Week 35

The week started with a check in with the surgical team and getting the report from the surgery apparently it was more difficult that they anticipate but everything now is doing well an I am healing well still on restrictions for 6 weeks. This was followed up by a visit the Physical Therapy to evaluation the Foot Drop. The end result is that I urgently need to see Neurology, which is scheduled for January, but we are trying to get it moved up the foot no longer moves in 2 directions making it difficult to walk I end up tripping on it often now. The symptoms are worsening as the weeks go on. This week was another Chemo week so fighting through that now, the key feature for the week was a PET Scan that we completed. This was taken 8 weeks after we started the new treatment program. This was an important one as it will tell us if the new treatment is working or not. The result from the scan were mixed. Some of the lesions that were previously seen were reduced to background values so that is good news. Unfortunately, several new lesions are showing up and the main tumor is growing again this is the bad news. We wanted everything to be shrinking but since it is not this tells us the new treatment is sort of working but not completely, this was….is disheartening news. The doctors want to continue with the new treatment for 6-8 week and then do another scan. If at that point we are not seeing better results we will move the Level III (currently we are at Level II) on the treatment scales, I believe this is the last level we have before we start looking at clinical trials. Obviously, this is not what we wanted to hear, basically in 8 months we have gotten no further than when we started, still doing damage control barely keeping up with the cancer, this is hard to accept and discouraging.

As noted, before this is a very rare and a very aggressive cancer so little is known about it, as such we are learning as we go but for now, we’re still in the state of limbo trying to just hold it at bay with moderate success.