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HER2positive !!!!!!!

37 REPLIES 37
Bibi44
Member

Re: HER2positive !!!!!!!

Hi Tina If it's any help, the Herceptin starts with the 1st T, or P if you're having weeklies), so usually 4th cycle. If you plan to sign up to chemo then withdraw after 1 treatment & just have H (which I don't recommend by the way, but I know you are thinking that might work for you) you will need to talk them into T/P only or T-FEC. I just wonder if you only have one chemo if u will get all the downside, incl hair falling out, & none of the upside (getting rid of any stray cancer cells). It's your decision though. x
Guest user
Not applicable

Re: HER2positive !!!!!!!

Ok, NICE guidelines,  ive read them and re read them. I presume  these  are the  guidelines  that are followed.  No where  can i see that it specifies how many  chemo cycles  are necessary  before  herceptin is allowed. Xx

SusieQ
Member

Re: HER2positive !!!!!!!

Hi Aliorb, congrats on your amazing weight loss. I lost 3 stone last year (my son got married end of 2015). 

I was diagnosed in Feb and I'm also having chemo first (2 down 4 to go). I find that my 2nd/3rd week after chemo I eat anything and everything, but I don't appear to be gaining weight coz the first week after chemo I don't tend to snack or eat as much - probably one helps level out the other.

all the very best for the journey ahead, love and hugs xx

 

 

PeggyCat
Community Champion

Re: HER2positive !!!!!!!

I love your "short diversion" metaphor Bibi - I will try to keep that in mind. Smiley Happy

 

xx

Lovewine
Member

Re: HER2positive !!!!!!!

Aliorb, good luck with your treatment - I also had chemo before surgery and felt very worried as didn't know a lot of ladies who had this way around! When I joined the April 2014 chemo thread there were about 12 ladies posting on it- 5 of us had chemo first! It's very helpful joining a chemo thread as you can support each other as going through treatment- 5 of us have become friends and met up last summer and are doing the same this July too!
All the very best to you . X
Bibi44
Member

Re: HER2positive !!!!!!!

Aliorb well done on your weight loss. That is some achievement missus. You will get through this with an attitude like that. Well done. There are a few trying days, but on FEC most of us felt pretty ok weeks 2 & 3, so it won't be hard the whole time.  I think it's easier to put up with if you know there are respites coming in between the difficult bits.  Also putting on weight during this process is not automatic.  I am sure you're keen to avoid that after all your efforts. You will need to keep an eye on what you eat when on steroids though, because some people had the terrible munchies.

 

Peggycat lovely story. An older lady introduced herself to me in the golf club car park last week.  She had heard my situation & told me she had it in both sides 28 years ago & completely fine since.  I think we all look at the percentages for not ok, rather than the people for whom this is just a short diversion from the rest of their lives.  Glass half full/half empty thing again. xx

SusieQ
Member

Re: HER2positive !!!!!!!

Hi Lovewine, thank you very much for your post. Every additional positive comment gives me more strength to fight on. 

 

Best wishes and hugs to everyone. Xx

 

Aliorb
Member

Re: HER2positive !!!!!!!

This is my first post but felt I should say hi as I too got my ex on 5th April and am also having chemo (well will be) before surgery. this seems to be the abnormal way round and even all the leaflets I was given this is not even mentioned our way round. 

 

I am am daunted by the length of journey ahead but I having  got to a healthy BMI 2 weeks before my diagnosis when back in Jan 15 that was an impossible aim  8 stone later I now know that I can achieve and succeed in long term challenges. 

 

See you around partner.

 

ali

Guest user
Not applicable

Re: HER2positive !!!!!!!

Hi
Can I say ill just have 1 round then herceptin?
Xxx
Rainbow
Member

Re: HER2positive !!!!!!!

Hi Tina,

 

my Onc told me that no one in the UK will prescribe herceptin without chemo for primary breast cancer because there are no trials published which measure recurrence rates with treatment of herceptin alone. I found that oddly comforting because I wouldn't want to be the first to try it, so it made it easier to accept that chemo then herceptin was the best course of action for me.

 

I did get the impression from reading on the net that some Oncs think herceptin without chemo might be suitable and that some people have stopped after one chemo, allowing them to go on to herceptin. My attitude was that in for a penny, in for a pound; lets chuck whatever they've got at this BC to stop it coming back. However, I only had to have 4 EC chemos and I know ladies out there have a lot more to put up with on FEC-T.

 

All the best, X

On a diversion
Member

Re: HER2positive !!!!!!!

Yes it's made me feel better too, thank you 🙂

Guest user
Not applicable

Re: HER2positive !!!!!!!

Sorry to ask but has anyone read about herceptin without chemotherapy? X
LMB212
Member

Re: HER2positive !!!!!!!

