CancerCompass message board discussion started by gbminfo on 5/5/2008 http://www.cancercompass.com/message-board/message/all,23755,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Family member/ Female age 60 DX 4-2008 GBM stage 4Is anyone seeking treatment at U of C in chicago? If so can you give me feedback on your treatment/progress so far? gbminfo Mon, 05 May 2008 00:00:00 GMT Yes, good docs and good facilities. She had Dr. Lesniak for surgery, and has Dr Nicholas for oncology. In fact we see them tomorrow. I  still would go to duke if I could.mike Mikeb Wed, 07 May 2008 00:00:00 GMT She did in fact go to duke last week. She felt equally confident with both U of C and duke's' plan treatment , but chose U of C for location purposes and having her doctors on site. Same doctors as you tooHow long had it been since your DX and have you started treatment? My family member is post surgery with 100% removal, but has not begun treatment yet. will be soon.      gbminfo Wed, 07 May 2008 00:00:00 GMT We live in Evansville In.Heres her timelineJan06  resection evansville infeb 06 rad/temodarjun06 recurrence. surgery @chicago with glidelfeb07 recurence Avastin cpt11mar07 stopped cpt-11, continued avastinjan 08 clean scans, stopped avastin for other issues5/08 recurence. will see tomorrow. probably back on avastin with something elese. Chicago is great, people are too...but not as aggressive as they would be at duke. I am satisfied with chicago. I would check into novocure trial at chicago illinois, and northwestern if she has a recurence. It looks so promising. you can find it at novocure.commike Mikeb Wed, 07 May 2008 00:00:00 GMT Just curious why you didn't choose Duke for treatment or trials? After 2 days of consulting with Duke's Dr's we all felt U of C could offer the same quality of treatment as Duke. what is your wife's age?If you wouldn't mind, can you let me know how your day goes tomorrow.They have an appointment at u of c tomorrow too.your wife is a trooper....over 2 years now, very promising. Thank you for sharing your story and thank you for the novocure info, I will reasearch it tonight.This is new to our family and we are just trying to gather as much info as we can. We are choosing to be positive and pro-active.   gbminfo Wed, 07 May 2008 00:00:00 GMT Dr Nicholas is not as aggresive as I would like. My sis has had clean scans for months now, and she is not on any treatment except ruta/ calphos. That I get for her.today went well. The scan that she had was done at a different hospital. The docs at chicago said the scan looks good. So she still is not on anything....which is good for quality of life issues. I guess most docs wont go outside the box without a clinical trial to protect them.my sister is 48mike Mikeb Thu, 08 May 2008 00:00:00 GMT You posted that on 05-08 there was reacurance, why is that not being treated?  gbminfo Thu, 08 May 2008 00:00:00 GMT our mistake. the last MRI was done at a new hospital. Chicago said that happens alot. New facilitys have trouble comparing scans. They said this scan compares well with the other....so...we'll  wait and see.mike Mikeb Thu, 08 May 2008 00:00:00 GMT so there has been no new growth or reacurance since Jan 08? gbminfo Thu, 08 May 2008 00:00:00 GMT there has been no regrowth since feb07. Avastin has worked very well for her, although she has not taken that since jan08 because her scans have been so good.mike Mikeb Thu, 08 May 2008 00:00:00 GMT That is really awesome. What do the Dr's say about how well she is  doing? It doesn't seem you would need more aggresive Dr's, they seem to be handeling her well. why didn't she get into any trials when she was 1st DX?  gbminfo Thu, 08 May 2008 00:00:00 GMT she is doing well. she is still working. thry are /seem happy with her progress...although there is no cure. this stuff is always lurking. there are no clinical trials in evansville,in. we didnt know what she was facing until after the fact.mike Mikeb Thu, 08 May 2008 00:00:00 GMT Well keep me posted on her progress. Even though there's no cure, there are long term survivors and that's what we are hoping for. What happens next for your sister? When does she go back for another MRI?  gbminfo Thu, 08 May 2008 00:00:00 GMT she has an MRI every 2 months here in Evansville. My suggestion to you is to keep up with clinical trials in the chicago area. the best site is clinicaltrial.gov. they have a pretty good search engine. I wouldn't trust your doctor to find one for you. If they did it might be for there"pet project" . If you don't get in a trial you will find they won't get to far "out of the box"mike Mikeb Fri, 09 May 2008 00:00:00 GMT It is a trial, and it's simular to what duke was going to do. She can get out of the trial if things aren't working.After over 2 years since DX does your sister have any complications from the disease?I wonder why she isn't on any meds for prevention of re-growth?was she DX with gbm stage 4? gbminfo Fri, 09 May 2008 00:00:00 GMT What is the trial, CDX-111, or Temodar/Avastin?She is doing quite well. Her GBM was in the left parietal lobe. She still works at the hospital (part time). She used to be a speed reader, but now reads on a 5 grade level or so. Other than that you couldn't tell it.I think one of the reason she has done so well is she was not on steroids for very long. only a week or so after surgery.She is on blood pressure medicine, kinda a side effect to avastin. She takes Amatryptaline for anxiety. She also takes Ruta/Calphos. I personally think that has helped her immensly. It is easy to get, cheap, and no side effects. A Homepathic doc in India treats GBM with it.Her first resection was a GBM. Chicago said Grade 3.I don't always look at this site, if you want to e-mail me its --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Mikeb Sun, 11 May 2008 00:00:00 GMT