Hi Jhoops, there has been talk in the group before from people who are on Tagrisso, so I am bumping your post so hopefully someone will come along and chat with you about this x
“Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
just seen your post. I was diagnosed with lung cancer in April this year was really shocked as I just thought my shortness of breath would have been a chest infection. During April to July I felt ghastly breathless very fatigued and quite depressed. I started Tagrissmo in July I was very apprehensive as I usually won’t even take paracetamol! I was told at my consultation that I was very lucky to meet the criteria for this drug. I like yourself posted on here and a lovely man Scotch Steve responded and gave me hope as his results had been great whilst on it.
I’ve been taking it since July and did get a skin reaction on my face and neck a few weeks later which wasn’t nice but I was seen straight away at hospital and give two creams, they stopped tablets for couple of weeks. Good to say skin skin cleared after 2 weeks and I restarted Tagrissmo on slightly lower strength.
Well Joops I gradually started to feel so much better, breathing improved energy improved which to date is still the same. I had a scan and went for results which were positive (I’m very not knowledgeable about type of my cancer as think I’m so scared of it all, I’d rather now know!) They told me there was a definite improvement though to my previous scan, which was so reassuring.
I had another scan yesterday which I get results in November, always apprehensive what you’re going to hear.
I hope this has helped Joops and I hope your lovely mum gets good results too I will be thinking of you both. She may not get skin reaction not everyone does but believe me they help with it if she did.
I too have a daughter who has three children and she was devastated when I got this diagnosis and I can see by your post you’re travelling this road with your mum bless you. Look after yourself too Joops it’s important. I can honestly say I’ve had the best September and October just being able to walk (oh and have my appetite back, forgot to say with my fatigue etc. I lost my appetite) and feel well.
I don’t know future I really do day at a time now wish your lovely mum the best and hope tablets help her too,
Hi Barby5. Thank you for your reply. Really nice to hear how others cope on it. My mum went today to have a mask fitted. They are giving her SRS on the 11th so she'll be coming off them for that but then back on them plus still taking the steroids. Really glad to hear that so far they are having a positive affect for you and I hope they continue to do so. Like you say it's taking each day at a time. Some days she's quite tired and down but others she's good so I make sure I get her out.
Hi Barby. very interesting to hear your experiences with Tagrisso and quite similar to how i got on. I was also shocked at my diagnosis especially as i'm a fairly healthy eater who was walking about 4 miles twice a week. It was a relief to hear i was eligible for Tagrisso but unfortunately I ended up being admitted to hospital after 8 days with a chest infection, fever and very upset tummy. Plus liver problems. I was also covered with a rash. That was 2 weeks ago and i've now started it up again but on a half dose, 40g instead of 80, so fingers crossed i can tolerate that. I don't want to know my prognosis. It's scary enough anyway and i've got a loss of confidence. I'll be very interested to hear how you get on and i wish you well.
Hiya jhoops, I'm on my 4 month of tagrisso, known also as Osimertinib, I had no side affects the 1st month but rash on my face on the 2nd cream soon cleared that up. I also had not very nice spots on my chest which again cleared up after a few weeks. My latest side affect is soreness round my finger nails so I'm drinking loads of water to keep me hydrated, but overall I'm doing well on this medication. My wife said to me treat this tablet as your friend. One last thing after only 2 months my tumer had shrunk from 24 to 16.
Hi muffin break, thanks for replying. My mum is doing OK so far as well, a little upset tummy and dry skin but nothing she said she can't handle. She feels lucky to be on this drug as strange as that sounds. Thats amazing that your tumour has shrunk. She has a scan next Friday on head as she has brain mets as well, she had SRS for that so hopefully be good news for both.
So sorry you took such a bad reaction to Tagrissmo, I too was prescribed 40mg after my skin reaction. I was very apprehensive and “tuned in” to everything in my body but pleased to say I was fine on 40mg. The nurse called it baby Tagrissmo which I felt reassured! After two months my Doctor changed my dose to 80mg. one day and 40mg. next day mainly because I was so scared of going back on full dose. I have been fine on this dosage, still have energy and bloods o.k.
I had the results of my scan (done in October) a couple of weeks ago and there was a very slight improvement, the Doctor advised me to go back on 80mg which I agreed to so I start them soon.
Do give the 40mg a try Maryy, I’m glad I did. I hope your body tolerates the smaller dose better will be thinking of you. I am very slim so wonder if straight on 80mg was too much for my body. Your Doctor has your best interests at heart and obviously thinks you will tolerate the lower dose, fingers crossed you do.
I know what you mean about loss of confidence nothing is the same is it, but ride the bad days and enjoy the good days I wish you well Maryy and truly hope these tablets give you quality of life back. I don’t come on here very often but you are welcome to contact me if ever you want to.
