Tremelimumab and Durvalumab
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Tim and Julie…So sorry to hear of Sean’s non-response to the trial. Fingers and everything crossed that the current treatment has positive results and opens the door to other options.
My heart is with you.
Hugs
MarionDear Tim and Julie, I am sorry to read about Sean’s latest update but the good news is that you seem to have a good aggressive Oncologist. I will be praying for a better outcome.
I believe that Hospice is a great help as it will ease things up for all of you and Sean will be watched very carefully. Please let us know how Sean does on the Xeloda. Many good wishes going out your way!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
Dear Tim and Julie,
I am so sorry I missed your message. I will try and email you through the forum again, and maybe like Gavin suggested checking your spam folder if you don’t receive it. I was at NIH on the 15th but it was a whirlwind trip, I ended up flying home earlier because of horrible winter storms in Montana. I came home to almost 2 feet of snow and wind chill factors of 32 below zero!!!!
I hope Sean is feeling better and that he received his treatment okay.
MelindaThanks Tim and Julie…sounds like the disease has not worsened. So glad to hear that.
I hope and wish for Sean to have a fantastic response to the immunotherapy drug.
Hugs
MarionP.S. Not sure you have heard from Melinda, but I copied and pasted your information and sent it to her.
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
Liverstrong….I am thinking of you and Sean and sending tons of good wishes your way. If you don’t mind my asking, what are the complications?
Hugs,
MarionSean 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
Tim,
Emails sent to you through the contact a forum member should go to the email address that you used when you registered with the site here. have you checked your spam folder just in case Melinda’s email to you is in there?
Alternatively, you can contact Melinda through the forum as well. Just click on her username and that will allow you to contact Melinda directly.
All the best,
Gavin
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
I would love that! I sent you an email through the forum of this board, it has my contact info. Let me know if you received it, and we can make plans. Sending lots of hugs and prayers for great scan results for Sean. Take care!
MelindaHi 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
That is great news! I will be at NIH for treatment and scans on the 15th,16th, 28th, and 29th. Please let me know if you will be there at those times, I would love to meet up and say hello. Take care,
Melinda BachiniHi 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
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