Community Champion
Posts: 2,559
Registered: ‎30-03-2016

Re: Any Her2 positive grade 3 people out there?

Yes Maddie, its great to hear from people who are a long way forward in this 'game' (I couldnt think what word to us, instead of journey....lol you all know what I mean, perhaps 'expedition of life' is better ?). Sometimes these forums can be a self-selecting group, of people who are just having problems and there are lots of people out there who are doing just fine and getting on with life happily. Wishing you a happy continued happy, healthy future x

Community Champion
Posts: 3,050
Registered: ‎08-03-2015

Re: Any Her2 positive grade 3 people out there?

Hi Maddie, what a lovely positive post to read on Christmas Eve! Delighted you are doing well 10 years on , long may it continue! Happy Christmas and thank you for coming on to post 🎄❤️

Member
Posts: 1
Registered: ‎24-12-2017

Re: Any Her2 positive grade 3 people out there?

Hi there,

 

I was diagnosed with Her2+ ER+ Grade 3 breast cancer 10 YEARS AGO, and have been healthy with no sign of recurrence since the end of treatment.  Hang in there!  Believe that you can beat this thing, be patient with the process of healing (it took a while to trust that not every little ache wasn't the cancer coming back!), and be kind to yourself...

Member
Posts: 4
Registered: ‎09-06-2017

Re: Any Her2 positive grade 3 people out there?

hello;

- I've got the same, but everyone is different and reactions are different too.......For example, they decided I won't have any radiotheraphy, but my protocole seems the same as you........

- reactions different, .................ask your doctor for problems, my reactions are not bad so far (2snd chimio), , after I'll have 12 taxon every week.....

- Don't think too much about it and live as usual in between, make yourself happy...........take pleasure...!

Relaxation may do you good as well...me, I've been practising yoga for a long time, I've started again after my operation (April 4th), it's getting OK, and I practice cycling a little and gardening a little for pleasure or painting, or sudoku, or .......music! Smiley Wink

Take care, and stop worrying.....(that's the best therapy)

Patricia.

Member
Posts: 752
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Im her 2 pos grade 3 only known by my node involvement as im cup cancer. have finished 4 fec and 4 tax due to have lymphs removed on 9th May as a day patient and then rads. ON Herceptin no 6 out of 18. All scans show NED will have to wait and see what nodes show after surgery but clinically clear.

Member
Posts: 382
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Yup, another one here. Done FEC 3, 4 lots of T to go, then surgery, then Herceptin. Oh what fun :-S

Member
Posts: 4,480
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Another HER2+ here. Age 49, Grade 3, Er+ 4/8, Pr+ 6/8, no nodes (hurrah!) and am in the middle of 6 x FEC, with rads, Herceptin and Tamoxifen to follow.

I had a portacath inserted as I really didn't want to get stabbed with cannulas for a year and a half, and I do want to get back in the swimming pool when I'm allowed (not supposed to during chemo).

It's good to read all the NED ladies posting, that is very reassuring. Bummer for you though, Annie22, let's hope it's a local recurrence which they treat as a new primary, and that your new treatment goes well. I find ether very useful for controlling the frogs, but sometimes the ether runs out and the whole bloomin' lot get out.

Member
Posts: 1,475
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Hi Donna,

Still here, over four years on now. Fit and well.

Herceptin is a breeze after chemo, although tiredness tends to kick in after several months of it, so don't worry if you feel better at first, as the chemo tiredness recedes, but then go back downhill as this is the herceptin tiredness kicking in. This will go after you finish herceptin

Member
Posts: 235
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Ooops, sorry....I didn't mean that everyone should get out there and focus on the good things...I mean't that I should.

Anyone who is feeling bad, should do exactly what they want - shut the curtains on the sun if they feel like it...I did.

Annie

Member
Posts: 235
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Quite late in the day and playing catch up, but I am HER2+++, ER+, Grade 3. Finished chemo on 1st April. Had 3 FEC, 3TAX (with Herceptin) and now doing just Herceptin for a year. Just starting on Arimidex (not Tamoxifen) for 5 years.

Yesterday was told that another lesion has been found, so the op planned to remove the reconstruction (which was where cancer came back) will be to remove this new lesion and send it for investigation.

Ws due to start rads in 6 weeks, but this will be changing according to what this other lesion is - which is a pain, as I planned my house move around the treatment. (Not to mention the terror I felt yesterday, on being told this latest news).

I think the thing about cancer, is that it is like controlling a box of frogs: you think everything is safely sorted and another frog jumps out and sends you chasing off to wrestle is back into the box.

It is all very tiring isn't it? The treatment is one thing, but the constant drip-feed of other bits of info that you have to get your head round takes some getting used to - and that's before deciding who/what/when to impart the info to.

Anyway, beautiful day today, so time to get out there and focus on the good stories, like Juliet.

