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northwest2 
5:04pm, September 21, 2009
Well, joy of all joys...the tumour is growing again. It's not growing quickly - at least I think it's not, but it IS growing. IGF-1 is up again. The digestive tract is doing somewhat better but I think that's related to the fact that I don't work anymore. I got my lay off notice and my last day was the 14th of September. I'm SO relieved. I'm not planning on working again until I figure out which direction we are going with the treatment of this disease. They keep upping my thryoid medication in addition "and" my colon is moving very slowly. I was diagnosed with an extra long colon and very very slow moving. The meds didn't help it. They seem to affect the main nerve in the stomach. Now we are looking at a possible re-section to remove some of the excess length. Maybe that will help that issue, but I wonder what we do about the acromegaly.
I'm supposedly not a candidate for any more radiation since I have already had one high dose. I was so hoping that maybe proton beam would help, but that's out the window.
The radio-oncologist wants to talk to the neurosurgeon and have an appointment with me and they want me to talk to the endo on the same day. Sounds like a pow wow. I've never managed to get 3 different doctors together in the same room. Sounds interesting.
If you have had a 2nd surgery, can you share your experience and any words of wisdom?
Comments
Hi Northwest,
Im sorry to hear that your having problems again with the tumour, my daughter had her second surgery then external beam radiotherapy, they could not get much out the second time, but the surgery was much easier, has the tumour shrunk any since radiation treatment? I hope you have a good result with your team. Hope you dont have to wait too long to see them.
spiegal