Thanks for all the positive comments that's made me feel good. I had Grade 3 HER 2+ surgery took the cancer away now awaiting appointment for chemo.
Lou x
Lovewine
Member

Re: HER2positive !!!!!!!

Hi Ladies, what positive comments- how uplifting for us HER + ladies to read them too! A friend of mine had aggressive grade 3 Her+ diagnosis aged 38 , she didnt have Herceptin as it was not available then(14 years ago), she is now seen her 2 children finish university and start careers and she remains very fit and healthy( long may it continue!), she had WLE, chemo and rads. 

Hope its another boost for you susieq, it certainly is for me - my last herceptin was last september!

SusieQ
Member

Re: HER2positive !!!!!!!

Hi Bibbi and Ruth, thank you so so much for posting these positive comments. I keep re reading them they have been such a boost. thank you again for sharing.

 

Good luck everyone, love and hugs xx

 

PeggyCat
Community Champion

Re: HER2positive !!!!!!!

Hi SusieQ,

 

My BC was not HER2+ but thought I'd share the following:

 

I was at a funeral of an in-law yesterday and was approached by a lady there who commented on my headwear - I'm almost 2.5 months post final chemo and hair is growning quickly but I'm waiting for it to be a bit more glam before I reveal it to the world! Anyway, It turns out she had just celebrated her 10th anniversary free of her HER2+ BC. She was one of the first people to get Herceptin as a standard part of her treatment. Despite the fact that it was her mother's funeral and a very sad day for her she was so full of life and encouragement. She's had few lasting issues post-chemo, never had any lymphedema problems and looked fantastic. 

 

It really gave me a boost talking to her and I hope by sharing this it will give you some encouragement too. I hope things are going well with your treatment. 

 

Ruth xx

Bibi44
Member

Re: HER2positive !!!!!!!

SusieQ I was devastated by grade 3/HER2+ diagnosis & read depressing things on the net until I came across a very recent presentation by a leading cancer specialist in which he says 'the era of poorer outcomes for HER2+ BC can now be viewed to be well & truly over'. Turns out all the other articles were a few years old & I hadn't noticed. It went in to say that Herceptin has revolutionised our diagnosis. I am almost at the anniversary of my diagnosis now & went through FEC-T (I actually found the T easier than FEC, as did JenJen I believe & a few others, so don't panic about that. Taxanes are also 3rd generation chemo, so the most effective thing they have. They get the big guns out for early BC because they are aiming to cure it if at all possible). I have one more upside for you. A lot of women feel very anxious when chemo & radio finish. They feel it could come back once their docs are no longer actively fighting it. We Herceptin ladies don't need to feel that because we know we are still being protected by Herceptin for another 7 months. I also view the tamoxifen as continuing the fight/protecting me from recurrence rather than as some blo*dy awful thing that has been forced on me for 10 years. I know a couple if ladies in real life who had very aggressive/HER2+ tumours & they are still fine 8-9 years on. Let's hope we all join them. I do wish you all the very best with the rest of your treatment. xx
SusieQ
Member

Re: HER2positive !!!!!!!

Hi Robin, I've had 2 cycles FEC one to go, then 3 x FEC-T. Its all been a bit of a roller coaster these last few months. Today I got my wig which has surprised me how positive I'm beginning to feel now.  I have found this site invaluable with all ladies positive and encouraging comments.  Good luck with your treatment  WE WILL BEAT THIS!! Take care and big hugs xx

robin_s
Member

Re: HER2positive !!!!!!!

Hi SusieQ,

 

Just came across you thread as I've got back from the hospital today. I feel as though I'm in a similar position as yourself. I've was diagnosed on 5th April with grade 3 invasive  cancer. At only 33 and having seen my mum go through it all 6years ago (breast cancer too) I was totally beside myself. Having come round to it and knowing that it's totally treatable, finding out the results of certain tests is like a step back sometimes. The info can be overwhelming, a lot to take in and scary. I've also been told this week that its HER2+ and some lymph nodes are affected. I just wish they could cut it out and be done with. But true, as you say ignorance is bliss and sometimes I have to be just so I don't send myself mad! Being at work (office based) has been a massive help, it's brought normality and kept my mind off of it at times. Reading all these lovely ladies' comments though has also been helpful. I too has been told that I will have to take FEC-T, 3 courses of each before surgery. Then go on Herceptin and Tamoxifen. So daunting but I kind of can't wait to get the ball rolling

 

xx

SusieQ
Member

Re: HER2positive !!!!!!!

