Just started on Osimertinib (Tagrisso)

Hi OmaniDragon, Sorry I don’t know about Osimertinib, but just wanted to welcome you to our group. Am I right in thinking this is a tablet form of chemo? Im sure someone will be along who has knowledge of this treatment for you. 

Take care 

Thanks Chelle. Hoping that its going to be effective (at least for 18-20 months), feels like it's working already.

Yes, it's a tablet, but a tyrosine kinase inhibitor (TKI) not Chemo.

Wikipedia: It is a third-generation epidermal growth factor receptor tyrosine kinase inhibitor.

Hi OmaniDragon

I'm on Osimertinib I started on 1/8/20 and its working for me very well .....I had a video Call from my Oncologist today he said my tumour is getting smaller. 

It was the size of a jam jar lid and now it's the size of a Tee light candle...

I will stay on the same treatment till February. But will have a Scan in January/February followed but another consultation. 

It has made me feel really good I got my appetite back Breathing is not a problem...i can blow 400 on a peak flow meter....its a good medication for me.

Hi I have just been reading your link .....it seems it an old article. 

You can read the more updated information on the internet. As this medication has only been sanction by Nice in the last 3 years and it has been noted with a 96% success rate I was told ..

Thanks Matman, glad to hear you are doing well.  I have been impressed so far with the medication as well.

In 2 weeks, I’ve been erally happy with my recovery.  I’ve pretty much stopped coughing / bringing up mucus, and my body has recovered well – to the point where I’ve started some work at home and I am doing a 30-40 mins walk every day.  I’m still quite wheezy when doing things -I had a partial lung collapse as well as the tumours/clotting- but that is also improving.

So far, I’ve not had any of the side-effects apart from some spots on my face, but only a few.  So I am feeling that it’s working really well.

First check up this week, scans in another 2.

PS: The old article was simply the Wikipedia reference.  I’ve seen more recent articles, but still confused a bit about my long-term prospects, as I was told the cancer gets immune to the Osimertinib in time.

Hi OmaniDragon,

I’ve just seen your post so thought I’d share my experiences of Osimertinib, which have been good so far!

I’m also recently diagnosed (June 2020) completely out of the blue with NSCLC, I had zero symptoms – a swollen ankle which I thought was a sprain was actually a blood clot, a chest x-ray to see if it had travelled detected a tumour, the following CT’s/MRI’s brought more findings, liver & bone mets & one very small 6mm brain met, so Stage 4!
Like you I am EGFR+ (exon 19 deletion) and was prescribed Osimertinib starting mid June, so been on it for 5 months now.
I’ve done a fair bit of background research on it and you may already know this, it’s a third generation TKI, it’s been on the go since c. 2015, however until May 2020 because of cost the NHS would only prescribe it as a second line treatment ie once any initial treatment had stopped working. From the end of May this changed which has allowed people like us to get it as our first treatment option, this is fortunate as from what I have read it appears to have a better efficacy than the 1st & 2nd gen TKI’s, in particular it appears to be better able to permeate the blood brain barrier so in theory it is more effective on any brain mets, plus it also will continue to work (to a point) if the cancer mutates a bit, historically you would be on a prior gen TKI until the point of mutation then they would give you Osimertinib, additionally the potential side effects also appear more minimal v’s the previous gen TKIs, though obviously this can vary greatly from person to person.

Side effects wise for me all was good for the first couple of weeks save for the odd pimple on my face, then in wk3 I had what I can only describe as a massive outbreak of acne like spots literally all over my head, really inflamed and fiery to the point that I was waking myself up some nights as I rolled over in my sleep, my lung cancer nurse recommended E45 Itch Relief cream which worked really well, I think as well as moisturing it also has some kind of topical anaesthetic too. All in all I probably had c. 1 wk of really bad spots followed by c.1.5 wks mild spots, but relatively speaking not really an issue. Other than this I’ve had no other side effects, no noticeable tiredness and my energy levels have remained unchanged etc. I'm very lucky as being completely asymptomatic I’m still running 5km 3 times a week and cycling between 50-80km at the weekend, both of which I find great from a mental well being perspective as ironically keeping fit has always been a big part of my life!

