cathyr Posted January 9, 2004 Share Posted January 9, 2004 Hi family, I just seem to get one bit of bad news after another and I'm not sure how much more I can handle. Six weeks ago I discovered that my surgeon in L.A. has misdiagnosed a recurrance of a lung tumor that could have been removed a year ago had he just done a biopsy. A pet scan indicated that the tumor was only in the lung. During surgery in San Diego, it was discovered that three lymph nodes removed were full of cancer. They never lit up on the PET scan. The anesthesiologist scratched my voice box with the tube down my throat and my voice is an octave higher than it should be. I am also having problems pronouncing some vowel sounds. It has not corrected itself like they said it would. It has been 5 weeks since surgery. As if that wasn't enough it now appears several small tumors are starting on my right lung. The original cancer was to the left lung. I have now been restaged from 2B to 4. I was offered a clinical trial to participate in that would allow me to take a new drug called Avistan. It is supposed to cut off the blood supply to the tumors. I was to have a 50% chance of being chosen to get the drug. As you probably can guess, I found out today that I will NOT be receiving the Avistan. I start chemo this coming Monday. It is my first encounter with it and I'm scared, discouraged, and having such a hard time handling all of these set backs. I feel like the unluckiest person ever. I lost my husband to lung cancer almost 4 years ago and it been downhill ever since. If it wasn't for my family, I would probably take some pills and sleep forever. I just can't believe it can be this difficult. I needed some good news so badly this morning and I am devastated that I can't get the clinical trial drug. I feel bad asking for help from all of you who are suffering just as much as I am, but I don't think I can get through this without it. What do you do when it all seems so hopeless and even the experts let you down? Thanks for listening and I still pray for us all even though these days I'm not sure God really listens. CathyR Quote Link to comment Share on other sites More sharing options...
gail Posted January 9, 2004 Share Posted January 9, 2004 We are all standing right behind you, so lean on us. I discovered Dr. Bernie Siegel's meditation tapes during my mastectomy and chemo. To this day, hearing his voice calms me. You can get them online at amazon.com. His group also has a website http://www.ecap-online.org/ I actually got some responses from him. One day at a time. gail Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 9, 2004 Share Posted January 9, 2004 Cathy, I'm sorry for what's happening. When my mother was diagnosed I read a book by Bernie Siegel, called "Love, Medicine & Miracles" . It really helped me a lot. Somehow you will get through this. My thoughts are with you. Kim Quote Link to comment Share on other sites More sharing options...
norme Posted January 9, 2004 Share Posted January 9, 2004 Cathy, I couldn't sleep so I have been on here reading and reading and came to your post. At first I felt so down for you but you know what. You are a fighter, you don't know that this next round won't love you. I saw on our local news last night about a trial drug called 2C4 and that it has a 40% remission for people with various types of cancer and one of them is lung. Check into that. It is being done in Cincinnati and maybe your area too. You and I both know that we have today and that is all we have. We have only ourselves to really count on doing things right. Don't worry about your voice for that is the least of the problem. Buddy's voice is a whisper since his first operation. When you get all other under control, then work on the voice. I know you must really be down right now but try and get your mind on all the good things in your life, these past 4 yrs may not have been but I bet the years before and the years to come will be. Let the family help you right now. I know they are wanting to. Anytime you want to just talk, pm me. I am here to listen. Quote Link to comment Share on other sites More sharing options...
cathy Posted January 9, 2004 Share Posted January 9, 2004 Dear Cathy, I am sorry all this is happening to you. I cant imagine what it must be like for you. I am a little confused about the misdiagnosis. Do you think maybe a new team of doctors should be considered? I wish I had the answers for you. I know there are some that go through chemo and the only side effect was a little fatigue, so maybe that will happen in your case. Dont give up hope Cathy, we are all here to support you. Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted January 9, 2004 Share Posted January 9, 2004 Cathy, I am standing there with you, holding your hand through this. Lean over onto me. Course, I am leaning on everyone else here as well so were quite the crooked group right now. I am running low on strength and hope right now at the moment too but whatever I can pull up from way down deep in my belly is yours to have. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 9, 2004 Share Posted January 9, 2004 Cathy, bummer! So sorry you are having to go through so much at once. I know you are a fighter, though, and with our support here, you can get through this. Hang in there, and fight! My prayers are with you. Don P. S. I believe God listens even when we think he doesn't. Quote Link to comment Share on other sites More sharing options...
bphyllis Posted January 9, 2004 Share Posted January 9, 2004 Hi, I don't post often, but I think the one thing you have to keep in mind is that the tumors are small and hopefully very susceptible to whatever type of chemo you do with or without a clinical trial drug. I am on my third clinical trial drug so even if you don't get this one drug there are other clinical trials you can ask about if this chemo doesn't work. I have felt the same way you do about being tired of all of this, but because of my daughter that is not an option for me either. Things will get better, and just don't panic. Chemo is not that bad. It may work pretty quickly for you. Quote Link to comment Share on other sites More sharing options...
