Gbm 4

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Gbm 4

by Rosemarie_B on Sat Oct 30, 2004 12:00 AM

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Been a long learning experience this cancer. My wife has a GBM 4and had surgery in April 03 and done radiation and did Temodar every month and had lots of problems she has had a blood transfusion and needs platelets added to and her WBC & RBC was off to so she did not get any Chemotherapy in October. She started again on the 8th of November and has done well so far, they put her back to 200 Mg now of the Temodar and her last blood count was fine so we will see if it works this time. I guess they have to start you out high on Temodar and work down, her last MRI was august 28th and it showed the tumor did not grow at all so we keep hoping. She did a MRI on oct. 20th, 03 and one in Dec 10, 03 and the tumor was back but not growing yet, how long can you stay on Temodar to keep this down we don’t know. Her GBM is a grade 4 and they can’t believe this just quit growing is this unusual for this? She is feeling real good these days and has got back to sewing to. She and Patricia (our daughter) have been doing sewing classes and they are having a great time together. Patricia works nights and week ends at a store here not good pay but gets her out and sees people not just locked up in the house. So some one is here all the time with Rosie. It has been wonderful to have Patricia home with rose I think it has made a big difference in rose. I know it took a lot on pat’s part to give up her life for now in Colorado but she will go back some day. Rose did a MRI on Friday the 5th, 04 and went to see the Neurosurgeon that did her surgeries. He said that there is not much he can do now. The tumor is back and we see trouble with her now. They just said go home and we can not help you. We found a place in Denver, Co (The Colorado Neurological Institute) that is just a brain tumor place and took Rose out there. They started her on Paclitaxel and Vinorelbine the first MRI showed the tumor was shrinking and she feels just great so her and Patricia live out there now and rose has six weeks on and then two off so she can come home some times . The people out in Colorado said she should not be on all the Naturopathic Medicine that they gave her as it feeds the tumor and will keep it growing. They did six weeks and the MRI showed the tumor has shrunk and she feels good for now. She just stared on biological therapy phase in which they will take the drug tamoxifen in high doses plus or minus the drug thalidomide. These drugs are not chemotherapeutic agents, and as such, are not nearly as toxic. They are, however, agents which have been shown to have a beneficial effect on malignant brain tumors in such a way that the tumor will either stop growing or become more differentiated and therefore less likely to progress. We have had very encouraging results with this phase of therapy which has been well tolerated by our patients. Now we have a lot of hope as this has not been done in the last year so it looks good, I would like to thank Doctor Arenson and his staff for all they have done for my wife she has never felt this good from day one so what ever they do it has worked this far. She is out doing things that she never got to do before. My wife has been through a lot and I do have hope now that they will cure her. We have more hope every time we see her MRI as now there is hope and before they didn’t know what to do, also they should let people know that there are a lot of places out there that have new ideas and can help. Now I don’t know how lone we will have but she is back to a more normal life and that is a lot. Also we are at 18 months so far and counting. If any one asks me I would say the doctor did save my wife from a bad situation. Will she make it mI don't that but they told us in 03 she had 4 to 9 mounths and it is 18 so I will take it. Mike B.

Gbm 4

by Trish_g on Wed Mar 23, 2005 12:00 AM

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Mike- Glad to hear your wife is doing well-my husband was also diag. with a GBM grade 4- just 4 months ago I did not know that these tumors existed-what a roller coaster ride. It took be nearly 4 and a half months to beleive it and now that I do I am angry/ I guess that everyone goes through about the same emotions-the temodar did not have any effect on this tumor nor did the radaition- my husbands tumor is inoperable-at only 54 and just retired for 7 months this monster shows its ugly face. He was diag. on October 31, 2004. In about 2 weeks we will begin a protocal at NIH in Bethesda Maryland that seems to be very encouraging-the drug will cut off the blood supply to the tumor and the results I hope and pray will be positive. I will keep your family in my prayers- If you would like any info on the study let me know. Trish G
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