CancerCompass message board discussion started by Drewty on 3/3/2006 http://www.cancercompass.com/message-board/message/all,4679,0.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/ Patty and Gagbm....it's Kim. I'm a mess. Mike just had his Mri today after 4 rounds of Avastin and CPT-11. They've discovered another tumor growing alongside his original one. In 4 weeks this new tumor has shown it's ugly self. Please, if anyone knows of any other chemo options you've heard of working, please give me some faith. His Dr. is doing a new scan with dye on Wednesday to get a better idea of what this tumor is doing. We will meet next Friday to discuss if we have any options. I feel like I'm in a nightmare. For 4 weeks we've been fighting our insurance to cover these drugs and now all for nothing. Mike's had horrible headaches and now his vision is messed up as well as his chewing ability. I'm so frightened of losing him. Please tell me there still is hope...Kim Drewty Fri, 03 Mar 2006 00:00:00 GMT Hi Kim, I am very sorry to hear about Mike. I am writing to you because you asked about other chemo treatments. My mom was dx with GBM in July and had surgury Aug. 1st 2005. Since then she has had two MRI's both clear and no sign of regrowth. The only drug she takes besides Temodar (her chemo) is an anti seizure medication. She tolorates the Tetmodar extremely well. She went to Duke to consider a trial but opted against it because she is still doing so well. She is 60 and very healty aside from the tumor. Maybe ask about Temodar, she is not the only person on this site having success with it. Good luck, Dana Hopefully Sat, 04 Mar 2006 00:00:00 GMT Thank you for responding. Unfortunately, 4 years ago when Mike was first diagnosed, he had radiation and Temodar for 18 months. We truly believe the radiation shrunk his tumor. When the regrowth started again in October, they put him on Temodar. Actually as of last Friday, he was on Temodar days 1-7 and IV chemo with CPT-11 and Avastin on day 5 every other week. So, the Temodar wasn't working either. We cannot do radiation again as they said his brain could not tolerate it and would likely not survive it. I know there have to be other options and I just hate waiting until Friday to talk to our Dr. again after his scan with the dye on Wednesday. I think what frightens me the most is 4 weeks ago the tumor had not grown more and there was no sign of this new tumor alongside it. 4 weeks is too fast for a new tumor to start. What am I going to do? I'm so scared of losing him. I'm sorry to dump all this on you. He's only 41 years old and my boys ages 10 and 15 still need their dad so much. We have agreed we will go wherever we may need to go to seek more help. I hate this so much. How do I cope? I'm a mess. I cant lose hope right? All I hear echoing in my head is his nurse pulling me aside and saying to me that this isn't good. His tumor is wrapped around his brainstem, there is just not room in there for it to grow much without major functions being affected. It's so sad. Thank you for listening.I'll keep your mom in my prayers.Love, Kim Drewty Sun, 05 Mar 2006 00:00:00 GMT Kim I am so sorry to hear about your husband. It is heartbreaking. It sounds as if you are all fighting as hard as you can. Keep that up! Don't let the doctors scare you. Try to take just one day at a time. I know with this disease it is a roller coaster and there can be many changes in a short time. I see this in my father. I have found seeing a councelor helpful on my own and we (mom and I) are seeing one through hospice. I find this helping me to cope with the pain of the situation, helping to keep me from being too overwlehmed -one step at a time, and helping my mom and I stay close and support each other through this process and months ahead..I don't know if that is an option for you. I know it seems natural to put all focus on the gbm patient but it is really wearing on the caretakers --we do only one hour a week. Also --My mom and I are getting many offers from family and friends who say "let me know if there is anything I can do" If you have family and friends asking let them in and give them tasks --this may help ease some of the stress about keeping up with everything. We have asked our angels to mow the lawn, pick up groceries, help lift my father and take him out for a day. I am praying for Mike you and your children. Glad you are posting..let us know how things are going. My father has had some luck with temodar--no regrowth the first round then some into the right temporal from the MRI last week. I don't know of any other meds. Have you checked