CancerCompass message board discussion started by Marmie on 4/25/2006 http://www.cancercompass.com/message-board/message/all,5182,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi everyone, I haven't posted in awhile because we have been on pins and needles this past few weeks. The doctor called today and the PET scan revealed that the enhancement they saw on Russ' MRI was just radiation damage and not regrowth. Woo hoo!! So onward and upward. We feel so blessed as we are 15 months out and so far so good. I have been thinking about you all. Take care. Fondly, Patty Marmie Tue, 25 Apr 2006 00:00:00 GMT Dear Patty, I am soooo thankful to hear that Russ' PET scan report did not show evidence of new growth. What a nerve-wracking, frightening time this has been for you, Russ, and your family. Celebrating the good news and continuing to be hopeful. Take care, Rondi caring daughter Wed, 26 Apr 2006 00:00:00 GMT Dear Patty, I just wanted to let you know that I am thinking of you and Russ and that I am wondering how the two of you (and your family)are doing. I know that this journey is like a roller coaster with so many ups and downs. Has Russ continued with the Temodar following his PET scan? How is he tolerating his treatments? My dad's chemotherapy is temporarily on hold as there is significant swelling (evident on his most recent MRI) adjacent to the tumor bed. He is scheduled for a SPECTRA scan on July 7th. This should determine if the swelling is due to new tumor growth or radiation nectrosis. Now, it is our turn to wait with worry and anxiety... Can I ask you what Russ' doctor told you about radiation necrosis and what can be done about this if he did discuss it? Thanks. Let me know how things are going if you have the chance. I hope that you are able to enjoy the beautiful summer weather. Take care of yourself. Be hopeful, Rondi caring daughter Tue, 13 Jun 2006 00:00:00 GMT Dear Rondi, thank you for thinking of us. I'm sorry I haven't posted in such a long time but I have been so busy. We sold our business due to Russ' illness, it was just getting too hard. I am now working for the buying company as a consultant and trying to tie up loose ends with the business. Plus take care of Russ, so needless to say, I am exhausted. Russ is doing very well except for his extreme reaction to the Temodar. He gets sicker with each treatment and it takes him more days to recover from it. Plus he found out that they are letting him go from his job in October so we are stressing about the insurance situation. It never ends. He is contemplating discontinuing Temodar at this point. His doc is leaving that decision up to him. He has been on it for 15 months, and they would like him to stay on for another 8, but I don't think he will be able to. He continues to have no regrowth, so that is a miracle in itself. We are now going on 18 months!! But you are right, what a roller coaster it has been. I am sorry to hear about your dad having problems. Luckily Russ' necrosis is pretty minor so it isn't causing any side effects for him. His doc says that it may increase over time though, I guess that is what it does. He doesn't seem too concerned about it as it hasn't caused any swelling. Is your dad on decadron? That is what I have heard other people taking. Russ has never had to take it. I guess it has some negative side effects on its own, but sometimes a necessary evil. I will pray for good results for your dad in July. Please take care Rondi. I think about you too. Love, patty Marmie Wed, 14 Jun 2006 00:00:00 GMT Good afternoon, Patty! I just read your post and to say that you've been busy is most likely an ultimate understatement. It must be difficult and stressful to be in the process of selling your business and assisting in a consultant role to aid with the transition. How is Russ doing? Is he feeling pretty down in the dumps with the prospect of losing his job in Oct? Would he be eligible for some type of Medicare even if he is younger based on his health status? Sometimes, pharmaceutical companies will provide medications at no cost if a person doesn't have insurance. Also, early on in my research to learn about GBM, I came across info for patients with financial needs beyond insurance provisions. It mentioned Schering Corporation's Commitment to Care program. Perhaps they have a web-site. Otherwise, their toll free # is 1-800-521-7157. If the message board deletes the # let me know and we can correspond via the other message board that allows you to give direct e-mail addresses. If Russ decides to stop taking the Temodar, has his dr. suggested alternative chemotherapy? Take care of yourself, Patty! Sharing hope, Rondi caring daughter Tue, 20 Jun 2006 00:00:00 GMT