Hi,
Ive just had round 2 of kadcyla and feel absolutely awful. Ive been in bed for 2 days straight. I am beyond tired, have muscle pains in my calves, hip joint pain, sore head, i feel nauseous & have lost my appetite.
Round 1 wasnt too bad as all i had was tiredness.
Really struggling as my oncologist has told me that kadcyla is the easy bit…it doesn’t feel like it.
Has anyone had these side effects (on thwir own or together) & if so, are there any tips to get through it?
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Sorry you haven’t had a response yet , hopefully me replying will bump your post up so someone with experience of this treatment sees your post .
Hi there,
I’m afraid I can’t help either as I’m due you start Kadcyla myself today. I came on here to look at side-effects/drugs.
There’s a helpful group on Facebook if you’re on there (just called ‘Kadcyla’ I think). Hope that helps, and hope you picked up quickly from those SEs.
Doris x
Thanks all. Had a follow-up appointment this week & oncologist thinks id picked up a bug. Fingers crossed thats what it was for next infusion to be more manageable
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Hi, I haven’t started my chemo regime just yet as just completed surgery.
I start on Kadcyla 9 Oct & have 14 cycles to complete. Happy to buddy up. I’m interested in side effects to. You haven’t mentioned the length of your treatment.
So sorry to read what you’ve gone through & I do hope that your oncologist’s thoughts prove correct, not connected to the chemo.
Went through 6 cycles of neo-adjuvant chemo, Docetaxel & carboplatin, & I’m told that Kadcyla patients suffer milder side effects. The list is shorter, so I’m enjoying my glass half-full moment. I had a very low moment between cycles 3 & 4. Following a mid-season ultra sound to confirm very positive physical changes, & meetings with both oncology & breast surgery, my drug levels were reduced by 30%. This made a substantial difference. Despite the seriousness of the disease, all the clinicians appear very patient focused & our ultimate wellbeing is paramount.
Wishing you all the best Anaxx
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Hi Ana,
Glad you’ve got throogh your down phaae & feeling more positive.
I’ve had 3 of 12 infusions. Feeling like ots dragging in. 3rd wasnt as bad as 2nd. Just very tired. Had it at same time as radiotherapy which didnt help.
Wishing you luck for your first infusion. Happy to chat if you want to private message
Hi,
Just wondering how everyone is getting on with Kadcyla? I will be starting this soon. I had neoadjuvent chemo (docetaxel and carboplatin) plus phesgo to shrink my 60mm tumour, followed by surgery. As I didn’t have a complete pathological response to chemo (1 cm left) I will be switching from phesgo/Herceptin to Kadcyla. I still have radiotherapy to commence. I’ve been told that it is well tolerated compared to the initial chemo and that people can carry on with their everyday activities? I’m going back to work on Monday and worry that going onto this drug may affect how well I can work? Any insights gratefully received!
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Hi andreag
Im a 3rd of the way through treatment. I dont have too many side affects but fatigue is definitely one. Oncologist thinks its more to do with me being in treatment for a year; chemo then surgery then back on chemo.
Im finding working full-time hard. Lots of early nights & not doung much at the weekends.
Hope treatment is kind to you
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Thanks so much for your reply. I’m in the same position of having completed fairly rough chemo then surgery. I had my results yesterday and unfortunately they didn’t get a large enough clear margin so I have to be operated on again in two weeks. It was a shock as on MR scan it had seemed that I had a complete response. So another op, and then radiotherapy alongside Kadcyla. Did you also start hormone treatment at the same time? I’m scared of how grotty I’m going to feel if I have three things going on at the same time!!
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Sorry to hear youre having to get another op but good that they picked it up so early to go back in. Hopefully itll be sorted soon.
I was put on letrozole straight after my op. Theyd already put me on zoladex so i didnt think starting letrozole was too bad.
When they first tried to suppress my hormones with zolazex i got hot flashes & found sleeping really difficult. I was told to persevere for 3 months, which i did, and my sleep is now back to normal.
All the best for your surgery
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Hi
This gives me hope. I’m told they are deferring my radiotherapy. Just might be that they are waiting to see how I settle.
Tiredness is a real bummer, but if it is the only of the side effects I experienced on doce & carbo, I’ll be delighted 
. Never thought I’d say that!
