Thanks.
I had surgery before chemo and radiotherapy, and finished Herceptin in November. I would like to lose a few pounds that I put on over Christmas, but that’s a bit too drastic 
. My oncologist is giving me anti sickness as well as loperamide ….sounds very worrying. Don’t know what my initial dose is going to be yet. Fingers crossed for both of us 
xx
Yes my plan was to slim down before Christmas lol but ended up putting it back on after finishing meds so back to being as chunky . I also got anti sickness and moisturiser as well as the loperamide . Some suffered rashes but in my short time on it I didn’t x
Aw fabulous glad to hear your doing well hun , enjoy and have a great evening XX
Yesterday I had my last kadcyla Whoo hoo, I took my own bell to ring, it was a bit emotional but after 16 months of treatment I did it, I get my mammogram next month. To all you ladies that have just started treatment or half way through you will get to the end X
Hi Carrie5. Am back on anti depressants and feeling more together now, thanks you. Am still off AIs but seeing the oncologist next week with a view to going onto Tamoxifen. My eight week break from AIs has only slightly reduced the pain they caused but I’m hoping the longer I stop taking them, the joint pain will continue to lessen. Hugs to you.
Hi Salbert. I’m back on anti depressants now and feeling much more positive. Thank you for your kind support and concern. I thought the surgery and radiotherapy would see the back of the cancer but find the AIs eg the Letrozole, Anastrozole etc worse than anything. The joint pain in my legs and hands is so debilitating and frustrating and stops me doing all the things I love to do. Anyway it’s now 2026 and I must try and move forward. Gx
@benji so pleased you’ve got help with your mood and hoping you feel your head gets to a better place soon. Likewise the joint pain which sounds like it hasn’t improved yet. Is there any other/ additional cause you can think of? I find keeping moving gently helps, I’m more stiff than anything now, walking the dogs makes me move and I do seem to come through it. Thanks for letting us know how you have got on, keep us posted, good luck.
Hi.
Happy and healthy new year to you all!
I’ve just been catching up on the last few months of this thread - what a positive group of knowledgeable people!
I’ve been on the Chemo monthly starters thread since start of chemo and have found the support there invaluable.
I am triple positive and finished EC and Abraxane in November then had lumpectomy and Sentinel Node removal in December.
Yesterday I found out that, despite being told there had been complete pathological response to chemo, there were still residual low grade cancer cells inside the removed tumour but node was clear. Therefore I am being advised by oncologist to have Kadcyla instead of Phesgo. After Radiotherapy.
Its knocked me for 6 to be honest. I was hoping to go back to work this month and now it seems more chemo will affect me going back full time.
How did you find working around the Kadcyla treatment??
Hi @cheche Welcome to the thread, we are a friendly bunch.
There are a number of ladies on or finished Kadcyla who I’m sure will pop on soon to help.
@caz591 
bench slaps for finishing Kadcyla.
@benji I started on Letrozole, stuck with it for over a year as they said some side effects could be Herceptin, and then had an 8 week break (heat surges ( no pink fluffy hot flushes for me), joint aches, existing joint issues made so much worse, mood is low, poor sleep, vaginal problems. I swapped to Exemestane, which was a little easier on the joints. Having two invasive tumours at the same time, I was advised AI’s were the gold standard so I’m trying to preserve. Tajo works in a different way. I have a menopause consultant and we are trying to work out what I can take to mitigate the side effects. I am taking 5 medications to mitigate side effects and hopefully will start 1 more in February. Venlafaxine, can help with mood, pain and hot flushes but I have contraindications with other medications. But I’ve spoken to pharmacist who says I should be ok on small dose.
Keep us updated.
@cheche Hello and happy new year to you too. Sorry to hear you now are being advised to have Kadcyla especially as you were expecting a complete pathological response. I have just had my 4th Kadcyla and I am still not back at work yet so can’t advise on work but I know lots of ladies on here are/have been able to work on it. I am hoping to go back on phased return sometime soon when I feel ok to xx
@cheche hi I have just finished kadcyla i waited till I had 10 cycles of kadcyla before I started back at work, it’s more the tiredness that I struggled with and joint pain but I don’t know if it was a combination of both kadcyla and letrozole, I just kept myself moving, I took the day off when it was treatment and the day after that off my work. I never really had any bad SE, heartburn for a couple of weeks but I coped well x
Good afternoon and a Happy Friday to one and all
I’m pleased the neratinib conversation is under way. Experiences shared are all valid, whether good or bad.
@caz591 Congratulations, lovely one. I smile away at my desk whenever I read a post that someone has rung a bell, slapped a bench or just quietly felt happy to have reached the end of treatment. You did it and are now making encouraging posts to other ladies. And so it goes full circle. 
@benji Thanks for coming back to us and letting us know how you are getting on. I’m so relieved to hear you sounding so much better. I wonder if any of @naughty_boob ‘s recommendations could help you? Worth looking into? As @carrie5 says, I am also stiffer now and I wonder if it’s as a result of post treatment and post menopause. I refuse to let it stop me and threw myself into a YMCA warm-up with the kids last night at the first Musical Theatre class of this term. Yes, my knees complained but I’d like to think I did it with as much gusto as I did in 1979!
