Big Week
Brain Tumor Vaccines March 30th, 2009
Email This Post
Print This Post
Quick Post – I have a lot going this week. We haven’t heard anything different – so the vaccine should be here tomorrow.
- Updated – MRI done today at 2pm. We are going to set up an MRI as soon as possible – could be today or tomorrow. The MRI is used as a baseline of course prior to starting the vaccine.
- I will likely start the vaccine on Thursday. This will be administered at the infusion center here at Sutter.
- Our plan is to use the vaccine concurrently with Thalidomide (yes, the same “morning sickness” drug from the 70’s). More recently, however, Thalidomide has proven to be a solid treatment for GBMs – it cuts off the blood supply to the tumor.
- I also have an appointment with my Oncologist through all of this to see where we are with the plan.
- I have been taking Valcyte as well. Still debating if that is in the mix. We may take that out so we can understand the efficacy of this treatment combo.
A lot going. Will post what I can here.
Subscribe by Email 
RSS Subscription
on 
on 
Holding good thoughts for you brother … keeping our fingers crossed that you start the vaccine as early as tomorrow …
Your friend,
Scott
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
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