Hello, my name is Doug Gamble. On July 11th, 2005 my dad (Dennis---age 58) was diagnosed with CNS Lymphoma after first being diagnosed with a Glioblastoma (GBM) brain tumor. Immediately my family scrambled to get 2nd and 3rd opinions. We flew to Houston to get MD Anderson's opinion, we talked to a doctor at Sloan-Kittering who is considered the nation's (and possibly world's expert in the disease) and on September 5, 2005 my dad began a 4 regimented treatment of chemo--several different chemo drugs including high dose methyltrexate. He passed away on October 9, 2005. But it wasn't from the CNS Lymphoma but rather from a rare from a rare pneumonia that also used to kill many AIDS patients.
I decided to build this website for 2 reasons: 1. to pay tribute to the greatest man I have every known (luckily for me he was my dad) and 2. to share my families experience in hopes that others can learn from it and possibly take precautions against the rare pneumonia that took my dad's life.
The internet is a wonderful tool for instances like my family faced and maybe yours is facing too. But like much of the web, you can drown in information. Within this site I will share what I found after spending dozens of hours reading, researching and praying.
My Dad with my daughter Alice (July 05)
If you are reading this, there is a good chance you or a loved one has been diagnosed with a Central Nervous System Lymphoma. If that is the case take a big breath and thank God because the large majority of brain tumors are Gliablastoma's (GBM) and that is a death sentence...often with 12 months. GBM's usually require surgery and they rarely respond to chemo. CNS Lymphoma on the other hand, usually does react well to chemo and even just a few days of steroids will have the person diagnosed thinking, talking and acting like normal again.
I haven't researched in 2 years but in 2005 I used various studies to conclude the life expectancy rate for my dad (57---good physical shape) was just under 5 years. Equally important, I have concluded that my dad, my family and everyone else diagnosed with any potential killer are the true lucky ones. We are informed of a problem and have time to address it and say goodbye to our loved ones. The unlucky ones are those that kiss their husband/wife/mom/child goodbye in the morning and never again get to spend time with them because of an auto accident. This may sound weird but once you go through it you will understand and appreciate every second you have with your loved one.
One suggestion you may want to take away from this page (in case you don't read on) is that you MUST push hard on the medical professionals when you need to. I am a hotel owner/operator and my dad was my partner so I am very familiar with customer service. I also know many doctors and in my experience, these two professions are polar opposites when it comes to customer service. Sure MD's, nurses and the rest must deal with much more than most of us will ever have to but when your loved one is told they will die unless you come up with a good plan, you need quick responses from people making the biopsy slides, the receptionist at the office where you want a 2nd opinion and the Oncologist as to their timeframe for staring the chemo. And for many of these professionals, they are not good at quick responses and returning calls.
I HIGHLY recommend getting direct phone numbers, cell numbers and email addresses for everyone you come into contact with. Time is obviously of the essence and sometimes you must directly reach a doctor (the nurse won't give you a beeper number) to get an answer that another doctor needs to keep the process moving quickly. Some do get it and they are quickly and easily reachable but others may not be. Keep all the names and numbers in a spreadsheet or notebook and keep it close.
Finally, I wouldn't worry too much about estate planning and all the bad stuff initially. After the diagnosis, hopefully the steriods they prescribe will kick in and your loved one will be able to make their own decisions. Take the first few weeks to get organized, get the second and third opinions, and plan the chemo. Then you will have time to do the necessary planning for the worst. I didn't get to ask my dad about this, but I'm sure he needed some time to also get his thoughts organized (and the treatment plan organized) before he contemplated and made his plans.
Please explore the other pages and again, I hope this helps you and your family prepare for a fight that sometimes can be won but also allows you that quality time that I discussed earlier.
If you need to contact me my e-mail address is firstname.lastname@example.org. I will do my best to answer any questions you may have.