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Any Her2 positive grade 3 people out there?

Member

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

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

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

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.

Member

Re: Any Her2 positive grade 3 people out there?

Hi Annabel

I totally agree, I wanted to know how they could be happy to stop treatment of herceptin without doing some sort of scan/check/test anything to see if there was any evidence of the cancer at all.

Hello mnc just to let you know I didnt experience any heart problems on herceptin at all, in fact my reading improved on my second test so everyone reacts differently. I would look at the positives of this drug rather than the negatives.

xx

Member

Re: Any Her2 positive grade 3 people out there?

Hi

I had a 4 month break after 13 Herceptins from June to September 2009 due to the heart LVEF reading having dropped to 42%. I was not experiencing any other symptoms of heart failure such as shortage of breath and fluid retention. I was advised by the cardio ologist not to have any more herceptin but because of my grade 3 cancer with lymph node involvement I was determined to finish the course and luckily my oncologist was in agreement. My heart function rose to 59% without medication and I resumed the Herceptin and finished the 17th herceptin on Xmas Eve 2009. I appreciate not everyone has the opportunity to complete the full course and as mentioned in previous posts, trials are now taking place to see if six months of herceptin is sufficient as opposed to a years treatment. My oncologist is of the opinion that six months is sufficient but because he believes mental wellbeing to be as equally important as body wellbeing I was able to complete my course. At the moment I am classed as No Evidence of Disease but remain ever vigilant for any indication that the cancer may have returned.

Lyn

mnc
Member

Re: Any Her2 positive grade 3 people out there?

Hi Tracey and everyone

I'm at the lister hosp in Stevenage at the moment waiting for my 3rd fec. I'm meant to be having taxotere in three weeks time along with my first herceptin.

I'm worried as all I read about Herceptin is heart failure. Tracey, what were the symptoms and are you fully recovered from the effects of herceptin?

I'm so glad you have finished your treatment and send love to you and everyone.

xxxx

Member

Re: Any Her2 positive grade 3 people out there?

Hi
I was initially diagnosed Feb 06. 41 yrs. IDC Grade 3, Stage 3, 3cm Tumor ER 7/8 PR -. Herceptin ++++. 6 Lymph nodes with Cancer after full node clearance and full Radical Mastectomy. 1 node + sentinel node superclavicle.
4 x Epirubicin
4 x CMf.
13/17 Herceltin. Was not allowed any more as I went into heart failure!!
20 Rads.
I have just posted in after treatment has finished. Went to Onc yesterday and he does not wish to see me for 12 months .... I can tell you I came out of his office on a high..
My prognosis at the time was not good if you looked at the NPI....
everyone is an indvidual and we all deal differently with each stage of our journey
But yes there is light at the end of the tunnel......
If you have any questions pls feel free to pm me and I will get back to you....
Love to you all
Tracey
xxx

Member

Re: Any Her2 positive grade 3 people out there?

Hi Anne.

The specialist nurse at our Herceptin clinic appointment said there have been trials that have shown that one year of Herceptin treatment is just as effective as two years of treatment in reducing the risk of recurrence in early breast cancer. (Apparently there is a trial going ahead to see whether six months would also be as effective.)

When I asked some time ago (at the beginning of Janet's six months of chemo) about whether she will get scans, the answer was basically that, by the time a tumour would show up on a scan, there would probably already be other noticeable symptoms, and at this stage any escaped cancer cells would not be detectable in a scan.

I have seen no published evidence to confirm these views, but putting these two points together, it all does seem to make sense.

Member

Re: Any Her2 positive grade 3 people out there?

Hi all. i just cant understand why when herceptin course is finished they just assume everything is clear/ without doing further tests.. or is it just me?

Member

Re: Any Her2 positive grade 3 people out there?

Hello All

Yes me too, I am part of this group Her2+ grade 3. I was dx June 08 which was followed with WLE, 3 x Fec, 3 x Tax, 25 rads and then 18 Herceptin. I didn't still don't fully understand this Her 2+ but was pleased when I heard I would be receiving Herceptin. I must admit the only thing I had heard of it was on the news that there were ladies in this country fighting for the right to be given this drug Herceptin, so I actually felt lucky to be receiving it!!

I received my last Herceptin December 09 and I am now treatment free, which is great and I do try to put it to the back of my mind but it still rears its ugly little head and probably always will and I must admit there are days when I am down and worried when I think shouldnt us girls who are Her2+ be given this for life to stop it coming back. I know this isn't going to happen but I was willing to throw anything at this thing to help get rid of it and prevent it from coming back.

Good luck and best wishes to you all.
XXX

Member

Re: Any Her2 positive grade 3 people out there?

just wondered how everyone is getting on. I am due to have herceptin No 8 on Monday!
x

Member

Re: Any Her2 positive grade 3 people out there?