Hi Helen, sorry I some how missed your post and apologise for not replying earlier.  Fingers crossed for Monday - waiting for results is just the worst I find. I've had a call about the PICC line with a bit of luck shld have appointment soon along with the CT scan. Love to stay in touch and 'swap' notes. Don't suppose you're in the Herts/Beds area. Xx

SusieQ
Member

Re: HER2positive !!!!!!!

Hi Lovewine, it's so encouraging that ladies take the time and trouble to write positive feedback. These last few weeks have been a complete bag of emotions, one minute I want to know everything and next I'm like an ostrich! I have found work difficult (only a few of my colleagues know) and I found I want to hide away from others.  As you can see I'm still all over the place but so encouraged but find I'm having more positive thoughts. Thanks to you and all the other ladies. 

SusieQ
Member

Re: HER2positive !!!!!!!

Hi Lovewine, it's so encouraging that ladies take the time and trouble to write positive feedback. These last few weeks have been a complete bag of emotions, one minute I want to know everything and next I'm like an ostrich! I have found work difficult (only a few of my colleagues know) and I found I want to hide away from others.  As you can see I'm still all over the place but so encouraged but find I'm having more positive thoughts. Thanks to you and all the other ladies. Xx

RoadRunner
Member

Re: HER2positive !!!!!!!

Hi Loolyboo,

 

Glad to help with a bit of cheer!  I remember when I was first diagnosed, looking for others with a similar diagnosis who were years on, to give me hope.  I googled a lot and read a lot of research, both into my chemo regime and herceptin, looking for good survival statistics.

 

Re my mastectomy - I had that first, a WLE was never an option for me.  However,the research says that a WLE and radiotherapy is just as good as a mastectomy (if it is suitable for you), but I am aware that for some, like yourself, they just want a mastectomy anyway for peace of mind. 

Lovewine
Member

Re: HER2positive !!!!!!!

Hi Susie, 

 As the other ladies have said- try not to be too alarmed at the Her2 + diagnosis, herceptin was described by my BCN as a wonder drug. I started treatment 2 years ago this month, i had chemo before surgery which was the same as you FEC-T, then a mammoplasty, followed by 15 rads and a year of herceptin which was given every 3 weeks in my leg by injection at home by lovely nurse, it was always fitted around my work commitments and the nurse would ring the night before and arrange a time to suit me, this is done in a lot more areas now and saves you going into the chemo unit and also frees up space there too! ( in the NHS), although the nurses who did it worked for a private company which the NHS contracts out too.

You will feel much more in control when your treatment gets under way, it is daunting but doable, i am self employed and worked through my chemo and rads etc, i found keeping " normal" really helped me, i did work shorter hours, everyone is different though.

i wish you all the best, this forum is such a support and help, particularly if you join a thread for your chemo.

 

Good luck 💐x

SusieQ
Member

Re: HER2positive !!!!!!!

Hi Jen, so nice of you to reply in such a positive manner. I have other positive replies which have given me more hope. It's too early to say I've turned the positive corner but the replies I'm getting are priceless to me. Thank you xx

JenJen
Member

Re: HER2positive !!!!!!!

Hi Susie

I had a very large 7-8cm lump plus it had a friend in my lymph nodes and im Her2+ ive had 3xEC and up to now 8 of 12 paclitaxel plus 3 of my 18 herceptin, my lump has shrunk loads I cant even feel it and my onc and surgeon are both positive that after chemo a mastectomy, full lymph node clearance and herceptin for a year they will have got the b**ger . I like you I was dreading my CT scan and I cant tell you to worry but I can say with how big my lump was and even with the one in my nodes my scan was clear

My oncologist used the word melt and wonder drug about herceptin and it was true since starting herceptin in Jan my lump just shrank loads faster and a whole year extra of it should mop up anything else tiny as it will be do with yours x

as Jobey says take one step at a time at the mo eacg test, each result dont think ahead and dont worry about a result till you have to x easier said than done but honestly once you get into chemo/treatment it all seems a bit easier because you are doing something positive to get rid of it

Love and hugs

Jen x
SusieQ
Member

Re: HER2positive !!!!!!!

Thanks Ruby. I've given myself stiff talking to. Fingers crossed. Xx

SusieQ
Member

Re: HER2positive !!!!!!!

Hi Roadrunner, you've given me a well needed boost! It was great to read all your positive comments - you're the first person I ve had contact with who had the same diagnosis. Many thanks x

helen1971
Member

Re: HER2positive !!!!!!!

Hi Susie. I was diagnosed grade 3 invasive ductal carcinoma and DCIS plus HER2+ on 21st Jan. Had WLE and SNB on 17th Feb and go back on Monday for results. Hoping for clear margins and lymph nodes all clear. I will then start chemo followed by rads and herceptin like you. Will be good to be able to chat to someone who's at a similar stage in the journey to me (if that's OK with you). Helen xx
Loolyboo
Member

Re: HER2positive !!!!!!!

