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Newly diagnosed HER2 positive anyone else out there old or new ..need some support

17 REPLIES 17
lavendersun
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

hiya petet
welcomebto this site
i am not very far along since diagnosis but have found everyine on
here so supportive i think you wil too.
how far along are you? do you have path report etc back yet?
take care
lavendersun
thank you to everyone else that answered me what a fab group of lovely people xxxxxxx

i
tigerpig
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hello Peter,sorry you are on this site but welcome

Guest user
Not applicable

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Best wishes Lavendersun and everyone xx
BlueRose
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hello Lavender,
I had a WLE at the end of November, another due to unclear margins two weeks later, and finally a mastectomy at the end of December - I had pre-cancerous change in the margins sround the lump.
Up until a few days ago, I thought I was Triple Negative as did my surgeon from the results of the origional core biopsy and then I got the results from the mastectomy last week and found out that I am, in fact, HER2+. So that was a bit of a shock and means another year of treatment after the chemo and rads but I am thinking that at least there is a targeted therapy for this. With Triple Negative, there is only chemo and radiotherapy and then that's it. I am looking at this (rightly or wrongly) as another thing to throw at the cancer, another chance. (Even though the prospect of more treatment does upset me.)
Good luck with everything,
Blue
tigerpig
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

How lovely to come across you on here again Dawn.
When i was 1st diagnosed in 2011 i used bc forums alot,have read a few of your postings in the past.You were always an inspiration to me the amount of time you have been on Herceptin.
I go for dose 16 of 18 on monday,got to have loading dose again,caught one of the nasty bugs going around so unable to have dose at usual time.
Ive had runny/blocked nose,achey bones and slow hair re-growth.My veins have held out,although they get very achey at times.
I returned to work around dose 6,yes some days i get so tired,but it is doable and to be honest the time has flown.
Iam now looking forward to having recon in the near future,PS wont do it till i finish Herceptin in Feb.
Hope your MX went well today Lavender
Love to all you Herceptin Ladies H x

Kittyqueen
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi Lavendersun,
Sorry Dawnhc is correct, I did have chemo first, 4 rounds of EC and and 4 rounds of Tax with the Herceptin starting with the tax xxx

samos
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

I remember when I was diagnosed as Her2+, a girl on here told me that whilst it may not be a good bc to have, it was a good bc to treat- as Herceptin works so well plus there are other drugs coming through to treat it.
I've just had my 15/18, and apart from a runny nose, I have no other se's - except I believe it's slown down the rate of my hair regrowth. I have my infusions at home, and I would thoroughly recommend the Homecare service if it's available in your area.
Sue

dawnhc
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi Lavender,

I think you are getting the hang of things ok :). I remember the days when forum stuff/internet/chat rooms was all new to me and it took some time to get the hang of how things worked! Don't worry about replying individually to each one that responds, though it is nice when people do.

The babes aren't mine LOL - much too old for that sort of thing! But they are my grandchildren and very special. They are twins born very prematurely to my daughter and her husbnad, and a miracle that they are here today now 6mths old but still only about the size of newborns.

I think when kitty says " I am only being treated with Herceptin for Early stage BC and feel very lucky that" she is responding to my comments about being on herceptin longterm for secondaries and you need to put the emphasis on "early stage BC". I am sure if she looks in again she would confirm that too. With early stage BC I think it is very rare that someone would only be on herceptin. It needs chemo first I think for herceptin to work as it should and I think one would have to at least have had chemo treatment within past 6 mths.

If you have questions you want to get your head around just ask away - I am sure there are plenty who will answer and I am happy to look in and share my years of experience with many bc treatments.


Take care and Happy New Year.

Dawn
xx

lavendersun
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Alfie73 Nice to meet you thank you so much for replying to me. Yes I have children 12 and 13. I work in a school so guess I will have to be off during chemo due to constant bugs, colds etc going around school. I miss my workmates and the kids so much. Wish life was normal again!
Calyco thats for the info. Yes I may be doing a fair bit of moaning on here. Lol !!!
Dawnhc thank you for your lovely letter and thank you for straying across from secondaries. May I ask what hair length you had before cold cap? Just trying to do some research. Are those twins your babies soooooo beautiful!!!!!

Hi Kittyqueen may I join in too please? May I ask why you are only on Herceptin and not chemo too. Are your tumors small? Sorry just delving around for info and advice.

I havent quite got the hang of this forum yet. I guess you load a post and then anyone can join in? I find it a bit complicated to then answer you all individually? I guess its like one big chat.
A friend dragged to out today to a garden centre with pets ,fish , reptiles etc. Our kids loved it and we had coffee and cake whilst the kids wandered around. Its good to do something normal as the last few weeks I could curl up in bed and stay there. I didn't want to go but it done me good. I even cleaned the bathroom when I got home!! Hubby will be impressed!!! Lol!!!
Well whilst writing this message heard a long screech outside then a big crash. Some poor teenager had crashed into the wall round our drive! Poor boy was so shaken but it will all get sorted with insurance. At least he's unhurt thats the most important thing. Not a New Year he will forget. I dont get worked up with these things any more my wall outside will get fixed.

