I also get frequent muscle cramps in weird places due to Kadcyla -- under my rib cage in the front and back, in my neck running up to my jaw, in my feet, and in my lower left side -- yowza, they all hurt when they happen! I also have a little muscle weakness in my left knee. I feel like I get the whole pu pu platter of side effects at some point after infusions -- insomnia, dry mouth, neuropathy (now better controlled by the doctor doubling me up on Gabapentin), etc., but it's all still better than my earlier chemotherapy which caused continuous diarrhea.
Bumping up for Mackers.
I was on Kadcyla for 4 months back in Oct 2016, it wasn't too bad as far as I can remember. The reason I came off it was because I reverted to HER2- so it didn't reduce my liver mets.
I am still here after 7 years with SBC & currently on capecitabine(my 5th different chemo).
All the best with your treatment.
I’m sorry I didn’t reply to your message, I’ve only just seen it. I think my email notifications must have stopped getting through. I’m still doing OK on Kadcyla, although my most recent scan shows a tiny bit of change, so we have to see what the next scan shows. They’re not changing anything yet.
I haven’t really been on the forum for ages so I don’t know how you’re getting on. I really hope things are going well for you on Kadcyla. I will have a scout around and see what I can find. Im surprised your onc has given such a bleak outlook if the Kadcyla doesn’t work - there seem to be so many different treatments, I hate to think you’ve reached the last suitable one.
Wishing you all the very best Kelly, take care
I'm about to start Kadcyla for peritoneal Mets and wondered how you are doing? I haven't had much success with my treatments, my cancer seems smarter than the meds, only getting 16 months from herceptin and pertuzumab. Quite scared that I'm at the end of the line as my onc has given me a matter of months should the kadcyla not be successful. Beat wishes, Kelly x
Hi ladies and Rohit in particular,
i haven’t posted on this thread for a while and thought I’d give an update. I’ve been on Kadcyla for three years next month, and it has successfully been controlling my mets (peritoneum and ovaries, and resected liver). I was HER2+ from the start and I think we can assume the tumours still are. It’s very surprising to hear about ladies whose tumours have changed to such an extent that the treatment approach has had to change too - how very frustrating.
i still get all the side effects I mentioned below, and I too get a strange cramping feeling in my lower ribs, like Nicky mentioned. But the side effects haven’t been severe like your mum’s, Rohit, and I don’t think her response is common. Although the first couple of doses were the worst, I seem to remember.
As far as nausea goes, this has always been a problem, and I’ve tried every kind of anti-emetic. At the moment I have gone back to Ondansatron, but I take it about 20 mins before the Kadcyla and keep taking it for 48 hours solid. Before, I was taking it only once I started to feel sick. This seems to have made a big difference and it feels more under control, so watch this space. I have heard people say before that it’s important to get ‘ahead’ of nausea but somehow never made the connection....
i finally decided to take ill health retirement from my job, and oh boy, it’s wonderful! I’m definitely still in the honeymoon period as I only stopped just before Christmas, but I’m loving it so far, and it’s made treatment so much less stressful as I’m not worrying about taking time off work, and stressed with the travelling and time commitment around the clinic and chemo days.
My onc has just advised and we have decided to reduce my dose slightly as the neuropathy in my fingers is getting worse. I’m a bit anxious about the risks of reducing the dose, but at the same time I can’t afford to lose more fingertip sensitivity as I’m hoping to do a design degree next year that involves jewellery making, silversmithing, pottery and textiles (my big dream). It’s a difficult balance and the first time I’ve had to make a d3cision like this I.e. quality of life over potential risk of faster progression. I hope I’ve made the right call.
love to you all
Hello Rohit( i've shortened your name hope that is ok), this is a shocking story. Has your mother a breast cancer nurse you can discuss the side effects with? i have not taken this medicine, i know it is new, but there is sure to be someone on the site who has, More likely on the primary breast cancer site because i don't think the NHS provides it yet for thos of us further down the line in England. Hopefully soon though.
if no joy google the pharmaceutical company that makes it or telephone them, they should be more than happy to explain all side effects to you. GP should be helping also??
hope this helps
My mother was diagoned with 3+ stage breast cancer in Jul'16 and has gone through couple of round of Chemo, Radio and got her breast removed. During the initial level she was put on Chemo + Herceptin but due to wrong treatment she was not given any hormonal treatment. Hence sadly her cancer got metastatic and it got spread into her lever and bones.
