I went in this morning and got my labs drawn. For those of you have missed a couple posts, I am trying to get into a study that will give me access to a promising new drug called Ibrutinib. The hitch is that I currently have Graft vs. Host disease and one of my liver enzymes is higher than the study parameters allow.
We are actively treating the Graft vs Host disease, and the enzyme is coming down pretty steadily. Last week I had it tested 3 times - 173, 168, and on Friday it had dropped to 143. The number that we need to hit for the study is 107.5 or lower. So, seeing that it had dropped by 25 pts between Wed and Friday, we were pretty hopeful that I would hit target today.
I did not. My lab reading this morning is 110. Arrgh! So. Since we only need another 2.5 pts, we are testing it first thing tomorrow morning. Unless there is something else going on, it really ought have dropped a good 5 to 10 points over the next 24 hrs, and everything should be able to go forward according to the MUCH delayed plan "A".
Plan "A" consists of driving to Burlington, getting into the Ibrutinib study, getting my first pills and getting the lymphoma back under control. I am really hoping that tomorrow goes without a hitch. It has been many weeks in an odd medical limbo, where I clearly need treatment - since I have been in relapse and without treatment since early August. (That is a little bit of an overstatement because the effects of the Donor Lymphocyte infusion has been doing quite a bit to keep the lymphoma from really taking off. It is just not enough to bring me into remission, or even keep me even. So I have been slowly losing ground).
So, that is what I know as far as this morning. It is likely to be different tomorrow, but that is just how this period of limbo seems to be playing out. Whatever happens tomorrow, I expect that I will be on some definite plan by the end of the week, whether that is the Ibrutinib study or we have to go back to "light" chemotherapy. The chemotherapy will prohibit me from trying again for the Ibrutinib study for at least 8 weeks, but in the scheme of things, I am sure that it will all work out.
I will try to post an update tomorrow, as I get more info.
Love you all,
Leif
We are actively treating the Graft vs Host disease, and the enzyme is coming down pretty steadily. Last week I had it tested 3 times - 173, 168, and on Friday it had dropped to 143. The number that we need to hit for the study is 107.5 or lower. So, seeing that it had dropped by 25 pts between Wed and Friday, we were pretty hopeful that I would hit target today.
I did not. My lab reading this morning is 110. Arrgh! So. Since we only need another 2.5 pts, we are testing it first thing tomorrow morning. Unless there is something else going on, it really ought have dropped a good 5 to 10 points over the next 24 hrs, and everything should be able to go forward according to the MUCH delayed plan "A".
Plan "A" consists of driving to Burlington, getting into the Ibrutinib study, getting my first pills and getting the lymphoma back under control. I am really hoping that tomorrow goes without a hitch. It has been many weeks in an odd medical limbo, where I clearly need treatment - since I have been in relapse and without treatment since early August. (That is a little bit of an overstatement because the effects of the Donor Lymphocyte infusion has been doing quite a bit to keep the lymphoma from really taking off. It is just not enough to bring me into remission, or even keep me even. So I have been slowly losing ground).
So, that is what I know as far as this morning. It is likely to be different tomorrow, but that is just how this period of limbo seems to be playing out. Whatever happens tomorrow, I expect that I will be on some definite plan by the end of the week, whether that is the Ibrutinib study or we have to go back to "light" chemotherapy. The chemotherapy will prohibit me from trying again for the Ibrutinib study for at least 8 weeks, but in the scheme of things, I am sure that it will all work out.
I will try to post an update tomorrow, as I get more info.
Love you all,
Leif
Will hope for a big drop in points -- so that there will be plenty of Burlington enzyme parameter wiggle room.
ReplyDelete*crossing my fingers*
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