New Plans and the Roller Coaster Ride 3/25/08

It has been a bit of a roller coaster ride this week, plus… I found out last Monday night that my genetic markers were NOT a match and therefore I am not a prime candidate for Tarceva. This was a strong hope I was holding out for… That left us with the clinical trial option, which we set up for this Wednesday, 3/26.

In the mean time, in setting up the clinical trial base-line scans, my brain scan came back with some bad/strange news. The scan shows two active tumor lesions but there is confusion as to what exactly is being seen (meaning there may not actually be active lesions). The U of C wants it’s own Radiologist to review it and Dr. Maitland says that this changes the game somewhat… And not necessarily, entirely negatively; The brain is easy to radiate, either with whole brain radiation (broadcast to entire head) or with Gamma Knife radiation (pin points tumors only). So there was not as much concern as I would have guessed.

Next up is my pain story... Dr. Maitland recommended that we go to University of Chicago’s Pain Clinic to explore changing my pain meds/regiment. That appointment went very well. We are changing the game here, too. I switched to Methadone, which to my understanding, does a more effective job of blocking the pain receptors, enabling a much smaller dose of the drug than what I am currently taking of the Oxycodone. We started that regimen last Thursday and I can report (praise, God!!!!) that my pain has been under control for the first time we’ve been in Illinois. I am also excited about reducing my dosing on the Oxycontin IR for break through pain. I am down to only 1-2 doses and can envision the chance to finally kick this pain I have had since coming to Illinois. Yeah!

Dr. Maitland and I met again this past Monday, 3/24, to go over our new plan… More roller coaster… To start, he had two U of C radiologists review my brain scan. They all think putting chemo on hold for a bit longer and moving forward with Whole Brain Radiation is the way to go. Not happy about that, but it really seems to be my only option here. I will definitely lose my hair and there is a 50% chance that that hair loss will be permanent. There will be fatigue for sure. And there are also risks with regard to both short and/or long term loss of cognitive function, short term memory loss, impact on fine motor skills, etc… I am told I am less at risk due to my age (again, most people are in the 60’s when going through this stuff) and that I have a high level of cognitive function already, despite what my wife says…

As far as the chemo plan, we will start that up approximately 1 week after the radiation treatment, which will be 14 straight business days, starting tomorrow (Wednesday 3/26).

So here’s the good news… We are NOT going through with the clinical trial chemo plan, but instead, are going back to try the Tarceva. That was an unexpected possibility. Apparently I did have an one unexplainable genetic code in the tumor and I still matched the profile of young, non-smoker profile, so the Tarceva still may have a good chance of working.

So, despite the brain lesion and whole brain radiation news, I am actually feeling strangely encouraged and upbeat. Maybe I am channeling some of the “Peace that passes all understanding!”

Please pray for me to NOT have any of the side effects (especially not long term) of the whole brain radiation.

Please pray for my faith to continue to grow and strengthen.

Please pray that this radiation will clear my head of all brain tumors, permanently.

Peace and love,
Eric