Hello @cheche and a warm welcome to you. It’s true that there are some hugely knowledgeable people on here that we are very lucky to have. I, at least, can lay claim to being generally positive! 
I’m really glad you have been reading this thread as there is so much on here about Kadcyla. I do know that feeling knocked for six by the news that you are going onto it is common. They don’t warn you that this is a possibility at the outset and it comes as a shock. However, many of the women on this thread that have been on it, report that it is easier. @kartoffel and @gromit12 have astoundingly been running these Iron Woman Ultimate Challenge races over insane distances while on it. If you do a search for them on this thread or a search under Kadcyla, you will see plenty of references to it. It generally seems to be better tolerated than other forms of chemo based on what others have said. Great that others are already answering you.
Six, The Musical, was great, by the way. I loved it and left on a high. I particularly liked the idea of reclaiming the narrative on the lives of King Henry VIII’s wives and the suggestion that he is only so notorious and well remembered because of them. I do so hope the old tyrant, chauvinist murderer is turning in his grave!
Amazing, well done! I’ve just had number 11 and can’t wait to be done now. Hope you did something to celebrate x
I have just had Kadcyla number 11. I have been working part time. I haven’t suffered much with side effects apart from fatigue and aching joints. The fatigue has definitely increased the more doses I’ve had but the end is coming into sight now. The joint pain could well be from the letrozole I’m on so Kadcyla may not be the cause 
Thank you all for the lovely welcome.
I was wondering what you ladies on Kadcyla had experienced with peripheral neuropathy and/ or hair loss.
I cold capped throughout EC and Paclitaxol which enabled me to save my long hair. Or at least only suffered thinning. Will I need to cold cap on Kadcyla?
I also iced hands and feet on Paclitaxol but still experienced slight peripheral neuropathy in my feet. Just a bit of numbness under my toes. I’ve read that the neuropathy is a side effect of Kadcyla too and a bit worried about that.
@cheche my toes felt cold to me but not to touch and I lost 4 toenails, my hair is thin which I think is a side effect of kadcyla, I developed pain in my shoulder which they thought was frozen shoulder but xray came back yesterday and it is arthritis which is a pain start treatment at end of january, this only developed after radiotherapy they said it could be post traumatic arthritis, I thought the pain was because of kadcyla and letrozole combined. I will let you know if hair gets any thicker once kadcyla is out of my system x
Hi sorry you find yourself here🥲 this sounds so famiiar to me as my “BF” behaved in exactly the same way despite us going through life’s most momentous events together over the last 35 years. I felt that this too was a pretty momentous event in my life but didn’t get the support I was expecting. She sent the obligatory wattsapp messages to check in but never called me to speak. At first I made excuses thinking she was maybe having a hard time dealing with it but as the time went on and I’m coming up a year from diagnosis and still undergoing treatment I think it’s safe to assume that’s the way it is. I did however get lots of support from joining a lovely group of ladies who have been through this themselves. Hang on in there and you may be surprised who steps up to the plate. Good luck x
Ah that’s soo awful to hear, you definitely believe that best friends will be the easiest to deal with. I have found my work colleagues and couple of other friends easier to talk to as they chat about normal life and don’t treat me like I am fragile. So glad you found people to talk to during it and that’s the thing I have read so many stories and everyone journey is soo different and you don’t know how long you will be in this stage and how it’s going to impact you. So speaking with woman that are going through this and on this feed has been a god send over the last few weeks.
The waiting for the treatment to start and now I my boob is hurting is stressing me out loads now. I have got a constant headache and paranoid and really as I said to my mother who forgets everything, I cannot talk about it and have to explain my self.. I am getting be positive constantly, I haven’t been negative but because I have decided to not drink now and go no inkling to be in a restaurant or mixing with people socially I am not living my life.. it’s only been 3 weeks since I was told and I just want to process and get prepped.. I have had lots of fun in my life but at the minute I just want to read up and watch tv. my walking has been pegged as it’s been snowing and too icy again today.. so hopefully from tomorrow I can get back out with my headphones and switch the world off..
I eventually told my son who has been amazing and I just want to be around him a lot.
I am defo in the angry stage though.. eeek awful but this waiting is horrendous ..
hopefully I don’t sound like a nutter. but I want peace and to do this quietly and without fuss if I can .. i have my own way of journalling the feelings and will keep a log of it.. just for my personal use I think.. did you do anything like that?
@jayb73 I know that feeling that everyone else’s life carries on but yours is on hold but it too will pass and this is very much out of our control. I tried to deal with each piece of information results surgery treatment options etc singularly and not get ahead of myself, although it’s easier said than done. At completion of each stage I put the lid on that box and shipped it. The waiting is the worst but no point in worrying twice, once you know what you’re dealing with it brings an order to how you deal with it x
@rugbygal1 thanks, i will try and do that at each stage and distract myself as much as I can.
Ladies, I have been reading about eyesight issues and chemo. Has anyone experienced this as a side effect? Is it a common one?