Dollfan19 Posted March 6, 2004 Share Posted March 6, 2004 I have never written on the board but I have been reading for several months. I feel like I know all of you. My husband was diagnosed with Extensive SCLC stage IV in the end of Oct 03. What a blow to a very strong man of 47 yrs old. He and his doctor attacked the disease very agressively with cisplatin and Irinoteacan, 3 weeks on , 1 week off. The chemo is like rat poison. From what I've read about other people taking this, they don't tolerate it at all. Seeing that my husbands primary tumor was in his lungs was 20 cm, some thing had to be done quick. It had also mets to adrenal glands, lymph nodes and "numberous lesions" to the liver. The chemo held him for 4 good months where we did alot of productive family things, etc. until his calcium started to go up, bones! By the time we were going into his 5th cycle, he was too tired to move out of the bed. He was admitted into the hospital, no infection found, the scans looked unchanged except there was fluid in his belly and he's been unable to eat. The liver is becoming out of control. the doctor has changed his chemo to carbo/VP16. He says he has a 25-30% chance of it sustaining his life for another month. My wonderful, caring. loving husband has been given the duration of life. Our 1 yr anniversary is the 16th of March. We were just getting started in life. I hate this disease and every one that still smoke. I think it's wrong that when you walk into a hospital, there are employees that are standing outside smoking when you husband is inside dying from it. For some time I was angry at him, but what for? I used to smoke, it could be me? I just don't know what I will do without my best friend. Have wde exhausted all possibilities? Quote Link to comment Share on other sites More sharing options...
betplace Posted March 6, 2004 Share Posted March 6, 2004 Dear Dollfan, I have no answers for you, I am fighting the same fight as your husband! We were dx at around the same time. I hope the carbo/VP-16 helps. But I can tell you this board has been a wonderful place and experience for me, I am glad you found your way here. We are glad you could join us, but sorry for the reasons you are here. I will add you and your husband to my prayers. Again Welcome! Blessings Betty Quote Link to comment Share on other sites More sharing options...
ginnyde Posted March 6, 2004 Share Posted March 6, 2004 I am so sorry about this tragedy that has changed your life. Watching your loved one fight this disease is very difficult. I have found enormous support and knowledge from this board. This is where I get the information I take to my doctor. And, yes, it amazes me that we walk through smoke to get into Fox Chase CANCER Center. If companied that are not health related can prohibit smoking on their grounds, not just their buildings, why are hospitals not implementing the same rules. Maybe we need to mention it each time we go. Keep up the fight, I just know some day the answers will be there and that day could just be today. Ginny Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted March 6, 2004 Share Posted March 6, 2004 Dolfan So sorry that your love is having to fight this disease. I hope that the chemo works wonders for him and that you have many years with him. I understand about your feelings on smoking......but people who smoke also have a disease..........addiction. For some it is not to hard for them to quit. For others it is very hard. I don't like the smoke, the smell and the diseases that smoking causes, but I have compassion for those who do smoke. It must be a very strong addiction........knowing what health problems smoking can cause yet still smoking anyway. I will add you and your dear husband to my list of prayers. Have a blessed day! Angie Quote Link to comment Share on other sites More sharing options...
Fay A. Posted March 6, 2004 Share Posted March 6, 2004 I am very sorry that you and your husband are having to deal with this. I wish I had a magic wand for all us. RE: the smoking outside the hospital issue. Contact the Hospital CEO, and voice your concerns. They are valid. Tell this person that you would appreciate it if signs were posted outside all entrances/exits stating that smoking is prohibited within 50 feet of these doors. Write letters to your local newspapers about it. Bet you have a lot of support for this in no time at all. Once again, I am sorry that things aren't going well for your husband. Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted March 6, 2004 Share Posted March 6, 2004 Dollfan, I, too, am SO sorry you and your husband have to face this horrible disease. My hopes and prayers are with you both that your husband is one of those folks who prove the doctors wrong (and there are many here who've done just that). Please don't be angry with smokers. It IS an addiction and nicotine is considered the third most addictive substance known. But you are VERY right to be angry at the hospital for not controlling the smoke on their premisis better. People who chose NOT to smoke have EVERY RIGHT to breath clean air (or as clean as can be expected in today's environment). The VA hospital where I go has come up with a solution that seems to work quite well. They have designated smoking areas that are well away from any entrance or "well travelled" areas. They are small and well marked so anyone not wishing to walk through those areas can go around with little or no inconvinience (sp?). It's one thing the VA seems to have actually thought out quite well. As for being angry with your husband. I relate to that one, but from the OTHER side. My wife was SO angry with me for awhile after I was diagnosed. I guess it's understandable but it was hard for me to deal with at the time. But she finally came to the realization that I, like your husband, did not set out to get this disease. And with that understanding her anger went away. Once again, prayers for you and your husband. Dean Quote Link to comment Share on other sites More sharing options...
