liverstrong
Forum Replies Created
-
Posts
-
We had a nice trip to see relatives for the holidays. Blood drawn while we were traveling showed a bit of an increase in bilirubin. Last Wednesday, Sean went to NIH for his weekly blood work. His bilirubin had increased significantly in just the week since the last draw. The primary investigator met with us and told us that it was apparent that the drugs were not helping Sean and that he would be removed from the trial. The NIH team recommended setting up hospice immediately.
We met with hospice on Thursday and initiated those services.
On Friday, we met with Sean’s oncologist. He felt we should try to “rescue the liver” and, if there was any success with that, explore some other options regarding direct therapy. Sean received an infusion of oxiliplatin and began taking twice daily xeloda.
-Tim and Julie
Thanks, Marion.
Sean was having trouble with balance and confusion. They think it was due to some meds not the protocol. He had his CT scan today. There was not improvement, but they feel it is worth continuing with the trial and he will receive his immunotherapy infusions tomorrow.
Thanks again,
Tim and Julie
Sean had some complications and ended up being admitted to NIH today. He was not able to get his scan or his third immunotherapy treatment. We are hoping he will still be able to receive it. He will probably be at the NIH until Friday.
Tim and Julie
Melinda,
I give up. I can’t seem to find my forum e-mail inbox to open your e-mail. Can you point me to where I click for the inbox?
Tim
Hi Melinda,
Sean will be getting a scan and his third immunotherapy treatment on Dec 14th. We live in the area so maybe we can meet up with you while you are at the NIH on Dec 15 or 16th. We are hoping to go and see family over the Christmas holiday so we will probably miss you when you are here on Dec 28 and 29. It would be wonderful to meet you.
Tim and Julie
Hi Melinda,
Thanks for asking about Sean.
He had his second infusion a couple weeks ago. He is scheduled for a biopsy next week and a scan and third infusion the week after that. I suppose we’ll know more when we see the scan results, but in the meantime, he seems to be doing very well. His bloodwork looks good and his numbers have been stable since getting on the trial.
The only side effect we have noticed is a small dry skin rash. Aside from that, he is tolerating it very well.
-Tim and Julie
Marion,
He hasn’t had any side effects. Just dealing with the normal pain and nausea that was present prior to the trial. He had a four month chemo holiday prior to the trial. As that was coming to an end and we were waiting to get on the trial, his symptoms started to return.
He had the TACE procedures while he was undergoing first line Gem/Cis. I think the last one was in May. They were not part of the trial. Because Sean is one of the first 10 in his cohort, he will just get the combination of the two drugs, not the ablative therapy.
Thanks again,
Tim and Julie
Marion,
The study number is 16-C-0135. I put the wrong one in my earlier post.
Thanks so much for your encouragement!
Thanks for the responses.
Sean was pretty miserable for a couple days after the first TACE. About a week later, he went back into the hospital for 4 -5 days due to severe dehydration and a fever. We’re not completely sure how related that was to the TACE procedure. He may have had a virus. The 2nd and 3rd TACE procedures involved a much lower dose. He doesn’t feel great now, but nothing too bad.
We had genetic testing early on. They were unable to identify any known mutation. At the time, they seemed to be focused on whether there was an inherited gene and whether we should be concerned for our other children. We didn’t discuss targeted therapies.
