INFORMATION ABOUT BRAIN CANCER
I am writing this letter because I know of no other way to get the information out that I have. I am writing about cancer. Brain cancer. In recent months/weeks I have heard of a few different people in this area that have some form of brain cancer. I do not know these people or really know how to reach them. I am in hopes that they or someone they know will read this letter and then get in touch with me.
As a lot of your readers know, Leslie Robertson, was diagnosed with Glioblastoma Multiform (Stage 4 brain cancer) in December of 2008. At that time he was given 8 to 14 months.
Leslie went through what they call “standard of care” for someone with brain cancer. (Chemo and radiation). During this we did a lot of research of all kinds of different information. We contacted so many brain tumor centers that I lost count.
In the process of looking into some of the clinical trials I sent an e-mail to Dr. Andrew Sloan at University Hospital in Cleveland, Ohio. This was on a Saturday afternoon. Approximately 2 p.m., shortly after I hit send on my computer the phone rang. It was Dr. Sloan.
We talked about the trial and started a dialogue with him about options. We went to Cleveland and met with him. In January of 2010 Leslie’s tumor returned. In having met with Dr. Sloan and continuing with research as to what options were out there we were able to have Leslie become part of a vaccine trial.
Leslie has had one other actual surgery to remove what was thought to be the return of the tumor but proved to be scar tissue. Leslie is doing well for all that he has been through. I am sure that a lot of you reading this letter saw him in the hay fields this summer getting his hay in.
I am writing this letter because I want to let people know that there are options out there. Dana Farber, in Boston, is a great place and they do offer many different treatments. But, a lot of cancer centers offer different treatments because of ongoing clinical trials. Also, sometimes the doctors are different. Dr. Sloan is aggressive. Other doctors we have met have not been.
We were scared when we first started traveling to the “city.” Did not know what to expect or where we would stay, etc. What we found was a staff that worked with us and helped us deal with most if not all our issues. I know that this a real personal issue.
Each person/family deal with cancer, any cancer in different ways and fully respect that. We were overwhelmed when this happened to Leslie. We did not know what to do. We just took what was told to us and did not question. Then, when we found that we could question and find answers to those questions we felt empowered. This is a good feeling when you are dealing with any type of cancer. Did we always get the answers we wanted, no. But we did feel more in control and that helped.
I am willing to talk with anyone going through this and possibly put them in touch with Dr. Sloan or some pointers on research, etc. I can be contacted at firstname.lastname@example.org.