After leaning that my dad had a CNS Lymphoma of the brain instead of a GBM, we again scambled to locate a doctor and treatment plan that we thought was the best. We checked into the Blood Brain Barrier research taking place at Oregon State http://www.ohsu.edu/bbb/. and UCLA. We also contact Sloan-Kettering and the Mayo Clinic and looked into the work being done at the Cleveland Clinic but decided on MD Anderson after a great friend helped us get in right away.
My dad, Sue, Derek and myself were immediately impressed with the place...they understood customer service. After arriving for the appointment, a women approached us and offered a notebook with slots to place business cards in from everyone we would be meeting. She also gave us her number and said she was a liason and if we found ourselves not being able to reach the apporiate person after leaving we could contact her for help. Quite impressive. The doctor we met with was Dr. Goves and after reviewing my dad slides, he prescribed a course of chemo drugs that were our best shot. The main drug was Methotrexate (MTX) to be administered in high doses. The doctor went on to say that the last line of defense would be radiation, because of its toxicity. We ended our brief meeting saying we needed to choose where to have the chemo administered and he was fine with us doing that in KC. Although nothing was guaranteed, he was confident the cancer would go into remission. After reseaching some more I concluded that this was the "M O" of this type of cancer. A good chance of initial remission but eventually is will come back.
After our 2 day celebration trip to NOLA (remember in just a few days we went from thinking my dad had a GBM to now hearing that remission was likely) we returned to KC to search out an oncologist. Further tests were required and a cathetor was placed in my dads chest that would be used for the chemo's adminstration. We also decided to use a hospital that was where my wife and I had given birth.
After all this was done, the oncologist scheduled the chemo start for the following week. Seizing yet another opportunity to do something fun and spend quality time with my dad, I scheduled a quick trip to Toronto and Boston. In Canada my dad could visit our hotel partner and play some golf at his exclusive club. In Boston we could see the Royals play and since my dad had never been to Fenway, we could take in one of the great parks. The trip was all I had hoped for and I know my dad enjoyed it...especially hanging out with our partner who was a big developer and very successful. Because of how our hotels were doing, my dad probably felt he was about to arrive too. The last couple of days my dad was anxious to get back to start treatment and I guess I felt the same way. Were had done our homework, found a great facility that prescribed a plan that would hopefully fend of this disease for a while, giving all of us more time with Dennis. It was time to get to work and beat this thing!
I should note that we looked into various trials being conducted but decided they weren't for us. A good place to learn what is out there is the National Cancer Institute. http://www.cancer.gov/clinicaltrials
We also looked into some bone marrow options that work along with the chemo but also decided against this for no other reason than the experts we talked to didn't recommend it. Again I haven't researched in 2 years so maybe some new drugs are available or the mix that is recommended has changed but you will know this after just a few calls and some reading on the web. One such drug is Rituximab and some trials were taking place 2 years ago were this monoclonal antibody drug was being introduced along with MTX. Again please make sure you research all options.
Being silly in Niagara Falls
The things I would take from this are:
MD Anderson was adament about not wanting to see my dad if he started radiation before visiting them. They said it can hinder the ability of some of the chemo drugs to work.
Hindsight is 20/20 but we chose to have the chemo done in KC. Sue really wanted to stay in Houston during its administration but my dad insisted on getting back to KC and start working again. I dont think it would have changed anything but it could give someone a level of comfort.
Again everything is clearer after the fact but we didn't push hard to begin the chemo right away. Sue believes the 2 weeks it took to pick a place, the onconologist and the required tests could have made a diference. I probably could have done it all in a week but who knows. One thing is for sure though, the longer my dad was on the steriod (Decadron) his appearance changed and mood swings followed.
The oncologist we chose seemed a bit absent minded at times. We all struggled with whether we should change but my dad ultimately veto'd us and decided to stay with him. I don't know if it was out of a sense of loyalty, but I would suggest that if at anytime someone seems to be a bit off their game, look for a replacement.
When the chemo starts, make sure you check the drugs actually being given with the prescribed plan from your doctor. At least twice we found one missing or a smaller dose being given.
Finally, my dad insisted on keeping up a regular schedule. Although all the doctors said this was OK, I wouldn't have had him mowing the grass if I had a say. I would have had him just hunker down during the chemo time and do all he could to minimize physical activity. I'm not sure if this activity lead to him coming down with the pneumonia(PCP) but it sure didn't help.