The news I get from my ONC is never good. First they told me it was cancer, Lymph nodes affected, then grade 3, now HER2 postive. I am currently on pre-adjuvant chemo cycle 3 of 6 (hooray, half way), finished FEC, Taxotare next.
This probably isn’t rational but a part of me feels that my HER2 positive status is the final straw and all the herceptin can do is put off the secondaries by a year or so, and I am wondering if it is worth a further year of horrible treatment to acheive this.
Is anyone out there HER2 positive and NED/in remission currently? I don’t seem to be able to find anyone on the forums who is HER2 positive and currently well. If you are out there please please post, I am desperate for the tiniest bit of positive news!
I should point out that my last chemo cycle was last Thursday, so emotional state is pretty low, so sorry if this is a bit emotional/irrational.
I am HER 2 positive and have been on Herceptin for almost a year now. I had my first review in the Spring and was NED. It isn’t a horrible treatment. I haven’t really had any side effects. They monitor your heart because some people can’t complete it as it can affect your heart. My heart function has declined but is still fine to complete it and should recover afterwards. The treatment is once every 3 weeks. I started it just before the end of rads and returned to work soon after starting it. Only time will tell how effective it is as it hasn’t been used for primary cancer for long, but my understanding is that they think it will improve our outlook to be the same if we were HER negative. Lots of people on here are on Herceptin and I am sure you will get lots of replies.
I am sure you are really fed up to learn there will be even more treatment, but I can’t believe how quickly the time has gone. I have had 15 Herceptin now, only 3 more to go.
Hi Jinete789
There are loads of us who are HER2 positive - I certainly am and have got through 15 lots of herceptin so far and am due to finish in November. My oncologist told me that he considers the treatment he is giving me to be curative treatment so I’ve always held onto that. There are also plenty of HER2+ people out there who are currently NED and have been for a long time. Please believe that there is hope. The treatment for breast cancer in general has got better over the years and now that we have Herceptin as well, it is even better.
You have done so well and I think you just need to be given a bit of hope and I hope I have given you this.
Hi Jinete
Like you I am HER2 +, dx in June with stage 3 IDC. I was promptly started on taxotere and have just had my 5th one, out of possibly 8.
I have also had 3 Herceptin and last week asked my ONC what happens after the Herceptin stops, and why doesn’t it continue on to prevent any secondaries/recurrence. His answer was that there is no research at this stage to say that more is better.
So, I am glad you have asked this question as I am kinda hoping that the Herceptin is going to be the miracle drug and I await any responses too.
If it helps, I recently had to have a break from chemo due to an infection. They continued with Herceptin though, so I believe it works as efficiently as chemo as they stressed the importance of carrying on with Herceptin. Also I think because it has only been used to treat primaries there just isn’t the information out there to give us some reassurance.
I do understand where you are coming from with thinking that as we are HER2+ then our odds are against us, but for me I will take whatever treatment is offered.
Hope that you start to feel more normal again soon, I for one certainly don’t think you are irrational.
Nearly five years after fairly dire prognosis I am alive and NED. The problem is that long-timers don’t come back to the forums. They’re too busy getting on with their lives. One of my old high-risk chemo buddies (not her2+) isn’t doing so well now, so I come back to see how she is. Otherwise I think I would probably come back once a year.
I had FEC and taxotere, 8/19 nodes affected, lots of risk factor. Pre-surgery FEC didn’t worked, put on taxotere when it was far from standard, but onc still moved heaven and earth to get me herceptin, first with me paying and then NHS picking up the tab.
My full story is on the her2support website under profiles in courage under “Diagnosed high-risk four years ago and no recurrence.” I wrote it last October because I was concerned that people might think that everyone with her2 positive cancer ends up with secondaries because the people who write into message boards tend to have secondaries or be newly diagnosed.
Even the most pessimistic assessment of herceptin is the National Institute for Clinical Excellence’s concern herceptin might just buy five years, but that is the most pessimistic and I think that they were just thinking that to question whether it was really cost effective. They didn’t seem to have any evidence that it only bought five years. I haven’t heard anyone suggest that herceptin might just buy a year. Think of it this way: how likely is it that the NHS is going to shell out big money on a drug that doesn’t work? It’s hard enough to get them to spend on medicines that do work.
