rocknrollpaddy Posted October 16, 2009 Share Posted October 16, 2009 I'm having CT scan this Sunday at 10 am. The Navilbene is working, hopefully. My last 5-6 scans have shown tumor growth and progression. Alimta, tarceva, avastin, a couple of trials: all ineffective. Hoping for good news next Tuesday, with the scan results. Quote Link to comment Share on other sites More sharing options...
Kasey Posted October 16, 2009 Share Posted October 16, 2009 I'll be thinking of you Sunday - good luck - and hope to see you come back with some encouraging news. Kasey Quote Link to comment Share on other sites More sharing options...
dianew Posted October 16, 2009 Share Posted October 16, 2009 I will be saying prayers for you on Sunday for a good scan. God bless, Diane Quote Link to comment Share on other sites More sharing options...
Connie B Posted October 16, 2009 Share Posted October 16, 2009 Gounds like a GOOD day to have a CT scan! Sending you Positive Vibes and adding prayers. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted October 17, 2009 Share Posted October 17, 2009 Lots of prayers coming for good results to that Sunday scan!!! I will be watching this spot. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
beatlemike Posted October 17, 2009 Share Posted October 17, 2009 More prayers said for good results!! Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 17, 2009 Share Posted October 17, 2009 Looking for those good results, too! "Navy bean" is one I haven't been on yet. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 17, 2009 Share Posted October 17, 2009 Will be sending much positive energy your way on Sunday. Will be waiting and watching for your results. Judy in Key West Quote Link to comment Share on other sites More sharing options...
barbvh Posted October 17, 2009 Share Posted October 17, 2009 Sending prayers for good results on your scan tomorrow. Quote Link to comment Share on other sites More sharing options...
rocknrollpaddy Posted October 21, 2009 Author Share Posted October 21, 2009 Guess I need to get a new vinyl copy of the Allman Brothers "Live at Fillmore East." Keeps skipping. Same deal w/ my CT scan results. Spreading in both lungs, liver and lymph nodes. Haven't had a good scan in almost 1 year. My onc. wants me to go off navalbene and go on a phase one clinical trial. Been there done that. Means lots and lots of travel to Boston (1 1/2 hours 1 way on a good day). I will ask the onc. "Why should I do this trial." And I know she will say "Because we think this has the best chance of succeeding." How do you respond to that? When do you say enough is enough? When I played sports, I'd like to be able to say that I played hard until the final whistle, no matter the score. But I didn't, and I always thought that guys that did when the score was massively lopsided, were nuts or a-holes. Feels like cancer is running up the score here in the final period. I always knew that the final outcome was never in doubt. But now it feels like its the end of the match, I'm tired and sore, w/ cleat-marks on my back from being run over by Team Cancer, and I just want the match to be over. I think my gut instinct is to look beyond the positive spin of the health care professionals and take a long cold, hard look at reality. I'll spend a few days and think and pray about it. On the one hand I have to leave no stone unturned for the sake of the wife and kids. On the other hand, the side effects of the meds are causing some serious quality of life issues, and the getting stuck in Boston traffic is getting old. Maybe its just the cumulative effect of so many trips to Boston w/ no tangible results. My lungs feel like two red bricks sitting in my chest. Thank you to everyone that was thinking of me on Sunday when I had my scans. I actually allowed myself the luxury of a little bit of optimism going in, which I suppose makes getting the bad news today a bit tougher to swallow. On a happier note I am going to Ireland in December w/ my uncle Bill to see the family there. Looking forward to that! Quote Link to comment Share on other sites More sharing options...
fillise Posted October 21, 2009 Share Posted October 21, 2009 I'm sorry you didn't get better news. It stinks, no two ways about it. You are the only one who knows what you are ready to do. If you are ready to focus on quality of life issues, I think that still constitutes playing hard until the final whistle. Living life on your terms--like going to Ireland--is fighting. Keep us posted on what you decide to do. We'll be here to support you no matter what. Susan Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 21, 2009 Share Posted October 21, 2009 Brian, I'm really sorry to read this. I was hoping the Navelbine would have brought you back to stability, but realistically, the chances of that were slim since Alimta and Tarceva and the trials were not helpful. I fully understand where you're coming from, and in your situation I'd probably feel the same way, though some might encourage you to keep going with treatment no matter what. It boils down to a person's philosophy of life, what comes next, what's important here and now, and I can't say my approach is right and someone else's is wrong. But if and when I become convinced that further treatments are futile, I know I'll spend whatever energy I have remaining to try to correct things in my life that I haven't already managed to correct in the past 3 years, and that I'll do everything in my power to make the transition as easy as possible for my family. I must admit that taking that path would be easier for me than for you, since my kids are all grown and on their own. All I can offer is my understanding and Aloha. Ned Quote Link to comment Share on other sites More sharing options...
dianew Posted October 21, 2009 Share Posted October 21, 2009 What lousy lousy news - I am so sorry. I can't add much to what Susan and Ned had to say. I haven't been through as much as you have at this point, but I have thought about it a lot since the trial I am on has few side effects, the chemo has worn off, and I'm feeling great right now. I am not anxious to feel otherwise, so have given a lot of thought to what I will do when the cancer progresses and they bump me off the trial, with plans for more treatment. I will be keeping you and your family in my prayers. Whatever course you decide on, I hope you have a GREAT trip to Ireland! Diane Quote Link to comment Share on other sites More sharing options...
