Had my first Kadcyla treatment today, it’s been a whirlwind 2 weeks, getting lumpectomy and SNB results, being told I didn’t have enough clear margins and needed more surgery and that I still had live cancer cells in my tumour therefore I’d be switching to Kadcyla for another year. I’m finding it all hard to process!
Friends and family are pleased I’ve had surgery and the tumour is out but with my results I don’t feel any finality to it all. People comment on how well I look, I wear more makeup now than I ever did to combat the pale complexion, tired eyes and no eyebrows so it’s all a facade. They ask how I am and I say I’m well, I can’t really offload how the terror of my diagnosis comes in waves, some days I’m optimistic and others I struggle. Before my results I really thought I just had radiotherapy to get through and then onto pills so it’s all been a punch in the stomach. I’m not worried about the treatment, I think my problems are psychological. Wondered if anyone is going through the same or has been through it and can offer some advice? (47yo HER2+ ER+) Thank you
Hi @Whippetlove, I haven’t can’t comment on kadcyla as I haven’t had my surgery yet but I know it is a possibility for me if there is residual cancer left after my chemo. however there is a great feed with lot’s of women that are going through and have been through kadcyla whom maybe able to help you and provide you with some feedback, its for those that are HER2 positive and it’s a very supportive feed, here is the link (if I’ve done it right)!
https://forum.breastcancernow.org/t/her2-and-need-some-buddies/115568?u=under_the_sea
it’s a long thread but if you go right to the bottom then you can post your question. I hope it helps you and good luck with your kadcyla treatment x
Thank you, I made the post and then I was prompted to add a topic and I didn’t know where best to put it! I’ll have a look x
Hi, I’m now about to start Kadcyla. I’m 49 and was diagnosed triple positive at the start. I changed hospitals before surgery and they queried my her2 status considered it borderline and weren’t happy with how biopsies had been tested and said they wanted to retest what they took out at surgery. I had residual and one node. When I saw the oncologist he said tests had come back her2 negative- no Kadcyla. Had an appointment last week for a radiotherapy review and got told they’ve done further testing and tumour is negative and node is positive!! Back to Kadcyla. I totally get the psychological bit, I had a complete meltdown down yesterday having been really positive. Went for my radiotherapy and they asked how I was, I went with the ‘I’m fine’ response, they said are you sure you seem a bit flat and I burst into tears!!! Took myself off to Maggies on the way home to vent. If you have one near you I recommend. The make up, no eyebrows and people saying you look so well resonates too. My eyebrows and lashes are back now but that is very hard when you get up each morning and see the no make up face and crew cut hair. It’s a long old haul!! This forum is great for support too and the ‘Her2 and need some buddies’ are a super supportive group. There are ladies on there much further through Kadcyla @kartoffel and Belle and they have great knowledge to share. Keep on keeping on xx
What turmoil! You think the cancer diagnosis is hard, but man, the journey is unbelievable. Thank you for replying, I’ll see if I can repost on the HER2 thread! X
It sure is. Keep in touch as we will probably be riding the Kadcyla train together x
I had my first Kadcyla yesterday, 1st apt was 3hrs (!) slight ptsd from listening to the machines going off again but otherwise it’s been fine, no side effects so far. Next apt I think are only 30mins, first apt they give it to you slowly in case of a reaction and then keep you for up to 90mins for obs. I hope you find it it doesn’t bother you x
Hi both just came across this thread and thought I would message.
I am also on the Kadcyla Train. I think i might be 1 ahead of you guys. I started on 1st May.
How are you both getting on with it?
I had terrible headaches for 2 weeks on my first cycle. 2nd cycle was fine and settled after 2 days. Then i started Letrozole tablets and headaches returned but started them on same day as Kadcyla so not sure now if its the tablets or Chemo that is triggering the headaches.
Hooe your getting on okay x
Hey brincat, I am 3 Kadcyla’s in, I think they make me have a runny nose! Not sure as they hit me with other drugs in one go too! On my 2nd dose I also had zoledronic acid and they started me on exemestane! Zoledronic acid gave me flu like symptoms for a few days and wiped me out but I didn’t realise how much until I got to the end of my working week and felt much better on the Friday! I also have zoladex to block my hormones so my biggest side effect are sore joints in my elbows and fingers. Although I walk a lot I always feel as though I have no muscle strength, and I think it’s everything together that’s doing that. I do drink an awful lot of water, I carry a 2ltr water bottle and refill it most days, the heat and the treatment makes me thirsty. When is your next treatment? I hope you fair better, I’m hoping ZA is easier 2nd time around as I go on holiday the next day!