Keeping my 
for u & will DM u. Anax
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Hi Ladies! 
I’m 2/14 in now and had two very different cycles. (My history is Docetaxel+Phesgo & EC, mastectomy, 3 weeks Radiotherapy. I also have ME, Fibromyalgia, Under Active Thyroid and a few other autoimmune issues, which bean I don’t work.)
First cycle I felt ROUGH! Headache for 8 days that nothing would touch, horrid nausea (not as bad as with first chemo but bad enough), muscle and joint aches, extreme fatigue. After 10 days I didn’t know how I was going to cope with 14 cycles of this stuff, that everyone was describing as “chemo lite”.
Second cycle I tried a stronger anti-nausea which worked - I feel like I don’t have crushing nausea for the first time in nearly a year! I’ve had 3 migraines (which I am prone to) but I know how to deal with them and they were sorted with drugs and an early night. I had two 5 hour naps the first two days but after that my energy has been high. I can honestly say this cycle has been a breeze compared to everything else.
I don’t know if cycle 1 was a shock to the system, I had a bug or just how it goes sometimes. Or maybe cycle two is a blip?! I’m told this chemo is extremely unpredictable from cycle to cycle so I guess it’s a wait and see each time?!
Not sure if that’s helpful to anyone?!?!
Good luck though ladies! xxxx
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Thx - really helpful. Unpredictable sounds somehow better. . At least there’s hope that next cycle could be better - the hope might keep me anchored to the 14 cycles (not much else will).
Good luck to our small, but growing club 
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Hi Ana,
Your treatment sounds almost identical to mine. 6x docetaxel and carboplatin (plus phesgo) followed by lumpectomy. Still have radiotherapy to go. As there was still a small area of remaining cancer (after an excellent response to chemo, shrinking down a 60mm tumour) I have to go on Kadcyla. Expect to start that maybe in November, as I first need a bit more surgery to get a acceptable clear margin.
Also happy to ‘buddy up’!
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Hi guys
Well first Kadcyla cycle on Monday. No premeds etc, just usual blood test. Was told tolerated much better.
So far all good. Holding my breath & waiting “for the other shoe to drop”
Sent home with anti-emetics & anti-diarrhoeal. Mild nausea, controlled. Bit tired & napping. Otherwise ………
Ana x
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How are you all doing?
all “well”.
Ana xx
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Hi Ana , my diagnosis / background / tx are similar to yours… How did you get on with your 12 Kadcyla?
ive had one stopped for 15 radiotherapy then will recommence.
Dear all- I have experience a dull ache in my anus when sitting / lying down… a ’ feeling, no other disturbances. I’ve seen my GP and having a fit test , bloods and a PR exam tomorrow.
I can only think its related to Kadcyla muscle/ ligament aches , has everyone else experienced this?
Thanks inadvance everyone.
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Hi blueladybird. I’m all finished now & all excellent - cancer free & fully back to normal. I had 3 cycles before my 15 radiotherapy. I was feeling good. No symptoms, maybe a little more tired than “normal me”. I didn’t stop while undergoing radio. By cycle 5 I had increased tiredness; I found I needed more rest & sleep when I did more. I also started with nausea & acid stomach (big problem during my neo-adjuvant), effectively managed with medication. As treatment continued, I was OK, but side-effects increased. All mild, but present in hindsight: brain fog, loss short-term memory, cramps & joint ache, periods of exhaustion, platelets gradually decreased, nails on hand a disaster (clipped & filed daily!). Bloods generally OK. I was able to have my Covid spring jab. By cycle 12 I was generally “deteriorated” in a general mild way; just felt old & in “poor health”. It was decided that I did not require cycles 13 & 14 originally scheduled. I was & continue on daily Letrozole (which I tolerate brilliantly). My last cycle was end of May ‘23 & by end August ‘23 I was fully back to me. I walked Two Moors Way (107 miles) over 10 consecutive days with 3 friends. Only left over are finger nails - they need daily moisturising & filing regularly. So courage & if nothing major surfaces, hang-in there it is transient. Thinking of you- keep your eyes on that spot of light at end of tunnel, I’m there waiting to welcome you, you’ll gush out before you know it, back to you. 
