So Wednesday was a date day at MDA! All in all it was a great visit on some lingering side effects. Have another visit on Tuesday for a different doc and set of side effects. While downtown we tried to see Dr. Morris about the CT DNA Test results and trial! Unfortunately we didn't get to see him but we did end up getting a call this week.
So two key things for all of us to remember. As of this moment all cancer was removed with his MOAS on 10/17. Second, we have no reason to think he has active cancer.
Dr. Morris, AKA Dr. Dude, has been Alan's oncologist since we first got to MDA in 2017 and has been fighting for Alan the whole time. A wonderful suggestion from our dear friend, Linda Nelson, Dr. Morris reminds us of Doogie Howser, he looks about 15 years younger than he probably is!
In 2018, Alan was kicked out of the immunotherapy trial because of a MDA error that perforated his bowel and Morris fought to get him back in and let the head of the trial know exactly his thoughts on the matter when he ran into her on the elevator. Also in 2018, when others on the GI Team of geniuses wanted to stop treatment due to massive pseudo growth, Morris fought to keep him on treatment! That fight allowed him to keep on the drugs and the results to show that treatment was in fact working.
Dr. Morris has consistently been the most positive and encouraging doctor of Alan's entire team over these 6 years. While Dr You (Big Sis) is a badass and Dr. Fournier (Wise One) is probably the best and most humble surgeon I've ever known, Dr. Morris always finds a way to give us hope.
Being transparent, I have to share. I struggle to believe his optimism anymore. He wants the best for Alan and for us. So in May 2017, when he said it probably wouldn't come back but if it did it would be between years 2 and 5, I believed him. In Oct 2020, when he said the remaining tumor was probably all scar tissue and if it came back, we would just hit it with the immunotherapy again to finish it off, I believed him. In Mar 2022, when he said that the low dosage immunotherapy (nivolumab) should work, I believed him. In July 2022, when he said that adding the high dosage immunotherapy (ipilumumab) should knock it out, I believed him. In Sept 2022, when we agreed it wasn't working and a resection surgery with a HIPEC (MOAS) was the way to go, I believed him.
Right now I still believe him. BUT not because of Dr. Morris. You can see from the above paragraph that he is a mere man! He is a doctor, trying his damnedest to save my husband's life. Time and time again, he is doing everything he can from cutting edge meds to the surgery to end all surgeries. He wants the best for Alan and for me and for our girls. BUT he is a mere man. And sometimes science doesn't always work. Science is simply the act of testing theories time and time again.
I believe the MOAS was the right thing because I believe in the ONE TRUE GOD. And our Lord led us through these last 6 plus years of cancer. And He isn't done with Alan or our story. The Lord isn't done using this story to bring Him glory.
So back to the call. The therapeutic vaccine trial is no longer an option for Alan. The lab involved in the trial can't seem to get the tests to run well enough on Alan's mucinous tumor. MDA can but the lab officially involved in the trial can't. So Dr. Dude has been fighting (once again!) for the last couple of months to get the lab more sample and then fighting to get results from MDA's lab allowed. All to NO avail. The additional samples failed. And it will potentially compromise this phase 1 trial to have data from another lab. So Alan is out.
Dr. Dude will continue to run the same testing protocol through MDA to keep a closer eye on Alan. To find any mutated tumor cells in the blood stream before we can even see a visible tumor on a scan. He will continue to scan and run these tests on a 3 month rotation.
BUT we aren't without hope without the trial because remember what I said we have to keep in mind. As of this moment we know all cancer was removed with his MOAS on 10/17. Second, we have no reason to think he has active cancer.
So we continue to operate as if he is cancer free. We will not discuss other potential treatment options (not that there are many). Because right now that would be living like it's back. And RIGHT NOW, it's not. We will explore those options IF we need them in the future as who knows when we might need them and if any available now will be the same IF that time comes.
It's taken us some time to get to the point of saying that. And I ain't gonna lie, I am scared. Fear is very real and hard to push out of my head. So I cling to what is and not the what if scenarios that Satan keeps bringing to mind.
We covet your prayers to keep cancer from returning. We covet your prayers to keep our minds focused on THE TRUTH of God and not on the lies of Satan.
We should know more sometime in April. In the meantime, we ask for your prayers that the side effects go away and he is able to no longer deal with them but be his whole, new normal self.
-Mel
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