Delays, delays and delays...

So our frustrations have been at heightened level yesterday and today.

They just took him back for the re-do biopsy, and I am finally getting to update everyone. 

So after 2 hours on the phone yesterday and 3 or 4 calls today, here is where are are. 

TAPUR - trial 1 for the immunotherapy 

They were trying to get a definitive diagnosis of MSI-High for his tumor. His genetics say that it is. But all pathology reports only say Probable or Most Likely. 

In order to do this, they were testing his biopsy from 4/11. Well yesterday, Hayley informed me that there was not enough sample to complete this. She immediately jumped to action by submitting his info and everything to the trial sponsor's tumor review board to get him approved without having to do another biopsy. They could possibly review his case this Thursday or next. 

Beyond grateful for her, but not satisfied with waiting possibly that long, I called BCBS. That conversation did not go well, as anyone in the office can tell you because they all heard me raising my voice and slamming the phone down. Bottom line there, they haven't decided if they will approve the treatment because "they were missing information - His physician's notes, previous diagnosis, etc." I was livid as I know this is not true. 

So I called Dr. Morris (his oncologist). His triage nurse was fabulous!! She discovered that the pathologist that reviewed his 4/11 biopsy for MSI-High was trying to get his original sample from his tumor last year. And she told me to talk with Dr. Morris about what options there for treating him with something now. 

After speaking with Hayley and a fabulous friend at MHTW, his original sample should be here today. 

Then later yesterday, I contacted a friend with connections with the sponsor to get help in Alan being reviewed Thursday. 

So right now we are still on hold for immunotherapy. But this morning we managed to change his appointment with Dr. Morris from Friday to today so we can cram it all in. 

ACTolog - trial 2 for T-Cell treatment

Since Alan's mucinious tumor doesn't seem to want to give over enough sample, we have major concerns about doing the same procedure the same way and garnering the same results again! Soooo we pushed them to do something different. 

They are going to take the biopsy from the second tumor to see if it will have better results. So right now I am calling on my prayer warriors to pray this tumor is benign or if not, to GIVE IT UP. We need good samples. 

Thank you!