Thank you, I’ll keep that in mind what a great mindset 1 year for 50! Yeah I am not usually pottymouthed but Cruella deserves it😜
Just had a chat to the specialist and they did say to take it three weeks at a time and that all I am experiencing is normal. And turns out the regime they are giving me is very hard and most people have to reduce it after round 3/4 or so. But they get great result with it so its worth it!
@lmack95 hy i was on the same treatment as you without the zoladex. It is hard but I got through it and you will too, just keep taking anti sickness pills and loperamide, I had bad heartburn as well and sore tongue but I got prescribed ozemperole and a mouth wash and gel clair gel, 14 month later I’m back at work and doing fine joints and bones are a bit sore with kadcyla and letrozole but I keep myself moving. Put yourself first and take all the help you can get especially with the little one, you can do this, be strong and it’s OK to cry X
Thank you Caz, I really appreciate it. I am trying to keep as positive possible but hearing it’s a hard regime made me cry a little (more out of gladness I wasn’t just making it up in my head). I’ll definitely start being more willing to take all the medicines, as I was told to take as needed I was still in my healthy mindset of don’t take if you don’t REALLY need to!
Hi Caz can I also ask what you did kinda day today while recovering and what your days looked like? I am terrible for not resting enough so maybe someone else’s experience can help me out!
The first couple of days I was OK the next 3 days I just lay in my bed the fatigue was terrible the next 5 days I couldn’t eat my tongue was sore I lived off strawberry milkshakes custard and chicken soup after that I started to to get energy and some appetite back, not everyone will be the same but my 3rd cycle was the worst. Once your over your bad days then you know the good days will come x
I met a lady at a local support group who had HER2+ primary cancer 20 years ago and her oncologist said she needed Herceptin but the trust refused. She paid privately for her treatment while taking the Trust to court with some other ladies and judges ruled that the Trusts needed to ‘review’ their criteria for access to treatment. Some ladies had their union backing saying it was against their Human Rights to refuse treatment. Their legal fight has allowed all of us to have Herceptin/Phesgo. It’s heartening to know we don’t have to fight for an aggressive form of BC.
It made me Google the story and realised it wasn’t all that long ago that it was also a ‘postcode lottery’ for Tamoxifen and Enhertu more recently.
I feel so grateful for the treatment I have received.
Yeah actually chicke. Soup sounds amazing. I’m getting appetite back but only slowly! Halfway through my second week 
Hi everyone I was out of the chat for a while and I just spent a delightful time to catch up on everyone and read about some new members of this thread, welcome!
Girls, I have done it I am 10 days post my single mastecromy with tissue expander. Now I am waiting another 2 weeks and have a follow up to see what was there and whether I need chemo ( scheduled on my bday to make it all more fun I guess). Awww I was hoping to be like some of you amd say the mastectomy was a breeze but I really struggled with the recovery. I think because it was my 3rd surgery in like 3 months, I was so anxious, then dizzy, then just weak and now just slowly starting to pick up. I am still getting used to the expander, mentally I don’t even care anymore about how this all looks now, I just want it to finish. I experience like, I don’t know, tightening spasms from time to time of the expander on my chest, it feels like it hardens and then releases after a while. Sleeping is so difficult too due to that. My experienced ladies please tell me it will pass x my surgeon and BN both said it’s normal. I missed you all and I am glad I can post again as it means I overtook another step again. my drain is coming out tomorrow after 10 days of hiding it from my 9 years old which was a challenge x
Well done @boobitis it can’t be easy with a 9 year old. I had bi lateral lumpectomy so can’t comment on mastectomy, although healing for me was smooth. Sleeping was problematic as I could only sleep on my back and propped my self up on both side with pillows so arms rested on top.
@lmack95 I was at my worst during EC chemo on Days 3 and 4. That always coincided with a Saturday and Sunday so they were sofa days. I had 4 cycles of EC and then it was Paclitaxel x 12 which I found much easier. Be kind to yourself and rest wherever you can; but easier said than done with a one year old, I know. It does get better.
@naughty_boob Wow! What a wonderful woman to meet. It’s so shocking to think there are drugs out there that can give people their lives back or extra time with their loved ones and they are denied them due to cost. I get that the drugs companies need to recoup their loss on R&D and fund future development but there is a valid argument that they could price these drugs lower and still turn a profit. I do feel eternally lucky to live in a day and age where Herceptin/Phesgo is available to us.
Hello @boobitis and well done on getting through the last few weeks. My fake boob will always feel a bit hard and weird compared to my real one, but now it isn’t uncomfortable and I can sleep in all positions again. Just wish my dog wouldn’t keep jumping on it. Getting that drain out is a good feeling.
