TBone Posted March 30, 2004 Share Posted March 30, 2004 Hi everyone, My doctor ordered a PET scan so we could see if I had an easily accesible tumor for the GVAX clinical trials.I had talked to the GVAX people and that is what they needed to know first.The results show a tumor in my right groin and another in my left armpit that are probably suitable.I called GVAX back and found out I am disqualified now because I have more than 3 active tumors.They knew that to begin with so I don't know if they have changed criteria or what.I have 3 in my brain,3 in right lung,1 in left lung,1 on each adrenalin gland to go along with the newly scanned ones.For right now I am going to take the path less traveled and see if I can gain some strength back.I felt much better today than I have for a while.Thanks for all your thoughts and prayers.Love all of you.TBone Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 30, 2004 Share Posted March 30, 2004 Sorry about the new mets, TBone. Glad you are going to try and gain some strength. Don Quote Link to comment Share on other sites More sharing options...
Elaine Posted March 30, 2004 Share Posted March 30, 2004 TBONE I know you must be disappointed and a bit peeved at the GVAX situation. I am also sorry to hear about new mets. Pls gain your strength and keep on looking for answers that might help. You remain in my thoughts. I guess if your sisters are my sisters then you must be my brother--like it or not lol. With all the publicity that vaccine received, I think they are being highly selective because the demand was high and the supply low. One bad thing about such trials is that when they are soooo selective, I wonder if the results they get will even be close to the results if and when this treatment becomes readily available--since in the general population of lc patients, tumor sites, sizes, nimbers, etc are so variable. Plus by being so limited in their selections, they may in fact, be ruling out patients by way of "neglect" who may in fact reap benefits from the procedure. The whole thing kind of gets to me, especially since they are also asking patients to pay for the treatment (the parts that insurance companies generally don't pay for) instead of picking up those costs themselves. Again--supply and demand???? Elaine Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted March 30, 2004 Share Posted March 30, 2004 T Bone, I am sorry that you will not be able to take part in the testing as you had planned. Glad you are feeling a little better and prayers that something can be found to get you in to remission when you are ready! God Bless, MO Quote Link to comment Share on other sites More sharing options...
SandyS Posted March 30, 2004 Share Posted March 30, 2004 Tbone - I can sense the frustration in your writing. Sorry they're being a pain! Does your doc have any other ideas on the back burner? Get some rest - 'cuz you're still gonna kick this thing's butt! Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
Tiny Posted March 31, 2004 Share Posted March 31, 2004 Oh, Tbone, this d@mn disease is so frustrating!!!! My heart goes out to you in response to the latest PET results and the miserable GVAX decisions. Rest up and stick around for love and encouragement from us. Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 31, 2004 Share Posted March 31, 2004 Hey T-bone, What can I say that the others haven't already said. I guess you need to REGROUP and then hit them with the fact that you want a game plan put in play. Oh... I know this sucks! I'm soooo sorry your news wasn't what you or any of us wanted to hear. God Bless and Stay Strong! Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted March 31, 2004 Share Posted March 31, 2004 Tbone, There's an organ you didn't mention. It's called the heart and don't ever, EVER loose the "heart" to live life as well as it can be lived no matter WHAT the situation. I know things don't look so good right now but there is still life to be lived. Take the time you need and when your ready make the decisions you need to make. I'll be there for you. Dean Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted March 31, 2004 Share Posted March 31, 2004 SHOOT!! TBone, I was hoping you would have some better news for me. Hang in there. You are a great guy with a wonderful family.......that means a lot in this fight. Good luck on coming up with a successful strategy! We'll be waiting to hear about it. Angie Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted March 31, 2004 Share Posted March 31, 2004 Sorry TBone to hear about the new mets. We too were disappointed to find out my mom wasn't a candidate for the GVAX trial. According to the researchers we have talked to they have changed some guidelines due to FDA restrictions. Glad you are resting up and feeling a bit better. I pray that you continue to feel better. Blessings to you. Quote Link to comment Share on other sites More sharing options...
Guest Thanks Posted March 31, 2004 Share Posted March 31, 2004 Hi everybody, Thanks so much for all the replies.I bought some new fishing tackle yesterday.I am feeling better each day as far as strength goes and looking forward to taking my family to Floridaa in April.I will probably opt for chemo when I do get to feeling better.I just don't think I am strong enough for it right now.And I want some quality time with my kids.Love y'all all.TBone Quote Link to comment Share on other sites More sharing options...
dusty26 Posted March 31, 2004 Share Posted March 31, 2004 TBone, Sorry you didn’t get better news from your doctor. Collect your thoughts, regroup and push forward. I work at a pharmaceutical company. The criteria and conditions for clinical trails are very strict. Unfortunately once the protocol is signed, they can not deviate on the patient recruitment. When reading a clinical protocol, I sometimes wonder if we will be able to get anyone on a trial. I do not work for a company that is working on cancer drugs. Hugs, prayers and lots of positive vibes being sent to a wonderful Southern Gentleman. dusty Quote Link to comment Share on other sites More sharing options...
