Categories: Caring Bridge Journal
I feel that I have just been given the first shred of hope in quite some time and am anxious to share it with you.
First, in answer to the many who have asked: No, I have not yet started to have any adverse skin reaction with this latest round of vectibix. I still have the vestiges of the original rash, but it continues to slowly get better. However, be aware that after the first infusion of vectibix, it took 10 days for the rash to begin. So I won’t be in the clear for several more days. If I can make it past this next Monday without a worsening of the rash, then I hope to be in the clear.
I have just received a call from Sarah Cannon Research Institute (SCRI). Their testing found that I DO have the B-RAF mutation, which means I am an ideal candidate for a very specific Phase 1 trial (B-RAF/MEK). I was called by the research nurse at SCRI, and she informed me that e-mail communication had already passed among all 3 oncologists with whom I have consulted (Penley, Bendell at SCRI, and Berlin at Vanderbilt) and all are in agreement that I should proceed into this trial as a first course of action.
The research nurse told me that it is one of her favorite trials because
a) it is extremely well-tolerated by most patients and is one of the most benign of the trials
b) it has been shown so far to be highly successful; the majority of patients in it have seen significant shrinkage of their cancer (though more are melanoma pts, less are colon cancer)
c) it is not as time-intensive for me as the other trial they were looking at beginning with – not such long days in the clinic, I won’t be in the clinic as frequently, etc.
I have been in prayer for our next step, that God would make it clear. Just last night I prayed my most intense, focused prayer specifically about what to do next. I prayed, “God, you have promised that if I will trust in you with all my heart and lean not on my own understanding, and if I will acknowledge you in all my ways, that you will direct my paths. God, I am trusting you. I am certainly not leaning on my own understanding, Lord, because I do not understand all this. I do not understand what direction to go, whether to choose purely alternative treatments at this point, whether to stay with vectibix when my pain only seems to be increasing. I do not trust my instinct or my knowledge in the least. I am now trusting you to direct my path. Lord, I believe you will, YOU will direct me.”
And then I get this call today. Wow. God, you amaze me at every turn.
All the doctors are in agreement. There was clear physiological reason to choose this clinical trial, it wasn’t just “what’s left over” after all mutations have been ruled out. They have located a specific genetic mutation to try and affect. That is about as clear direction as I could hope for.
And to top it off, to hear that it may be one of the more easily tolerated trials? I can’t help but feel optimistic and oh so thankful.
In other news, my eating is improving. I haven’t shared much details of this on the blog, but my weight has been dropping at a rather alarming rate for the last couple of months. I just have had no appetite. However; that seems to be improving in the last week or so. I have started this week taking a specific medicine that is an appetite stimulant (yes, my home pharmacy grows and grows) and it seems to be helping as well. So more for which to be thankful…
I am one day closer today, my friends. One day closer to this battle being over, one way or another. That is what I tell myself every day. One day closer to relief.
Pray for wisdom, pray for no skin reaction to this latest round of vectibix (which would delay my entrance into this trial, as of now I would begin it in early Dec), pray for appetite, pray for “movement”, pray for pain relief.
But above all, pray for Jesus to come and take us home…