Anyone on Kadcyla and can advise re fatigue. Following discovering brain mets in October and the switch from Phesgo in December, I’ve had two doses of Kadcyla. I am currently on day 14 post dose two but the fatigue is killing me! I have my third dose due in just over a week but dreading it as I’ve basically had 2 “good” days this cycle!
This is having a major effect on my mental health too, I am worried that this is “it” for me now, I just have to put up with feeling dreadful for the foreseeable future. I had plans to try to get my fitness back by walking, yoga, swimming but I simply haven’t been well enough. Pre cancer diagnosis I used to run marathons and take part in triathlons. I was told this is nothing like chemo but so far the side effects are lasting even longer and are very unpleasant.
Hi
I haven’t got any advice but I am in the same boat. Had 1/14 and feel like poo. I’ve had x4 EC x12 paciltaxel mastectomy with lymph removal and temp implant and now Kadcyla. They’ll be putting me on letrozole soon. I’m triple+
All along side effects have been bad for me. Even to the point I developed an allergy to ALL dressings and blistered along my mastectomy wound. Kadcyla 1/14 has exasperated side effects from first chemo:
tinnitus
exhaustion
skin rash
peripheral neuropathy in my toes
loss of strength in my hands
diaherrea/constipation
nausea (worse than paciltaxel)
eye twitch
muscle aches, particularly legs with spasms when falling asleep
multiple mouth and tongue ulcers
nose bleeds (very light but constant)
I feel so abnormal and hypersensitive like it’s my fault and my body should be dealing with it better.
Sorry can’t be helpful but happy to listen and come up with remedies together. Interested in anyone else’s experience. This whole thing can be quite lonely and I don’t want to moan about how I feel to my family and friends. They all think it’s ok now I’ve had surgery.
I am so sorry to hear what you’re going through, it sounds awful.
I did speak to my oncologist yesterday and he suggested reducing the dose for the next treatment and future treatments, he said this is preferred method to keep me on the treatment as long as possible to give me the best chance - otherwise he said I will simply get fed up of feeling so poorly and give up. So I am hopeful for the next time- I will let you know if it does make a difference. Maybe this is something you can discuss with your oncologist?
With regards to your listed side effects. I do experience some of these too.
Do you have any alternative treatments? Reflexology helps me sometimes.
Also do take magnesium? This could help with the leg spasms and muscle aches. I also use a magnesium body cream at bed time which helps. The Neom one is particularly good.
I also get the eye twitch, sore mouth, skin rash, nose bleeds and soreness.
I am happy to chat here too because I agree it’s simply not feasible to talk to friends all the time. A lot of people simply don’t understand and yes they think you’re “cured” after surgery or treatment!!!
Thanks Jools.
I had another dose yesterday. Taking onboard your suggestion for magnesium. I have the AK magnesium cream and will get some supplements. My BC nurse also said eye twitch likely low mag.
One of the senior BC nurses also mentioned some new research that came out this month for palmer plantar. Volterol gel/cream (sorry can’t remember the drug name begins with D) on your feet to help with pain. I am trying this.
How’s it going for you? Must be close to the end? This was no.7 for me. So past half way.
Hey
Hope you’re ok and it’s more manageable now, I know we sort of get used to it but the side effects can get you down.
Since we last spoke on here in January. My dose has reduced twice (it can’t go any lower my oncologist tells me), but the second reduction made a massive difference. The terrible nausea, lack of appetite and general fatigue has improved so much. Time will tell after my regular 3 month scans as to whether the reduced dose is ok (I had scans last week - awaiting results for MRI but CT was all good and breast, liver and bone are still showing stable ). Just waiting for brain scan……
Glad to hear you’re trying the magnesium, I think it helps a little, not a cure but better than nothing. Thank you for the other drug info and recommendation I will look into that.
As for me and treatment plan. No I’m on this forever or until it stops working as when it spread to the brain in October they put me on this for the foreseeable future because surgery isn’t an option for me. This is why it’s so important for me to get my dosage right so that I can “live a little” between each dose. I certainly wasn’t doing that in January!
I hope you’re feeling ok after your recent dose, rest up and take care. Hopefully you have a bit of sunshine where you are.
Talk again soon xx
). Just waiting for brain scan…… 
