TDM1

Hi Charlie53

i am approaching my 11th TDM1 next week due to residual cells following my surgery. Had chemo, lumpectomy and radiotherapy before surgery.

all I can say is it’s doable as everyone different. There is no hair loss with this treatment. It’s a very clever cocktail. The herceptin takes the added chemo to any stray cells if there and each do their job. We are lucky to have it as up here in Scotland it’s only been approved roughly 2 years ago for us. 
initially I started ok on it. About 4 th one in I started having neuropathy in my feet and slightly in hands. My bloods have always been ok so far as can affect liver and heart.

I got mine reduced by 20% due to neuropathy but can’t say it’s helped or not. I’m also on an anti hormone tablet called letrozole which up to now I thought was giving me terrible joint and muscle pain but realised it could be the chemo also.

I want to finish the whole 14 cycle treatment as want the best chance of keeping this away. I’m actually back at work as a nurse in NHS and I am managing on phased return and tailored around when my treatments are. 
good luck with it I’m sure you will be fine. Ask away if you need more info.

Helen xx

I’ve just finished my 11th and final Kadcyla today . Had Herceptin and Pergeta before so that is why I’ve only had 11. The Cathrine clinical trail shows that Kadcyla is more effective than H and P. It’s not long been approved for stage 3 and below as initially it was reserved for long term use for stage 4 patients.

It’s no where near as bad as standard chemo. Lots of people have no issues.

I have some neuropathy and exacerbation of trigeminal nerve (facial) issues which started when I was on standard chemo. I’ve still completed all my treatments though.

If necessary you can ask for a dose reduction but hopefully you won’t have to.

Bluebell

Amazing!! So pleased for you. I’m determined to finish mine and the past 10 has went so fast.

well done and best wishes x

Thank you. I’m sure you’ll do well. It’s worth it.

Bluebell

Onwards and upwards x

Thanks Helen - hope the rest of your treatment goes okay. I have my radiotherapy starting soon so not sure when the TDM1 will start. Saying that I have shingles all round my eye, on my head and in my hair (what little I have) at the minute so trying to deal with that at the minute first. Letrozole didn't agree with me so they changed me to Anastrozole and that didn't agree with me either - they are sorting out another drug for me instead. It's been 9 months so far and now facing this next long stint - never seem to see an end in sight.

Jane xx

Thank you Bluebell - hopefully it wont be too bad. Glad you've managed to get to the end of your treatments and wishing you all the best for the future. 

Jane xx

Hi jane

oh god , shingles! I really hope it’s not too painful as I know it can be!!

Hope you get your medication sorted soon. You will soon charge on with your treatment and each round will be on you quicker each time. When I first started on it I felt as if I was on a slow treadmill but now before I know it the next ones due. It’s something you know needs to be done so accepting it helps x