So she had another round of Chemo from Mar 18 along with Perjeta. But Perjeta did not work on her and now the cancer has stated moving into her Lungs.
Now Doc has suggested to put her on
Im not currently on a list for surgery etc as we're still trying to work out if Kadcyla is doing a complete job for me! I've had my first scan and mostly I am responsive to it but an area in my lymph nodes has shown up which we are investigating. I am pestering the Drs at The Marsden for second opinions so they must be getting fed up with me - I am currently treated at my local hospital but would transfer there if Kadcyla isn't working.
On another note I also get the burst capillaries - they look great on your face don't they?! Sometimes they are elsewhere as well and if I accidentally scratch myself I manage to make them bleed which is frustrating.
I also get odd muscle cramps but usually around my ribs, but I had this also on Herceptin and Perjeta. Another thing is that most of my blood results are good, especially wbc and neuts but my platelets take a hammering immediately after the infusion. I think this seems to tie in with the tiredness which I get a couple of days after the infusion which is also when I get some nausea. As I saw on your other post I take domperidone which is much better for me that metaclopromide - the wierd spaced out drug!
Nicky that's good that surgery/RFA are still a possibility for you if you respond well to the Kadcyla. Let us know what response you're getting when you have a scan. You must be due one quite soon?
Katie I'm sorry to hear your fingers and toes are so painful. Is there anything they can do?
Hi there, I hope Jeany has found us on this thread.
Ive been on Kadcyla for a year - had my 19th treatment yesterday. It makes me feel very nauseous for a few days and the anti-emetics don't seem to make any difference😕 But it does seem to be working and keeping my peritoneal mets stable.
Helenspain mentioned on the other thread the tiny red spots she's getting on her chest and arms. I've got them too, like burst capillaries, but on my face and chest. I get such a dry mouth too. I was given a mouth spray but the effect only lasts a few seconds so I just sip water instead. The other problem is I already get eczema on my hands and this gets really painful with the treatment. I think where there's already damaged skin the drug leaches out into the surrounding tissue.
I will stop moaning in a minute! I just want to get it all down... I've also got neuropathy (toes) and get really tired.
On the other hand it's working, I'm really grateful to be on it, and it's working for me. I'm still working and able to exercise. The plus side definitely outweighs the negatives!
Do other people get cramp in weird places (like in a tiny muscle in my jaw or in my neck when I yawn...?)
all the best to all of you
A quick update from me. I have had a couple of cycles of Kadcyla and am due my next one this week. Fingers crossed it will work as well as for those ladies who have been on it for years.
Although I can't have surgery/RFA at this point when I had my liver biopsy done last week the radiologist said it is still a possibility as long as my disease gets under control again. I'm not holding my breath, unlike when she was doing the biopsy 😉,but at least it's not been ruled out. I asked for a biopsy as my HER2 has changed before and although I don't expect it to happen again (in fact going from HER2+ to HER2- is very unlikely according to the Prof at The Marsden) it was worth the discomfort to get an up to date pathology of my SBC. I also went to see the Prof yesterday, for a second opinion, and it was good to hear there are other treatments I could have if Kadcyla fails. It is one of ours fears that we have run out of options but it sounds like there are new drugs being trialled right now for ladies such as ourselves. Admittedly you would have to go to one of the hospitals where they are being run but it is a bit of a lifeline. By having a biopsy done they will be able to access my results and run their own tests on things such as HER2 mutations and some other things, which I really can't remember, to see what regime would be appropriate. He also said that none of these newer drugs were available when I saw him 2 years ago so progress is being made.
Hope everyone is doing Ok.
Yes Carolyn, entirely agree.....greed of some drug companies....they hold the NHS by the short and curlies and over the lives of people !
Just saw this Kate...thank you. May well persue . Am also aware that my wig hair gets n my eyes, so that doesnt help!
Thanks for the link. I have signed the petition to help other ladies who may need this drug.
Sue - thanks for asking. I hadn't got back and updated things on here as it's all been a bit busy what with treatment and of course Christmas. I had an MRI to see if my liver was suitable to have resection but unfortunately, rather than one rogue lesion, it showed up some other tiny ones that the CT hadn't picked up (I think under 2mm a CT won't show them). Therefore it didn't make sense to have an operation with all this going on so I started kadcyla about 10 days before Christmas. I must admit I struggled for a bit with SE's notably nausea which I was hoping I wouldnt get on about day 5 - up to then I had felt OK, if a little bit 'off' which is how I felt when I started Capecitabine a few years back. I will make sure I have some anti sickness prescribed to take home next time around although I did actually have a few from ages ago which I took when I needed to and they helped. Tiredness was not too bad especially as I was dashing around getting the last few food bits in time for Christmas, next time I hope I can rest a bit more if needed. So we will see how things go and fingers crossed it does it's job, I expect I will have a scan after 4 or so cycles.
