Comments on: Big Week http://www.markmillermusic.org/blog/2009/03/30/big-week-2/ a brain tumor story. Thu, 17 Nov 2011 00:59:25 -0600 http://wordpress.org/?v=2.9.1 hourly 1 By: Mark http://www.markmillermusic.org/blog/2009/03/30/big-week-2/comment-page-1/#comment-264 Mark Tue, 31 Mar 2009 00:23:07 +0000 http://www.markmillermusic.org/blog/2009/03/30/big-week-2/#comment-264 Christine, I went off of Temodar because my counts got too low - my ANC was bad and I kept getting sick over and over. I spent more time going off of the drug so I could get well and raise my counts rather than being on it so we finally pulled it - diminished return with a low quality of life. I was on it for about 8 months as I recall. You really have to watch supplements and diet on the 7 on and off program based on my experience. I did but I still had issues. You've been through a lot - so you know the drill - keep battling! If I can help more let me know.... God bless, Mark Christine,

I went off of Temodar because my counts got too low – my ANC was bad and I kept getting sick over and over. I spent more time going off of the drug so I could get well and raise my counts rather than being on it so we finally pulled it – diminished return with a low quality of life.

I was on it for about 8 months as I recall. You really have to watch supplements and diet on the 7 on and off program based on my experience. I did but I still had issues.

You’ve been through a lot – so you know the drill – keep battling!

If I can help more let me know….

God bless,

Mark

]]> By: christine http://www.markmillermusic.org/blog/2009/03/30/big-week-2/comment-page-1/#comment-263 christine Mon, 30 Mar 2009 23:51:34 +0000 http://www.markmillermusic.org/blog/2009/03/30/big-week-2/#comment-263 my apologies. I finally figured out your blog and am where I should be. Brain fart.lol anywayz I did miss when you stopped the 7 on 7 off of temador. So if you could let me know how long you were on that and the reason you went off. I have been battling brain tumors since 02. First craini. grade 1 then 2 yrs later it came back so we did the gamma at sutter then in 05 it came back had craini at stanford gbm 4. temaor 5 on 23 off for 18 months. clear for almost 2 yrs. wrecked my quad broke my wrist and hand pretty bad shortly after that the tumor came back. hmmm Dr's doon't think it is related but my lord how much can one body fight off at one time? So I had another craini at stanford Dr micheal edwards(done all my surgeries) then UCSF put me on the trial 7 on 7 off. I just completed day 14 yesterday and I am exhausted. I may try peovigil nest month to see if that will help. I am glad I found your site. Reminded me of a lot of things I had forgotten. Another site that I have frequented since day one is YASG. I will be heaading to UCSF this week for my monthly exam. And will go from there. God bless my friend. For the greater good! Christine Van Hoose my apologies. I finally figured out your blog and am where I should be. Brain fart.lol anywayz I did miss when you stopped the 7 on 7 off of temador. So if you could let me know how long you were on that and the reason you went off. I have been battling brain tumors since 02. First craini. grade 1 then 2 yrs later it came back so we did the gamma at sutter then in 05 it came back had craini at stanford gbm 4. temaor 5 on 23 off for 18 months. clear for almost 2 yrs. wrecked my quad broke my wrist and hand pretty bad shortly after that the tumor came back. hmmm Dr’s doon’t think it is related but my lord how much can one body fight off at one time? So I had another craini at stanford Dr micheal edwards(done all my surgeries) then UCSF put me on the trial 7 on 7 off. I just completed day 14 yesterday and I am exhausted. I may try peovigil nest month to see if that will help. I am glad I found your site. Reminded me of a lot of things I had forgotten. Another site that I have frequented since day one is YASG. I will be heaading to UCSF this week for my monthly exam. And will go from there.
God bless my friend.
For the greater good!
Christine Van Hoose

]]> By: Scott Whitcher http://www.markmillermusic.org/blog/2009/03/30/big-week-2/comment-page-1/#comment-259 Scott Whitcher Mon, 30 Mar 2009 20:52:32 +0000 http://www.markmillermusic.org/blog/2009/03/30/big-week-2/#comment-259 Holding good thoughts for you brother ... keeping our fingers crossed that you start the vaccine as early as tomorrow ... Your friend, Scott Holding good thoughts for you brother … keeping our fingers crossed that you start the vaccine as early as tomorrow …

Your friend,

Scott

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