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
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
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
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
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.
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
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!
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
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.
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
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
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
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.
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
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.
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
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
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
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.
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
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
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