Hi everyone, I am on number 6 Kadcyla and coping pretty well. This came hard on the heels of starting Letrozole and radiotherapy so quite the triple whammy. Each cycle seems to be different. # 1 and 2 fine, 3 and 4 not as good and #5 I would hardly know I had had treatment. They have all been very manageable though with dry/light-sensitive eyes and some on/off fatigue being the main side effects. I was initially devastated to be on Kadcyla, especially as I only had 1.3mm of residual disease in the breast, but I am now pleased I am throwing everything at it. I just want rid of it forever and this is my best bet. For most Kadcyla is so much easier than TCHP.
Just an idea, but if you struggle you might ask to have the infusion over a hour or longer. Lots of people on another Kadcyla support forum say this helps. I ask to have mine over 60 minutes. I also wear compression socks and gloves to lessen the likelihood of neuropathy.
Wishing everyone all the best wherever you are on your Kadcyla journey. X
Hi. I just received my first Kadcyla treatment a few days ago and am waiting to see how I react if at all. I was taken off Phesgo following the results of pathology following surgery and an NPI score and put on Kadcyla or Godzilla, as I call it. It came as a bit of a shock as it is chemo plus HER"2 and I didnāt fare well with my rounds of chemo (EC) and Docytaxel. Up to now I feel ok.
I start my first session of Kadcyla this Thursday 26th March. Iām very apprehensive as I thought after my chemo sessions of Docetaxel & Phesgo, I naively thought the worse was over. they took out the Carboplatin after my first session due to me having a bad reaction to it.
Do you lose hair with Kadcyla? Mine is just growing back & feel gutted I could potentially lose it again. Xx
Hiya. Iāve heard that hair loss is very rare with Godzilla, (forever shall it be known as thus), but that hair regrowth may be slowed, so the odds are in favour of you not losing what youāve grown back so far.
Hi @fairycake, Iām starting on Friday! From what Iāve read, it can make your hair thin a bit, but we donāt need to cold cap. Mine is growing back too but still thin on top so Iām not thrilled either x
My hair is also quite thin at the front. It seems to be much thicker at the back & sides. I still donāt feel confident enough to go out without wearing my hats.
I just dreaded the thought of losing the amount Iāve managed to grow back xx
@fairycake it sucks, doesnāt it, my sides and back seem pretty normal too. Iām going with a baseball cap for spring and a straw hat for the summer if the top of my head is still glowing pinkly under lights!
Tbh Iām just happy to be getting some hair back though Iām fluffy on the right and back, fuzzy on the left and still stubbornly pink and bald on top mullet here we comeā¦
Hello, my first post.Iāve decided to join the conversation about Kadcyla as Iām between 8th and 9th cycles and now really struggling with SEs . I have worsening peripheral neuropathy, achey pain in both hands and numbness/tingles in fingers tips and toes. Also aches in joints, wrists and sometimes hips, and also muscles pains across my back, forearms and sometimes hips , plus central tummy ache at times.im MUCH more tired and generally feeling crap and really worried that Iām only halfway through, and that my oncologist may suggest stopping it. Iām also worried about my heart ( though no symptoms), and previous echocardiograms have been ok. I have another one next week, so weāll see.. I take gabapentin for the nerve pain, and Iām gradually increasing the dose because it seems to help ( nowhere near the max dose allowed yet). But the GOOD NEWS is that my hair grew back really well, before the end of my chemo last year, and has remained thick and curly which it never was before! Result!!
Any similar stories about Kadcyla? Iām so dismayed by feeling so backed with nearly another 5 months to go. How quickly after it finishes do we start to feel better? I was so delighted to feel nothing at all for the first few cycles.
@camustigh Iām so sorry youāre experiencing such symptoms. If chemo was anything to go by, maybe there are good cycles and bad cycles? I donāt know to be honest, but Iām about to find out.
Hopefully your onco can help you out. If any relief is suggested, it would be great to know what that is so we can push for it if we end up feeling the same.
Welcome @camustigh and Iām so sorry youāre having a really tough time. I always feel that when any treatment is described as āeasyā it can silence those people who do get significant side effects or make them feel as though they have āfailedā in some way. Iām also going through ongoing peripheral neuropathy from docetaxel and now nerve damage in my arm from axillary clearance.
I think the main thing to do is keep on contacting the chemo hotline and/or oncology with your side effects. A chemo nurse mentioned to me this week that there is more help available for peripheral neuropathy, and Iām going to ask about it tomorrow at my first Kadcyla cycle. Iāll report back if itās helpful!
A question for those already on Kadcyla, please! I have my first cycle tomorrow. Did you all follow the dietary restrictions from previous chemo, e.g. no live yoghurt?
Hiya @dilly - just looking at a quick Dr Google search, immunity may be compromised, so Iām guessing it is a case of better to be safe than sorry and avoid foods that could cause stomach upsets. Bit of a pig but I guess the alternative is worse.
For most Kadcyla is so much easier than TCHP.
