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started Kadcyla today, anyone else on it?


Re: started Kadcyla today, anyone else on it?


ive been on Kadcyla for over 3 years and still doing well, touch wood!

i have it every 3 weeks and find it very tolerable. Much better than previous chemo treatments. It's not without side effects but they are pretty trivial- numbness in my toes, some mouth ulcers, rather bloodshot eyes, and some tiny red spots on my skin, particularly around my chest and upper arms. But I'm very active, managing a small holding, doing yoga etc. Long may it continue to work.

Community Champion

Re: started Kadcyla today, anyone else on it?

Hi jeany

There is another Kadcyla thread on here which is a bit more up to date - it is a minefield sometimes trying to find a thread s the search function probably throws up everything! There are more of us posting on this other thread. I'll see if I can 'bump' it up for you so it appears higher up the list of latest threads.

I started Kadcyla in December and should be having my 3rd one tomorrow - I say should because I'm always wary until I've seen my oncologist with my blood results! As far as I know steroids aren't usually given but maybe your hospital does, or your oncologist thinks you need them? As this is a drug not given at most hospitals (because there's so few of us in general having it due to progression with HER2+ BC that has become resistant to prior treatments of Herceptin etc)  sometimes the oncologists and chemo nurses don't know what the protocol is for giving the drug. Ours didn't regarding timings, the 1st is over 90 mins but subsequent ones can be given over 30 mins if no adverse reaction is observed with the 1st one. 

Good luck with the treament and have a look at the other thread.

Nicky x


Re: started Kadcyla today, anyone else on it?

Hi how are things going with the kadcyla.jeany

Re: started Kadcyla today, anyone else on it?

I started kadcyla yesterday and was surprised when I received steroids through the cannula  before treatment has anyone else had this.regards jeany ,Sheffield.

Re: started Kadcyla today, anyone else on it?

I'm starting Kadclyla on 10th Sept, so happy to be getting this drug xx

Re: started Kadcyla today, anyone else on it?

I also have a port like a malteser just below my collar bone which I've had since January. I'm glad I have it but the insertion was extremely painful. A nurse did it and I don't think she was experienced at all, the worst part was all the injections. I felt them all and they should have waited for the first to take effect and then worked around the area.
I was on herceptin for a year until march when my lung mets were growing so I was put on Kadcyla, I've just had a scan and they're stable, but I'm concerned about headaches on the left side of my head that I wake with most days. Herceptin and Kadcyla molecules can't cross the brain stem, but cancer cells do.
For me side effects of Kadcyla are tiredness, I can't get through a day without resting especially during the week after the drug, but I'm so grateful for my cancer drugs fund funding for this.

Re: started Kadcyla today, anyone else on it?

Oh I should add that I had a power injectable CT port fitted in June and it's been fab.

Treatment a doddle now cause my veins too are shocking (5 years of needle sticks)


Had my first CT with it last week and the contrast went in without a hitch and I didn't feel a thing.

It's been fitted into the dimple in my breast left by the WLE and totally hidden from sight, rather than look like a malteaser under my chest skin haha

Re: started Kadcyla today, anyone else on it?

Hi everyone

I started Kadcyla in March, Had dose no 7 last week.

I have no SE at all and look and feel well.

I have to have bloods done and actually be in the chemo unit before they order drug up for me, due to cost, but thats fine. Just glad to get it.

I had a scan last week again to check how it is working and the tumor in my liver has vanished. Hooray!

Good Luck! xxx

Re: started Kadcyla today, anyone else on it?

little update


i had my 3rd kadcyla and all ok apart from delays in treatment on the day,

as they wanted to check i was feeling ok before they gave the go ahead due to the cost of it!


next week is nbr 4, then i have a CT scan on 28th of this month,

to see if its working......fingers crossed it is x

Re: started Kadcyla today, anyone else on it?

Hi Porkie, Sue, Homer,

Thanks for replying re Ports and Kadcyla,  I feel much better about things now and am having port fitted on Friday to start chemo next week and its good to have your positive feedback.

Hope you're all getting on well with the treatment.


Thinking about you and sending love

Laurelle    x

Re: started Kadcyla today, anyone else on it?


i understand what you are saying, if the herceptin is doing its job why change

thats the only thing that niggles my mind when i think about it

As i was on herceptin when mine came back a couple of years ago


my onc must have faith though and i trust him with my life...


my 2nd kadcyla is due on wednesday, tomorrow is pre chemo bloods

i will let you know how it goes on wednesday x

Re: started Kadcyla today, anyone else on it?

As Kimi said I do have a port - still have :). I have had it for about 7 years now I think. There are newer ones around now called power ports and I think more can be done if you have that type like contrast dyes which I can't have put through mine. It is less common to have it put in your arm. Most are done on your chest front - some high just below the collarbone, and others lower in the breast tissue if you have not had mastectomy. Most people with a port think they are the best thing since sliced bread :). They only need separate flushing if they are not accessed regularly. As mine is used every 3 weeks for herceptin and zometa it is flushed after that. I have been interested to follow your kadcyla thread because my consultant mentioned putting me on this drug. The dilemma I have is that if I wasn't happy with it there would be no going back. I would not be able to go back to herceptin on it's own. He admitted it would be a funding issue and there is a lot of confusion around it - a lot of grey areas. I don't know if I want to take that risk, it isn't as if herceptin has stopped working for me and I have been on it now for more than 10 years. My nurses told me that I was their longest surviving patient still on herceptin.




Re: started Kadcyla today, anyone else on it?

