GlendaG Posted April 20, 2004 Share Posted April 20, 2004 Hello, My husband, Wayne, and I have been on this roller coaster ride since December 10th of 2003 when he was dx'd (adenocarcinoma, stage IV). He had hip replacement due to the tumor causing a break. He has had new mets to his vertabrae ( very small) and radiation to those. He just had an MRI of the brain last week and 2 very small tumors were discovered and now he is starting whole brain radiation. He had 2 treatments of chemo (taxol & carbo) and 5 treatments of a clinical durg (ABX-EGF); this was stopped on 3/23 because even though his lung tumor (left side) was shrinking, new bone mets were discovered. He is due to start another line of chemo this week or next. All the research I have done since Wayne's diagnosis has caused me to have overwhelming fear at certain times. I never realized the poor prognosis for lung cancer. All the publicity seems to be on breast and prostate. I never realized that lung cancer took more lives each year than breast, prostate and colon cancers combined. Have any of you had chemosensitivity done to determine what chemo should be more effective? Thanks for listening, Glenda Quote Link to comment Share on other sites More sharing options...
TheresaKB Posted April 20, 2004 Share Posted April 20, 2004 Hello, Welcome to the board. You have come to the right place. In no time at all you will meet some of the most caring, loving, positive and supportive people ever afflicted by this disease. There are a lot of long term survivors on this board. As for chemosensitivity, this topic has been discussed here a number of times. Just click on the "Search" button on this site and type in "chemosensitivity" and you will find some posts about it. Again, welcome. I am sorry you have to find us but I am glad that you did. Theresa Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted April 20, 2004 Share Posted April 20, 2004 Glenda, So sorry you have to be here, but you have found the best place for support and caring! Please don't let the statistics bring you down. There are so many stories of hope and people beating lung cancer. I pray your husband will be one too. Blessings to you. Andrea B. Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted April 20, 2004 Share Posted April 20, 2004 Glenda, I'm so sorry to hear about your husband. My husband is named Wayne, too -- as is my father, uncle, and several other relatives. I also once worked for John Wayne's oldest son, the late Michael Wayne. My husband lived in Wayne County and went to Wayne High School ... Well, it goes on and on. Seems you can never have too many Waynes. I will keep your Wayne in my prayers. I learned about chemosensitivity tests back when a doctor was working on it at the John Wayne Cancer Institute when I worked there. It was experimental back then (early 1990s) but sounded very promising. I'm sorry I don't know more. I'm not happy that you have to be here, but glad you've found us. There are people here who can support you like no one else can. Welcome. BeckyCW Quote Link to comment Share on other sites More sharing options...
ginnyde Posted April 20, 2004 Share Posted April 20, 2004 Glenda, Welcome to the wives club none of us wanted to join. The statistics on the internet for LC are grim but statistics are accumulated over long periods of time and include people of all ages and conditions. I am the cockeyed optimist and believe that new and exciting treatments are being tested and developed as we speak. I have found an amazing amount of care and support here and maybe just as important information about treatments to ask our dr. about. (Sorry about ending with a preposition). Ginny Quote Link to comment Share on other sites More sharing options...
Ry Posted April 20, 2004 Share Posted April 20, 2004 Welcome to the club as Ginny said. Someone on here had the chemosensitivity tests and posted about it. You will find lots of information on here to help both you and your husband. All the best to you both Rochelle Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted April 20, 2004 Share Posted April 20, 2004 Welcome, Glenda. I like to think of it as a waiting game - survive long enough to get the next great treatment/cure. Hang in there. Quote Link to comment Share on other sites More sharing options...
karen335 Posted April 20, 2004 Share Posted April 20, 2004 Glenda, Welcome! You will find so much information her and also the people here are amazing. there is so much support, caring and a family here. If you need support this is where you need to come to fiind it. I can't help as far as the chemo sensitivity question. I did have Taxol/carbo and it worked for me. Prayers that it will work for Wayne too. Don't look at the stats, they are just that limited stats. Only taken from a few people. We are all survivors here and long term. In my prayers. God Bless, Karen Quote Link to comment Share on other sites More sharing options...