J.C. Posted March 31, 2004 Share Posted March 31, 2004 Tbone, Sorry you will not get the treatment you were waiting for, but for the moment get a lot of rest and soon you will be able to make a good decision about the future. So many treatments are available that you can choose from, so do not lose heart. Prayers going xo J.C. Quote Link to comment Share on other sites More sharing options...
Ry Posted March 31, 2004 Share Posted March 31, 2004 Rest up and regroup, then kick *ss. We're all here for you. Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted March 31, 2004 Share Posted March 31, 2004 TBone, take a rest and get ready to kick some more LC-butt. My mom's primary onc. said that, when it comes to trials, the powers that be only want the "cream of the crop" so that they are more certain to get the results that are favorable. Then, when the treatment is more mainstream, the results are usually not as good because there are more patients whose "odds" are not as good to begin with. It stinks. He admitted it's a matter of getting the money for funding. The better the early results, the easier it is to get more funding. A really good strategy, as far as my family is concerned, is to stay strong as long as possible to wait out the race for the next great treatment. When the GVAX trial is done, the treatment parameters will change. You may qualify then. And the GVAX may be even better at that time! Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted March 31, 2004 Share Posted March 31, 2004 I am still sending all the positive anti-cancer thoughts your way. Quote Link to comment Share on other sites More sharing options...
Carla Posted March 31, 2004 Share Posted March 31, 2004 Having moved to centralish/south Florida (from your neck of the woods - Decatur, GA)last winter, I figured out why people move here -- not for the summers, but this amazingly nice weather that should still be around in April -- so hope you can make the trip -- it should do you some good! I confess to having sent mean emails to old friends during teh winter when it was 27 in Atlanta and we were just coming in from taking a walk in shorts! Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted March 31, 2004 Share Posted March 31, 2004 TBONE,Sorry you didn't get what you wanted to hear.I think you will feel better and better for a while.It took a month or more for me to feel better after radiation and chemo.Enjoy your trip and when you feel better mabe easier then to make decisions.GOD BLESS YOU AND HAVE A REALLY GREAT TRIP. FRANK L. Quote Link to comment Share on other sites More sharing options...
bluebayou Posted March 31, 2004 Share Posted March 31, 2004 T-Bone.. I celebrate today, a day where you feel better. I have a very strong feeling you hadn't felt anything good in a looonng time. I too needed to take a break (couldn't stand it anymore.) I stopped after 3 sessions 3 weeks ago. I go back next Monday feeling better. We'll see what the doc has to say. Enjoy your break!! God Bless us all, Francine Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted March 31, 2004 Share Posted March 31, 2004 Sorry to hear about that Tbone. Take a brake and rest up and get ready for the next step. Keep going forward. My thoughts and prayers are with you. Peace, take care and God Bless. Rich Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 31, 2004 Share Posted March 31, 2004 Tbone, Bill didn't qualify for the GVAX trial either. He is taking a break to regain strength while exploring options as well. More and more new discoveries are happening each and every day. Take care of yourself. Blessings to you, Peg Quote Link to comment Share on other sites More sharing options...
TheresaKB Posted March 31, 2004 Share Posted March 31, 2004 TBone, Sorry about your news. Take the time to rest, re-charge and re-fill with lots of energy and strength for the next phase of the gameplan. Kick back and relax and before you know it you are ready for the battle again. Lots of love and hugs to your entire family. Theresa Quote Link to comment Share on other sites More sharing options...
Andrea Posted March 31, 2004 Share Posted March 31, 2004 TBone, Wishing you and your family a fun and memorable trip to Florida! And when you turn, may you charge forward in peace with whaetver path you choose! Quote Link to comment Share on other sites More sharing options...
Guest Phyllis Posted March 31, 2004 Share Posted March 31, 2004 I am sorry you got such disappointing news. Trying to find alternative treatments is horrible especially when you read about them and then you find out there are all these strict guidelines and you feel like they are trying to write you off. Can't they do surgery on some of the tumors and maybe rfa to the lung tumors? Maybe once you get your strength back you could try more chemo. Don't get disacouraged there is always another plan to come up with. Quote Link to comment Share on other sites More sharing options...
glo Posted March 31, 2004 Share Posted March 31, 2004 T-Bone - Nothing much to say that hasn't already been said. Rest, enjoy your family, and do what feels right to you. Hugs and good vibes going out to you. Gloria Quote Link to comment Share on other sites More sharing options...
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