Hiya - I had a gr3, er-, pr-, HER3+ tumour, 1.8 cm. Had a Sentinal Node Biopsy which was clear so no positive nodes and a lumpectomy in September with clear margins. Chemo has just finished last week and radiotherapy starts at the end of April with Herceptin starting at the end of that.

No idea what the HER+ really means for me but like the other girls I feel that at least this is something that can be done about it so I will press on with the advice/treatment plan that the onc has given me. Hate the thought of all the treatment but really want to live to be a very old cranky old woman !

Good luck everyone xx

Member

Re: Any Her2 positive grade 3 people out there?

Just to let you know, my sons girlfriend is in labour went in this morn, just waiting for news. Will let you all know

Anne x

Member

Re: Any Her2 positive grade 3 people out there?

Hi there, i really dont know whether its strongly pos or not, result just says positive and thats from a biopsy. They say they can tell lots with a biopsy so i have to go with the positive result for now. Suppose they will no more when they do the op.

Thanks for your good wishes for tomorrow Lynn, you will know what im going through the now.

This is a good thread for everyone who is her2+ to stay in touch.

regards Anne x

Member

Re: Any Her2 positive grade 3 people out there?

Hi Anne

I was grade 3 er+ pr+ her++ but i didnt have chemo or herceptin.

When you get your her2 result it is scored on a 1-3, 1 being neg and 3 being pos. I was a 2 and some hospitals call that her2 negative. However, in my hosp they then do a FISH test if you are a 2. FISH neg does not get offered herceptin but FISH positive does.

I was fish positive so I was offered herceptin. However, my onc said they could not give it without chemo, and the benefit of chemo AND herceptin together, for me, was 3% less chance of it coming back in 2 years. I was advised that the risks outweighed the benefits as I had a small lump, neg nodes, and being 8/8 for both hormones meant I was being put on zoladex and tamox anyway. My onc said if it were his wife with my results he wouldnt want her to have it.

I went with his advice and have just reached my 2 years clear.

I think herceptin benefits more if you are a +++ rather than a ++. Or perhaps node neg her2 are less agressive.....?

Member

Re: Any Her2 positive grade 3 people out there?

Hi Anne
I am grade 3 her2 er+ pr+ my onc. congratulated me on hitting the jackpot!! I have had wle and 1st chemo.Would be nice to compare notes. x

Member

Re: Any Her2 positive grade 3 people out there?

Hi Anne - i'm still waiting on final confirmation of Her2 status - been given a preliminary negative at the moment. thought i's bump it up again for you - there must be loads. Thinking of you for tomorrow.

Lynn

Member

Re: Any Her2 positive grade 3 people out there?

just bumping this, havnt heard anything for a while xx
anyone else with this diagnoses?
annex

mnc
Member

Re: Any Her2 positive grade 3 people out there?

Hi everyone

Just thought I'd update you all. Still feeling a bit negative as I want to live another 30 years and my husband says I will live 30 years but feel I won't make it.

I had my second chemo on 26th February through my Port which was great apart from the fact that the nurse who administered my FEC pressed so hard that I was in pain and by the end of the week, I ended up in hospital because of the pain and breathlessness which my oncologist thought may be due to a Pulmonary Embolism.

I was at the A and E last night and given a blood thinning injection and because my white count cell count (despite having a blood boosting injection the day after Chemo) has dropped from 15 to 1.4 the nurses gave me a face mask to wear to prevent my catching anything from them.

I had another blood thinning injection today and have another tomorrow. Then on Monday they will give me a CT scan just to confirm that there is no blood clot.

I had an xray yesterday afternoon to ensure my port hadn't moved and I will say if you are offered a port - take it take it. It is fantastic no pain in the hand when chemo goes in or when bloods are taken as they can also be taken from the port.

One thing that is worry be again! is that my oncologist said yesterday that I shouldn't be going to work when on Chemotherapy. I really need to work as we need the money but have actually been signed off for a month as my philbitis is so painful.

My lovely sister has offered a room at her house while I have all my treatment of chemotherapy, radiotherapy and Herceptin. She doesn't work and my brother and mum are in Yorkshire as well. My sister will take me to all my treatments and be on call when I end up in hospital like I did this weekend.

There is only one problem, my husband who takes me to chemo doesn't want me to go as he doesn't like being on his own but I want to go.

He is a MD of a company and has complained about the time spent at the hospital, doesn't sleep well because I don't sleep well sometimes and fidgit at night. Me going to my sister's would relieve him of all the hospital trips and allow him now to be stressed and run the company without the days spent ferrying me back and forth.

I am going to post the bit about spending my chemo/radio/herceptin time with my sister in a new post in case nobody responds to this.

Hope everyone is well and surviving the horrid Chemo which actually is not that bad. Two perhaps three days of queezy feeling, no hair, dry skin, rough mouth, swollen ankles - that's about it - I can certainly cope with that.

Love
xxxx