One patient with glioblastoma still alive nine years later
by Steve51 on Sat Jan 30, 2010 08:47 PM
I am a 1 1/2 year survivor. My GBM 4 was found July 26, 2008 and removed July 11, 2008. I have had 30 radiation treatments and 47 daily Temodar pills. I did my twelve months of 5/23 Temodar. I just had my MRI and the doctor says he wants to stop the Temodar and see how things go. My MRI hasn't changed since my surgery and he says this will give my body a chance to rest from the Temodar and should the beast start growing again the Temodar won't have worn out it's welcome.
My wife and I just returned from a trip to Jamaica where I got to return to scuba diving down to 85 feet. It was awesome. The Lord has given me an extended time frame. I pray that all get a lot of extra time and hopefully we can continue to write. God bless you all.
by Sherylrjr on Sat Jan 30, 2010 09:07 PM
First of all it is wonferful that you went to Jamicia and scuba dived. (does you NO know this???)
God has blessed you with the health to go down 85 feet with all the pressure.
Being 18 months survivor is awesome! Stopping the Temodar can be good for your body. Keep the faith in our NO. He knows what is best for you! I find amazing how everyone responds to treaments differently.
Keep your positive attitude.....and keep living life!
Son 34 dx Mar 08 AA
by heart_and_soul on Sat Jan 30, 2010 11:08 PM
Steve that is absolutely great. I hope you will be in the lucky club for a LONG LONG time! Take good care of all of you! (Feet, lungs, etc.) It's all good.
by I_love_Gary on Sat Jan 30, 2010 11:29 PM
by MsRoxy on Sun Jan 31, 2010 03:56 AM
by Steve51 on Mon Feb 01, 2010 12:10 AM
Thanks for all of the well wishing. I discused my diving with three different NOs. Two of them are divers too. They all said that they saw no problem with the diving. God is great. Thanks to all for the good thoughts.
by Heritage_Softail on Mon Feb 01, 2010 11:12 AM
I bet the dive in Jamaica was great! I as well was on Temodar 5/23 for 2 yrs. Stopped in Oct 09. I finished up with radiation in Dec 09. I know the opposite of "standard protocal". Either way enjoying life. I am heading to the Amazon in 2 weeks for Peacock Bass fishing. My wife is worried but I told her God Willing I am set for the experience. I know she will worry but life is to short for the should have and could have done. I much more enjoy , Live your life! God Bless All in this Journey.
Dx Nov 07, Jan 10 MRSA, next who knows but still have my half a brain humor.......... I took my wife to a restaurant.. The waiter, for some reason took my order first. "I'll have the steak, medium rare, please." He said, "Aren't you worried about the mad cow?"" "Nah, she can order for herself." And then the fight started...
by gehleb on Mon Feb 01, 2010 05:15 PM
Wonderful. It seems so that you life the moment.
Go for it.
by Lake75 on Mon Feb 01, 2010 05:17 PM
That is fantastic that the Temodar has been working so well for you! It's great that your body can take a break. It sounds like you are taking advantage of every day and that is inspiring!
by BigDaddy on Mon Feb 01, 2010 06:26 PM
Happy, Happy news! This is great Steve!. I was Dx GBM in 9/07. I finished my radio in Dec 07, then 12 months of Temodar 5/23. My NO took me off, saying its time to take the training wheels off. He wouldn't know if the beast was gone until I got off the Temodar for a while with no reccurence. Well, since Dec 08, I have had no treatments other than Keppra for these nasty nasty seizures. My January MRI was clear! Wow! I am so blessed by God to be here. I have ten children, and they and my wife would sure miss their Big-Daddy. I plan to be here for a long Time. Blessings to you and every one fighting this beast!
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