Has anyone got any positive stories with tagrisso. Mum starts it Monday. She knows it's incurable and doesn't want to be told any prognosis, just wants to take it day by day.
I've had a quick look through the forum and wanted to put you in touch with [@LilyCrystal]. They started taking osimertinib (Tagrisso) back in August so hopefully they won't mind me mentioning them in this post and will pop by when they can to share their experiences with you.
I hope all goes well for your mum tomorrow but if either of you have any questions don't hesitate to get in touch with our lovely team of cancer nurses on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m and will do all they can to help.
Just read your message and wondered how your Mum progressed taking Tagrisso as my Mum will also start in March with this targeted drug. Hope everything is going as well as can be expected.
She started off well on it then at Christmas had an infection and went down hill a bit. She had bad skin, bad tummy and lost appetite. She didn't eat for a while. She's back on steroids for her appetite now which is helping and she's on half dose tagrisso. Her doctor said it is working well. She has another scan in March.
Thank you for remembering Mum and asking. Mum is now into her 3rd week of taking Tagrisso and for the first 2 weeks fine no problems, since then she has started to find her mouth inside is very sensitive - she can't cope with feeling cold water, she is feeling a burning sensation in her lower throat and her skin on face feels sensitive after washing. Mum's appetite has decreased, still eating but only small amounts, not enjoying her food like before and really no interest. Her blood test results last week showed her sodium levels are 128 which are low, before taking Tagrisso they were 134. The Lung Nurse suggested stopping her daily Omprazole which she has been on for years and reducing her fluid intake to 1 litre a day (which is difficult as she has recurrent UTIs so she has always been told to drink lots of water and currently has a nasty UTI). Going for blood tests again this week to see if that has done the trick otherwise not sure what next advice will be - really hoping it won't be stopping her Tagrisso. How is your Mum doing on the reduced tagrisso now? Hope she is feeling ok and has she had her CT Scan? Really hope you hear good news regarding the results.
My mums skin is very dry and itchy, she lost her appetite like your mum so she went on a small dosage of steroids which really helped her appetite and her overall mood and energy, she came off them again and has quite a lot of low days so she's hoping to start them again. She does get very low and she's unsteady a lot but try to get out on good days. The scan showed everything has stayed the same so far on the 40mg so nothing has grown so far keep me updated on your mum. Hope she picks up soon x
