother having to have treatment.
And, if 6 months means less stress put on my heart then maybe that's a good thing? Obviously, I wont know until I start what group I have been put into and I think everything happens for a reason and I'll just take what comes 🙂
Although I understand and have respect that it is a difficult decision to make and a very personal choice for my situation.
Hi Jaynek, Thanks for your good wishes. Just waiting to get started now. First Tax next Tuesday.
I had WLE with clear margins, no lymph node involvement. Epi/CMF followed by 25 rads.Herceptin for 12 months and Arimidex for 4.5 years.
This lump is still grade 3, Her2+ but ER-. So just stopped the armidex.
Not had chance to read your story, off to work now but will catch up later. Thinking of you, J.
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.
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.
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 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..................
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.
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.
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,
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.
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.
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.
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.
Hi Thanks I think I have already made my mind up and going for the year after reading some posts on here. take care Katie xxx
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.
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,
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
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
technician, good to hear from you and im sure we must all feel the same at some point or another its the uncertainty with cancer and we are all in the same boat, yet none of us are the same. We just dont know and that is what makes it so scary for me.
Just found this thread and thought how it captured how I am feeling. I have had 6 herceptin with 12 more to go. Have had a lumpectomy, no node involvement, FEC chemo and a session of rads before and am on a 5 year regime of hormone tabs. Want totally to feel I am in a good place and believe me I do acknowledge all my earlier diagnosis / treatment ( yuk as some of it was) should make me feel so - my hospital an clinical staff are great. many of what I see and read of what others have been through and are still experiencing makes what I feel somewhat trival.This journey is doable in my mind if I can hold onto the thought that I will have some quality time beyond it. Too much info is a bad thing they say but I need to get my head around the premise that the treatment will not be short lived ( sorry)
I dont think there is a definite answer to this
Thanks to all of you who respond -
Thanks yes i new they were also looking at that but they seem to be looking at the possible 2 years. I think i would prefer 12 months as opposed to the 9 months as long as our hearts stay strong for it. I do hope your keeping well and very best wishes.
I have just had my last herceptin last week. The latest trials about herceptin are to see if it can be reduced not extended for primary BC. I was asked to be part of the trial to see if 9 doses is as effective as 18 doses. I turned it down and do not regret it.
Thanks for the replies ladies, im one that likes to know the ins and outs of everything and face the fear head on. Mad i know. The recurrence risk is highest as i understand in the first 2 years of completing Herceptin. I believe thats why the trials are looking at whether we would benefit by being on it longer. I dont know about positive hormones as im negative but believe its better to be positive as you have more treatments to go at. Dont take my word for it.
Debs the American forum has been great but the trouble is we cant get the same drugs thanks to NICE how can they call them Nice. Please keep the chat coming it helps to know how other people think and deal with the whole risk of HER 2 and if we can help each other that cant be bad.
CM, am SO with you about the wording thing. I don't think that the medical profession understand that we go away and analyse their every word. They do not take into account our vulnerability. Equally, I suppose, we should try and be less neurotic, but it is difficult not to be when it is your life they are talking about.
Hatty, i feel that same as you. Have had 3 herceptin, and just about to have 4th on Monday, my first one without the chemo. I am ER positive as well, and I don't know if that means, 2 types, therefore double the chance of it coming back. I have resisted trawling the Internet so far. My mx is next week, and I will ask my surgeon, when all the final histology results are there. I don't think any of us will ever get the completed reassurance we all crave, but all the same, I would like to know what I can expect realistically.
Is it the case with BC, that the longer you go without recurrence, then the better your chances, or are different types different? If you have made it 5 years, are you likely to do 10??
I can see from your post how anxious you are about her2 and herceptin. It must be disconcerting not being able to find the primary bc in your breast. I think there is another forum member in the same position. Have you read any of the American her2 forums? I often pop on as they have different treatments and perspectives, there is quite a long thread on there about recurrence. If you google her2 support, you will find the main forum. Of course there is always a health warning with theses forums because they have diff treatments and you might not always get good news.
I think it will be many years before they fully understand how beneficial herceptin is in the long term. But I am thankful it had been licensed for primary bc before I was dx.
i must say as im coming to the end of my chemo my next tax will be my last i have been more scared than ever before. I know herceptin will keep on going for 12 months but it just doesn't kick the fear away. Ive been told im high risk for recurrence but in the next breath an excellent prognosis to die of old age. Cant work it out in my head. Im slightly different to everyone else on here as i am cup cancer and they have never found my primary site. It presumed breast cancer and my lymph nodes have shown on the scan as to be likely scar tissue now. Im due to have them out in May, they are not taking the breast because they cant find anything. I have radiotherapy to follow and they call this there buttons and brazes approach. Any thoughts would be welcome on the subject of herceptin and recurrence.
Its the things like Herceptin doesn't protect against the brain as it doesn't cross over the blood barrier. Tykerb does but we cant have it to protect us. agggg some days i drive myself mad usually straight after chemo, when i start feeling better it disappears into normal life again. As i say though not many reporting any recurrence on Herceptin. Trials are saying that if proven they may leave us on Herceptin for longer. Just waiting to see those trial results.
I think what rings alarm bells for me is the advice that you should "continue taking Herceptin for 12 months or until disease recurs, whichever is sooner" or words to that effect, as written in the NICE guidelines. The wording is very alarming as it IMPLIES that recurrence during those 12 months is really common, but if you read it more dispassionately there is absolutely no indication of the likelihood or not of it recurring during that time. Still, you'd think they could be a bit more careful with how they choose their words, don't you think?
thank you for that not sure that i fully understand the numbers that well either. Going by my post its looking good though as no one is reporting anything much about recurrence.
I'm not any sort of mathematician, but I think it means that if you're on Herceptin, it improves the chances of total success by nearly 40%, which is a big number and very impressive.
Deep blue, great news that is 2 years clear then the worse period is over for you I have only just started and have just had 3rd, im hoping they will give it longer by the time im ready for finishing?
thank you yes i had seen this and just wondering sort of my own research through this web site as to how well herceptin was working as the full results still arent out although due out soon i believe.
I finished herceptin December 09 and this is something I have wondered about so I do hope that by having no replies this means 'super duper' news for you too.
See the link below. It doesn't answer your actual question, but is some american research recently published showing a reduction in recurrence of 24% due to taking herceptin
Anecdotally, I have heard that the most likely time to get a recurrence if you've had herceptin is during the two year period after it finishes. If you can get to the two year point ok your chances of staying ok are much higher. I haven't seen any research to back this up.
I was just wondering how many people have had herceptin and had a recurrence and at what stage ie during herceptin or after it has finished. I wish they would hurry up with the results.