Guest Posted March 7, 2003 Share Posted March 7, 2003 I know that statistics are just that..statistics...and median survival times are just that MEDIAN...but, I have gotten so discouraged when reading things out there including info on Iressa (what the Onc said she will put my husband on once it is FDA approved) because they always refer to increased survival time in Months. Can anyone out there share any survival stories with me for Stage IIIB NSCLC (with malignant pleural effusion)???? I need some hope... Thanks !!!! Kathy Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 8, 2003 Share Posted March 8, 2003 Dear Kathy, I would suggest you sit back for a little while and do some reading of the board here. You will find many people that have shared stories to what it is your looking for. Please look at the different forums, such as "Late Stage" or General forum, or even Good News, & Inspirational Stories. You will be surprised what you will find. I wish you and your husband all the very best. Your in a good place for education and support. Warm and Gentle Hugs, Quote Link to comment Share on other sites More sharing options...
Marlon Posted March 8, 2003 Share Posted March 8, 2003 Kathy, Keep your head up. I may or may not spoken with you already. My mom was diagnosed with Stage IIIB back in July, with adenocarcinoma of the pleura. I know what you mean about the scary statistics because I felt the same way. You would do anything if they had just caught it earlier. My mom does not even read this board because she feels it can be depressing. Being the caregiver, I decided I would bear the burden of finding out everything I could, good or bad. For uneducated patients as far as I'm concerned there is little hope, and it gives way to stubbornness. During my mom's treatment, there were definitely some scary and frustrating moments I could have done without, but behold, it is March 2003, 8 months later. Our oncologist is very excited. A month ago her scans (PET and CT) came back clean. Also, her fluid keeps testing negative for cancer cells. She is/was on Gemzar and Navelbine, which not as strong as other chemos for lung cancer, but given the right support and enough time it was strong enough to work. I firmly believe its effect was augmented by her supplements and diet. My mom never had any more emergencies with this new support protocol. The fact that she improved so well empowered her with an explosion of hope(my primary objective in the beginning). The only thing is now she has what's called a trapped lung, that formed from the pleural effusion. It happens they say in 10-30% of cases of malignant pleural effusion. She needs surgery to try and fix this, which she will have this Tuesday. I tend to always assume the worst, but her surgeon says its great that she is showing no more evidence of disease, so I guess that means she is healed. Quote Link to comment Share on other sites More sharing options...
Guest Posted March 8, 2003 Share Posted March 8, 2003 Marlon... Thanks for your reply..that made me feel so much better. Tim was lucky in that his lung was not trapped. He had VATS talc pleurodecis 1/24 and it worked. He has not had any more fluid build up on his lung. Before his second treatment Monday, his Oncologist said that his lung sounded very good and that his blood counts were excellent. She gave him an A !!! This second treatment (Carboplatin/taxol once every 3 weeks) was a little rougher...he could not even get out of bed wednesday or Thursday..he was a little better yesterday and this morning he seems a lot better...still a little nauseous even though he is taking Zofran and Reglan. He had no spread except to the fluid around his lung...now that they have gotten rid of that, I am hoping the chemo gets good results. Connie...I know knowledge is important, but I think I am just going to stick to this board from here on in....and believe in God and that the chemo will work. His onc did say she would put him Iressa 6 months to a year down the road when it is FDA approved...guess that means she thinks he will be around...that is a good sign ! Thanks for all the warm support..you have no idea how much it means to me... Prayers for EVERYONE !!!! Kathy Husband Tim dx'd with NSCLC 12/27/02- stage IIIB (?)...Large cell undifferentiated (?) Carbo/Taxol every 21 days 6X (2 down, 4 to go)' Then Rads either half way thru or after VATS Talc procedure 1/24 PRAYING FOR A MIRACLE !!!! Quote Link to comment Share on other sites More sharing options...
Fay Posted March 8, 2003 Share Posted March 8, 2003 Hi Kathy, In regards to the anti-nausea drugs, you may want to ask your oncologist about adding Decadron(?sp) aka Dexamethesone. My mom had no nausea when this was added. Have a great day, Faylene Quote Link to comment Share on other sites More sharing options...
Guest Posted March 8, 2003 Share Posted March 8, 2003 Faylene- He is taking the decadron in pill form 6 and 12 hours before the chemo- the first treatment they also gave it to him in his IV right before the carbo/taxol. They told us this was to prevent an allergic reaction...nothing about Nausea. He is feeling a bit better today...thank goodness.. It kills me to see him going through this.... Kathy Quote Link to comment Share on other sites More sharing options...
Fay Posted March 8, 2003 Share Posted March 8, 2003 Hi Kathy, Yes, decadron also helps with allergic reactions, it is a steroid and therefore will help with inflammation. Recently, it has been shown to help with nausea. In the O.R. we use it preventatively to help with post-op nausea. In combo with drugs like zofran or kytril (that's the one my mom is on) it has been shown to help as well with chemo. My mom received it in the IV with chemo, but she also received oral pills to take with the kytril for 2-3 days after. Hope that helps, faylene Quote Link to comment Share on other sites More sharing options...