Herceptin might help cure some people. It seems to be able to kill cancerous stem cells, which chemos tend to have trouble with because these stem cells act more like normal cells.
You probably won’t find the year of herceptin to be too horrible. On herceptin I was pretty normal despite problems sleeping. It was nothing like chemo.
Hi Jinete
I was diagnosed May 06, HER2 + and 13/19 nodes affected. Had chemo, rads and finished my year of Herceptin in January this year. Although yes it was a drag, going every 3 weeks, I had very few problems at all - just a question of a little more tiredness towards the end. I amNED and very grateful that I was given chance of Herceptin - I’d say go for it. As others have said there are plenty of us here, and of course many who don’t come back on here to say how well they are doing. All the best x
My story is a little different because I was dx back in 1990 before HER2 or Herceptin were heard of. I had several new tumours and recurrence over the following 12 years. Had I been able to have Herceptin I am sure very little of this would have happened and I would have stayed NED! They seem fairly certain the cancer was so aggressive because I would have been her2 positive. 6 years ago I was diagnosed with Secondaries extensively in my bones. I had two more chemos that failed to keep things in check. Then my her2 status was checked from a tumour removed in 1999. I was put on Herceptin and have had no further problems since. For me it was indeed a miracle drug.
I think the beginning part of having a not so good prognosis with breast cancer is the hardest. I know I struggled with myself about the point of doing treatment (chemotherapy in particular). I’ve never ben under any illusions about my cancer and the limitations/lottery of treatmentand expected to be dead by now…but here I am nearly five years on…yes with an incurable recurrence but still here.
I am ‘triple negative’ so can’t even try hormonals or herceptin. I wish I could. During the time since I was diagnosed I have known quite a lot of women with poor her2+ prognoses who are still here and NED to tell the tale…I reckon many of them would be dead by now but for herceptin. And I know women with secondaries who have been on herceptin for 5 years plus, a few on their 80th and 90th cycle…still stable and still going strong. Yes there are bad news stories too and I could tell you sad tales of what you fear…the women for whom herceptin failed, who have died quickly.
But herceptin is I believe one of the really good news stories of the struggle for effective cancer treatments…it, along with tamoxifen, has transformed the landscape for many women with breast cancer…not enough, not nearly enough and there is yet no real miracle or wonder drug but progress has been made, is bieng made, there is hope along the way.
Most of the women I know who have had herceptin do say its not a hard treatment…a dragg going to hopsital 3 weekly for a year but manageable…and finally I used to think too that maybe more horrible tretament wasn’t worth it if I was going to get secondaries/ die anyway. I don’t feel like that now, though one day I may draw a line under treatment.
There are many good herceptin stroies and I hope you will be one too.
Hi Jinette,I finished a year of herceptin in July. I just want to tell you that for me it was a doddle. I had no symptoms apart from a bit of a runny nose. I did get tired but there was no comparison with chemo. That was dreadful although the memory has faded. The worst thing for me was the canula. I dreaded it. Also I had the added security of continuing treatment a year after chemotherapy and rads finished. This helped me and I feel I am lucky as some people have just these and nothing else. You are feeling a bit down I guess, I used to get like that. Please take heart from these posts and I am sure that you will find hercpetin no hardship.I had mine at home and I accepted that for 2 hours every third Friday I had to sit down and relax and do nowt. Not easy for me as I am always up and doing. Hope you feel a bit beter soon. Love Eileen
Hi Jinette, I finished 18 cycles in April.Yes i was fed up after 6 FEC,25 RADS, Tamoxifen…I had 1st herceptin in hospital, i got half of it then took a reaction, very cold, shaky, palpitations and vomitting (btw i sailed throuigh chemo, just very tired and sore mouth)…So was admitted that day, against my will as my mum was discharged the day before and i was staying with her…(she had mammo 6 mths after my dx, just home after mastectomy), ive 3 kids so it was a nightmare!..I was so so frustrated i cried, then realised i was in a cancer ward with very ill patients…put everything into perspective…I had the rest of dose the next week with periton and steriods…no probs…then rest with Healthcare at Home…they are all lovely nurses who came to my home and became friends!
