But it's too early to make blanket recommendation, expert says
by mtoceanlakepup on Sat Oct 18, 2008 12:00 AM
by jwilbiz on Mon Oct 20, 2008 12:00 AM
Hi,Whenever someobody is newly diagnosed with glioblastoma (GBM) it is critical to get key pieces of information, ideally prior to any treatment. Please review http://www.treatingglioblastoma.com, and once inside the site click "Upon Diagnosis" for the newly diagnosed patients.I strongly recommend treatment. Even though survival odds are poor, you can only have hope of survival with treatment. And the treatments are making huge strides every year. I know this is a difficult subject to discuss, and every GBM case is unique, but I believe that with treatment there is a greater liklihood of a relatively easy death (dying in your sleep). You are relatively close to Duke University. I strongly suggest you contact them immediately.Best wishes,John
On 10/18/2008 mtoceanlakepup wrote:My husband is diagnosed with Glioblastoma iv. Without treatment 6 months to live. He wants quality time. How do we achieve that? Treatment/no treatment, what treatment, where to get treatment? Of course we prefer to stay in the comforts of our home town...Tallahassee, FL BUT to extend his life with quality we will go where necessary. Any info would be appreciated.
by Franky22 on Thu Nov 13, 2008 12:00 AM
With a Type4 Glioma, it all depends on where the Glioma is located, and how big it is.
I am just getting done with Tomotherapy for a Type2 Glioma growing from the base of my Brain Stem, all along into the Spinal Cord. Its about the size of a Golf Ball, pretty huge.
I went for Chemo/Radiation and I have to tell you, the radiation treatment was nothing compared to the Chemo. For chemo they used Temodar, which was naaaaaasty on me.
Tomotherapy will give you a shot at extending life because after the treatment, the Tumor could stop growing. Its a pretty painless process, that took me around 20 minutes a day. You will have to go every (week)day to treatement for 5-6 weeks. It does take a huge chunk out of your day. However, most side effects are mild, and don't seem to cause most people issues until later in the treatment cycle.
For example, I had very little to no side effects from the Radiation Tomotherapy until week 5 of 6 of my treatment.
If you can afford the time and money to get the Tomotherapy, I would reccomend that you do so. Its a good shot that it might work to slow down the growth of the Tumor, or kill it outright. Again, it depends on the size and placement of your tumor, because you dont want to nuke the surrounding tissue, but mine was in a VERY bad spot, and so far, so good, and I only have 2 treatments left.
I wish you the best, and please feel free to respond with any other questions.
by skarp on Mon Dec 22, 2008 12:00 AM
If you don't mind my asking, what kinds of side effects did you experience, to what degree and where?
I'm starting tomotherapy i n January for Follicular NH Lymphoma. Mine is in my groin area and abdomen and I don't know what to expect.
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