Back at The Christie

**Updated** So it’s been a week or two since my last visit to The Christie and since which time they have confirmed that my IGF1 level is out of range for remission and I’m assuming the that the growth hormone level is still out of range too.

So what’s happening?

Well next week I’m back at The Christie to see the team and at which time it’s been suggested that I will be starting on some treatment be that a somatostatin analogue or the new drug trial ATL1103 if that’s still an option.

I am actually hoping to start the treatment asap as I have definitely started to see the return of those fuzzy head sensations :(

In addition to the above, I’m down to have my next MRI in the first week of may to see if they can see the residual tumour. This last thing is scaring me more than ever and if I’m honest it’s starting to get the better of me.

Thought I was handling things well alongside my new job but the current state of play and the interference in my life is getting right on my tit tats! Positive thoughts though….

On a last note I’ve recently had a major result with my badgering ……… I caught one on my camera!

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3 Comments

  1. All set for my visit back to Prof and the team today. Tried stay as positive as I can this last few months since my operation. Think the realisation has just hit me this morning that I’m starting out all over again on treatment and i am going to just flipping well put up with whatever it brings.

    Just hope I can balance it all out with the demands of work Shit poo rubbish crap! That is just how it is today!

    • Went in and had a cracking chat with Prof and the specialist nurse.

      Treatment can’t start for another couple of weeks until I’ve had the MRI with contrast and they have looked at results.

      There is clearly some residual tumour that is active and i can absolutely feel a change. As i have seen the reoccurrence of pituitary tumour symptoms this last few weeks I was rather hoping to start treatment sooner.

      Albeit saying that i could have started one form of treatment like lanreotide but I have opted to take part in the ATL1103 phase 2 drug trial.

      I am going back in on Monday morning before work to have bloods and an ECG. Think Nurse M will also work some magic and get my MRI brought forward from 1st May 2013.

      That’s it for now. Onwards and upwards :)

  2. So this last two weeks more blood tests, met another fabulous Registrar at The Christie who gave me a thorough examination (which was rather amusing) and today i’m back at The Christie for an MRI before starting treatment.

    On the treatment front i have opted for the ATL1103 treatment and this required that a load of my initial blood tests where couriered over to a laboratory in Germany. All rather interesting.

    So after today’s MRI Prof will review the imagery with Nurse M and then as i understand it either sign off the ATL1103 or put me on another form of chemical treatment to get things under control.

    I should add this last 3-4 weeks i have definitely noticed a gradual return of the post pituitary surgery symptoms and this resulted in me being poorly at work last week.

    Had to take a few weeks off to get to grips with all this and can’t help but worry that the residual tumour is growing. Then again i could also be just worrying myself unnecessarily.

    It’s weird how these things get a grip of you.