Debaroo Posted January 9, 2004 Share Posted January 9, 2004 Cathy, I am sorry that you have to go through this thing. I think that Norme had a great suggestion, there are other clinical trials out there! I had contacted Yale University Medical Center regarding the article that Cathy was kind enough to share with us regarding transimmunization. I wrote them a letter and sent my dads medical records. It sounds like such a promicing trial. And there are others out there too. Did they say WHY you did not quilify to be a part of the Avistan study? Maybe another doctor could get you in on it. I just hope that you know that we are here for you. If the saying is true that there is strength in numbers, than you should start feeling really strong soon!!! We are with you 110%! Take care, and keep us posted, Deb p.s. I am with bphyllis, read that post again and again!!! Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 9, 2004 Share Posted January 9, 2004 Cathy, Hold my hand and squeeze as hard as you can. Take a deep breath, slowly, and then every so slowly, let it out.... now do that again..... I strongly recommend a nice hot bubblebath with some soft music that you love, and a nice nap under a warm blanket. On waking up, have a nice cup of tea. Repeat until you are ready to deal with the whole sucky situation. Remember, just keep putting one foot in front of the other... taking one day at a time. grab my hand and squeeze it, cry on my shoulder, lean on me (us).... You are NOT alone. We are here... God grant you strength to cope. and tomorrow may look brighter. Warm hugs... MaryAnn Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 9, 2004 Share Posted January 9, 2004 Cathyr, I private messaged you but decided to post this info here for you to read. At Cedars Sinai a Dr. David Agus is running a clinical trial for the drug 2C4 (also called Omnitarg), and they are recruiting patients who have lung or prostate cancer. It's a new therapy that targets the pathway, rather than the tumor itself, and as a result there are fewer side effects. They've done a study involving 22 patients with breast, prostate, lung, ovarian, colon, and pancreatic cancers. And almost half of those had shrinkage of more than 50% or stabilization of tumor growth. So please check into this. You hang in there.... I know it's easy to become discouraged.... but we have a lot of living to do yet, and we can't give up now. Fay A. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted January 9, 2004 Share Posted January 9, 2004 Cathy, I have no magic words to add, just that my thoughts and prayers are with you. Ginny Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted January 10, 2004 Share Posted January 10, 2004 Cathy, I am sorry you are having this happen. Keep your chin up and concentrate on fighting an beating this crap. Come on, you can do it. Don't worry about the chemo, bring a book or some tapes to listen to and just remember there are a lot of people here who have recvd chemo or are receiving chemo now. Just picture the chemo coursing through your body attacking and killing all th cancer cells. You will be in my prayers. David C Quote Link to comment Share on other sites More sharing options...
Nancy O. Posted January 10, 2004 Share Posted January 10, 2004 Hi Cathy, just wanted you to know that I'm here with the rest of the folks to lean on when you need to. It seems that you have already been given a lot of positive feed back, so just hang on and take it one day at a time and one thing at a time. Sending good thoughts your way. Nancy O. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted January 10, 2004 Share Posted January 10, 2004 Cathy, I sometimes feel so alone in my diagnosis. My friends, and family offer what support they can, but nobody truely understands what we are going through unless in our shoes. My husband will say "The internet brings you down, so you need to stay away from it!" Yes, the internet does bring me down at times, but this board lifts me up! The people here know my pain and have walked in my shoes. No where else have I received this kind of support. However, I must admit that I have invested myself emotionally in the members of this board and share in their triumphs and sorrows. I sometimes have to take a timeout to strike a happy medium. I do my best to do things that give me joy. I agree with the above posts, read positive books, take a hot bath, walk, talk to people, start a hobby, volunteer (helping others takes the focus off myself), attend fellowship services. The list goes on and on. Cathy, I remember thinkng..."I cannot plan for the future, because this disease will eventually take me. O. K., I rationalized, but when? I could be here for ....perhaps years. What am I going to do...sit around and wait for it. NO!!!! Live! Live! Live!" Cathy, I struggle with depression, and my "self-talk" isn't always so positive. I realize that I have been maintainig my own depression. So, I had my doc change my antidepressant, which wasn't working very well (if not on one please consider it.) Also, seek counseling, it does help. I know your anxious about chemo. I will not sugar coat it, it was tough. Mainly due to the fatique. My hair loss wasn't as big a deal as I thought it would be. My wig was really cool! I had problems eating due to the radiation, which I did at the same time. But atleast I was fighting this disease!!! I remember climbing into the recliner for my chemo and thinking " Give it to me, I am ready to kick this "f-ing cancer." Mind you I don't normally sware, but cancer really pisses me off! Ha! I refuse to go "silently and softly into the night!!!" Nope, it will have to take me kicking and screaming!!! Cathy you just had the wind knocked out of you, but get mad at this disease and we are here to help you fight! Cheryl Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 10, 2004 Share Posted January 10, 2004 Cathy, I am sorry to hear about all the things that have been happening to you. What type of chemo are you going to be getting? I was afraid also of the chemo and so were so many here on this board. You just don't know what to expect or how it is going to effect you. Everyone reacts differently to chemo. Just keep a positive attitude and when closing your eyes, invision the chemo eating away at the cancer and it being gone forever. Please make sure that you drink plenty of water and stay hydrated. I wish I could help you more. My heart goes out to you and remember there are a lot of people thinking about you. You are in my prayers and I know you will beat this disease. You are such a positive person and have been a lot of support to so many of us on this board. We are all here for you and God does here our prayers. Keep the faith and believe... Peace, warm hugs and God Bless Karen Quote Link to comment Share on other sites More sharing options...