Well as for me having a quiet NYE at home. I,m afraid celebrating 2013 doesn't feel that appealing with my MX on 4th Jan followed by the dreaded chemo. Perhaps I COULD SKIP THIS YEAR AND FAST FORWARD TO 2014 !!! lOL !!
Well wishing you all a peaceful and HEALTHY NEW YEAR>

xxxxxx
Kittyqueen
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Thank you so much Dawnhc for posting, it has so helped out things into persepctive for me. Xxx I am only being treated with Herceptin for Early stage BC and feel very lucky that I can be. I am aware that there are not a lot of stats available as yet for this treatment type. as only been done for 6 /7 years but here's hoping xxxx Onwards and upwards xxx

dawnhc
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi Lavendersun,

You asked "HER2 positive anyone else out there old or new " so I thought I would reply. I don't usually stray out of the 2ndary forum but thought when I saw your post that you might find it helpful to hear a bit of my story.

I was diagnosed in 1990 - too early for Herceptin/HER2. I had many recurrences/new tumours over the years, and indeed many chemo treatments. The problem with HER2 positive diagnosis is that it is a persistent bu**er! I am sure that if Herceptin had been around for me in those early years I would never have had all the problems that I had. I was diagnosed with secondaries in 2002 and chemos then didn't help much until my onc checked out my her2 status from the last tissue I had removed (mastectomy) and discovered it was positive. I went straight on to herceptin and it was like a miracle. I had loads of lymph nodes around my chest and neck area and they visibly shrunk to nothing within the first 10 days of starting herceptin never to return. Because I have 2ndaries I am on herceptin permanently so have been on it for almost 9 years now. So never fear an HER2 + diagnosis - since the discovery of herceptin and several other newer drugs are making all the difference. I have never had any side effects from herceptin.

As regards your hair I wouldn't do anything just yet until you know which chemo you will be having. Not all of them cause hair loss and I found for myself that using the cold cap treatment I never lost my hair on any of the chemos I had.

I hope you will find by using the forums and talking to others going through treatment will help you. It is a good place to come and talk.

Dawn
xxx

Calyco
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi there,
I had my second herceptin treatment on the 19th December. It seems to tire me out for a week or so but maybe I'll get used to it. I was oestrogen +ve so I'm taking tamoxifen too which I don't really like.
I also had shoulder length hair before chemo treatment. My hair is really fine but I had a lot of it! Everyone said get it cut before the chemo which I refused to do because I'd been growing it for a couple of years and was heartbroken at the thought of losing it. I reckon I lost about 60% of my hair. It looked a bit thin on top but having the length hid any thin patches at the sides and back! My oncologist stopped the FEC chemo treatment after 4 session. I think missing out on the last two sessions helped save my hair too! About 3 to 4 weeks into the chemo my hair was coming out at an alarming rate (to me) but the hair loss slowed down again.
I think if I had cut my hair beforehand my hair would have looked patchy and I would have shaved it off. It's difficult to know what the best thing to do. I knitted lots of hats and practised with scarves but luckily didn't have to use them. I also bought a wig through the NHS which has never been worn!
Afterwards I had about 4 inches cut off and the hairdresser cut my fringe from the back of my head so I could do a comb-over to make my hair look thicker on top. Because I kept so much hair it's difficult to see what the new growth looks like but there seem to be an alarming number of white frizzy hairs peeping through.
I've not been working throughout my treatment so far. I wouldn't have been able to cope with commuting on the Underground let alone trying to work. I'm now looking for something part-time. I think it all depends on your circumstances, what your job is, how understanding your employer is etc etc.
The chemo isn't easy but after the first few days you pick up a bit and just as you are starting to feel human again they zap you with the next treatment. Everyone reacts differently and some people sail through it and others struggle more. It goes without saying avoid anyone with colds and coughs and bugs of any kind
Don't worry about moaning. This is the best place for it! I don't always feel I can tell others how I'm feeling as I don't want to worry them. At least on the forum, you know everyone will understand what you are going through. I was talking to a neighbour yesterday and she said "Aren't you being brave". I feel there's nothing brave about it, you just have to get on with it despite how scared you are feeling inside.
Hope this is useful.
All the best Calyco

Guest user
Not applicable

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi Lavendersun
I have a very similar diagnosis to you but are further on in my treatment. i had a mastectomy in September and had 120mm of DCIS removed and within it had a 5mm invasive tumour and lots of even smaller invasive tumours. My tuour is also like yours e and pr -ve but her3+. I am in the middle of chemo at the moment and have just started herceptin the week before CHristmas. It is really scarey at the beginning and there's no doubt about it it is really rubbish but you can do it. The main thing to do is to focus on the next part of yur treatment and take it a step at a time, never google stuff as you will freak yourself out and make sure you have lots of support around you. Have you got young children? I have a 7 and a 10 year old and they are coping ok with the treatment. You will probably have one really rubbish week and then feel better for the other 2 weeks although people all react in different ways to the chemo and get different side effects. I'm not doing the cold cap but plenty do with good results. I'm off work at the moment but a lot of people do work thorugh the chemo I think it really depends what you do, Let me know any more questions you have and I'll try and answer them!!
xx
lavendersun
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi Calyco

Thank you so much for replying to me. It was lovely to hear from you.
I have just answered you hit post myself but my answer didn't come up? Not quite sure what happened there? So i,ll start again.