Donna G Posted April 20, 2004 Share Posted April 20, 2004 Hi Glenda . Again welcome. Lots of good info here and good advice. Wayne is in my prayers, please keep us posted on his progress. Donna G Quote Link to comment Share on other sites More sharing options...
john Posted April 20, 2004 Share Posted April 20, 2004 Welcome, but sorry you have to be here. Ask the doctor about stereotactic radiosurgery. It is supposed to be better than WBR by itself. There are also clinical trials for brain mets using 1) melatonin 2) temozolomide Also ask about Zometa or a biphosphonate - it is given for bone mets. I am not a doctor, but this may be some things you can ask your doctor about. http://www.cancerconsultants.com/patien ... herParams= Conclusions An absence of extracranial disease, a KPS score greater than or equal to 70, and fewer number of metastases were significant predictors of prolonged survival in patients with multiple metastases. Stereotactic radiosurgery appears to be a reasonable treatment option in patients with up to three metastatic lesions when their KPS score is greater than or equal to 70, regardless of extracranial disease status. In patients with four or more metastases, SRS should be reserved for those with no extracranial disease. KPS score is performance status. 70 means you are able to perform 70% of what you usually do. Quote Link to comment Share on other sites More sharing options...
Guest Phyllis Posted April 20, 2004 Share Posted April 20, 2004 I am new around here also, but this is a very wonderful support group with really good information. Lung cancer and I guess all cancers is a very complicated disease so it is really difficult to rely too heavily on statistics. Docs make best guesses, but there is a lot they don't know so don't let them scare you too much. Trust your instincts and common sense and do not hesitate to get second or third opinions even five sometimes like me. Good luck. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 20, 2004 Share Posted April 20, 2004 Welcome to the family, Glenda. My wife also was diagnosed Stage IV lung cancer with bone mets. Does your husband have small cell or non-small cell lung cancer? My wife is an 18-month survivor, so take hope. You might ask the doctor about Zometa -- it is an IV monthly that strengthens bones and helps prevent bone mets. My wife has been on Zometa since her last chemo/radiation last May, and is doing very well so far. Good luck. Don Quote Link to comment Share on other sites More sharing options...
Carleen Posted April 24, 2004 Share Posted April 24, 2004 Welcome Glenda, I've looked into chemosensitivity testing too, and it sounds very promising. Our oncologist didn't seem to put much faith in it, as he says that cancer cells act differently in the body than they do in a dish, but from articles I've read, it seemed to me worth the price for even a slight increase in percent of effectiveness. If the chemosensitivity didn't pan out, than it would be no less of a chance than the random trial and error method being used by most oncologist now a days. I too was amazed and shocked when I first learned the stats on LC, and now it makes me angry at times. I know it is wrong for me to feel this way, and I don't mean to deminish the plight of all those who suffer from cancer. But I can't help feeling anger at all the media and support being received for diseases that have low fatality rates and most importantly the virtual invisibility of lung cancer. I've learned a new statistic that just makes me steam, and I've resolved not to sit by and take it. I've learned that in my home state of WI, more money is spent annually on researching the cause of obesity than on lung cancer (actually the same is true federally as well). OBESITY!!! I'm sorry to be so callous, I'm overweight (according to some definitions, obese), but da_n it, the majority of obesity cases can be sumed up in 5 words. "PUT DOWN THE DA_N TWINKIE!!!!" Ok, sorry there, I got off on a tangent. I will get off my soap box and get back to what I came here for. ((((Glenda)))) I am here for you, and whatever you need, we are all here to support you and give whatever aid and info and love you need. You are forever in my prayers Carleen Quote Link to comment Share on other sites More sharing options...
Lea Posted April 24, 2004 Share Posted April 24, 2004 Welcome to the group Glenda, I, like you, became overwhelmed by the statistics too. I have become a much more educated caregiver from this site and others. The more I read, the more questions I have for the onc. One thing that I have learned, everyone is very different and what may be effective for one person, may be highly ineffective for another person. So, just keep faith in options and call, call, call your doctors whenever unusual symptoms occur and come here for support..... Hugs and prayers go out to you and your husband. Quote Link to comment Share on other sites More sharing options...
GlendaG Posted April 24, 2004 Author Share Posted April 24, 2004 Thanks to all of you for your heart warming responses and useful tips. I have updated the profile to give you a better idea of what Wayne's condition and treatment. If we have to go through this awful journey, we are fortunate to meet wonderful people like you. My husband likes this quote he saw on the wall at our cancer center: There is destiny that makes us brothers; None goes his way alone: All that we send into the lives of others comes back into our own ......... ------------- We now have new brothers and sisters - thanks Glenda Quote Link to comment Share on other sites More sharing options...
