Are there withdrawal symptoms?

Hi Lindylou

I’m so sorry to read that your meds are no longer working.

I actually don’t know the answer to your question but I’m interested to find out the answer as I start on Osimertinib tomorrow along with Denosumab injections for my bones.

i was diagnosed in January with Non Small Cell lung cancer, it had already spread to my spine and lymph nodes when I was diagnosed , I had no clue. I do have high hopes for this therapy though as its success rate is very good in stage four cancer patients but it’s handy to be forewarned of any pitfalls that might occur. What  I do know is that mouth ulcers are one of the drugs possible side effects. It could be just coincidence that you’ve got them just as you’ve come off them.

sending positive vibes, take care

best wishes Jools

Thanks Jools.  It was good while it lasted as it allowed me to travel again and I’m grateful for that.  Good luck with your research on withdrawal x

P.s.  Hi again.  A while back I contacted MacMillan support about this and just got an answer! The nurse responded’Side effects from Osimertinib can develop even when the treatment has stopped’. It would also explain why my nails started to look stronger a few months back and gave gone back to being brittle again.  For me it was a relief to find out it’s hopefully no more serious than that.  At the end of the day I got through the side effects originally and I now know what to expect

Hi  Lindylou

Thank you, that’s handy to know, I’m definitely a little apprehensive to start and any treatment I receive is also purely Palliative but it doesn’t mean we’re off anywhere just yet though does it. I fully intend giving this my best shot and they can throw what they like at me so long as it keeps me here with my hubby, kids and grandkids as long as possible.

As for side effects I’ve been on arthritis meds for thirty years and some of the side effects described for Osimertinib I already get anyway so hopefully I’ll cope with whatever new ones I get.

ill soon find out anyway won’t I.

sending positive vibes

take care 

Jools x

I was on the super high dosage of steroids for only a week in an attempt to sort the platelets out and they were the WORST side effects I’ve been through since this all started.  I remember saying to hubby that I hoped I wasn’t going through it all for nothing, I was unfortunately unlucky  the haematologist got me off them .  Doc was planning for me to have a bone biopsy  tto see if there was any other reason for the platelets but thankfully decided not to put me through it.  It wasn’t going to achieve anything and just cause me more stress and pain.  I’m starting to think the referral tthey made for me to the local hospice (I’m not going anywhere yet) was one of their best decisions.  We went there a couple days ago as I was offered complementary therapy. I had the best Indian head massage. Got a grand tour of the day centre too. Every one we met, spoke to, passed was always smiling which was a change from usual medical environment. Even hubby was smiling by the time we left and he hasn’t smiled like that for a long time 

wish you well xx