jcawork Posted November 12, 2004 Share Posted November 12, 2004 Ok here goes, All CT's and PET are NED !!!!!!!!!! Significant radiation damage w/ scaring-my big cough! Saw Oncologist today who said congrats on NED but I want to do Camptosar and Carbo for a few rounds (once a week for 2 weeks, then 1 week off, then do it again) to help prevent recurrance. I of course started crying because I figured w/ NED I was done. After he stated the current recurrance stats he feels the extra guns at the end like this are worth it. I had trouble listening and considered throwing myself out the window into traffic. He also wants me to do PCI (3 weeks) He gave me a break until 1st week of Dec (40 days between chemo's) and doesnt care which order I do them, PCI first or the 2 rounds of Camptosar first. I tried to convice him that I didn't need to do this and he didn't budge. I am in medicine and spent too many weeks interviewing Oncologits. He is considered a top dog around here. He is very bright. I however, am not happy about 3 more months of this. I know it's about surviving, but I am tired. Thoughts, has anyone else done this? Oncodoc Joe, thoughts? I have met NED, but feel a little like the chair was knocked out from under me. Jen Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 12, 2004 Share Posted November 12, 2004 Dear Jen, I just want to share with you that one of my Support Group members and a friend of mine, has radiation damage as well, along with a nasty cough. The good news is, she is a 4+ years Small Cell LC survivor and other then her cough, she is fine!! Somedays her cough is worse then others. Her words are: It's a small price to pay to still be here. I'm sorry your feeling overwhelmed on the additional treatments. I have heard of this being offered and as much as you honestly don't want to do, it, if it were me, I would want all they have to offer and some, just in case. But, that's me, and I understand where your coming from as you look into the next three months. But, it's only three months, and if you get 30 years from it, then it's well worth it. MORE IMPORTANTLY, CONGRATULATIONS ON NED!!! How did I forget to add this comment?? OY VEY!! GO have a cocktail or two and celebrate! You owe it to yourself! (((((((((((JEN))))))))))))) You'll make the right choice. I wish you all the best and keep you in my prayers. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 12, 2004 Share Posted November 12, 2004 Got to this one in NSCLC section I think..... Quote Link to comment Share on other sites More sharing options...
SDianneB Posted November 12, 2004 Share Posted November 12, 2004 Jen, this is GREAT NEWS!! WOW!!! Well done!! I don't know about more chemo either, but I committed to treatment early on, so I guess that means whatever they recommend for my best survival chances, I will do it! My radiation cough/wheeze is actually improving this week. I'm hoping the trend continues so that it's all gone when I go back on the 29th and 30th! I actually don't have a cough, just a few times a day that loosens the crud from the scarring. Since last weekend, most of my days have been wheeze free!!! NED is a wonderful thing. Make the decision that is best for you. Take care, Di Quote Link to comment Share on other sites More sharing options...
annjael Posted November 12, 2004 Share Posted November 12, 2004 ((((((((Jen)))))))) I know you are tired, who wouldnt be! Rest for the month or so between treatments and then you go back and fight!! Please? Remember my PM to you about Bill? We would have given anything for the doc to say "lets try this". You have the chance to win against the beast.....take it.....don't let him have another shot. Prayers and thoughts are comin at ya! Blessings Annjael Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted November 13, 2004 Share Posted November 13, 2004 JEN!!!!!!!WONDERFUL NEWS!!!!!!!! Congats on meeting NED. He's a great guy. Hang in there. I am convinced that had I not had PCI, my recent reocurance would have been in my brain instead of in my sinus cavity. You have seen all the posts concerning PCI but if there is anything available that will increase the percentage of the rate of survival I would not hesitate to do it. You have come a long way Jen. I say take the break, gather your strength and continue the fight. I am so happy fo you, I know it has been a rough ride for you but you did it!!!!!!!! David C Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted November 13, 2004 Share Posted November 13, 2004 Jen,congratulations and good job.Time for a celebration. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted November 13, 2004 Share Posted November 13, 2004 Jen, My surgeon about pleaded with me to continue with the extra two chemo following surgery. I was surprised, as I had not considered NOT doing it. But if he were going to plead, if it was that important in his mind, I was certainly going to follow his advice. He literally held my heart in his hands, and accepted the surgical challenge when most surgeons wouldn't have. He's truly world class, and I took his advice. How? One step at a time, one foot in front of the other. One day following another. Congratulations on NED. Let's see you keep it that way. XOXOXOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
MayFrog Posted November 14, 2004 Share Posted November 14, 2004 Jen, So happy NED is in your life!! If it were me, I'd want to do everything under the sun to keep him with me, and if it meant more chemo and PCI and all the discomfort that may go along with that, then so be it! My feeling is it's a small price to pay for such a beautiful outcome!! Take the time to really think this through.......it's a personal decision only you can make, and I trust you'll make the right one. I'll keep you in my thoughts......... Mary Quote Link to comment Share on other sites More sharing options...
Andrewsmom Posted November 16, 2004 Share Posted November 16, 2004 I chose my oncologist specifically because he does something similar to what yours is recommending. After the carbo and VP-16, simultaneous radiation, and PCI, my onco then gave me several weeks of Comptosar (spelling?) and Taxol (I think). When I interviewed him as a potential oncologist he told me about the "extra boost" and said he didn't have statistics to prove it but it just made sense to him. I'm not going to lie to you, those final treatments made me sicker than I had ever been up to that point, but it was worth it. I am nearly 3 years from dx and I am confident the CA is not coming back. Quote Link to comment Share on other sites More sharing options...
Don Posted November 17, 2004 Share Posted November 17, 2004 After the carbo and vp 16 my onc said things are really looking good and decided that while the cancer was weak he wanted to kick it more with Topoteacan. Cleaned me up very nicely. I really believe that agressive treatment pays off in the end but you have to really get tough and just know that the end of the treatment is in sight. This next treatment is short term compared to the many years of clean health you are going to have so hang in there. God Bless Don Quote Link to comment Share on other sites More sharing options...
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