I was told by my oncologist that they estimate Osimertinib is very effective when it works, and it seems to be working, but that the cancer seems to develop some kind of immunity after 18-20 months. This seems to be similar to that I’ve seen on a few websites.
After that point they move you on to other treatments as I assume the cancer will progress again [although it seems odd to me that it’s while been knocked back, it is still there and comes back later]. Maybe this is just that they don’t know enough about what happens in the long-term with this treatment. As ScotchSteve says, it's still a pretty new treatment, so w elive in hope...
I'm glad your response to the medication is good the side effects I had was like water Blisters on my face and torso small water Blisters on my head and dry skin patches on upper body. I never had diarrhoea at all ( only before I started medication)
Antihistamines and Zerodurm cream help a lot you can get from your GP .
I monitor my BP / Heart rate/ oxygen levels every day I also use a Peak flow meter all for my own satisfaction.
The Blister were not that bad really they couldn't really be seen as under the skin i just Zerodurm twice a day and take one Antihistamine aday and ues a medicated shampoo
Hope this helps you
P.s Dont forget about the Rapid weight gain side effect ......
Thanks again Matman. I hadn't heard about Rapid weight gain, so far I'm trying to eat-for-two as I'm still losing weight.
But I assume that once the cancer is reduced/stopped, and I won't need so much fuel going in, then I will need to shift backk to more normal eatig pateterns. So I may need to watch out for the switchover?
I’m a bit of a control freak so like to get into the details of everything I can, hence my long initial post!!
I’ve had a bit on since so not been back on here for a few days.
OmaniDragon / Matman – sound like you are both doing well on the Osimertinib with limited side effects, I’d not heard or suffered from the weight gain aspect but I guess it will affect everyone differently; as an aside apparently lung cancer tumours like glucose for fuel, so personally I’ve tried to cut out as much sugar from my diet as possible in the hope it all helps & my lung cancer nurse recommended eating plenty of protein.
As you both say it’s a relatively new medication so there’s not necessarily the data re. longer term benefits etc, though tbh I personally ignore any general stats, by their nature they are going to be averages of whatever the population pool is, this will reflect age, lifestyle, general health, prior medical conditions etc etc, and hence will be a broad sample which will not necessarily reflect any of us as individuals, so just because their avg. is X doesn’t mean mine will be.
There was a specific trial which looked at Osimertinib v’s other gen TKI’s, called the FLAURA trial AstraZeneca have a summary on their website, this quotes a median Progression Free Survival (PFS) of c.18months, with PFS being the point that Osimetinib has stopped controlling the cancer & hence its growing again but you’ve not died!
They also note there was something like 30% of patients who were still taking Osimertinib after 36 months (end of the trial period) – so I assume from that it was still working then too? My consultant explained it to me along the lines of our cancers have a current mutation EGFR+ (mine specifically is exon 19 deletion) which is why the Osimertinib works on it however over time the cancer will effectively build an “immunity” to the Osimertinib and effectively mutate again, that time though is very much "how long is a piece of string" and will vary from person to person etc. so lets hope that’s a long time.
On the exercise front, whilst I’ve very luckily had zero physical symptoms I was diagnosed (via a blood clot in my calf) with tumours in 4 vertebrae and I was immediately convinced my back was going to shatter and that every small ache & pain I assumed must be the cancer spreading!! Having talked through my fears & concerns with my consultant he said I was ok to exercise gently, so I started by walking about an hour a day for a couple of weeks, then progressed on to some short, very slow runs before building up the confidence in my body to go longer and be more vigorous. I was initially put on blood thinners for 3 months and told to stop mountain biking as any fall could result in a nasty bleed etc, however I’ve since been told to keep taking the blood thinners for the foreseeable future so I decided to get back on the road bike albeit carefully, I certainly won’t be out when it’s frosty.
As well as physically feeling stronger from the exercise it’s been great mentally as each week passes and I feel myself being able to do more and feel like my old self.
ScotchSteve, thanks again for getting back, tumours in the vertebrae sounds scary as hell – I’m hoping I don’t have any in my brain, but my occasionally twitchy hand probably means otherwise. It is comforting to know that you’re feeling more normal, I’ve never been a huge worrier so I’ve not had sleepless nights about this (maybe I’m still in denial?), and I do already feel that I’m almost back to ‘normal’. It’s just going to be a new normal from now on.
I’d also read that there were many long-term survivor stories, and I am encouraged by that, it’s the old ‘not-knowing’ bit that’s annoying me still I guess. But like I said a high degree of uncertainty is just part of my new normal now.
My cough’s almost gone now, just have a wheeze when I breathe, which is easing as well. I won’t know how bad/good the lung collapse is for a few weeks, so nervous about cycling again, but I am walking 45-60 mins a day now, and will start some light weights this week. Easing my way back. But I would feel that for my mental health, as well as helping the fightback against the cancer, then getting back to my old levels of fitness is a must, if not more. Also I’m happy knowing that there are positive stories like yours out there.
On sugar, I was trying to follow Macmillan advice and BUPA (https://www.bupa.co.uk/health-information/cancer/eating-well-cancer)... “It’s generally a good idea to limit how much sugar you have as part of a healthy, balanced diet. Eating lots of sugary foods can lead to weight gain, which is a known risk factor for cancer. But this doesn’t mean you should cut down on other types of carbohydrate such as starchy foods like bread, potatoes and pasta ”. So it’s probably sensible to cut down the glucose a little, but one of the nurses told my wife that it was ok to feed me up with cakes and chocolate, and now I’m struggling to hold her back!
I’ve just got back to my usual weight 78-80kg again after a dip to about 75kg when diagnosis / treatment started, so am looking to maintain that weight level by doubling up the intake levels rather than more crisps, cakes and chocolates etc (which I’d always kept to a minimum – unless on a ride). I feel my muscles have wasted away a good bit, so I have upped the protein intake, and will keep this high, and reduce the volumes if I see the weight getting up again.
Hi, I know this is a bit of an old post now but I've recently started on osimertinib so thought I'd say hi! Spots outbreak has been the main side effect so far, felt like my face was exploding, steroid cream and tablets have brought it back under control. I hope your treatment is still going well?
Touch wood after c. 10mths all still seems to be working for me, good reduction at first set of scans and stable ever since which is great. Side effects wise after my initial major outbreak of spots at c. wk3 everything has calmed down save for the odd pimple now and again on my face. Due to a low heart rate I was taken off Osimertinib for a couple of weeks and given a heart rate monitor to wear for a few days as they were wanting to see if it was being caused by the medication, but fortunately turns out it wasn't, so that was good & I got back on it.
