Lung cancer

Hiya I start my treatment next week , going to be given a tablet which I got to take every day. Its called Osimertinib. Fingers crossed  

Hiya I've got my treatment plan it's a tablet called Osimertinib one a day fingers crossed. Hope you are OK chelle

Hi Muffin break, I am glad you to hear you will be starting treatment next week. Osimertinib is also called tagrisso. There are a few people in the group on this targeted therapy. I have heard good reports from people on this drug, so I am sure you will do well on it. x 

Hi Muffin Break,

Just reading through your post and noted you are due to start Osimertinib, as Chelle notes there are a few of us on here on targeted therapy – in fact there seems to be somebody new every week!

I'm also EGFR+ and have been on Osimertinib for just over a year, so can hopefully can give you some reassurance and happy to answer any questions you may have.

I'd had no real symptoms pre diagnosis (actually diagnosed almost by accident) other than a bit of a sore back, which was gone a couple of weeks after I started on Osimertinib.

Obviously we all react differently to different medications however Osimertinib is largely considered to be one of the more gentler treatment pathways v’s say chemo, immunotherapy or radiation, side effects are many and varied and  generally mild, though not always. I personally have been extremely fortunate that the worst I’ve had was a bit of acne like rash after about 3 weeks that lasted a couple of weeks and that was it.

A top tip I'd give you with Osimertinib is to drink plenty of fluids (water, juice etc) as it has a tendency to dry out your skin, which can lead to cracked hands & feet etc but if you take on plenty of fluids this will help, prevention being better than cure & all that - I drink about 3litres of water a day (6-8 glasses starting as soon as I get up).

I note you say you are active and had some concerns about the impact of any treatment on this, again everyone is different and whilst I believe some people do experience fatigue on Osimertinib I don’t believe it is as common as say with chemo and I personally have not experienced any. As a young (47 yr old) fit never smoker I was always very active pre diagnosis, regularly cycling and running, due to the fact that my cancer is completely asymptomatic, doesn’t affect my breathing etc I still do both of these activities regularly and I have no apparent impact on my energy levels. My oncologist said to me that being fit stands you in good stead which I guess makes sense, so hopefully that will be good for you too. It’s worth mentioning that to begin with straight after diagnosis I sort of thought I was really ill (obviously I am, but physically never have been) so I actually stopped doing any activities (other than walking) for about a month, this got me down so I decided to get back in to my cycling slowly and what a mental boost that was and then started running again, so if you can I would recommend trying to continue your existing activities, even if initially at a reduced rate as for me it keeps me feeling normal.

To date I have found this forum useful to read and pick up information and other peoples experiences etc, and have gained some good re-assurance from this. Whilst there are now an increasing number of members on here taking Osimertinib, there is also actually a specific EGFR+ UK charity that has a private Facebook page that I have joined, I would highly recommend that you also look to join that too, obviously by it’s nature there's a lot of people with similar diagnosis & treatment experiences etc which I've found really helpful and think it may be beneficial for you too, a great source of EGFR+ specific info and a friendly place to ask any questions re. treatment, side effects, next steps etc.

Good luck and all the best.

Steve

Hiya thanks for that reply, it's made me feel alot better. I actually start my treatment this wed and you have made me feel more reassured. Let's hope Osimertinib keeps working for you and myself. My wife also feels alot better after reading your message. Thanks Steve 

Hiya just one question how long was it before the tablet kicked in ?

Hi,

Really pleased that's given you both re-assurance I remember when I was diagnosed my biggest fear was not knowing what was going to happen, I'm a bit of a control freak and that really bothered me! There are a lot of people who have been on Osimertinib for extended periods of time (7+ yrs in the States) which is great (though  it doesn't always work for everyone), not least as there is so much research ongoing at the moment and there are quite a few newer drugs on trial too.

In terms of how long did it take to work? I didn't have any actual symptoms (diagnosis background is in my profile) I'd had a bit of an on/off sore back & sciatica pains previously which it turned out was due to mets in some vertebrae, from memory that discomfort was gone within a few days and certainly by the end of the first week - so I guess pretty quickly. Though obviously we are all individual with different levels of disease etc, so if you don't see a change straight away don't worry too much, generally they book you in for a scan 2 months after you start so they can see what's happening.

Steve

Thank you you have been very helpful, and I hope other people on this site who are on the same treatment will find comfort from reading your message. I will let you know how I get on with the treatment. Once again thank you Rob