Justakid Posted February 11, 2005 Share Posted February 11, 2005 Stage 4, several nodules in both lungs. Start chemo on Wednesday Atlima (sp?), will two or three then retest. Without treatment I have 4mths. I know we aren't supposed to harp on statistics but I had to know. What's next, guess I need to start pulling everything together and going for some experimental treatment. Any suggestions on where, my mom says anyway in the country, she doesn't care. So tired, took one xanex and don't really know what my name is, I told Dr. F to knock me out for a few days so I could regroup. Very scared. Going in a quiting my job tomorrow, can't work through another treatment. My mother yelled at the doctor, I told her on the way home that if I didn;t make it, she had to promise me that there would be NO pain and that at the end I wouldn't know what was happening. She said that if she had to kill someone that I would be taken care of and there would be no pain. She swore to me, so I feel a little better. My Husband can't look at me without crying. Don't get me wrong we are not giving up, only thinking ahead Thanks for everything! I'm gonna need you guys! Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted February 11, 2005 Share Posted February 11, 2005 Beth, We are here for you. Alimta is suppose to be a very good drug. Charlie had it. It made him tired, but otherwise, he did well. YOU CAN DO IT! As far as clinical trials, I will send you the National Insitutes of Health trials currently going on in DC. It's time for me to do some more looking around for Charlie anyway. I will do a new search. Take care and take time to regroup. We love you and are praying for you!!!! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 11, 2005 Share Posted February 11, 2005 Beth, There are many Cancer Treatment Centers http://www.cancercenter.com/ , MD Anderson http://www.mdanderson.org/patients_publ ... isplayFull and a score of others. There's the place in Wisconsin that Dave Grant goes to (someone help me out, I cannot remember the name of the place). If it's University of Wisconsin - http://www.cancer.wisc.edu/ ANYWHERE you decide to go, you can get there. Contact the Corporate Angel Network http://www.corpangelnetwork.org/. They have different ways of getting you where you need to go for treatment, and it is free to you. Use your network here to find out specifics of where you need to go (i.e. for MD Anderson and navigating Houston, give Don Wood a shout). Let me know if there is anything I can do for you from here.... You WILL beat this dragon. Hugs, Becky Quote Link to comment Share on other sites More sharing options...
Andrea Posted February 11, 2005 Share Posted February 11, 2005 I PMd you with a dr suggestion, my mom's oncologist is k nown all over California as a "miracle worker". Quote Link to comment Share on other sites More sharing options...
slinaresholz Posted February 11, 2005 Share Posted February 11, 2005 Very sorry to hear this. Hope the new treatments will help you. My thoughts and prayers are with you. Sharon Quote Link to comment Share on other sites More sharing options...
ginnyde Posted February 11, 2005 Share Posted February 11, 2005 Dear Beth, You have got us however you need us. This is lousy news, but it looks like a plan is in place and that is good news. Let us know what you need. Prayers are on there way. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 11, 2005 Share Posted February 11, 2005 Ok, he said 4 months without treatment, how long with treatment is unknown. I hate stats. I'm not suppose to be here, but I am. Maybe I don't unserstand nodules, I have tumors, which I think are bigger than nodules, one of which has disappeared, I have had several "spots" come and go. the big tumor or super big nodule is down from 5.5 cm to to 1.9.......You can do the same thing, Don't even hint at giving up....."I WON'T LET YOU"!!!! Ask your onc about cispaltin and cpt11. I'm not going away jim Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted February 11, 2005 Share Posted February 11, 2005 Beth, sorry to hear this lousy news.Hoping and praying this treatment works well for you.We are all here for you and your husband. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted February 11, 2005 Share Posted February 11, 2005 Beth, Not much to say except, after some time start going toward the positive again.......... I gave my dad a sweatshirt for Christmas that says CCKMA (Can Can Kiss My (Fill in the Blank)) I have decided after two bouts with this stupid disease that is the way we feel and the new attitude we have adopted. Words cannot express my thoughts right now. Just know that our thoughts and prayers are with you and your family. Tammy Quote Link to comment Share on other sites More sharing options...
