Hi all I’m a bit late joining the group as going through treatment I sort of lost myself as I was so ill.
I was diagnosed back in September 2023 Her2+ and ER+ in left breast with lymph nodes affected. Started 6 rounds of chemo in August along with phesgo. Ended up in hospital 4 times. My oncologist said I was one of the unfortunate ones who had most of the side affects😕
But managed to finish chemo, had bilateral mastectomy in April which left cording in armpit but that’s manageable with stretches and have just finished Radiotherapy yay!
Have been having problems with an ongoing Seroma which has been aspirated twice second time was traumatic, a simple aspiration turned a bit complicated, won’t scare you all with the details as aspirations are usually a painless simple procedure.
Now next stage of treatment to start. Anastrozole for 5 years and phesgo to carry on. So far have had 6 got another 12 to go. I just keep reading how horrible aromotase inhibitors are which has started stressing me out and also the oncologist I saw mentioned Zolendronic acid infusions every 6 months. This has thrown me as was never mentioned by my main oncologist. Reading up on it I’m not sure I want to have the Zolendronic infusions due to the horrible side affects.
Is anyone else on anastrozole, phesgo and Zolendronic acid infusions? I really don’t know what to do for the best. Any advice is appreciated.
Thank you
Hi @hks
Welcome to our group, you’re never late, everyone joins if and when they are ready. So sorry to hear all you have been through.
I’ve been on Letrozole since mid January and had some horrible side effects. I wrote this for the forum hoping it would help others. I didn’t want to stop for fear of the bc coming back so I looked into things that would manage my symptoms. I will be updating it soon with how I am getting on.
I have had one Zoledronic acid/Zometa infusion in April and due very 6 months for 3 years. I had flu like symptoms for 3/4 days and took paracetamol 30 minutes before the infusion ( as I was advised I could get some aches and pains while having it). It took about 30 minutes. The worst thing for me was sitting in a chemo chair on a ward that had 3 beds and a chemo chair. I hadn’t expected to be sitting it one knowing that my appointment didn’t state the two wards for chemo. I went alone and I burst into tears. It was 4 months after chemo as I needed some work on my teeth and I waited just in case the work was invasive (root canal/extraction). You must keep on top of your dental hygiene, regularly see a dentist and advise your team if you have any dental problems. I believe there is a risk of fractures, I had the dog run into my shin at full force and went to minor injuries because it was so painful and bruised. I needed to advocate for myself because the nursing staff there were not necessarily cancer trained. Luckily for me I had a one bruise and not a fracture. I was informed it was the treatment to help prevent osteoporosis and studies have also shown that it can prevent cancer in the bones.
I wanted to have everything they advised as they are the experts and wanted to give myself the best possible outcome.
Sorry to hear you’ve been struggling too @naughty_boob. It’s just neverending and tbh I’m letting things get to me a bit. Just need to get into a positive mindset. Thanks for sharing your treatment insights, I appreciate it. Do you recommend any mindful podcasts or people to follow on social media? Does anyone else in this group have any tips and tricks they would like to share.
My tip is having turmeric boiled in milk with a pinch of cinnamon to help with joint pain. Was told this by another cancer survivor who swears by it. I started today so let’s see
I have used the Headspace app since last July and do it daily. I was introduced to it via Penny Brohn cancer charity who provide lots of online aswell as face to face support. I attended a menopause wellbeing day.
I have immune boosting shots in hot water daily. Also includes turmeric.
Hi everyone im sort of new here. Think i might have dound the right forum now. Got diagnosed in july with grade2 invasive cancer which is er+ and her2+. Been given a date for surgery on 30th sept and also been told i will have to have chem after which im not looking forward to. The last couple of 2 have been a nightmare as had to stop my hrt have my coil removed and started on tamoxifen my emotions have been all over the place. But the people on here have been amazing with their advice. Ive got the bc nurse calling me today so hopefully i can get some answers to the questions i have going wild in my head. 
Hello and welcome @hks and @sawabev - No such thing as late to join because we are a very friendly bunch and we are on here day in, day out, so drop in as you please. We do!
hks - It sounds like you have had a really miserable time of it. How horrendous to end up in hospital 4 times!! That would make anyone feel awful. I’m going to say a massive well done for getting through it all. With so many side effects it must feel like you have run a long and arduous marathon compared to other people doing a leisurely lap. I am on Phesgo and will be starting radiotherapy in early October. I have had my first zoledronic acid infusion and had aches and pains and lost all my stretchiness for a couple of weeks. However, it subsided and I am fairly bendy again. (Please excuse total lack of correct medical terminology. I leave all that to @naughty_boob who is brilliant at it! Great post by the way. Really good and valuable info. Hate the thought of you bursting into tears though. Big hug my friend, even if it is months after the event!) I have been very lucky to not have many side effects and I hope zoledronic acid isn’t too much of a pain for you either. Fleeting lack of bendiness is not too onerous! I did counselling, walking while listening to uplifting music, meditation, talking to people on here - all of these helped my mental health. Oh and medication! I was given anti-anxiety/anti-depressant pills called Mirtazapine. All of this helped me to feel really rather positive once I was on the treatment path.