Hi Ruby1
Thank you for your reply, I was destined to log onto this site today and read these posts 😊
Loolyboo xxx
Loolyboo
Member

Re: HER2positive !!!!!!!

Hi RoadRunner
I have just read your update here and it has given me a boost of well needed positiveness! 🙂
I was diagnosed on 13th Jan this year HER2 positive, had WLE 3cm tumour & lymph nodes removed 0/11 just 4wks ago, recovered very well from the op.
Will start chemo next week after my appt with oncologist tomorrow, followed by herceptin & radiotherapy.
I'm just wondering did you have a WLE before your treatments followed by a mastectomy?
I only ask because I am desperate to have a mastectomy even though I had a WLE with clear margins - don't think I could live without great levels of anxiety knowing that it could reoccur in the same breast 😞
Thank you for listening! 🙂
Loolyboo xxx
Ruby1
Member

Re: HER2positive !!!!!!!

Hi Loolyboo,
Sorry to hear this news about you, and I understand about not being able to wait for the chemo to start. I did have Herceptin, like RoadRunner who has just posted. I think she and I were diagnosed the same year. Herceptin is absolutely fine, it was just a pain having to go to the hospital every 3 weeks for the 18 sessions, but actually it really did seem to fly by. Big hugs xxx

RoadRunner
Member

Re: HER2positive !!!!!!!

Hi Susie,

 

Please don't worry about being HER2+.  It means there is an extra category of drugs in your arsenal to fight the cancer.  Although HER2+ cancer is more agressive, research has shown that if you have a course of herceptin then your chances of the cancer returning are no worse than for someone who isn't HER2+.  So the main issue is just the extra treatment, so it's that much longer before you can move on.  It has few side effects - it's not like chemo.  Be aware that you can get quite tired on it after several months, but this goes away afterwards. 

 

To cheer you up - I was diagnosed in 2007, grade three, in lymph nodes, had herceptin throughout 2008.  Today, nine years on (in fact I have only just realised, writing this, that I have been cancer free for nine years - yesterday was the anniversary of my mx and I hadn't even given it a thought) I am fit and well.  The only other person I know who has had herceptin (know personally, rather than through forums like this, and knew before diagnosis) was diagnosed two years before me, was one of the earliest women to get herceptin for primary cancer (prior to that it was a treatment for secondary cancer only) and is also fit and well today.  I think we are really lucky to have had herceptin.  I have watched my children go from all being at secondary school, to seeing two of them graduate and the youngest turn 21.

Loolyboo
Member

Re: HER2positive !!!!!!!

Hi Ruby1
I have also been diagnosed with breast cancer HER2 positive and due to start chemo next week, can't come sooner (never thought I'd say that!) - can I just ask, were you treated with herceptin too?
Loolyboo xxx
Ruby1
Member

Re: HER2positive !!!!!!!

Hi Susie,

 

I had HER2 positive breast cancer 8 1/2 years ago.  Had the same chemo as you, which did the trick really well.  The beginning is always really hard whilst you're in limbo and before you start treatment.  I just had the attitude, which I think a lot of ladies have, you just have to get on with it - so you do.  I also buried my head in the sand a bit for a while and nothing wrong with that.  Bigs hugs xxx

SusieQ
Member

Re: HER2positive !!!!!!!

Thanks Jo for getting in touch and your kind words x

Jobey68
Member

Re: HER2positive !!!!!!!

Susie you are allowed to feel angry at the world, just when you think you have your head around what's happening to you something else is thrown in! You will calm down but you have to go through the emotions a diagnosis brings with it so don't be hard on yourself, try not to allow yourself to think too far ahead, break it down in to stages and deal with one at a time , it's the way most of us get through this, it's far to over whelming otherwise. You will find masses of support here and if you look on the chemo thread the lovely ladies will be able to answer any questions and hopefully reassure you that you will deal with this! Xx Jo 

SusieQ
Member

HER2positive !!!!!!!

two weeks ago biopsy confirmed cancer and had already spread to lymphs. Appt with oncology to discuss treatment. Wasn't expecting to find out that they were still waiting for one test result. Anyway appt was all very positive (still didn't know last result) I came away feeling quite positive just waiting for a date for ct scan and chemo start. My world took another blow they phoned after we got home result in HER2 positive! I went into meltdown again. treatment wasFEC now FEC-T. I've decided I don't want to know results of ct scan - don't think I can take anymore, so I'll continue in ignorant bliss.....hopefully. Don't think I'll ever feel like 'me' again. I know I'm going to have to give myself a good talking to and try and get off this 'pity potty'. Just so angry at the mo