Snowflake Posted March 7, 2004 Share Posted March 7, 2004 Dollfan, One thing you may have missed is that lung cancer is NOT a smokers' disease. There are quite a few of us here that are non-smokers (as in "never had it, never will"). It IS possible that your husband's cancer wasn't even caused by his smoking.... As for hating smokers...well, that's not really what you mean, is it? I would say your tolerance for SMOKING is at less than zero (hey babe, mine too, believe me) but hating people you don't even know for a poor life choice? Hmmm.... If I hated everyone I thought made a stupid choice, I'd have NO friends and most of my family would be in the woodshed. I am SO sorry you are walking in the shoes you are in now. My husband and I were barely six months into our marriage when we were dealt the diagnosis...I'm not sure who it hit harder. Oncologist assures me that my cancer had NOTHING to do with smoking, I just won the "Cancer Lottery" so to speak. I wish I could offer you the silver bullet, but all I can offer you is Hope. NEVER lose Hope. There are survivors at every stage and SOMEONE has to be the 1 in 1:1,000,000! Why not your guy??? Hang in there, and be SURE to get the help YOU need along the way, be it sleeping pills, anti-anxiety medication... Take care of YOU, too. Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
Carleen Posted March 7, 2004 Share Posted March 7, 2004 Welcome Dollfan, I don't have a lot to add, I just wanted to welcome you to the group. I am so sorry about your best friend and husband being subjected to this heinous disease. I can completely understand how this diagnosis blindsided you. You were beginning your new life and love together, he is young strong and full of vitality. This is the same situation that my husband and I were faced with. We were married for only 3 years, he was 31 strong and amazing. We never suspected that something like this could happen to us. Like you said "What a Blow" Your husband also received and is receiving the same chemo regimine we went through. We were held stable, but there was no real shrinkage. I was wondering, when you said the chemo held him for 4 good months, do you mean he was in remission for 4 months, or held stable? SCLC is supposedly very receptive to chemo. Originally Keith was diagnosed with SCLC, but after many other opinions, it was changed to Atypical Carcinoid. Atypical is not receptive to chemo too well. However, there are other options that appear to be out there as far as clinical trials vs what is available for SCLC. I know that your husband his weak and feeling down, but if you haven't had a second opinion, I would highly recommend one with a lung cancer specialist, and one willing to do their own restaining of your husband's biopsy slides. I am praying for you, and hope you stay with us and keep us updated. Let us be here for you both and together we can help on another. With love and God's blessings we can get through this, we can beat this disease. Carleen Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 7, 2004 Share Posted March 7, 2004 I like everyone else welcome you to the board and hope and pray for the recovery of everyone with this disease. One thing to remember is that noone knows a timetable, and the best estimates are often very wrong. When my wife (beckyg) was diagnosed, I had a hard time dealing with smoking and smokers as well. My wife and I have never smoked and always avoided places that are extra smokey because it just was so yukky. And so when we would walk to the hospital and see the nurses outside smoking, my initial emotion was that they should have Becky's cancer; she hadn't done anything to deserve this. What I came to realize is that there ain't nobody who ever did anything to deserve this disease. Both Becky and I work at universities, and to see 19 year old smokers is just so appalling. We were frustrated by the fact that the perception is that lung cancer is a smoking problem, that by curing one you could cure the other. We are continually outraged by the number of professionals who say things like all you need to do to control lung cancer is to get people to stop smoking, because that just isn't enough. But on the other hand, for me as a layman, probably the best thing that I can do is prevent people from smoking, because it does cause most of the cancers. I also spend time writing letters; I have written both Bush and Kerry about having medicare cover Iressa, for example, and other related issues. But if our story can keep teenagers from smoking, we will probably do more. It is not like I can go in and develop the cureall chemo drug, to my infinite chagrine. You can see how tortured I have been on this issue the last year and more. I guess the one thing I want to make clear in all my communications and effort is that lung cancer and smoking are very different issues. Related, of course. But different. Welcome again. Please keep us updated as to how your beloved handles the new treatment. Curtis Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 8, 2004 Share Posted March 8, 2004 Dear Dollfan, I am so sorry you and your husband were hit with this horrible disease after being married for such a short time. You found the best website for support and warm friendship, which you will need to help you through this rollercoaster of disease, treatment, and emotion. We all need each other here. There is no reason why your husband should n't be a miracle. Miracles happen every day. Get the second opinion. Be proactive, Research, Research, Research. Never give up. Never lose hope. The advice to take care of yourself was good. Eat well, stay strong, don't be afraid to seek either counseling or antidepression/antianxiety medications or both. Talk to the doctors, ask questions, write down the answers. Know that you and your dear husband will be in my prayers too. No one deserves this wretched disease. God bless and keep you both, XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
tess Posted March 9, 2004 Share Posted March 9, 2004 I was married for just two years when my husband was dx with Stage4 lung cancer also. It just doesn't seem fair or real! My husband is 48, first marriage for him, second for me. We had so many plans to grow old together, but now this nightmare............. Just take it one day at a time, and ask God for help. He will comfort you, he never gives us more than we can handle. There are so many young people on this site with lung cancer and have never smoked. I feel sorry for them, they haven't even had the chance yet to really live. I guess all I can say is that I am thankful for having my husband, and he is thankful for me being here for him too. Just do what you can do for him and love him for as long as he's here. Quote Link to comment Share on other sites More sharing options...
paddy Posted March 9, 2004 Share Posted March 9, 2004 Oh, Dolfan, my heart goes out to you. I am so sorry that your husband is so ill. I am sure you do feel angry.I often feel I want to take some of these young folks ,(whom I see standing outside the movie theatres with cigarettes in their hands,) and scream at them, but what good would that do, they think they are invincible. Although smoking may make the risk of getting LC greater, the disease does however seem to be indiscriminate. My husband has never smoked and always kept himself fit, (until he had a stroke at the age of 57.) He is the last person I would have thought would have expected to get lung cancer. I know many of the people on this board have never smoked either. My thoughts and prayers will be with you and your husband, Paddy Quote Link to comment Share on other sites More sharing options...
norme Posted March 9, 2004 Share Posted March 9, 2004 Dollfan, I pray that your husband's body chemicals change overnight and he starts to recover. I know you are hurting real bad. I can tell by your writings. All I can say to you is to be with him constantly, hold is hand, talk of the good times and the future. Miracles do happen.... Quote Link to comment Share on other sites More sharing options...
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