We are lucky to have the chance to receive Herceptin, especially after the distance some women went to to fight for it. If you dont take it you might regret it, otherwise you will be reassured you have done everthing possible.
Also, i agree with previous posters that the NED ones are enjoying their lives and not on here…AS yet i cant move on as 2 year anniversary next month and i panic re mammo! And the fluffy pink thing, with being dx in Oct i cant forget!
My mum has only 3 to go!.. And shes 67, playing golf several times a week!
the other thing, im not sure anyone else noticed but from ive finished Herceptin my hair is growing so fast!! (Was very slow on Herceptin, Onc said he hadnt heard of it…but ive proved it for me!!0
Hi Jinette,I am NED for 2 years now and am her2+3…after chemo,rads,am on tamoxifen,was gutted as couldnt have my 18 sessions of herceptin as was planned as my LVF muga scan came back twice as too low,so risk to heart too great to have herceptin…at the time I thought OH BLOOMIN ECK WHERE DOES THAT LEAVE ME,but have been superduper to date,so hope My situation can give hope to anyone her2+ and may have to stop herceptin due to risk of heart problems…or even never get to start an intended programme as I had,.go for the herceptin if you can,it just gives that extra hopeful insurance at remaining NED,am fit,well ,back at work,even started on an intensive college course in my spare time,and yep am still daft as a brush ,even apart from chemobrain…onwards and upwards and best of luck to you,sending best wishes…Doolallyxx.
Thank you so much everyone for your replies. Like all of us at times I was totally scared and confused when I posted this. All of your responses have been so useful and I now don’t feel that my HER2+ status is an immediate death sentance. and as many of you suggest, at least it gives me an additional option for treatment which wouldn’t even have been available a few years ago.
Christine MH I don’t know how to find the Her2support site - is it part of the breast cancer care site? I would really like to read this.
It is also good to know that even if I get a recurrence that the Herceptin seems to be able to be swung back out to control it - and as for the NICE comments that it “only buys five years”, even if that were the case then that’s five years I can spend enjoying my life.
I also agree that most of those who are currently well are not spending their time on this forum - if I wasn’t in my jim-jams 4 days after chemo I don’t think I would be honest.
Thank you all so much again. I am overwhelmed by how kind you have all been and this has helped my emotional state HUGELY XXXXXX Jin
Thanks for your e-mail. I am glad that you appreciated my ‘profile in courage’. It seems to have really struck a cord with people, since I get a surprising number of e-mails about it.
I should add that when NICE said that herceptin might only add five years, they seemed to be saying this based on conjecture (basically that anti-hormonal treatments just delay recurrences in some women, even though herceptin is something entirely different). NICE are the only ones saying this and tend to be on the conservative side when talking about the benefits of drugs (whereas drugs companies tend to go to the other extreme).
Hi been herceptin for 4/ 5 years been a little progress and brain tumor but still here ! if i got offered herceptin i would take it no problem for me with side affects …sophie x
Hey Jinete. I am HER2 positive and have a positive outlook. Yes it is frightening and I have spent many hours crying as we cannot control this disease, it controls us but with medications offered it is there to help control and at the moment after my last breast op, the pathology was clear. Although I could jump up and down, I don’t want to get excited as I don’t want to appear cocky incase it comes back. I have had 8 sessions of debilitating chemo, now on Herceptin which is fine (no side effects), started my first radiotherapy today and on Tamoxifen (which upset me the most as I will be on that for 5 years). Try and stay positive - I have told myself I am fighting this all the way and it is not going to get me - that is my way of trying to cope. It is hard I know for all of us but all the treatments, especially chemo where sometimes I felt I could give up, I carried on and it has been worth it for clear pathology. My pain in the neck at the mo is being forced through the menopause and the night sweats and hot flushes but I am getting used to it now and managing it. And the chillow pillow I bought is amazing. Dawn x
Hi Jinete I am HER2 positive. I was diagnosed in January 2007 and have had chemo and radiotherapy and have one more session of herceptin left on the 17th November. I am then looking forward to getting my life back. I have started going to the gym although it is proving dfficult to get my fitness levels as they were but I am working on it