Notso Posted October 13, 2009 Share Posted October 13, 2009 Hello! I have been lurking the past few days and am amazed by the help and support provided here! As you can hopefully see from my signature, my father has been battling NSCLC for a year. After chemo/lobectomy/adrenal removal, we were hoping to be in the clear. From the neck down, so far so good. They have found no evidence of cancer there. However in August, the doctors found two small tumors near his cerebellum that resembled the adrenal mass. After much discussion, a treatment of 12 sessions of WBRT followed by Gammaknife surgery was decided on by his team. For these procedures, he was put on the steroid Decadron. After the Gammaknife, the doctor told him to begin weaning. The way I understand it they increase the time between pills by an hour a day. Currently he is taking 2mg a day down from a peak of 16 during WBR. Even after the surgeries, Daddy was in great shape. He was actually boxing the day they found the tumors (he got really dizzy and lost his balance). After the WBR, he was tired but holding up ok. No nausea, swelling, headaches or seizures. He had good balance, but still used a walker for longer walks. His Gamma knife op was 10/1 and when we saw them this weekend, he was super super super weak. He stopped going to the gym daily last week. He seems to have decent balance, but is so weak that standing and walking is a challenge. He has an appetite but is still losing weight (this may be from his diabetes though---decadron is awful on the blood sugars). He also is so exhausted. He is still having trouble sleeping at night, but will fall asleep sitting up. At points he seems deliriously tired. We are told the procedures were a success and he has a good prognosis, but I have never seen anyone so weak. His friend is a neurologist and told him the weaning schedule his doc prescribed looks good and that this is to be expected before he starts to improve once the decadron is out of his system. Does anyone have any experience with these treatments? I am just so worried about him. Thanks so much! Lorin Quote Link to comment Share on other sites More sharing options...
RandyW Posted October 13, 2009 Share Posted October 13, 2009 You and the Family are in my thoughts and Prayers!! We should hopefully have some answers soon for Ya on these questions. I can not answer because never had Gama knife! Hang in there and from my understanding it is temporary condition but dont quote me on that one! Quote Link to comment Share on other sites More sharing options...
Patti B Posted October 13, 2009 Share Posted October 13, 2009 Lorin- Welcome to the forum. Sorry you have the need to be here. I just finished 15 treatments of WBR but did NOT have gamma knife. It is very common to be very tired during the WBR treatments. As far as the not being able to sleep goes, that is most likely caused by the decadron. Unfortunately, it keeps you awake no matter how tired you are. I wish I could answer more of your questions but since he had gamma-knife, I don't have the answers for that. Just so you know, many of us here have had successful WBR treatments without long lasting side effects. I will keep you and your dad in my thoughts and prayers. Please keep us posted. You dad is so lucky to have you by his isde. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 13, 2009 Share Posted October 13, 2009 Lorin, welcome to the site but as Patti said, sorry you have to be here. I also have not had gamma knife but have suffered sleeplessness from steroids. Mine is dexamethason and I have fair success countering sleep problems with Ativan at bedtime while I'm taking the dex with every infusion of Alimta. I'm a firm believer that lack of sleep is at the root of many problems. Hope your Dad gets relief soon. I'm sure in time someone will come in with gamma knife experience. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Notso Posted October 13, 2009 Author Share Posted October 13, 2009 Thank you all so much for the thoughts and prayers and information. I am so happy to have found this site. Thank you, Judy for the Ativan recommendation. I will pass that on to daddy. I am not sure he will be willing to try it though. He has an odd hatred of sleeping meds. Patti, thank you for the encouraging news on WBR. He is at a great cancer center and I know they were very careful to target rads so as to minimize necrosis and such. I hope he gets through this none the worse for wear. Thanks again! Quote Link to comment Share on other sites More sharing options...
Outrider1 Posted October 13, 2009 Share Posted October 13, 2009 Lorin, Ativan (lorazepam generic name) is an anti-anxiety pill (much like valium, but less side effects for long term use) that has the added benefit of helping with sleep. I take it as needed for anxiety or to help me sleep. It works great without leaving you feeling drugged or "hung-over" when you wake up. It helps slow down the mind and racing thoughts while trying to get to sleep. I use it when I need to. Dawn Quote Link to comment Share on other sites More sharing options...
Notso Posted October 13, 2009 Author Share Posted October 13, 2009 Dawn, you guys can see how ignorant I am on these things! I will recommend that to him. Thanks! Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 13, 2009 Share Posted October 13, 2009 Hi, Lorin, welcome to the group! If I'd seen your post earlier, my strong recommendation would have been to visit cancergrace.org for some expert medical perspective — but I see you're way ahead of me and have already received responses from Drs. West and Pennell. It's become very clear to many of us that Decadron (dexamethosone) is a two-edged sword, very sharp on both sides, and has to be handled with great respect and caution. I haven't had brain radiation, but do take Decadron for three days every three weeks clustered around my Alimta infusion, and I get more by IV just before the Alimta, and its effects are obvious. I wonder if some of the profound fatigue many of us experience a couple of days after each Alimta infusion is partly due to coming off of the Decadron?... I realize that in your dad's case he needs to get off of the Decadron because of other medical issues, and hope he starts getting that energy back very soon! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
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