Information from Consultation 30 Sept 09

This sounds bad, but is actually encouraging. Crucially, if my lung tumours had been growing as I'd expected, I wouldn't have long left.

Results:

• Lung tumours not growing. Fluid pressure outside causing breathing probs. Can be somewhat alleviated by managing my steroid dose.  Dr Agred
  
• No point in trying to reduce my steroid dose to recommended levels (I'm on 8mg. recommended is 1.5). It makes me very ill, and isn't going to extend my life. Better to take what i take and enjoy quality of life. Dr Agreed with this.
  
• One tumour in brain. Bad news. Small. When I see the brain doctor, he will want to irradiate whole brain. I won't accept this because 1)it will make me stupider and  2)imo it wont protect against further brain tumours since seeding source is in my chest, not my brain.   I disagree with the hospital over this and I'm sure I'm right. I'm perfectly happy to pay to have the single tumour targetted with radiation. Targetted has worked well so far.
  
  
• Tumours in liver have grown. No details
  
  
• New probable tumour in spine. small. To be irradiated asap before it causes me pain or other problems.
  
  
• I never asked about the possible rib tumour that was mentioned last time
  
  
• Recommends I stop taking Sutent as it doesn't appear to be helping.
  
  
• There is a new drug, not fully approved yet, but available through special arrangement at another hospital. Doc will see if they'll treat me, and allow me to decide whether I want it.
  

This is a new doctor, Diane Tootan (can't remember but her names rhyme). She is both stunning, and one of the best doctors I've seen. Great interactive communicator.

More info from my brain doctor on 9 oct.

And ...my birthday on 15 oct. Don't forget ;-)  54 yrs - you can forget that part!

Conclusion:

• One very important good result for lungs.
  
• Lots of moderately bad results for other places.
  

Sicker

I'm sicker. :-(

I met friends in town today. I was so tired that I sat in a chair at reception and slept while they toured an antique and v interesting courtroom / public function building. After that I went straight home and slept some more.

I'm on a high dose of steroids and until last week that levelt has made me immune to the symptoms of all ailments. While on 5mg/day, I invariably feel well and healthy. Always. But uniquely not for the past 4 days.

I'm seeing my doc a week today. I suspect its a constriction in my lung that I knew had potential to happen as a 'cotton wool' tumor grew. There's an odd noise when I breathe deeeply. It will show on my recent ct scan. Maybe they can fix it with LINAC or surgery.

To

19 Sep 09

Last night we had a great evening. Each of the four of us lads had selected our top ten records. It was a revelation to discover that Alan is a big jazz fan.  And John was utterly dismayed when I presented Tommy James, Crimson and Clover as one of my choices. 

This morning I felt really ill as in a bad cold. This is very  odd - I never EVER feel ill on 5.5mg dexamethasone. I wonder if my tumours have grown suddenly. I have a wheezy chest on 5.5mg.  That level of Dex renders me immune to the perception of all ailments.

My new big tv arrived for my bedroom :-)

Tomorrow, we're off to visit Brian's ex-wife in Pwhelli. I hope I'm well again.

19 sep

t