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.
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