bobmc Posted January 10, 2004 Share Posted January 10, 2004 Hi Cathy; Just wanted to let you know that you are in my thoughts and prayers!! Like you, I have been recently restaged to IV, not something that any of ever wanted but then it is what it is. I think the ladies have given ya some great advice as far as relaxing a bit and I can't really add to it. Except to tell ya that your not alone and that the most important thing I am TODAY! is a Survivor! When I stay grateful and try to enjoy what I have today, I seem to be better off. God bless and hang in there!! Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack PET taken 1/5 - hot spot in mediastinum May be cancer?? "Absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 10, 2004 Share Posted January 10, 2004 Cathy, Praying that the new chemo will do wonders for you. Bill is also on Gemzar and the main tumor stabilized the first two months and then it shrank 30% the next two months. We are all with you and here for you, Peg Quote Link to comment Share on other sites More sharing options...
Guest Posted January 11, 2004 Share Posted January 11, 2004 Cathy, There isn't much I can add to all that has been said so wonderfully. I'm here most nights because no one else understands living with this thing. We have to keep fighting because each new day can bring a new treatment or development that will help us all. Hang in there and hopefully things will look better very soon. I'll be thinking of you. Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 12, 2004 Share Posted January 12, 2004 Hi Cathy, Just wanted to lend you a little more love and support from another one of your OTHER family members here. Dont' be scared of the chemo. Instead walk in there tomorrow and say to yourself OVER and OVER again, " I CAN DO THIS, CHEMO CAN BEAT THIS" Do you know that the majority of people DON'T get sick from chemo? I didn't either! I know a LOT of people that do well with chemo's. But, turst me when I say, after your first treatment tomorrow, you'll be a pro! And the chemo will kick this cancers *ss and you'll be a stage IV lung cancer survivor just like Bob Mc, and Ray, and Buddy, and Keith, and many many others will be. I have a lady in my Support Group who will be a 4 YEAR Stage IV lung cancer survivor come NEXT MONTH and she is in remission. She is doing AWESOME and you would never know she had or has cancer. So my friend, you can be a long term survivor as well. I know what you mean about when it rains it pours. I felt that way this last August when they opened me up to removed that heart tumor and do a wedge resect on me and had to close me up because I started to bleed. Talk about waking up and hearing "we didn't do what we wanted to and will have to have a RE-DO" OY VEY, not what I wanted to hear, BUT, Not much I could do about it, but to have a RE-DO and by the grace of God pulled through it. I just count my blessings for TODAY and that's all I can do. Today is a GREAT DAY TO BE ALIVE, a friend of mine says, (who is also a lung cancer survivor) and I have learned to try and live by that. We are here for you, and you know you can dump, scream, cry or what ever, and we will hold your hand and send you hugs. I'll be cheering on the chemo tomorrow, and Cathy, I know you can do this. You didn't come this far to let it get to you without a hell of a fight. Hugs and Prayers. Quote Link to comment Share on other sites More sharing options...
berisa Posted January 12, 2004 Share Posted January 12, 2004 Cathy, I understand how you feel and how discouraging it is. But, fighting spirit keeps you fight. Try to be positive to look for another trials or treatments. Time is important and precious. Only let yourself be down for a little while After that, you are still the fighter and the warrior. Any support groups you could have in your area? Or how about your family members and friends? It is good to tell your feelings to others while you are so discouraged and moody. It is kind of relieve..... Cathy, we are all here to help and we are all ears......you are in my thoughts. Quote Link to comment Share on other sites More sharing options...
Laurie Posted January 13, 2004 Share Posted January 13, 2004 Cathy, If you need anything I'm right of route 5 about 20 minutes away... I have exp with chemo and would be glad to help out anyway I can. Don't hesitate to ask! You will be fine... Lots have been through it...(easy for me to say but) just try to drink and take your meds and rest,rest,rest... Bless you Laurie Laurie Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted January 13, 2004 Share Posted January 13, 2004 Cathy, I am sorry you have hit this wave of bad news BUT I am confident you can beat it! Attitude is everything!! God Bless, MO Quote Link to comment Share on other sites More sharing options...
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