Benefits wise I’m fortunate that I’ve never had any actual noticeable symptoms so I’ve got nothing that has changed as it were though psychologically I felt a massive boost when I started taking the tablets, I’ve had my first set of three month scans which have been really positive, the brain met has completely gone, the primary tumour in my lung has reduced from 2.2cm to 1.4cm & the spots in my liver & vertebrae have all reduced so it is clearly working which is great.

I have my bloods checked every month prior to being given my next months worth of tablets as I’m sure you will be too & all has been good, however at the start of month two they told me that I should also be having a monthly ECG as Osimertinib can potentially have an effect on your heart, (I’m very unclear as to what exactly), on account of my underlying fitness my consultant was happy for me to have the ECG every two months, these have been fine until last week when I apparently had an abnormally low heart beat, because of this I have been asked to come off the Osimertinib for a week and have been given a heart rate monitor to assess what is “normal” for me without the medication as unfortunately they never did a baseline pre medication ECG. I’m hoping all will be well and I'll get back on to it this Friday as so far it has clearly been effective.

I hope it all goes well for yourself, feel free to ask any more q's as I'm happy to share my experiences.

Steve

Hi Steve

An excellent and informative response & more importantly, an incredible physical response - really well done!!!

Stay Strong

SiT

Thanks Steve, that's really encouraging, and detailed. I appreciate you sharing. 

I'm off for a check up now, and will respond in full later.

Can't wait to get back on my bike!

Wow Steve 

This is very informative I only started Osimertinib in August and doing well apparently. 

I had Skin side effects Spots on face / head / hands / feet but nothing antihistamines and Zerodurm didn't fix.

I cant find alot of information on the Medication as it's only been around for 5 years in USA /4 years in Europe/ 3 years in Scotland and 2 years in England...So no one has been able to to a 5 year study on it.

But saying that I does seem to have a 96% Success rate on some Cancers.

I can't fine out any information on how long you can take Osimertinib for and or what could happen if you so taking it. 

Will the tumour come back quickly/ slowly or stay the same .....how long would that take etc etc ...

I hope they sort out your heart out and you continue to make great progress 

Keep fighting 

Matman

Thanks Steve, as I said, its good to hear your positive story, I hope it keeps improving for you, and the heart issue isn’t serious. Your experience has made me feel better about becoming more active again, so I really appreciate you sharing.

I got my diagnosis in October, after 6 weeks of gradually increasing coughing (got prescribed some antibiotics midway) before I finally got hit by a partially collapsed lung, could hardly breath and had to go straight into hospital.  I had quite a mess at the top of my right lung, and some carry-over into my left and lymph glands, so was called as stage IV. Started on blood thinners which I think had just started making a difference before the Osimertinib has started kicking in as well.

Been on the Osimertinib since early Nov, and so far it’s been fine.  I’d also read up a bit, and saw that it was very effective on the cancer but also worked on the brain as well.  During the latter part of my coughing I started getting some odd feelings and slight loss of control in my left hand – which I didn’t tie to the cancer as I have thumb-tendon issues anyway, but it now appears it probably is related to the cancer.  I’ve not been for a head MRI yet, too much coughing to be still for 30 mins, although I think I am booked in for one just before my 1-month review in 2 weeks.

Over the last 2 weeks my breathing has continued to improve, though I’m still quite wheezy, but I’m now really benefitted from sleeping properly.  I’ve been walking the dogs for 35-40 mins each day now and will gradually up the pace.  I haven’t risked any real exercise yet, I hope to start some light stuff next week.

To combat what seem to be the main negative side-effects – diarrhoea, mouth sores and upper-body/face rashes, I am dosing my upper body with Diprobase each day and using a non-alcoholic mouthwash, had no issues with bowels yet at all.

So far I’ve just started getting a bit spotty around my face, and my arms are itching, but no other side-effects.  As you said, my energy levels are coming back and I feel more or less normal again.  I’ve been checking my heart rate on my Wahoo Tickr and so far it’s been high, but seems to be fairly steady otherwise.  Like you, the docs have said my fitness should mean that I don’t get as affected, if at all by any heart issues.