I haven’t written in a while as James has been on a sarcoma rollercoaster.
First, we went to Bethesda, MD for the NY-ESO-1 immunotherapy study after he was weaned from chemo for 3 weeks. He had extensive lab work and studies done, met with several research nurses, a social worker, a fellow and several doctors. We were told that he would come back in a week (if he met the criteria) and his T cells would be cloned and grown. This process would take 4 more weeks (in which you had to be chemo-free for on top of the already 43 weeks chemo free). James was already starting to bleed in his lungs at that point. They stated that they would call back in 4 days to determine if they were going to accept him. Unfortunately, James was not accepted due to his history of bleeding (he is on his third pulmonary bleed). The study initially gives you an enormous dose of chemo (not to shrink the tumors, but to wipe out your immune system), which depletes your white blood cells as well as your platelets (which you need for clotting). It was decided that the trial was too dangerous for James in relation to his pulmonary bleeds. James was devastated.
We returned to Fletcher Allan Hospital in Burlington, Vermont where he was coiled in 10 separate areas for bleeding. He did not stop bleeding bright red blood for a week and lost 12 pounds. He continues to cough up old dark blood left over from the great pool of blood that accumulated in his left lower lobe.
Second, His Dr. has placed him on a clinical trial with ALISERTIB (MLN8237). It is a pill form Aurora A Kinase inhibitor. It has shown promise.
If this does not work, it is back to Doxirubicin. My heart is heavy for him as well as all members and people afflicted with this demon. I pray for all of you every night. I am so sorry for what you go through every day.
Thanks for sharing Ellen. I looked into Alisertib and found the results of a phase 1 trial and a phase 2 trial for some other types of cancer:
https://ash.confex.com/ash/2011/webprogram/Paper37605.html
http://www.ncbi.nlm.nih.gov/pubmed/22772063
His platelet count may drop with this drug. Hopefully they can give him transfusions if it happens...
Good luck!
I love you Mom. We'll do everything we can for James. I spoke today with another lab that is doing modified T cell therapy and they agreed that it was too risky for James. I have a few new names of PI's who may be able to help, I'll call you tonight.
Thank you Elodie.