Thank u.
I did 7yrs on the stuff. Letrozole did not agree with me felt awful. Moved to Examastane and things settled. Just by year 7/10 I could no longer function properly mentally……found my self staring blankly at standard reports I was trying to write. So stopped at that point.
So definately worth switching to see if u manage better. Fingers crossed for you. 
Hi everyone. Long time no post again. As i find it better for me mentally not to come on here too much.
I just wanted to ask if anyone is claiming pip for bC? I got awarded it for 2 years and i know it is coming up to the 2 year mark end of this year.
As anyone got it beyond the 2 year mark ? I still have long lingering side effects like pain.. brain fog.. pure exhaustion and lets not forget the mental side of things. I just cant see why i would not get it tbf.. as there is fowk out there that gets it and they not been through what we have. Thanks jemma 
Im still on bone infusions and hormonal medication which is causing more side effects x
Sorry can’t help they turned me down from the off. But yes the mental cant think straight anymore & exhaustion is real. Be good if your oncologist would support with a medical statement or gp? about the effects.
Wishing you lots of good luck and sucess. 
Aw really? That sucks i do have a little one too to look after so.i wonder if that went in my.favour.
You should have totally disputed it! There is people getting it with nothing up with them. But thanks. We shall see.x
Deffo get back on to them and ask for an extension. This shit doesn’t just magically go away and nor should the financial help. If you get no joy with the PIP people who I have found to be extremely helpful, then go to the Citizen’s Advice Bureau or to MacMillan. I hope you manage to get an extension. xxx
Hi all, hope everyone is doing as well as you can be wherever you are on your journey! I’m about to start another phase of mine, Zolendronic infusions start Thursday, six monthly, for three years. Very nervous about them, although oncologist tried to reassure me that after having chemo, this will be a breeze! Watch this space…
Defo a breeze! The first one i felt a bit.poorly like i had a cold virus but after 1st i was fine and its nothing compared to chemo so no need to worry!
And thanks for advice on pip.. i just cant see how i would not get it again tbf. It runs out December i think! X
@jeml I was also advised to apply for PIP but got turned down flat. However, I was able to work throughout as it turns out, so wouldn’t have needed it. I think it will pay to really put your case across in case they want to find a way to stop making payments.
@sassy3 I also felt rough the day after my first zoledronic acid but all the others have been absolutely fine. I no longer get any side effects from it.
Hi everyone. I thought I’d pop on and say hello to everyone again. I’m still on weekly herceptin injections and am now on tamoxifen. Nice to see the group is still going and to read your stories. X
How’s the Herceptin going for you? I start mine soon. x
The injection is fine. I have tiredness but not sure if that’s because of herceptin or because of tamoxifen. I have my next heart scan soon so hoping I’m given the all clear to finish the plan. How are you getting on?
Hi @cass2 I’m doing fine thanks. I haven’t started herceptin yet, just had onco appt yesterday. I’m guessing I will start in the next couple of weeks. I have my heart scan tomorrow.
Good luck with your scan and I hope you get the all clear. xx
Hi everyone, I’m new to the HER2+ group so wanted to say hello 
I was given a provisional diagnosis of breast cancer at my clinic appt 2 weeks but got my biopsy results yesterday to say I’m G3 triple positive with spread to nodes. The plan at the moment is 6 rounds of chemo followed by (hopefully) a lumpectomy and full node clearance. The surgeon and nurses were lovely and positive, lots of mentions of ‘treatable’ and ‘curative’ so I left the appointment feeling really great about everything. Of course, now I’ve had time to sleep on it and my appointments for CT and MRI scans have come through and it’s occurred to me that we dont have the whole picture yet. As well as my armpit I have a swollen node in my neck. I’ve had all kinds of aches and pains recently, particularly in my back and right shoulder so naturally my mind has gone to the possibility of spread. The surgeon did say he wouldnt expect that but I’ve read how aggressive cancers can be in younger women (I’m 37) plus the higher grade so I’m preparing myself for the worst. It just feels like one hurdle after another! I generally do feel really positive about it all, but these little niggles keep creeping in. Anyway, sorry for the brain dump, I just always feel better after I get these things out of my head. Hope everyone is doing well, I don’t yet understand a lot of the medications you’re all talking about but I’m sure I will soon enough!