Annie

Member
Posts: 150
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Thank you Sharon for posting and thats great news about Juliet, it is reassuring to here news like that - Thanks

Best Wishes to you both

Donna x

Member
Posts: 150
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Hi Tracey,

Hope you are doing okay?

Thanks for posting, I am not doing to bad thanks, I found FEC hard going especially with the nausea/sickness, am abit anxious about TAX as my Oncologist has advised not to go back to work yet especially as I will be starting TAX? I have days where I start to get panicky about it all, and scared of every ache and pain I get but im sure we all feel like this? Do you know if you get scanned (ct, bones etc...)anymore? I have had them done once and they showed no evidence of mets?

I am not to worried about Herceptin as the chemo nurses have said it is alot easier than chemo, obviously it can affect your heart but they said I will be closely monitored.

Best wishes to you

Donna xx

Member
Posts: 71
Registered: ‎01-01-2010

Re: Any Her2 positive grade 3 people out there?

Hello Donna,

I was one of the early posters - posting about my partner who was diagnosed in ~November 2004. She has still, fingers crossed, NED.

Good luck with the Herceptin -Juliet certainly found it the 'easist' of all the treatments to cope with.

Sharon x

TSR
Member
Posts: 581
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Hi Donna,
I am about 6 months ahead of you in treatment terms, with a very similar diagnosis. I have finished chemo (last Tax was 14th Feb), had 6 herceptin (3 with Tax, 3 without), out of a total 18. I am also having rads, and started Tamoxifen last month.
The herceptin is fine. It has few side effects, other than the main one, of stressing your heart. My latest MUGA showed some deterioration, but my onc said it was fine. The only other SE I have noticed, is it giving me a bit of an upset stomach, but that is much better without the Tax and antibiotics.
How are you coping?
Tracey
X

Member
Posts: 150
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Hi,

I know this is an old post but I was just found it and thought I would post!!

I am 34 and have been diagnosed with grade 3, HER+++, ER+, 2/22 nodes had micromets in, I have currently had 3x FEC and due 1st TAX on 27th April, I will then have 1st Herceptin with 5th TAX for 12 months and also Tamoxifen.

Are any of the ladies who originally posted on here still posting on here, just wondered how you all are?

Best Wishes

Donna xx

Member
Posts: 150
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Thanks Tracey, I do think a years herceptin is a bit harsh especially with the effect it can have on your heart.. Did all your symptoms ie shortness of breath and swollen ankles go after you stopped the herceptin, also are you on femara?

Anne x

Member
Posts: 101
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Hi
My symptoms initially were shortness of breath , it got that bad that even when i walked a couple of steps i could not breathe and also swelling of my ankles with what seemed to be fluid.
I also had regular scans om my heart and I had one done earlier so they could see what was going on and when they did my scan I was found that my LVEF fraction?? not quite sure if I have got that right was really really low and was basically told NO MORE Herceptin for me. Still I had managed 13/17, there are trials currently running to see if 6 months Herceptin works just as well as 12 months!!
I hope this is of help
Love
Tracey
xxxx

Member
Posts: 2,158
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Problem is, by having all those scans you could be exposing yourself to even more stuff like x-ray radiation and I think this is one of the reasons they are not done routinely. The oncologists have to weigh everything up.

If you are worried about symptoms, in particular symptoms of secondaries, then the Cancer Research UK website is invaluable. I revisit the info from time to time and find it very reassuring.

Nearly 4 years down the line, I no longer constantly worry about this, it does get better. It never goes away, but I've learned how to file it away in a drawer so I can manage to get on with things. I've always figured it it's going to come back in my case it will and there is little I can do about it. I've also met or known people who were still here 35 years on which I find a comfort too.

Member
Posts: 150
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

Hi all, i still think they should offer everyone scans tests etc maybe every two years or so. I realise that this would be costly but all cancer sufferers are living with a time bomb and dont know if the gastly thing is back. Maybe if we had scans etc it would let us get on with living our lives instead of the constant worry and some people dont even know what symptoms to look out for.

Member
Posts: 2,158
Registered: ‎01-05-2012

Re: Any Her2 positive grade 3 people out there?

I asked a relative of mines who is an expert in cancer and Radiotherapy (he is a Professor) about scans etc back in 2007 (I was diagnosed Grade 3 Her2+ in 2006). He told me cancer cells have to form a mass the size of the nail on your little finger before any scan will detect them, so a scan will not pick up rogue cells.

I had 2 oncology checks after I finished Herceptin, 2 weeks after I had the last treatment, then 3 months later. The last one was an extra appointment my oncologist gave me as she had referred me for some counselling and she was adamant they were not discharging me until they were satisfied my emotional well being was better; also because I had menopause issues. I was also told they were there if I had any suspicious symptoms during the remission period and to just contact my breast care nurse if I felt I had to be checked.

At the moment I just see a Breast Consultant once a year for my annual review and I am fine with that. It does get a lot better as time goes on and you are able to put things into the background a bit so you can get on with the business of living.