at Duke? Take care of yourself. Christine White Kitty Mon, 06 Mar 2006 00:00:00 GMT Hi, I have found some new drugs from another message board that I read. Duke University is offering this one. Have you tried Gleevac mixed with hydroxera? Some are having good results with this mixture and some have been mixing Gleevac with temodar. I am so sorry about your husband. You are in our prayers. Dawn Dawn37 Mon, 06 Mar 2006 00:00:00 GMT Hi Kim, I am so sorry to hear about Mike, you must be so scared. I am sure that Mike's doctors must have some gameplan, hopefully they will be able to offer something that he hasn't tried yet. I know with Russ, they always say that when the Temodar stops working, they will go to plan B. I'm sorry Kim, are you at a major brain tumor center? Please refresh my memory. I'm also sorry it took me so long to respond, I was out of town last weekend. But I feel your fear. It is of course what we all dread, but bury it inside and try not to think about it. I too am becoming increasingly worried as time goes by because we are at the 14 month mark, and his doctor has said to start bracing ourselves because it could be anytime. It's horrible, how do you brace yourself for something like this? I will be thinking about you Kim and praying for you and Mike. I wish I could be of more help, please keep us posted. And hang in there honey. Fondly, Patty Marmie Mon, 06 Mar 2006 00:00:00 GMT Hi Kim, I am so sorry to hear about Mike, you must be so scared. I am sure that Mike's doctors must have some gameplan, hopefully they will be able to offer something that he hasn't tried yet. I know with Russ, they always say that when the Temodar stops working, they will go to plan B. I'm sorry Kim, are you at a major brain tumor center? Please refresh my memory. I'm also sorry it took me so long to respond, I was out of town last weekend. But I feel your fear. It is of course what we all dread, but bury it inside and try not to think about it. I too am becoming increasingly worried as time goes by because we are at the 14 month mark, and his doctor has said to start bracing ourselves because it could be anytime. It's horrible, how do you brace yourself for something like this? I will be thinking about you Kim and praying for you and Mike. I wish I could be of more help, please keep us posted. And hang in there honey. Fondly, Patty Marmie Mon, 06 Mar 2006 00:00:00 GMT Kim....i don't want these to be empty words and i don't mean for them to be the same old stuff, i'm hurting for you guys and my heart is heavy, and we are all praying for you and your family. We patients sometimes feel like its all about us ...but its not...you guys who are caregivers need love and support. you give it all away, all the time and you need to replenish. Go talk to a counselor and let it all out. Fight the bastard with all you got and let people help who have offered to help. Don't feel ashamed and don't feel bad about it. Use friends and neighbors and let them be blessed. They're probably just repaying what you've done in the past or will do in the future. God bless and guide you, and keep in touch. Garland Mon, 06 Mar 2006 00:00:00 GMT Thank you all so much for rallying around me. I wish I could give you all a hug right now. I am going to make a point to call someone to talk to. I am one of those people who thinks, "I can handle all of this by myself"...but I can't. I will keep you all posted on what we find out this week. God Bless you all! Love, Kim Drewty Mon, 06 Mar 2006 00:00:00 GMT Kim, from your message it seems the CPT-11/Avastin is not having the desired effect. Until you get the radiologist report your doctors won't know for sure what is going on. The radiologist will need to eliminate the possibility the new tumor is necrosis, or even bleeding, from your husband's treatments. If this is indeed regrowth of a new tumor, they might be able to 'gamma knife' it if the size is small enough. Gamma knife delivers a killing dose of radiation to a very precise site and is still a possibility for many who have had external beam radiation. There are some who have had success with the EGFR inhibitor drug Tarceva. In addition, Gleevac is being used in some places. If Temodar and CPT-11/Avastin are not working, your choices do get a bit narrower. You probably also want to investigate clinical trials. Have you talked to Henry Friedman at Duke? Duke will review your husband's MRI and let you know if they have something they can offer you. This site strips phone numbers and web links but I will be happy to get you those numbers if you need them. Gagbm Thu, 09 Mar 2006 00:00:00 GMT