Hi everyone and especially Helen,
ive been on Kadcyla since February this year after new spread to my peritoneum and possibly ovaries. The peritoneum has been described as the 'apron of fat' that covers your abdominal organs - delightful! I've been on herceptin for 9 years and had various localised treatments to my liver, which is now clear.
ive found it a little bit tougher than I had been led to expect, nothing 'medical', but nausea and fatigue. But I'm also getting 'anticipatory nausea' when I go into the hospital for treatment, so maybe it's all in my head! I've got some stronger anti-emetics and a mild tranquilliser that I take before I set off which are taking the edge off it. I'm still working, so now I take the day off after treatment and lie-in late, get up slowly and treat myself gently. The nausea/fatigue come and go for the rest of the week but I can go out and about, and keeping busy takes my mind off it.
At my first scan there was definite shrinkage. At the second everything was the same so the docs were happy that things are steady, but I felt disappointed cos I want it all to go away!
one new side effect is that my muscles and tendons get very stiff after the most gentle exercise (e.g. A stroll in the woods). When I get up from sitting down I feel like I ran a marathon the day before, and have to limber up in order to walk normally. This has led to some minor damage e.g.tendonitis of my Achilles as well as funny looks when I'm in a restaurant and get up to walk to the loo!
So generally the side effects are minor and bearable. I hope you (Helen and Nicky, I think) found your first treatment not too bad, and that it works wonders for you all
Sorry to see you have had progression it does hit you hard as it did me a few weeks ago. But Kadcyla is a good drug I remember when N.I.C.E was debating whether they were going to fund it because of the expense thank goodness the petions worked.
I do hope this treatment works well for you and the other ladies Good Luck
love and (((hugs)))
Hi Carolyn and thank you for your kind words - as ever. I know of a few ladies on this drug and Dawn being one of them. If I remeber correctly it was affecting her blood counts a while back although other ladies on it seem to not have too much of a problem with them.
Hi AnnieMac13. It's good to hear you are tolerating this regime well. Scan time is so full of anxiety (scanxiety!) and we all know how you must be feeling especially as this will be the first one since your secondary dx. Feel free to join in any thread, the Bone Mets one is always busy and used by many mets ladies even if they havent got bone mets. The older Liver Mets threads seem to have gone quiet recently and therefore slipped too far down the pages to see them easily. However there are quite a few of us ladies with liver mets so you are definitely nit on your own.
Fingers crossed for your results and let us know how you got on - that's if you want to - I find having to tell anyone my results more stressful than getting them (almost!)
Hi Julie, and any other Kadcyla ladies.
Im joining my good friend Helen on this new drug as I've had slight progression in my liver as well. This is after over 2 years on Herceptin and Pertuzamab. I had of course hoped this combination would have kept me stable, or better, for longer but it is what it is. Luckily Kadcyla seems to be well tolerated so it's good to have an update from you Julie and long may it keep working for you. I already chat to another lady on my chemo ward as we both have treatment on the same day and time and she has been on it for about 18 months and is doing very well, just a bit of fatigue the day after the infusion.
Finger crossed for us all.
I have been on Kadcyla for over 2 1/2 years now.....more than 45 doses so far!
I have not really had any side effects worth mentioning (tiredness, weak nails, vision a little blurry - all minor)
It has never affected my blood count.
It is given via I.V. infusion, so a trip to the hospital every 3 weeks and as the drug is so expensive the chemo ward have to wait until I am physically in the hospital before it can be requested from pharmacy.
I go the day before to my G.P. for bloods which are faxed direct to ward.
The first dose is given over a longer period and you have to stay in the hospital for a couple of hours to ensure no allergic reation. Subsequent doses are given over 30 mins, although due to wait for the drug being dispensed I am usually on the day ward for a couple of hours each time.
I don't mind the wait, am just so glad to get the drug.
I have secondaries in my bones and liver, although my liver has been tumour free after the first 3 months on Kadcyla and my bones are healing - I have Denosumab injection 6 weekly.
For me, this drug has been fantastic and I live a pretty normal life
I am 53 now and have been living with cancer for 7 years.
