How do lifestyle factors and exposure to environmental substances affect our cancer risk?
by clerky96 on Sat May 19, 2012 04:37 PM
My husband started having some eye flashing and a slight headach on 11/11/11. Went to er and they did a ct scan and found a tumor in the occipital region of his brain. He was transferred to Barnes Jewish Hospital in St Louis the next day and they confirmed the tumor. Due to him taking aspirin for his heart, surgery was postponed until 11/17/11. Came through surgery fine, but tumor was confirmed as GBM. We didn't ask what % of the tumor he believes he got out, but he said he was very aggressive and got as much as he could see. He underwent radiation and temodar therapy in Dec 2011/Jan 2012. He didn't have any problems with the treatments. After treatment MRI was inconclusive. Because he has a condition called ITP (which he developed after heart bypass surgery in '08), he has only been able to take his maintenance temodar one time. They had taken him off of steroids early in his radiology/chemo treatment. In April he had another episode of eye flashing and dizziness, so they put him back on steroids to reduce swelling and hopefully raise his platelet count. It didn't help the platelets, and his legs are so weak he can hardly walk without a cane. He is a golfer, and needless to say he hasn't been able to play for over a month. His oncologist decided to try to wean him off of the dexamethasone and see what happens. If symptoms return, he will have to go back on them. On Wed they gave him a treatment of Rituxan with the hope that it will raise his platelets and he can again take his Temodar. Until then we are in limbo, just waiting. :<(
by ravirajagopalan on Sun May 20, 2012 02:28 AM
Good luck. This is very challenging - hope he responds well to being weaned of dexamethasone.
by tromda on Sun May 20, 2012 03:24 AM
I agree - coming down of dex is difficult for some people - not all. Be watching for behavior changes and if you notice something - call the Doc and let them know. The dex will also cause weakness in the large muscles that last long after Dex is stopped. Good Luck
by HubbyhasGBM on Tue May 22, 2012 04:48 AM
Hi Clerky96. I hear your immeasurable care and concern with your post. This is a very frustrating, slippery diagnosis, and at the end of the day, your husband's health will benefit most if you, yourself, don't fall victim to it. If you haven't tried some counseling, I recommend it. It helped me corral my grief so that I could be a better spouse during the time my husband has. Beyond that, I did another thing that I actually "enjoyed" again today. I got Katie Couric's book, "The Best Advice I Ever Got." I only let myself read it when I am waiting in a doctor's office, or at the hospital. The chapters are short and uplifting. Because I did not let myself read this book in one sitting, I actually look forward to the times I get to read it again. It's like a little, tiny reward and the break allows me to digest some of the inspiring thoughts from all sorts of leaders across the world, in music, science, and beyond. Then, when my husband was done getting his MRI, I was full of new stories, as if I had chatted with these people in person. He enjoyed hearing me retell him the stories on the ride home. It was superior to allowing the dark nature of the diagnosis claim all of our happiness.
Another thing that actually helped me was to realize that my husband could have died in an accident and we would not have had the extra, intimate time to spend together. This disease has left us emotionally naked in a way that no other life event has ever done. It may sound odd, but for that I am thankful. Good luck and remember - this site is a great place to unload because we all, in some fashion or another, understand.
by kat54 on Tue May 22, 2012 02:53 PM
I'm so sorry you and your husband are here in our BT world. I was diagnosed with GBMIV in 1993. Try not to get too caught up in statistics. There are many of us long term survivors out here. the first year is hard with alot of adjustments but it does get better. I too am a golfer. I was totally blind for awhile after my second surgery. I golf now and drive too!! check out stories at virtualtrials.comand mine is under bios atyasg.com. I wish you both the very best and send prayers for patience and strength. Kathleen R
by filipa3211 on Tue May 22, 2012 04:40 PM
My dad was diagnosed with GBM about a year and a half ago. The doctor told us that he might live about a year. He is doing great and it is almost impossible to tell that there was ever anything wrong. He has been enrolled in a clinical study and according to the health professionals working with him he is in uncharted territory due to his great outcome so far.
by jackie342 on Tue May 22, 2012 08:15 PM
WONDERFUL!What type of clinical trail?We have just started this horrible journey, so it is wonderful to hear such great news from someone!! I only hope and pray that our progress is as good in a year and a half.
Thanks for the encouraging news. Where was your fathers tumor located? Did he have any specfic systems? Surgery?
Radiation or chemo?
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No, but we got a second opinion after we started treatment
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