Mackey Mouse
Me read the Navigator? I don't
- Joined
- May 21, 2000
I do not know where to begin so I will just blurt it out. We had bloodwork done, scans, and doctor's appt today at MGH. Our Doctor said well I have good and bad news....he always says that, and I was expecting him to say it is in his lungs, it is in his liver, but what he did say was that it was no where other than the original node in the clavicle area. It was a little bigger, but he said that Tom's cancer is not textbook...he said Tom is in a 1%. Wow!!!!
Let me back up a bit, Tom's original diagnosis was ampullary carcinoma...since that is rare it does not have its own category so it gets lumped in with Pancreatic....the treatment is the same as it is so rare....so hence the Whipple procedure, chemo and radiation, etc. Then we were what we thought free....but usually that means floating metases....we had the reoccurence in the clavicle area.....so more chemo.. gemcitabine. That was really kicking the heck out of his immune system, bone marrow not good, red blood cells, it was doing a job on him....
Now we go in for this scan... the oncologist is expecting to see this cancer everywhere, that is the textbook remark. it is no where other than that node...which is a teeny bit bigger, but not a big deal.
Now we have 4 options, take a chemo holiday, as chemo really does not work on this cancer when it reoccurs, so we were just throwing the chemo at it and making Tom weaker and weaker, try a new chemo which sometimes causes numbness in the extremities....which will probably not work as they usually do not, try a clinical trial, but then who knows what you are getting....or the last option, (which I am going to push for) is remove this node and wait and see what happens taking the chemo holiday..
I asked the oncologist if Tom was his Dad and sitting before him with this questioning result what would he do....He said he would take the chemo holiday, live our lives, and then scan again in three months and see where we are... In the meantime, he is calling our surgeon, who we love, to see if he would be willing to take this node out. Seems it is behind the clavicle and a tricky place to get to, but that is what I am pushing for. One node, get it out of there..
So...bottom line, no chemo for a while, build him up, try to get that node out of there, and more prayers. When the oncologist said I am at a loss here as this is not textbook and since it is not, we cannot treat as we would if it had followed the normal course of things.....I thought in my head, if you had the amount of people praying for you that my husband has, no wonder it is not going anywhere... Things can change at any time, but right now I am taking this as a blessing and hoping to get that node removed..
Thanks for all the prayers, you have no idea what they mean to us..
Let me back up a bit, Tom's original diagnosis was ampullary carcinoma...since that is rare it does not have its own category so it gets lumped in with Pancreatic....the treatment is the same as it is so rare....so hence the Whipple procedure, chemo and radiation, etc. Then we were what we thought free....but usually that means floating metases....we had the reoccurence in the clavicle area.....so more chemo.. gemcitabine. That was really kicking the heck out of his immune system, bone marrow not good, red blood cells, it was doing a job on him....
Now we go in for this scan... the oncologist is expecting to see this cancer everywhere, that is the textbook remark. it is no where other than that node...which is a teeny bit bigger, but not a big deal.
Now we have 4 options, take a chemo holiday, as chemo really does not work on this cancer when it reoccurs, so we were just throwing the chemo at it and making Tom weaker and weaker, try a new chemo which sometimes causes numbness in the extremities....which will probably not work as they usually do not, try a clinical trial, but then who knows what you are getting....or the last option, (which I am going to push for) is remove this node and wait and see what happens taking the chemo holiday..
I asked the oncologist if Tom was his Dad and sitting before him with this questioning result what would he do....He said he would take the chemo holiday, live our lives, and then scan again in three months and see where we are... In the meantime, he is calling our surgeon, who we love, to see if he would be willing to take this node out. Seems it is behind the clavicle and a tricky place to get to, but that is what I am pushing for. One node, get it out of there..
So...bottom line, no chemo for a while, build him up, try to get that node out of there, and more prayers. When the oncologist said I am at a loss here as this is not textbook and since it is not, we cannot treat as we would if it had followed the normal course of things.....I thought in my head, if you had the amount of people praying for you that my husband has, no wonder it is not going anywhere... Things can change at any time, but right now I am taking this as a blessing and hoping to get that node removed..
Thanks for all the prayers, you have no idea what they mean to us..
...and I do think I have an inkling of how much the prayers mean to you 
with my Avery being on the receiving end of such blessings too!!
I know from experience that any small good news sends your hope soaring. Much prayers and love are sent your way.
So i gave up. Just wanted you to know I am so happy with this news, and indeed, Tommy is special
