Still incureable

FormerMember over 5 years ago

14 replies
46 subscribers
6652 views

Hi all

I've had my break and think it's time to return to posting.

An update: When I left (I think) my drug, afatinib, was still working and I knew where I was going. Things have changed quite dramatically.

The more I write the more I believe you are aware of most of this. In which case, apologies.

The afatinib stopped working and I was being tested for a re-mutation which would involve a similar targetted therapy. At the same time I was proposed for a trial (HALT) at the Marsden. Cut a long one short, my cancer has not re-mutated and there is no obvious reason why the afatinib stopped working. The service (oxymoron) I received at the Marsden was pretty poor. In three visits I chatted with the trial lead three times and on the final visit they took my blood pressure. Disappointing to say the least. I was finally told I needed a current CT scan to see if the cancer had progressed beyond their parameters. 'Ive got a CT at Worthing on 29th April'. Clinic set for 2nd May. 'No we will do it much sooner here and get the results faster. Cancel Worthing'. I didn't.

Today 26th April, I finally received an appointment for the Marsden CT scan. 1st May!!! No way will results be ready overnight.

Meantime I have a CT directed biopsy at Worthing re the possible re-mutation question with the sample sent to the Marsden for analysis. 'Results will be here Monday' 'Err Wednesday' 'afternoon'. 'Thursday'? The reason they couldnt pass on my results is a doctor hadnt authorised it! Thats a pathetic excuse.

My oncologist is not happy and decides to approach another trial at Brighton. Keynote 789. 'Phil Ive just phoned Brighton and asked that they consider you for the trial'. 30 minutes later 'This is the trial nurse at Brighton, can I go through a few things with you and then I will email you the trial info pack'. 30 mins later pack arrives I read it and answer their questions.

My thoughts are what a complete and utter waste of my time the Marsden was and what and absolute delight Brighton appears to be.

Im back slightly worse for wear but ready for the next leg of the battle.

I hope you have all survived and are getting Worthing rather than Sutton, service.

Phil

FormerMember over 5 years ago in reply to FormerMember

Thanks Alison

Ive never been frightened in my life, except for once. I faced knives, hammers and mobs. The only time I was frightened was when a crazy amatuer pointed a gun at me. He was panicking and we just couldnt talk to him so we had no control. That's how I feel with the Marsden. They are holding the gun and waving it about and I cant gat them to talk.

FormerMember over 5 years ago in reply to FormerMember

Hi M-J

I wonder if we have the same onc ..............

obviously you can't reply here so I've sent you a pm request

'dying' to know

Sue

FormerMember over 5 years ago in reply to FormerMember

Hi Skaila

Have accepted pm so look forward to chatting x

John Boy2 over 5 years ago

Hello PhilB

It sounds like we have the same "type" of cancer - Stage 1V mutated non small cell carcinoma. On the NHS they were going to start me on Afatinib. However, I mentioned to my oncologist that I had private medical insurance through my company, thinking this might speed up the start of treatment. He then informed me that there was a new(ish) TKI/targeted therapy called Osimertinib that appeared to be giving improved results when used as a Stage 1 therapy. However NICE currently only license it as a Stage 2 therapy after treatments such as Afatinib have stopped working, so this may be an option for you. Since then I have gone private and started on Osimertinib, and am due a follow-up scan this month, so will know how effective this has been. Incidentally, the company health insurance will only fund the treatment for 12 months, so I am hoping it is available on the NHS before funding stops. To privately fund treatment would cost in the region of £60,000 per annum

Per Ardua Ad Astra