Hi Laurelle - I am not on this drug but I do have a port. I had it fitted in February this year prior to starting chemo at my request because I am not very good with needles and really didnt want a pic line. The port is in my arm and I was very nerbous when it was being implanted but I was fine - they did it under local and I did not feel any pain at all. It is very easy now to have bloods taken or infusions - just a pin prick when they access it. It only needs flushing once a month which is also good news and apart from a bump on my arm (I have thin arms) is no different to what it was like before. The main downside I have had is that I have lymphodeama in my other arm so having blood pressure taken is difficult because they need to use my leg and lots of nurses are not aware of this. Also I believe when I have a scan they cannot inject the cntrast into the port so think I will have to have my viens accessed in my foot which sounds painful! I am going to go to the doctor before and see if he will prescribe emla cream for me - local which is usually used for children! Hope this helps and good luck.xx

Re: started Kadcyla today, anyone else on it?

Hi Laurelle
Kadclya also known as T-DM1 is Herceptin (the T) linked to a chemo therapy which attacks cancer cells but leave other cells alone. From what I've read it does have side effects but not as bad as chemo for most people. It was only added to the CDF (cancer drugs fund) in February. It's the expensive drug that was in the news a couple of months ago. It will be my next drug and I was so excited when I heard it was going to be possible to get it.
Good luck
Sue x

Re: started Kadcyla today, anyone else on it?

hi laurelle,


i know what you mean about finding info on kadcyla, at least we have found a few of us on here now

so we can help each other, and compare notes!


my veins are also very bad, they have been stabbed since 2005 so no wonder they are awful now,

my onc says he will see how i get on but i may also have to have a line put in,

i did mention it to the girls in chemo and they told me they will try their best to canulate me for a long

as they can to help me avoid a line.


i dont think my hospital do ports, as that would be my choice too,

i think dawnh has a port or she did have.


keep in touch x

Re: started Kadcyla today, anyone else on it?

Hi Kimi

Am due to start Kadcyla in 2 weeks but no one seems to have heard of it, although my onc said it was a new  chemo.  I've already had FEC and Taxoterre and my veins are now getting  almost impossible to work with so next week I'm having an implantable post fitted.  It would be good to hear from anyone who has one as I'm feeling a bit apprehensive although I realize it makes sense.

Hope you get some feedback on Kadcyla,

Take care

Laurelle   x

Re: started Kadcyla today, anyone else on it?

hi della


thank you for your reply x


i am pleased that you say you are doing well 12months in,

fingers crossed it works for me too


my onc told me that my bloods will drop on this chemo,but as i have only had one treatment

i am not sure when to be careful yet!

i have an appointment tomorrow to see the nurse led clinic that used to be called j-tox,

so maybe she will give me an idea.

next kadcyla on 9th july


kimi x

Re: started Kadcyla today, anyone else on it?


I've been on kadcyla for just over a year. The first cycle was the worst with flu-like symptoms for a couple of days. My onc said that, as this chemo doesn't mess with your immune system as badly as some, it was fine to take paracetamol (not so much worry about it masking infection by bringing down your temperature).

Since then SEs have been fairly limited. I get joint pain (nothing horrendous) and have to take anti-sickness meds for the first day or so after each treatment (but that knocks the nausea on the head).

Good luck with it!

Della xx

Re: started Kadcyla today, anyone else on it?

well one week in nearly! and side effects are dare i say ok........


not feeling so sicky when i get up,and bone pain has gone to as it was before

fingers crossed its doing its job xx


i wish i could walk to the beach in 15mins, i love nothing more than watching the sea


kimi x

Re: started Kadcyla today, anyone else on it?

Hi Homer


Hope the side effects are wearing off now. I don't check on here every day but I will pick up any messages if you want to send a private message with any queries.


My groin pain has almost gone,  I rest my case, will make a point about it at my next appt.


Glad you had a good couple of weeks in Cornwall.  I live near Portreath on the north coast, I can walk to to the beach in 15mins!!  Lived in Cornwall all my life so really don't apreciate it as I should,infact my daughter lives near London and I love the buzz up there and look forward to our girly weekends!


Take care



Re: started Kadcyla today, anyone else on it?

Hearthi fudge,

1st let me say im envious if your forum name means you live in cornwall

i go down as often as possible infact i have just returned after 2 wonderful weeks.


 thank you for your reply, its hard finding much info on uk sites about kadcyla,

its so new over here.


SE sound alot like what i was getting on the trial chemo cerabel i have just had to stop,

due to it failing, it did keep me stable for 2 good years though.


last night after my 1st one, i did get pain in everybone in my body, and my temp was a little high

not high enough to have to contact them though! lucky for me!

and this morning i woke feeling a little sicky.


kimi x


Re: started Kadcyla today, anyone else on it?

Hi Homer


I've been on this since end of Feb.    Last scan showed some shrinkage and stable disease.    Very doable,I don't know what you have been on before.     Flu like symtoms about two days after, last about 24-48hrs.  I have just had a break (Herceptin sub cut only) as side effects do build up although it is a targeted treatment. Also another side effect is muscle/ligament pain, I'd strained a groin muscle out jogging just after I started and it has lasted 3 months,  it is finally easing having this break.  I also had a toe nail removed and it became infected so antibiotics prescribed,  break is giving it time to heal. I don't have any sickness but a lack of appitite for a week or so!  Not bad for me as i eat too much anyway!!!   Basically although it is far better SE wise be aware they are there.  Don't be afraid to mention anything you think maybe caused by it.   Dose can be lowered.


Good luck with this drug, you may not have any of the above, everyone is different.  





started Kadcyla today, anyone else on it?

as per my title really


i started kadcyla today so far so good


im just looking for anyone else on it, who can tell me how they are feeling


hope to hear from someone soon xx


kimi x