The Story So Far

Well, my CT Scan in February showed that the chemo worked on the outlying tumours but had zero affect on the maain tumour. So they stopped the chemo and suggested I might want to think about a phase 1 trial.  So off I go to Sloan to see the Dir of trials and was told that untill the bleeding in my neo subsides and my levels stabilize, I'm not much of a candidate for a trial.


It is a bit scary knowing that you are the guinea pig here -I could be the first human being to have been given this drug!  Wow.  Anyway, he said there are 2 trials he has that would be a fit for me, and one might actually work on the tumour!  Get a load of that. Both trials are targeted agents rather than general chemo and apparently the results show a little quicker.  So I have an appointment in 2 weeks and if all is well, and no bleeding, I can start the process.  As I was still bleeding, nothing can be done for now.


After that I went to a checkup with my surgeon, different building now (Sloan is all over the city) and, at my insistence, they check my blood to find the hemoglobin at 5.7 -a wee bit low.  So they flush out the neo and get that running clear -loads of old blood- then send me off to urgent care for the transfusions.  So then I have to go through the process there and we finally got back home 20 hours after we left the previous day. 


On chatting with the urologist I told him I'm in a catch 22 with this bleeding and trial.  See, here's the prob: the tumour is pressing on the neo bladder and probably creating a friable surface, which by it's nature will tend to bleed, and the only way to reduce the bleeding is to reduce the tumour which requires chemo or some drug, which I can't get because of the bleeding.  So I am hoping the trial director, my urologist and oncologist are all going to chat and come up with a plan to get me started on something.  


Meanwhile, I'm not about to sit back and let this cancer consume me because these people can't figure their way out of a paper bag.  So as a back-up I have a referral to an oncologist in NY Presbyterian/Cornell. And it so happens someone I know is being treated there and has shown more than 50% shrinkage over 6 months with Docetaxel and a phase 1 trial drug -unknown name, just a number. So who knows.  I see the oncologist at Cornell, but again, I need to have my levels higher than what they are and the neo bleeding under control.


Back to Sloan I go this month to see my oncologist and he suggests a round of radiation to the bladder to seal up the surface and another round to the tumour to reduce it and pull it away from the bladder might be in order.  Went to see the radiology doctor at the local Sloan facility and have been tattooed and am ready to go with radiation, hopefully starting next week.  I really hope this works as I am living from transfusion to transfusion.


That's it for the next month while I have the radiation.


Be well to All,
Chris