Good luck to everyone on this drug, let's hope it stays on the list for all those who need it - or gets put back on if it's removed as Pertuzamab did.
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Oh dear Carolyn....how sad for all these ladies! Perhaps we should start a petition! Or maybe a march to Downing st?
when the weather improvesxx
Ah, no not rude at all.....am on my fourth chemotherapy, which seems to be working well....it does dry my eyes out ( but have dry eyes anyway, due to fuch's dystrophy) I do find the optrex helpful, it refreshes the eyes. i also buy very expensive drops to hydrate them. But its best to check before using stuff, just in case.
I have liver and spinal mets.
best wishes for your treatment.
love and hugs,
Hi there..pop into a pharmacy and see the pharmacist...I get very dry eyes on Eribulin, and often wash out my eyes with optrex eye wash, it seems to help.
as you are on Kadycla I would just check with the pharm...inBoots I find they are excellent( not the girls behind the counter)
love and hugs, Moijan💚💚💚
Good luck for today Helen. Hope you are not too tired after the treatment, or recover as quickly as possible if you're. take care, catch you soon. Xx
Hi Katie - glad you also are feeling Ok after your first Kadcyla and hope you don't have any side effects creeping up on you!
This is still a treatment I could start - even this week if the MRI results show I need it- so I will keep an eye on how everyone is doing!
i know, it is a real shock when this hits you. Hope it helps to realise there are a lot of us who have been around a long time and quite a lot who have had mets a long time. My initial diagnosis was in 2001( having been missed the year before) i was diagnosed with mets in around 2013' but think it was likely there beforehand. You will hear from ladies who have had mets for a very long time.
It is frightening....but what you have to do is to tread water for a while and then as you get over the shock you will be able to get some of that confidence back.
there are lots of new drugs now and lots of trials, sotry not to let the fear take hold.
do keep posting and let us know how things go...we are all here for you,
No, I hadn't seen the Independent but thanks for mentioning it. As for me I am now having an MRI scan and have been offered both RFA or resection. Decisions decsions. The MRI may show which is the best treatment option otherwise it might be up to me - never a good decision to have to make your own treatment choices! I have seen the recent/bumped up thread about resection vs ablation but both seem to have pluses and minuses. I would need to ask lots of questions before deciding and even then need to confirm that the CDF will continue to fund H and P. I managed to receive it last time even though the CDF had agreed to funding for Kadcyla, maybe it will catch up with me even though I have never had the drug itself.
Hi Sue (I remember your log in name well!)
That is very interesting and I'm just wondering if something similar may happen to me as we (well, my onc) has obviously flagged up my change of treatment to the CDF as he has requested I move on to Kadcyla. He had actually prescribed it as well, just ahead of my appointment with him last Thursday but changed the prescription once we had discussed the next steps ie biopsy and/or surgery. I had H and P last Friday, as I have been having, but not sure what will happen next. I have not had my appointment for The Marsden yet although it has been requested by my onc. I have had a second opinion there on two previous occasions to check/confirm that the treatment I am on is the right way forward so I am familiar with seeing Prof J there but get my treatment locally. I shall bear in mind what you have said and see whether your scenario is mentioned when I have my appointment or whether I'm told by my onc that I can't continue with H and P now I've had some progression (I know the only case for staying on it is if it has progressed to the brain from what I've previously been told). According to the last scan all bone mets are stable and healing and as far as I can tell from the very brief report on the last CT all other liver mets have gone, it's just one that has increased in size rather than a new met. If I have surgery to remove it it would be a similar situation to yours where you had breast surgery to remove the lumps.
I will update on here once I know what's going on but wish you all the best with Kadcyla and you don't get the side effects that are reported on here. A lady I know who has had it for about 2 years now doesn't seem to get anything other than tiredness for about 24 hours after the infusion, something I had hoped for once I'm on it, but now not so sure from what others have written here. As with you I would also be frustrated that a treatment option is used when an existing one, plus maybe surgery, would be as effective.