Calintay Posted February 11, 2005 Share Posted February 11, 2005 Beth - Please except my heartfelt sympathy. Your a strong women and will be able to overcome this obstacle just like the other ones. Two rules: NO GIVING UP and STAY STRONG! You can do it and your right it never hurts to have plans in place. Prayers being said for you! Regroup and get some rest Heidi Quote Link to comment Share on other sites More sharing options...
lilgna Posted February 11, 2005 Share Posted February 11, 2005 Beth, I agree with Jim, there are alot of us that aren't suppose to be here, but we are and so are you....Do not misunderstand , I know how scared you must be and you need support to get through this, I am certainly not trying to suggest this is not a scary thing.... I have been to the NIH (National Institutute of Health aka.. Nat. Cancer Inst.) and went through a trial, still am, they are wonderful, but you must make your own decisions, Alimta, would be a great next step, from what research I have done on it... clinical trials are the future, perhaps, getting it under control first, then a trial. You will know whats best for you... Know I will pray for you and keep you in my thoughts... blessings to you and yours. gina Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted February 11, 2005 Share Posted February 11, 2005 It breaks my heart to read your news, and I can only imagine how scary this is for you. Many good vibes and prayers are being sent your way. Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
Ry Posted February 11, 2005 Share Posted February 11, 2005 Oh Beth...I am just sick about this. Wherever you go, we're going with you. The place Becky was speaking of is the University of Wisconsin, Dr Joan Schiller I think. John may have some other trial suggestions. If he doesn't post on this PM him. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted February 11, 2005 Share Posted February 11, 2005 Beth, You have some of the most wonderful people right here at your fingertips who love you and are willing to go to all lengths for you.. YOU are family to us. There are so many resources available.. I, too, have heard wonderful things about the treatment center in Wisconsin. You can stay with me and we will drive there together... it's somewhere over there. I read about a female oncologist over there who is supposed to be quite remarkable. I will do a search and rediscover this. You just sit back and enjoy the xanax for now and all of us will get together and round up something that WILL work for you. You tell that husband of yours and your Mom to read these posts and to look and see what can be done when folks put their heart and soul into it. You are going to survive this, darlin'. You can be sure. love, Cindi o'h Quote Link to comment Share on other sites More sharing options...
karen335 Posted February 11, 2005 Share Posted February 11, 2005 Beth, Your scans were clean in January. Can you get a second opinion? Doesn't make sense. What about the Tarceva. Lots of prayers coming your way. Please keep us posted. God Bless and gentle hugs for you, Karen Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted February 11, 2005 Share Posted February 11, 2005 PMd you about several clinical trials. I would recommend you try the Alimta and be preparing for a clinical trial if you need it after that. Clinical trials aren't always all they are cracked up to be. The Alimta has been through lots of testing (3 phases of trials), etc., etc. Charlie tried a phase II clinical trial at Vanderbilt back in the fall. It had been working for many people, but not for him. I really think it took until the Tarceva to find something that worked for him after his first treatment. If he can respond after 5 attempts and keep hanging tough, you can to!!!! I like Cindi's suggestion of kicking back on the Xanax and letting us help you. Take care and God Bless You! Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted February 11, 2005 Share Posted February 11, 2005 I am bummed and heartbroken for you guys. BUT I KNOW you can beat this monster. I think you should start looking, asap, for alternatives in your treatment - I think your doctor is on the right track but it wouldn't hurt to be as aggressive as you can in seeing what your options are. I think going to National Institutes of Health in DC is a good idea. Beth, I had big plans to haul your butt camping this spring or summer, your family and ours, and I intend to still put your through it, so we're not going to let this obnoxious cancer ruin my plan. Karen Quote Link to comment Share on other sites More sharing options...
chloesmom Posted February 11, 2005 Share Posted February 11, 2005 Beth, I second the referral to MD Anderson and Dr. Joan Schiller at the University of Wisconsin. My hospital is the University of Chicago and I have total confidence in their cancer care--they are one of the top ranked in the country. Any of the big ones, Johns Hopkins, Sloan Kettering, anything that offers a trial. I will totally open my ears for any news but I think one of the big teaching hospitals is a good bet. What about Mary Crowley, where our experts are from? My prayers and thoughts are with you always, Cindy Quote Link to comment Share on other sites More sharing options...
