CSN Login
Members Online: 5

You are here

How is everyone?

blakebramlett's picture
blakebramlett
Posts: 4
Joined: Apr 2017

I've found myself here like many of you have. MRI on March 12th straight to crainiotomy on March 13, 2017 for a  total gross removal of a 7cm tumor on my right frontal lobe. Pathology came back mostly grade II at first, but the center contained grade III A.A. and turned our world upside down. I will admit I have laid in bed at night and read (and reread) all of these individual stories that I am so invested in. Unfortunately, many of these stories just begin and I don't know what has happened to those that were fortunate to post in the first place. Do you feel the desire to live life more and stay away from the forum? Has your health gotten worse and have you moved to other forums? Has your health gotten better? I would love to know everyone's updates - this whole board has had an amazing and positive effect on my thinking and planning as I begin this journey. I look forward to hearing from everyone, should you have the chance. My name is Blake, 33 year old male, from Illinois.

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Blake,

At the age of 68 I got primary central nervous system lymphoma (PCNSL), a 2 1/2 centimeters tumour in my cerebellum, in March 2012.

I was treated with cortisone, then 3 rounds of 4 day chemo and antibodies, then own stem cell collection, then high dose chemo, and finally autologous stem cell transplant by the end of August 2012. I got weak and my stomach was bad. After about 3 months my stomach was OK again, and after 6 months I was fairly strong. I took Temodar chemo pills 4 days every month for 2 years to prevent a relapse.

Now I am quite OK and fit. The only remaining problem is a slight neuropathy, a little numbness of my feet, but that does not bother me at all.

I travel to various countries with my wife. I do physical yoga every morning. I play table tennis. I walk and do some running too.

You can get well!

Good luck!

Sten

 

blakebramlett's picture
blakebramlett
Posts: 4
Joined: Apr 2017

Sten, thank you for replying! I'm looking forward to adding my own after our chemo/radiation - and, maybe talk my wife into some world travel! I'm happy that you're feeling well and have not had much side effects. Thank you for your update.

AK_Astrocyte
Posts: 1
Joined: Apr 2017

Hi Blake,

I had a grade 2 astrocytoma removed in 1993. Left frontal, "about the size of a quarter" as the neurosurgeon said at the time. At the time, it was my final semester of my final year in college, just after mid-terms. I was anxious about losing the knowledge necessary to ace my finals so I postponed the surgery until after the end of the school year. (I had some interesting loss of longer term memory but nothing profound.)

Google didn't exist back then so there really wasn't an easily available source for information. After the surgery, I was focused on finding a job and supporting my family so I never thought about it much until recently and my attitude was really positive. I just got the result of an MRI today and everything looks good.

After 24 years I finally started doing some Googling about it and found this site in the process.

So, even though my positive attitude was somewhat founded in ignorance, I would say that attitude is important. Believe the best is yet to come. (Sounds a little trite, I know.) No downside to believing in the best possible outcome.

Work out, live healthy, stay fit, don't stress it. As Sten said, maybe some Yoga?

24 years later and all is well. I hope this is encouraging.

Good luck.

Leon  

 

blakebramlett's picture
blakebramlett
Posts: 4
Joined: Apr 2017

That's great news! I'm very happy to hear from someone. I agree, ignorance can be blissful, but there is so mich information to search through so that we, as patients, advocate for ourselves. I have felt that pushback in our initial appointments with certain doctors' opinions and we learned quickly to stand up to the situation. Although I feel that our doctors/oncologists are treating us well, I like to know why/why not certain things can be chosen. It's a whole new ballgame to help manage your own care, attempt to be informed, and fight stress/stay positive. We are doing it with stories like yours - and faith. Thank you for the update!

Zhi Long
Posts: 1
Joined: May 2017

Hi Blake, 

I have a similar condition as you. A 3cm low grade cancer, 90% was grade 2 and about 10% was tested to be aggressive (grade 3). My surgeon managed to remove 5cm on the 28 Mar, more than the tumor size and i will be undergoing radiation and chemo next week. Have you started your treatment? 

And yes, totally agree on having a healthy lifestyle and being positive!

Zhi Long

Subscribe to Comments for "How is everyone?"