@sawabev You’ve been plunged into the breast cancer/HRT cold turkey nightmare! Many of us are familiar with this. I certainly am. It seems to me that some people get a breast cancer diagnosis and their treatment path is akin to a short flight to Guernsey. A HER2+ diagnosis seems to be rather more a return flight to Australia with a detour via the far side of the moon. Life was ticking along quite nicely and then wham! So I and many others can certainly relate to the wild head. Great that you are speaking to the bc nurse today but always worth asking away/splurging on here as it seems there is always someone who has been there and has some good advice.
I am feeling so much better now that the chemo is 6 weeks behind me and the mastectomy almost 2 weeks behind me. My son is now cashing in all his Christmas stocking tokens that have had to take a backseat for a while. This saw us eating until we were both fit to burst at an all-you-can-eat buffet on Saturday (taste buds have returned and so have my love handles 
) and today is a trip to Bluewater. Correct me if I am wrong, but I do believe there is a Wagamama there. I have worn a pair of loose fitting, elasticated waist, boho trousers, ostensibly because they are a cool and summery look but actually because I can eat my own body weight in noodles and they let me! I probably need to dust off my scales again and start to watch it. And I have literally just put ‘cake’ on my shopping list when I remembered I have a friend coming round tomorrow. 
Love and strength to you all,
Salbert
xx
Hi @sawabev
So sorry to hear of your diagnosis and you now join our friendly bunch. We will be with you all the way.
I also had to go cold turkey removing my coil and HRT gel last April. I saw a menopause specialist and heard on an Instagram thread that going cold turkey was going to stop and with a slow withdrawal instead. I can’t remember which doctor said it, but I remember them saying that even though the oestrogen can encourage the ER+ cancer to grow but they also have to consider the side effects of cold turkey. I suffered for over a year until I eventually got help with the side effects of coming off HRT and the bonus of Letrozole.
I’m assuming you are on Tamoxifen now as you have your operation at the end of September. I didn’t start Letrozole until after radiotherapy finished.
I hope you get the answers you need from the breast cancer nurse, I kept a note book and every time a question popped into may head I would jot it down to ask at the next appointment.
Remember you can also call the BCN nurses
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
You are not alone
Hello peeps
A funny thing happened to me today….not anything to do with treatment etc, !
So my wig was due for collection from the wig studio. Hubby and me set out in good time and got there 20 minutes early. Doing as I am told, I find myself never without a bottle of water. The downside is of course needing to pee more frequently.
We sat in the waiting area across from the little hall, where there is a toilet for the use of customers. Hubby uses the facilities. Good idea thinks me, it is just one loo for everyone to use. So, did what I needed and washed my hands. On top of the automatic hand drier must have been 200 paper hand towels, so I took a couple off. Then, slump! All 200 fell onto the floor. So I gathered them up as best I could……another slump. So I knelt down and tried to pick them up again, only I had now triggered the automatic hand drier! They went everywhere. So I called to hubby to give me a hand. The two of us were desperately trying to gather all of them up. Then he set off the auto drier, and they scattered in all directions again. The wig lady appeared and wondered where we had disappeared to!
Apparently it has happened before. They all ended up in the waste bin.
Hahaha I’m getting crystal maze type flashbacks from that story 
(if you remember that show lol)
Hi belle
Yes, you are right, that’s exactly how it was!
@bigpickle I love that! That was a proper lol! I can just imagine you and your husband whirling around helplessly in the loo to the roar of the hand drier, while paper towels fly in circles around your heads, and a wig fitter looking tentatively round the door. Maybe it’s time for them to invest in a paper towel basket, preferably away from the hand drier. How did the wig fitting go? I just loved my wigs. I now have a Sinead O’Connor going on but without the soulful eyes. It’s getting colder now so I shall no doubt go back to my wigs as they keep your bonce warm.
Your chain reaction tale reminded me of the time that I found my ex-husband naked and freaking out in the hallway. I was on the phone but he was making such a racket that I had to terminate my call to go and find out what the hell was going on and calm him down. God bless him but he was a liability at times. Turns out he had gone to make the bed and knocked over a mug of tea on the bedside table which had spilt on the bedding. He had then tried to quickly strip off the bedding so that it didn’t go through to the duvet and mattress but then dislodged the other mug of tea on the opposite side. Then having two spilt mugs of tea to deal with he pulled off all the sheets and for some reason pulled the mattress halfway off the bed so it was diagonally across the bed frame which had then trapped him in the corner of the room, at which point he got so hot and frantic that he stripped off all his clothes and leapt over the mattress barrier so he could escape the room of total chaos that he had just created all by himself just by trying to make the bed. Lucky I have a sense of humour!!
Thanks for the laugh. I think the gift of laughter is one of the finest you can give.
I have Phesgo tomorrow. It’s so good to feel all my energy returning.
Oh and by the way, yesterday at Bluewater my son and I booked a demo of the Apple Vision Pro. It was mind-blowing. Virtual reality goggles of the future. It was just amazing to have an immersive experience that felt like you really were there. I went to Iceland, a lake in the US, right in there with the elephants and rhinos on safari and was even on the football pitch in the middle of an international match. It will be incredible technology for people who cannot travel. Give it a go if you are near an Apple store. Quite an experience.
