TDM1

Hi, Inhad chemo last year and I wrote this blog,post (Link here) of everything I wish I’d known before starting, hope this helps and good luck 

Hi Charlie53, I am due my 4th TDM1 (Kadcyla) infusion next week. I have steroids before infusion along with anti sickness meds and steroids for 3 days after infusion, no injections.

I have had SE, diarrhoea, constipation, bone pain, fatigue, headache, tingling and burning sensation in feet, face flushing and hot flushes, indigestion but have to say ALL these SE are manageable and usually last a week from infusion.

I have spoke with others who are on the same treatment who have very little SE if any.

Happy to help if I can xx

Hi Charlie53, I'm a couple ahead of KJ6 and have now had 6. I'm not having any pre-meds at all, interestingly it's never been discussed, I did have steroids plus various anti-emetics before with the first rounds of chemo (docetaxel and EC). I really hated the steroids but I'm sure I was way better off with them than without. No injecting this time round either as it doesn't attack your blood cells quite so aggressively. I'm mostly feeling OK on it, my main problem is burning sensation in feet but this doesn't happen to everyone. There is another thread called 'Kadcyla (TDM1)' where you can read other ladies experiences/join in there. I found my first dose to be the worst but be reassured, although it's no picnic, it really is nothing like your previous chemo. Good luck, xx

Hi KJ6 thank you for replying. When I had my 5 months chemo last year I was constantly ill and I wasn't good with the steroids either but for the TDM1 they have said I don't need steroids. Start tomorrow but absolutely dreading it as it is now bringing back all the memories of last year - hopefully it wont be so bad plus I'm supposed to be going away next Thursday for a long weekend. Think my biggest problem will be the diarrhoea again, last year I was taking 6 immodium a day all through the chemo and that didn't stop it. Got used to it but it just meant I couldn't plan to go anywhere. Good luck with the rest of your treatment

Thank you for replying - I will be the same as you with no pre meds or injections. I was really ill with the first lot of chemo so dreading starting the TDM1 tomorrow in case it makes me ill again. I'm supposed to be going away next Thursday for a long weekend so fingers crossed I get there as this was arranged before I knew I was having more chemo. I'm also not sure what to do about work as if its only half as bad as last year I doubt I will be up to going back till this has finished. Good luck with the rest of your treatment x

Good luck tomorrow, I am hoping your experience with Kadcyla will be vastly better than with the previous chemo. I was advised with work to see how I got on with the first 3 before making any decisions, there's plenty of ladies that do work on Kadcyla but part of it may depend on what sort of job you do as well as how your body copes with it. I've just started doing some hours this week . All the very best tomorrow, do send an update on how you are doing, xx

Hi Charlie53, I totally get you, I had 12 weeks of diarrhoea with my last chemo and I was having that chemo weekly. I had the same anxieties as you starting Kadcyla which of course seemed to add to my SE Once I knew how I would feel after each infusion the SE become tolerable and manageable but like I say in my previous post there are people on Kadcyla that don’t have any SE. We can do this  Good luck and like Dokur Kingfisher says please keep us updated xx

Hi KJ6 and Dokur Kingfisher - had my first one yesterday - took 3 hours which I wasn't expecting. Was nearly in tears on my way there as it brought back so many memories of last year's chemo. Have felt a bit sick since but taking anti-sickness regularly which is keeping it under control. Feeling pretty rough though, light headed and headache and weak already. With last years chemo it didn't actually hit me for about 3/4 days. Need to motivate myself somehow as off to my brother in laws 70th birthday party this afternoon. Are either of you having the 6 monthly bone infusions. They said I will have my first one on my next session and that it would probably leave me with symptons a bit like flu. Good luck to you both with the rest of your treatments xx

Hi KJ6 - sent a reply to you and Dokur Kingfisher at the end of their last post xx

Hi Charlie53, well done on your 1st infusion the 1st one is always the worst in my opinion and is always longer as the nurses need to monitor you for any reactions, I am not on bone injections but I know Dokur Kingfisher has Zometa injections. Maybe the same injection as yourself.

Hope your brother in law has a lovely birthday and you have a lovely time celebrating it

Take care xx