The Post-PET Lowdown.

Posted on June 12th, 2008 by Cam.
Categories: Let's talk.

The lowdown is that this disease, once again, is very difficult to read. To make things a little more complicated, most of the computers were down at the hospital, so we didn’t get much time to see the results of the PET scan or the report.

To begin with, we got everything signed off for the Thalidomide regime. This involves reading through some statements and signing off on each one to confirm we understand the side effects and risks. The great news is that Dr Brad just returned from a conference in Switzerland where it was recommended that Thalidomide courses are best kept to 6-9 months. This is great news as I was preparing to be on it for the entire year. So I start that tonight.

We then checked out the report from the PET scan briefly on one of the computers that worked. The scan showed that there were areas of greater uptake in my skull and left femur. We know that there have been lesions in these places before, so we are hoping that the uptake is due to healing still taking place in those areas. I cannot feel the lesion in my skull as I did before, but I can feel something different in my femur. The difficulty is that I am not sure if it is my mind consciously registering that there is something there, therefore I can ‘feel’ something, or whether there is actually legitimate sensation.

At this stage, we are very cautiously using the word ‘remission’. Until something definite shows up, that is the best we can hope for – which is not bad at all. The indicators we are looking for include high-spiking proteins in blood/urine tests, cracking bones, bumps appearing, bone pain and anything else abnormal. So we are again in limbo. I have my next appointment in a month. I am neither up nor down.


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