JaneC Posted February 11, 2005 Share Posted February 11, 2005 Beth, I just did an extensive search on what trials are out there. The National Cancer Institute is a good site. You can type in your particular information and it matches you with all the trials you would fit into. I went to Mary Crowely Medical Research Center in Dallas and was VERY impressed with Dr. Nemunitis (sp?). Other recommendations for a second opinion: MD Anderson in Houston, Memorial-Sloan Kettering in NYC, Dana Farber in Boston or Cancer Treatment Centers of America. I was planning on possibly going to Dana Farber for another opinion but I was so impressed with MCMRC in Dallas, I'm planning on going there for a clinical trial after I finish this course of chemo. I think it's good your planning on taking off from work - you need all of your strength to fight this thing. Do you have Family Medical Leave benefits where you work? If you do, it will probably be better financially if you go on that rather than quitting out right (even if you plan on never going back). That way you could also possibly work a little part-time from home if you felt like it. I had a friend who just finished a course of Alimta with really good results and his cancer had been resistant to 2 other chemos. Praying for you Quote Link to comment Share on other sites More sharing options...
shineladysue Posted February 11, 2005 Share Posted February 11, 2005 Beth, This is the third time I started writing this to you. I just don't know what to say, but for now I know what I am going to do.. I'm going to pray very hard for you. I'm going to pray that someone, somewhere will come up with a plan for you. This is just so much to grasp right now and I hate those damn statistics. I hope you can rest. Tomorrow is a new day. Feel the strength of the prayers coming your way. Know that you aren't alone. Love & prayers for you and your family, sue Quote Link to comment Share on other sites More sharing options...
SandyS Posted February 11, 2005 Share Posted February 11, 2005 Hey Woman - I'm sorry you're going thru the hell that this news put you in. But you've got it right - take a day or two (and drugs if necessary) to re-group - then pull yourself up by the bootstraps and get ready to kick some butt! Boooooooooooo stats! You know better than to listen to them! Take care sweetie - and tell us what you need, Hugs and prayers, SandyS Quote Link to comment Share on other sites More sharing options...
cathyr Posted February 11, 2005 Share Posted February 11, 2005 Beth, Sorry to hear about the new diagnosis, but I must tell you that there are plenty of us still around who have nodules in both lungs after 4 months and in worse shape than you. You have age on your side for one thing that some of us don't. I, for one, have had nodules in both lungs for 14 months now. I also have mets to the adrenals. Nobody knows how long we have left, but you've got to pick yourself up and start another treatment. We all know it's not easy. None of us want to suffer at the end and we all have the same fears. So, don't give up - get mad and do something about it! Prayers are with you. CathyR Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 11, 2005 Share Posted February 11, 2005 Beth, I am so sorry at this. But Alimta is promising, so hang in there. Lucie and I can identify with you and your husband, as we struggle through one thing after another. BUT, she's still here! And so are you! Make the best of whatever time you two are given. Blessings. Don Quote Link to comment Share on other sites More sharing options...
ljdub Posted February 11, 2005 Share Posted February 11, 2005 Oh Beth, I just don't know what to say. All the way through it seems like you've had to battle so much harder than others, only to be hit harder again. Nothing about this disease is fair, but somehow it seems even more unfair for you. I wish there were something I could do to help -you know I think very highly of my onc at the Mayo Clinic and certainly would recommend their facility. I know they have one in Florida and the original one in Minnesota which I suppose are closer for you, but others are recommending excellent facilities, too. It will be hard to even know how to make those decisions but so many on this board are here to offer whatever help we can, and you know that includes me. If there is ANYTHING in the way of research or help in whatever way you need, PLEASE don't hesitate for a second to ask for it. We will all do whatever we can for you. I'm praying so hard for you, my friend. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted February 11, 2005 Share Posted February 11, 2005 My dear Beth, The most important thing I can say to you right now is to take a step back, calm down and don't react - not yet! Your emotions are on overload right now, which is understandable, but you need to give this time to sink in and settle before you make ANY decisions and start planning your final wishes. Scream, cry, rant, rave, but don't make any decisions and don't consider yourself a goner. You don't know that at this point in time, so for right now, it just isn't so. Today you are alive and well enough to TALK, which is good. You are well enough to CRY, which is good. You are well enough to YELL, which is good. You are well enough to WRITE, which is good. You are well enough to WALK, which is good, and you are well enough to THINK, which is good. Until you get to a point where you can't talk, cry, yell, write, walk or THINK, then it's not time to panic. Shhhhhhhhhhhhhhhh! Calm. Calm. Calm. Calmer. Shhhhhhhhhhhhhhhh! Love, Peggy Quote Link to comment Share on other sites More sharing options...
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