Good luck with your treatment,
I was on Kadcyla for 20 months until the cancer starting growing recently. i had spells of awful coughing, with a tickly cough some of the time which i didn't really notice and my husband pointed out to me. i found kadcyla a good drug for me, very effective and the only major side effect was fatigue, which may be the cancer as well. (Bone, lung and liver mets) i didn't associate the coughing with kadcyla but with the lung mets and found it to be intermittent. I didn;t take anthing for it, but I'm on a lot of opiates anyway for the bone mets.
I hope your friend is doing better now? Sorry, but I can't help re the cough.
Have just had my third treatment and haven't experienced anything like that. My secondaries are liver, are hers lung? Perhaps that makes a difference?
Sorry I can't be of any help, but you are a wonderful friend to care so much!
Please tell your friend I'm rooting for her too. xx
I'm hoping one of you will be able to offer some advice. I am posting on behalf of my friend. She is now on her 9th treatment of Kadcyla and up to now the side effects have been pretty minimal, especially in comparrison to other treatments over the past 5 years.
The big issue she's currently having is that she has this terrible uncontrolable cough. It's awful and has this week got to the point where she cant sleep because of it. I should say that up to now the Kadcyla has been hugely effective at keeping her cancer stable and long may that remain, it just seems that the effects/side effects of the drug are culmative and now, at treatment 9 the side effects are kicking in. I've done lots of reading about the drug and it's side effects and it seems that the cough is a rare side effect, it's 1 in 100. She is also experiencing some shortness of breath when she climbs stairs but as she say's "she can cope with that" it's just the awful coughing that's getting the better of her.
So far, the hospital have been slow to recognise or acknowledge that the cough is a side effect of the drug but this week they have. Perhaps it's because it's a rare side effect. She's been prescribed all sorts of things from anthistamine sprays to cough medicine but this week they have given her some codeine phosphate which apparently helps relax the gag reflex. She's has had a little bit of relief from the codeine but she is still in a coughing hell bless her. I just wondered if anyone else has had any experience with a cough on Kadcyla and if you found anything that helps?
My friend is a legend, she has the spirit of a Lion but this damn cough is breaking her spirit.
Thanks in anticipation ladies. I hope Kadcyla is working as well for you (less the cough)
Hi geordiex and phew 😅 I had hoped this would happen, that some agreement could be made between NICE and the drugs company as it appears to be such a revolutionary treatment and, selfishly, the one I'd go onto as and when the current regime fails.
How are you getting on with it? I was chatting to a lovely lady on the chemo ward last week as I have done so several times as we are there on the same 3 weekly treatment cycle. I didn't realise she was on kadcyla and she said she just feels very tired the next day but otherwise feels good, hasn't lost any hair and bloods are doing well. Hope everyone on it is doing just as well.
How's everyone doing, ladies?
I'm about half way though my second cycle.
No really bad side effects, but I feel a little bit off. Nothing I can put my finger on.............bit of a sore mouth, constant runny nose and the dreaded tired all the time.
I'm trying to stay upbeat, mainly for those who care about me, because I sometimes swear it's worse for them to keep worrying than it is for me.
Hope you are all doing ok xx
Nice to meet you! You have more "get up and go" than me, and I applaud you!
Hope everything is still going ok, Gaunts. I have my next treatment on Tuesday and basically just wait and see if it is working any magic.
Strangely, lack of side effects makes me worry that it's not doing anything.............which is very silly, I know! Got to get a grip on myself! he he :-)
Good luck to all Xxx
The first dose is a long one............for me 90 mins and then 90 more observation. All was fine, I'm glad to say! Next dose on Tuesday, which I'm told will be only 30 mins. Good luck tomorrow! If you've had previous chemo this one is definitely more gentle. Will be thinking of you.
Newbie here! I started Kadcyla on the 6th of this month. Felt really tired for a couple of days, had "flu legs" on day four, but have been pretty ok since.
My BC has mets to liver, but had been controlled after a course of Docetaxel and then Herceptin for around 18 months. The Herceptin has decided to give up the ghost, so this is our latest attack! My liver mets had gone from "barely there", to 3.2 cm in the six months between scans. Pretty scary, so hoping that the Kadcyla will help.
I am sorry for just talking about myself! It's my first post and will reply and be more interactive once I feel my feet here!
Have been reading your sometimes inspiring posts for ages, and glad to be no longer a "lurker"!
Good luck, ladies, in all that you fight. x