You are right I should just concentrate on the present with me. My mind is way way ahead planning my funeral , worried about my lovely family without me etc. Reading the " In Memory" posts completely sent me over the edge!!!

Today is a better day though still very up and down. I guess the full new is only 3 weeks ago so will take time to come to terms with it.

How are you doing? How is your treatment going? May I ask if you work and if so did you manage to continue through treatment?
Cold cap sounds good. I have thick shoulder length hair. Would it be a good idea to get a shorter crop so that the cold can get to my scalp? What did you do?

I,m not my normal self so please excuse the winging and moaning. I will improve I know it!

Thinking of you and all the very best for your future treatment.

Lavendersun xx
lavendersun
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi Calyco
Thank you so much for replying. It was lovely to hear from you.
Yes, you are right I should just focus on what is happening to me at the moment and try to stay positive though I find it really difficult.

I have some lovely friends but just don't feel sociable right now. I just want to to be left alone. Though I must admit if I do see a friend I usually enjoy it and takes my mind off things for a while at least.

I have been looking into the cold cap. I have quite thick shoulder length hair. Do you think it would be better to get a shortish crop so that the cold can really get to my head? I dont want to cut my hair short but hey if i can keep my hair i,d be thrilled!
Hope you dont mind me asking you a few questions. Do you work and if so have you been able to continue during treatment?
How is your treatment going? What stage are you at?
It feels weird that apart from mentally I feel so well. I just cant imagine feeling poorly from chemo etc but of course we have no choice.
Sorry ,its early days for me and not quite my normal self at mo!
Wishing you all the very best with your treatments.
Lavendersun xx
Calyco
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi Lavendersun,
Hope you are feeling a bit better than yesterday.
I had a lumpectomy in March and pre-operation everything was very positive. I was devastated to find out I was HER2+ after the operation. I too find it really scary but I think you should really take comfort in what your oncologist tells you. I'm sure he wouldn't say your outlook is good if it wasn't.
You will have good days and bad days and hopefully you have some wonderful friends and family who will help you through this.
I hope your operation goes ok on the 4th. If you get a chance to try a cold cap when you have the chemo, give it a go. I tried it and didn't lose all my hair which I was dreading.
I know it's not easy but try not to worry about what could happen and focus on what is happening. All the treatment is to try to create a positive outcome for you. I know it's difficult to stay positive all the time but remember they wouldn't be giving you all the drugs if they didn't think they work in the majority of cases.
I have found this website a great comfort at times and it is fantastic that you can share experiences and realise that you are not alone.
All the best,
Calyco xxx

Louise_BCC
Member

Re: Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi there lavendersun

Firstly, welcome to the discussion forums, I'm sure you'll find them a great source of information and support.

It's perfectly normal to feel anxious and emotional but if you feel it might help to discuss things with someone in confidence, do call the Helpline. They can offer support and information about other sources of help and advice or just be a listening ear if you need to offload.

They're on 0808 800 6000 and are open weekdays 9-5 and Saturday 10-2.

Very kind regards.

Louise, Facilitator

lavendersun
Member

Newly diagnosed HER2 positive anyone else out there old or new ..need some support

Hi there
I was diagnosed on the 4th December with large area of DCIS within it 3 small areas of IDC 6mm, 3.5mm and 3mm.
I am pr and er negative but her2 positive!!!!

Had a lumpectomy and sentinal node biopsy this month. Luckily 1st node had a few cell changes though so few cant count and they class this as a negative node result. All other 6 nodes clear.
I am having a reconstructive mastectomy on the 4th Jan. followed by chemo (dont know the plan yet ) and herceptin.

The main thing that worries me is the her2 positive status I just can't get it out of my mind!!!!!The oncologist that I saw briefly the other day said my prognosis was good but I just cant believe him all I kept thinking was but i,m her2 pos.!!!
I feel like my world has been turned upside down and my life will never be the same again. I have lost a stone and a half through stress and not eating. I,m just so shocked and can't get over it! I have children and just keep imagining them without their Mum. Its heartbreaking!! Sorry, i,m just so emotional right now and just can't get a grip!

Would be great to speak to anyone else just diagnosed or anyone old or new with Her2pos.

Love this site but even reading tributes " In memory of.." sent me over the edge. What a wimp I feel not strong at all.

Thank you.

Lavendersun