Lisa O Posted April 25, 2004 Share Posted April 25, 2004 Welcome Glenda (and of course Wayne), As you can probably already tell, if you have to be in this boat, you couldn't be with a better crew. When John posts, he has researched well and it is worthy of a great deal of consideration. I don't know where he gets the time or inclination to help so many of us but you will find him to be a wealth of information. I am also optimistic that new things come out every day... and like Carleen (who cracked me up today ) I would go for any chance I could to increase the effectiveness of chemo if it were available to me. I wish you and Wayne the best. Quote Link to comment Share on other sites More sharing options...
J.C. Posted April 25, 2004 Share Posted April 25, 2004 Glenda, I also welcoming you and Wayne, Hope all goes well, and, please, keep us posted. xo J.C. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted April 26, 2004 Share Posted April 26, 2004 I will add my welcome to the family and my prayers to those already in place. I think this is the BEST place to come to get the caring, support and understanding that we all need at this time. We have all "Been there, done that and bought the Tee-shirt" ! Someone will have an answer to just about any question you may have or they will know where to refer you. God Bless you on this journey. MO Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted April 26, 2004 Share Posted April 26, 2004 I will add my welcome to the family and my prayers to those already in place. I think this is the BEST place to come to get the caring, support and understanding that we all need at this time. We have all "Been there, done that and bought the Tee-shirt" ! Someone will have an answer to just about any question you may have or they will know where to refer you. God Bless you on this journey. MO Quote Link to comment Share on other sites More sharing options...
stand4hope Posted April 26, 2004 Share Posted April 26, 2004 Welcome Glenda, I've only been here a short time, also, but it doesn't take long for everyone to make you feel like you've been here for years. You'll find the love, support and information that you are hungry for, and also a TON of humor that keeps us all laughing - something we really need. I know I did. Send me a PM if you ever want to talk, and once again, welcome! God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Snowflake Posted April 26, 2004 Share Posted April 26, 2004 Glenda, Welcome to the family...I think our little family could be summed up as the rainbow through the rain... Statistics...throw 'em out. Wayne is NOT a statistic, he is a person. Any doctor giving time lines should be taken out and shot (oops, different soap box, let me step down from the NRA box and see what else I can find under the podium...) MmmmMMMmmmm...a Twinkie! I'm sure it's good, they have a shelf-life of like 100 years...wanna bite? Ignore the statistics, keep your eyes open for "new treatments", "new medications", "new research" (and NEVER believe an "instant cure"). Don't forget to breathe, don't forget to take care of yourself, don't forget to breathe...did I mention to remember to breathe?? My suggestion would be to check into counseling for the mental aspect that has already knocked you upside the head. I think most of us here are in some kind of chemical or "talk" therapy or both...(speak up, folks, am I right?). If you're religious, a refresher on your faith will help... Lots of therapy for coping - "water therapy" works the best for me. I'm a tub crier, but there are many shower bawlers on here, too. I prefer the whole "ambiance" thing with candles, soft nature CD, soft light, optional bottle of wine and sliced strawberries... Just let it all out, in the privacy of your own "spa"... (Because if you DON'T let it out, you WILL have a full tear crying spell at the least opportune time and it will embarass the hell out of you. Hysterics and grocery shopping don't mix...scares children.) Again, welcome to the family. Sorry you have a reason to be here, but glad to help in any way possible. Take care, Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
Guest Billie Posted April 26, 2004 Share Posted April 26, 2004 Glenda > I'm glad you found this site. It will helpful to you in so many ways. And like the others have said, don't read the statistics. They are only numbers and not a part of "our reality". Billie Quote Link to comment Share on other sites More sharing options...
Nushka Posted April 27, 2004 Share Posted April 27, 2004 Glenda, So happy that you found us at this fairly early juncture...it took me several months of confusion before I found this wonderful site. Help, love and understanding are in abundance here. As you can tell from the responses so far we are a varied group but we all love each other and pray for each other. That is what makes it so important to us to be here and share our experiences and knowledge. John is a great researcher. Snowflake is our resident comediene and Mo is our rock. There is much wisdom shared and much comfort given. Welcome to the group no one wants to join. Nina, aka Nushka Quote Link to comment Share on other sites More sharing options...
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