Hiya @rh88 I’m so sorry you’ve had to join this club. You’re bound to get the heebie jeebies it is only natural. Remember cancer teams don’t band around the words ‘curative’ and ‘treatable’ with gay abandon, so if they see it as this, then you can trust them.
Of course there are curved balls, unknowns, new hurdles that crop up, but oncologists have a series of plans from A-Z to turn to. We had several plot twists on my chemo trip, but they got me there in the end.
Uncertainty, anxiety and fear can linger. There is counselling you can get to help if you talk to your BCN and also the ‘Someone Like Me’ service here on this forum is absolutely fantastic. You will get paired up with someone who’s had a similar cancer experience to you, and they are great at reassuring. Deffo give that a look, I found it fantastic.
And of course you have us. We’re here all the time. Often in those sleepless moments when the demons roar, there is someone awake to chat to.
We’ve got your back. xxx
@rh88 Hello and welcome to the club nobody wants to join! Hope you find our forum a friendly port of call!
Hello @cass2 How lovely to hear from you! It’s always good when someone checks back in and we get to hear how they’re doing. I was remarking to my husband when we were at a wedding the weekend before last, that I don’t have the stamina that I used to. I feel good pretty much every day now but I get tired earlier than before. Who knows if that is age, being post-menopausal, as a result of all the treatment or a combination of it all? @Jaygo I feel it only fair to warn you that the Phesgo (Herceptin) gave me the galloping trots and I could never be too far away from a toilet. Many were the times I had to stop still in the middle of the aisle at Morrisons, clench my cheeks and then walk with small and halting steps to the nearest lavatory. Good luck to both of you with the heart scans.
Hello and welcome to you @rh88 Dump away, my dear - dump away!! Those creeping doubts are horrible, aren’t they. No matter how hard we try, they constantly niggle away at us and every ache and pain can strike fear into us. Try to hold onto the fact that your team sounded genuinely positive and confident. They see breast cancer every single day, and they are very careful with words like “curative” and “treatable”. The waiting for scans time is the toughest part by far. For now, try not to jump ahead of information you don’t yet have. Looking back I fought many mental battles that I didn’t need to have. If you can, have a read back over this thread, there are loads of positive stories and so much will resonate with you. And honestly, the fact you still feel generally positive underneath all the fear is a really good sign of your strength. Keep posting and asking questions — you’ll pick up all the medication names and acronyms quicker than you think! Sending you a big hug for the waiting period because it really is the toughest bit for most of us. 
@rh88 welcome, couldn’t have put it better than @Jaygo and @sassy3 . As they say stick with good information sources like BCN, McMillan, Cancer Research and nhs website as many things you google are out of date or don’t have a solid factual base and just scare us silly. There are triple positive ladies on here. Take it a day at a time. Good luck with the first set of chemo.
Now I’m off to pack for a few days in North Yorkshire, what better way to celebrate end of herceptin than let my crazy daughter take me exploring underground. There is life after…..
@salbert thanks for the warning. Ahh the gift that keeps on giving eh?! I chuckled when I read the rest of your post when I got to the ‘dump away, dump away’ part. That could apply to me too! I will stock up on meds in prep then…typical, I’m starting to take on work again, not good to be in front of a classroom with a potential lethal weapon in the nether regions. x
Thank you all so much. It genuinely does help to read all of your kind words and encouragement Also I’m pretty sure I heard Herceptin mentioned as part of my plan so I’ll be mindful of toilet locations in future 
Psst…..if you like me need to know where every damned loo will be make sure you also have a small pot of sudacrem with you and some extra sensitive moist wipes. Does not solve the problem but it can make it more bearable and a lot less sore if dynorod does move in. Also make sure you have a drink with you at all times to help combat dehydration.
I can also recommend being honest with the team looking after you, mine gave me loperamide and advice on food to avoid and what might help. Loperamide is my new friend for the duration of chemo at least.