Hi Avriljayne,

That's great to hear that things are going well so far. I hope that this continues for you. Do feel free to search the forum for other potentially relevant discussions on this - otherwise hopefully you'll receive further replies here soon, and I hope that you're finding the forum useful so far.

Wishing you all the best,

Ben
Cancer Chat Moderator

Yes I have met some other people on here that are having the same treatment. I am finding the forum very helpful thank you 

Hi Avriljayne,

Hope you are doing well.

How is your treatment with TDM1 going? What are the side effects? I should do this treatment and I am really concerned regarding the side effects.

Looking forwards to hearing from you.

All the best,

Lily

Hi Lily 

well I was told the side effects would be easier to tolerate and I'm happy to say they have been. I have had 5 so far but was also taking letrozole so the side effect were impossible to tell which meds were causing them. They were nauseous chronic fatigue anxiety and painful joints and bones but these were nowhere near the levels of side effects I had on my first lot of Abraxin chemo I had 6 moths ago. After talking to my oncologist 6 weeks ago she stopped the letrozole and I instantly felt a whole lot better plus my last cycle of TDM1 she tweeted it and reduced it a little and bam I turned a corner and feel sooo much better. I have put on 1/2 a stone as I had sever weight loss and I have so much energy now. All I can suggest to you is if you feel you can't tolerate it talk to your oncologist as there are so many things they can do to improve your side effects ( if you have some). I made the mistake of not asking if meds could be changed before and just suffered for too long. I wish I had have asked before when I had so many awful side effects but I just assumed I had no choice ! Now I have learnt there are different options and we can ask the question. In my head I thought I was being difficult, ungrateful and a nuisance but that's not the truth. When I did speak up and ask the questions they were so understanding, helpful and made me feel so much better. So if you do have side effects you can't manage don't suffer in silence. The end results have been so beneficial. Meds were changed, side effects are now minimal and my emotional and mental health has improved so much. I hope your treatment goes well and some people experience virtually no side effects at all. Just listen to your body and go easy on yourself. I wish you all the best and keep reaching out and talking as that has really helped me to understand my feelings and emotions. These forums are a God send and the support and unity has been amaizing. Good luck Lily and hope to hear from you soon. Avril x

Thank you so much for your help and explanation Avril. 

All the best,

Lily

xx