Salbert
x
Hi Salbert
The wig fitting was great thanks. It so looks like my natural hair.
I loved your tale of your ex husbands bed making prowess. A good chuckle is good for the soul.
That sounds fascinating, like something out of a movie.
All the best 
Hi folks. I havent posted on this thread yet but have been lurking a while. I have triple positive inflammatory breast cancer diagnosed in april and im coming towards end of chemo with pending surgery in october. I have had 5/6 cycles of herceptin, pertuzumab, taxotere and carboplatin every three weeks. Im due another 11 cycles of herceptin only subcutaneously, once every three weeks, after this through surgery rads etc.
I think phesgo is both the herceptin and pertuzumab so this is prob a bit different from most of you. My question is how much nausea reduction can i expect coming off the other three. I have really struggled with nausea management during this phase. Its typically close to two week mark before i get off nausea meds and they only partially help.
We are hoping to go on holiday at end sept pre surgery, i will have had the herceptin subcutaneous the day before. I didnt really think about side effects as i assumed it should be walk in park after having the 4 IV, but now im starting to wonder. I also need to have a proper chat with oncologist re management if nausea is going to be ongoing issue. If anyone has experience of similar meds transition would be good to hear. Many thanks 
Hello @jaffaboob - All lurkers welcome! 
Love the name, by the way. Please do tell how/why you came up with that? I have to know!
I’ve actually just got back from my Phesgo injection and I can honestly say that I don’t get any nausea or side effects from it. I know this isn’t the same for everyone but I hope and pray this is the same for you. I have certainly found it to be a walk in the park after everything else. @naughty_boob (similar name!) is the oracle on side effects and management of them. I know that she does get side effects of the Herceptin injection which may or may not be Phesgo. Bound to have some good advice for you.
I think it’s worth mentioning to your oncologist anyway so that you can be prepared and go on holiday with peace of mind. We are hitting the road in our camper van on Sunday and have no plan. We are just going to follow our noses. I somehow suspect my husband will wend his way to Cornwall and I will be shouting ‘No! Wales!’.
XX
Hi salbert. Not been on the forum for a while but just wanted to say Im so pleased you are doing so well and to send all you brilliant ladies my best wishes. This chat is a huge help and comfort to us all and I am so grateful to those of you who continue to support those like us with advice and hope by telling their own experiences. Not much to report on myself. First mamogram on 30th August hopefully it will be good news. Not having chemo and being her2 + has bothered me I must admit but we shall see how things go.
Have a good weekend all.
X
Hello @jill2, so good to hear from you. In my head you are forever Jellylegs Jill! Thanks for your good wishes for all of us; I send some back to you. I think it’s wonderful that all us HER2+ ladies have a place to share, share and share some more. The sad fact is that every day more ladies will be getting that diagnosis so I love that there is somewhere for them to come and find us all, waiting and ready to support.
Please let us know how the mammogram goes on 30th August. I can understand why we all get nervous when these become due but hoping and praying for a positive outcome. I know that not having chemo did and does worry you a bit, which I fully get. It’s not unusual if it hasn’t spread to lymph nodes so I guess we have to trust that they know what they are doing and continue to be vigilant and advocate for ourselves when we need to.
Have a great weekend, y’all.
Salbert
x
Why didn’t you need chemo? Mine isn’t in my lymph nodes although need a clearance as the lump is in my axilla. Also 2nd time having breat cancer so maybe different but having chemo again (paclitaxel) and Phesgo injections.
Thanks for all the info @salbert great to hear you’re doing well on phesgo. Will chat to onc. Have a great holiday!
The username is basically a nod to inflammatory bc. I have had fibrocystic changes for several years but i knew i was in trouble when i had sudden swelling and orange peel skin (hence the jaffa oranges 
). Anyway, the orange is off to the juice factory in early oct 
.
Hi Linda_Corinne. Oncologist said because it was small 10mm good clearance and clear lymph nodes after licap surgery chemo would make a small difference if any and could do more harm than good. So operation and 5 rads and 5 booster rads. It appears from others on this forum that I’m not the only one who has been given this treatment plan which is reassuring but I shall feel better after the first mamogram. Thanks for replying. All the best. Jill.
Hi guys, i need some advice plz. As i said in my last post my bcn was calling me on Tuesday so i could have a good chat about how low im feeling and about my op, well i never got that call so i rang again the next day to be told its her day of anyway i spoke to someone about how low im feeling andcshe said to get in touch with my gp and my mood is more than likely to get lower, so i did today i spoke to the mental health doctor and said yes i need something but he needed to talk with the pharmacist as he didnt know what would be best for me as im taking tamoxifen which i get he said he would call me back within the Hr which should have been about 11.30 ish so 4 30pm im still waiting so i rang again and im still waiting for the call back. Then this morning i get a call from the team doing my pre op to say its been cancelled so got to wait for another date. I just feel every door i go to to get some help and advice just gets slammed in my face. 
i just dont know what im meant to do.