Partners even more likely than survivors to experience fear and worry over long term, study finds
by EllenFisch on Thu Mar 22, 2012 02:52 PM
I had my MRI jumped up till tomorrow. I'm thinking this ccnu is not working for I've had numerous seizures (like 2-4 a wk) most of the time I get an aura but the last 2 I have not. I keep thinking about dying and it's been that way since I was diagnosed 9/09. I'm preparing myself for the worst. I also called MD Anderson and they never called me back. Maybe it didn't get to the right person or maybe since they knew I was from Mayo Clinic they just didn't call me back? Any answers would be very much appreciated. Ellen
by EllenFisch on Thu Mar 22, 2012 02:53 PM
am I letting the cancer take control? My kids are so young they would be devasted to lose me.
by jAAvs on Thu Mar 22, 2012 04:14 PM
Ellen, you have been an inspiration since I started reading your posts. I go to Mayo, but used to go to Duke. I have done studies at both fadilitiesI would consider going to Duke if you have not already. I also, say, Keep the faith. I have young kids as well. So, in sum, I hope you keep finghting and I wish you the best.
by EllenFisch on Thu Mar 22, 2012 04:20 PM
Thanks Jason! Funny you are an inspiration to me as! I just want to be prepared for tomorrow. I'm so glad the Avastin is still working! Hooray!!! Ellen
by jon4156 on Thu Mar 22, 2012 06:23 PM
I doubt they wouldn't call you back just because you go to Mayo. Are you contacting a specific doctor? Probably a good idea to try again and let them know your previous inquiry went unanswered. For what it's worth, Mayo and MD Anderson are both in the top five rated cancer hospitals.
Do you know if you qualify for either DCvax or ICT-107 immunotherapy clinical trials? (see links below) Have you considered a novo-cure TTF device?
by siblingof on Thu Mar 22, 2012 06:27 PM
by dmercer on Thu Mar 22, 2012 07:08 PM
MD Anderson has a link on their site where you can schedule a patient requested appointment. I was contacted within a day and had an appointment with the director of their Brain Tumor Department, Dr. Yung, within a week.Wishin g you the best.
Grace and Peace,
by Libra57 on Thu Mar 22, 2012 08:17 PM
Hi Ellen. My husband was on CCNU and when that stopped working, the NO put him on Avastin. He has had 7 infusions so far and it seems to be doing the trick, an MRI scheduled for April 5th will give us the results, but no real side affects so far.
We are in Canada, and Avastin is generally prescribed when new growth appears and CCNU stops working, so we are taking this as a good sign.
Good luck, keep us posted!
by EllenFisch on Sat Mar 24, 2012 02:47 PM
So relieved! Although I had my MRI 2 1/2wks early it was stable. Dr.Uhm said he moved it up more for him than for me. He's such a caring man. I was also relieved to hear that there are many other options when ccnu stops working. I honestly thought they were going to tell me there's no more they could do. My mom said it was one of the worst days of her life. Needless to say I had like 6 seizures (most ever) my 3 yr old went to the neighbor and she came over and stayed awhile and she ended up having a seizure. She has a seizure disorder too. I think it's great that my kids know that it's more common and their is other mommy with issues. I SO appreciate your support and suggestions, Ellen
by forhim1122 on Sat Mar 24, 2012 10:26 PM
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