At last I have today reclaimed my Thursday dog agility class! 8 month break due to dog injury and my chemo. All things come to we that wait, eventually! Hang in there ladies still on chemo…your time will come!
Meeting the lady yesterday encouraged me to watch Living Proof with Harry Connick Jr about Dr Dennis Slamon who invented Herceptin. It was so wonderful to watch and at the time it was only Stage 4 ladies that could take part and some didn’t make it. I was so emotional watching it but it was really worth it. I’m over 2 years since my diagnosis, definitely couldn’t have watched it during active treatment.
Question for the Kadcyla ladies…. I am 8 cycles in now, number 9 due next week. Did you find you got increasingly tired as the cycles went on. I’m holding up pretty well but definitely feel a bit worn down. I’m 9 or 10 weeks into letrozole too so not sure which is wearing me out - or both!! Working with horses doesn’t help!! Joints and muscles are a bit sore too. Not awful but annoying when it slows me down - to the ladies that are finished how are your bodies now. Any wisdom appreciated x
I have 11 cycles of kadcyla get 12th next week i just need to sit down and I fall asleep so I keep myself going my work keeps me busy and keeps my bones and joints moving, my right arm and shoulder are a bit stiff oncology gave me ibubrofen gel but I think I need physio x
Hooray @carrie5 for reclaiming a part of your old life. Happy news. I like forward to seeing you both at Crufts!
@naughty_boob I really should watch that film now. Like you, I wasn’t ready before but I think I am now and Herceptin is absolutely something to celebrate.
Sorry I can’t help with Kadcyla queries but there are many who can so I hope there are a few more responses.
Have a good weekend, all.
x
@woody2 The fatigue was definitely cumulative over the 14 rounds. I finished in July this year and am only now starting to feel more “normal” energy wise. I think some of the residual fatigue was down to the UTI + the 50k + starting AIs and + zometa. It’s like death by a thousand cuts, none of them individually is that bad but all together is a lot.
I had a week off work in October where I basically just slept for 3 days straight and I think that helped a lot.
Still no news on the reschedule of my reconstruction which is a bummer but I did see my oncologist this morning and he said my scans are all unremarkable and my liver function has improved from the tests I had a few weeks ago, although it’s still out of range. They have no idea why my liver is struggling, but they’ve ruled out mets or fatty liver. Funnily enough on the fatty liver, he said my results are the lowest he’s ever seen in his 25+ years.
Hi all,
Thought I’d pop in to say hello. I’m a few days post lumpectomy. Keeping up with my exercises but it appears I have an infection in my hand which started to track up my arm I’m guessing it’s from when they put in my cannula. On the bright side the pain from that has distracted me from the pain from the lumpectomy. Now I just have to wait for the results - the surgeon came around after surgery but didn’t give much away other than it looked normal. I was too out of it to ask him to clarify.
My family and I did some Christmas shopping today, and it was so nice to be out in public, not worrying about my white blood cells. Im still struggling with anxiety but start CBT soon..I hope that makes a difference but can’t shake the dark cloud that seems to follow me around.
I have picked up my sewing again though, and am currently sewing thank you presents for everyone who has supported us since diagnosis.
I also met a fantastic lady at the last sound bath I attended. She’s a true warrior and very matter of fact about the journey we’re on. I can only hope that some of her personality rubs off on me.
I do hope that you’re all okay. X
Hi @cass2 - I don’t want to alarm you but please go and get that suspected infection in your hand checked out as soon as you can. Maybe give our BCN nurses a call on 0808 800 6000 to describe it. Do you know how long you will have to wait for results? It’s normal to feel like a dark cloud is following you at this point. We all do/did. We are, after all, plunged into a nightmare all of a sudden but it does become the new normal at some point and it doesn’t all feel so dark. I’m a different person than I was before diagnosis, but I like to think I am a better one now, who doesn’t sweat the small stuff and feels gratitude for every day. I think I have got it all into perspective now although I did have a recurrence dream last night so it’s definitely there in the subconscious. It just doesn’t colour every waking hour like it used to. I believe it has made me stronger and more appreciative of all the good stuff that life has to offer. Well done on the Christmas shopping trip. These are all little victories over bc.
My son has to make a documentary as part of his Creative Media course on a media franchise with superfans. He is doing Eurovision and is interviewing me and my Eurovision pals. My interview is tonight so I will be dressing up in something sequinned and outlandish for it. It’s my prerogative as a parent, right?! 
Couldn’t agree more with @salbert on the changes this cancer rubbish brings but includes the wake up call to live life now. Yes parental right on the proper dress for the occasion, I feel a picture for us would be appropriate
I wouldn’t expect anything different. 
I hope you have been able to get someone to look at your infection @cass2