shineladysue Posted October 22, 2009 Share Posted October 22, 2009 I'm so sorry to be reading these scan results. I never know what to say. Just know that my prayers are with you and your family. Please keep us updated. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 22, 2009 Share Posted October 22, 2009 Brian, I'm so sorry about your scan results. It is quite a dilemma you face. My primary care is in Orlando and I know how difficult the travel can be. But I don't have young children and have the luxury of going and staying in our motorcoach not same-day fighting traffic back and forth. I agree with Ned, for many of us quality of life ultimately takes presidence over survival. But, like he said, that is much easier when you don't have a young family. I've made survival for my grandson who has lost two important people in his young life to cancer as an incentive to survive. If it looked like that were not possible anymore, I may shift my focus to helping prepare them for my leaving them, living life (ala Susan's post) and certainly enjoying that trip with family in Ireland. Judy in Key West Quote Link to comment Share on other sites More sharing options...
rocknrollpaddy Posted October 22, 2009 Author Share Posted October 22, 2009 Thank you for the replies. Its amazing how much we have in common, having been hit by this disease. Judy and Ned, you hit the nail on the head. Just trying to get through the day 1 hour at a time here at work. I'm not making any decisions for several days. I am now reading Dr. Ira Byock's "Dying Well" which is very hard ( i.e. lots of tear breaks) to read, but its something I need to do. Very much looking frwrd to my Ireland trip. I am hoping to write some things for my boys while there, if I get a chance to exhale in between all the gabfests and seisuns. Thanks again for responding. Quote Link to comment Share on other sites More sharing options...
rocknrollpaddy Posted November 4, 2009 Author Share Posted November 4, 2009 I guess I crossed the Rubicon. Port replacement surgery caused a blood clot to form in my neck which I guesss is a huge deal. I am now on twice daily Lovalox injections. I now have brain lesions and now am on full brain radiation. Maybe I would have gotten the clot and lesions and the seizure I had last week anyway. I have no ability to control my left foot. I need a cane to walk now. Seems assinine to have to go through all this, caused by port replacement surgery. I also need to have some kind of super duper stereotactic brain radiation where theybolt my skull to a frame. Quote Link to comment Share on other sites More sharing options...
fillise Posted November 4, 2009 Share Posted November 4, 2009 Brian, I'm sorry to hear about the blood clot and brain mets. Many folks have done very well with both the WBR and the SR. I'm betting you will too. Susan Quote Link to comment Share on other sites More sharing options...
jaminkw Posted November 4, 2009 Share Posted November 4, 2009 Brian, that all sounds just HORRIBLE. This post give you permission for one big WHINE FEST. It's my major way of relieving cancer-related stress. I announce "I wanna whine" and my husband gives me permission. Does he have a choice? Hang in there guy. We'll be waiting for your updates. Judy in Key West Quote Link to comment Share on other sites More sharing options...
dianew Posted November 4, 2009 Share Posted November 4, 2009 Brian - I am so sorry at this latest -- it just stinks. I do want to thank you for posting this - my doctors want to redo my port, which they tell me is in a "suboptimal" position. Suboptimal may be OK. Many prayers for good WBR and SR results. Diane Quote Link to comment Share on other sites More sharing options...
recce101 Posted November 4, 2009 Share Posted November 4, 2009 Bummers again, Brian! I'd have never thought about that happening from port replacement. But then I wonder if it could also happen with just removing a port? For someone to have that happen, thinking they were through with treatment, would be a double bummers! Ned Quote Link to comment Share on other sites More sharing options...
Patti B Posted November 4, 2009 Share Posted November 4, 2009 (((((Brian)))) Seems sometimes like when it rains it pours!!! I am so sorry for all these latest developments. Have you been on Gemzar yet??? I have been on them all, you name, I hae been on it and all of a sudden this Gemzar is giving me shrinkage!!! Maybe you might want to try that before a trial. As far as WBR goes, I just finished 15 treatments in August. Other than losing my hair AGAIN, I really had no bad side effects at all. I wish that for you, too. Oh, and I used to have do give myself those Lovenox shots - fun, huh???? Why you have to give anything to yourself in the stomach is beyond me!!! I truly hope none of this interferes with your trip to Ireland - and I hope you have a wonderful time there. Hugs - Patti B Quote Link to comment Share on other sites More sharing options...
barbvh Posted November 5, 2009 Share Posted November 5, 2009 Brian, Sorry to hear your latest news. My prayers are with you. BarbVH Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 7, 2009 Share Posted November 7, 2009 ok, Brian, Brian, Brian............I love that name................ I want to say you are very close to my heart. I pray for you and your family every single day and think of you. My Brian read that book. I made him a 'thinking~praying place' in our home where he could read and reflect and no one could come in unless invited. It was an honor and delight to be invited. When is your trip to Ireland? I hope you get to go to Kiely's Pub over there, a friend of mine's family has owned it for years! I can get the exact location for you................ I am not so dense as to think Ireland is a tiny little country where everyone knows Kiely's, but the vibe would suit you! In honor of your sports analagy I am calling 'piling on' and throwing the flag. Please know that I am praying for you and that I care. Uploading all respect and support for your valiant approach to LC. P edited to correct spelling of Kiely's Pub Quote Link to comment Share on other sites More sharing options...
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