Guest Posted March 8, 2003 Share Posted March 8, 2003 Faylene... Thanks for the info..I am certainly going to check with the Onc about this. Tim is getting treated at U Mass Memorial in Worcester MA..we had our choice of going there (Peter C Levine Cancer Center) or to Dana Farber in Boston. Our family doctor and 2 other people in the medical profession told us that if it was themselves or a family member they would go to Dr. Kathryn Edmiston's group at Umass Memorial...so that is who we are with. She is great...but I can't help think we should be somewhere like MD Anderson......I just feel like I am not doing enough. Tim is SO wiped out...he seemed a little better...and then BAM! Back to being extremely fatigued. Says his stomach hurts, but no vomiting....he is so discouraged that all he has been able to do is sit around a sleep now for 4 days....is this normal from the chemo ???? Kathy Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 9, 2003 Share Posted March 9, 2003 Yes, being tired and being nauseated seem to be normal after chemo. I am helping Lucie fight that each day. Besides her nausea med, she also seems to respond to an antacid like Gaviscon. We also find that it helps to keep her drinking and eating throughout the day. I try to have six small meals instead of three big ones. I try to help her pace herself so she has periods of energy to do things like going out. it is a daily battle. Best to you. Don Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 9, 2003 Share Posted March 9, 2003 Kathy, I would say that being tired is a combination of a couple things. Chemo being one, stress being two. Yes chemo does add to fatigue. Did you get a book from Tim's Chemo doctor that might explain the side effects of Chemo? If they didn't give you one, I would ask for one. Also there is ALCASE. www.alcase.org You can look up and see what info they have regarding side effects of chemo's as well. They are a wonderful resource for us lung cancer patients and caregivers. I am sure his stress level is very high at this time as well. Not to mention any other med's he is taking. Rest is very important at this time. I was very lucky when I did my chemo and radiation treatments (together), for I had very few side effect. I sure wish I could pass that along to your Tim. And as for being where you are for Tim's treatments, chances are MD Anderson would off the same treatments Tim is getting right now. Most major hospitals offer the same in treatments or protocal. I would take the word of those that told you they would go to U Mass Memorial. I went to a well known hospital here in St. Paul MN when I did my treatments and they did the same with me that the Mayo would have done. So, I am sure your in good hands. Even smaller hospitals have good doctor's dedicated to lung cancer treatments for there patients. Good luck. Have you had a chance I hope to read some of the Stories here on the board? You will find much hope and comfort in reading some of these stories. I hope you can find a minute or two to do that! Warm and Gentle Hugs, Quote Link to comment Share on other sites More sharing options...
Guest Posted March 9, 2003 Share Posted March 9, 2003 Thanks Connie.... I have read a lot of the messages and I have gotten a lot of hope from them...funny, I have a lot of friends in Minnesota..I actually was there in August and found out first hand what they mean by "Minnesota Nice " !!! Darn mosquitoes though ! LOL ! Thanks for the info and the encouragement...the pulmonologist told us that he would trust his mother with our onc, that she "walks on water"....just get a littel nervous sometime. They did give us a booklet. and I know these are side effects, but he did so much better with the first treatment, guess we were hoping that's how they would all go... Take care and God bless... Kathy Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 10, 2003 Share Posted March 10, 2003 Dear Kathy, Just wanted to share with you that it's not uncommon for treatments to vary in each person. Some people do well the first few chemo's then get tired or sick with the last one's. Then some do will get sick right off the bat and but the last few chemo's they do very well. It's a horse a piece. And then some do well all the way through. Just the nature of the beast! Glad to hear you were well treated here in St. Paul, MN. What, you don't like our Mosquitoes? I've lived here all my life and I still can't stand the little buggers!!! I'm also glad to hear you have been reading the board. There are a lot of encouraging and hopeful stories here!! God Bless and Good luck. Keep us posted! Warm and Gentle Hugs, Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted March 10, 2003 Share Posted March 10, 2003 Kathy my dad is having the same exact treatment as your husband. Even to the 2 carbo taxol 4 to go like your husband, I think the second dose is harder on him. He can't eat due to nausea and is very rundown and tired. My dad goes to mass general and they have been very good to him so far. As far as statistic really try not to think about them. Easier said than done but honestly I really do NOT think about them anymore. I try to educate myself on his meds and how to make him feel better not if he a chance statistically to beat it. In my eyes yes he does. Stage four smore, whatever. it is going to be a challenge but if you do not accept the challenge then you can't beat it! Quote Link to comment Share on other sites More sharing options...
Guest DaveG Posted March 10, 2003 Share Posted March 10, 2003 Just a point on the Minnesota mosquitoes: We sent them there from Wisconsisn. They are a secret weapon. What they actually do is inject Green and Gold into the blood stream of all the Viking fans. It causes them to something strange: Root for a winning football team. Minnesota isn't all bad. They have Connie there. Hang in there with the chemo. Quote Link to comment Share on other sites More sharing options...
JudyB Posted March 10, 2003 Share Posted March 10, 2003 Kathy, I hate to repeat myself, but I will. If Tim is not drinking enough fluids and has gotten dehydrated THAT in and of itself is enough to make one feel REALLY pukey! I took decadron and had pre-meds that were supposed to take side-effects away, or at least, lessen them. But it was dehydration that laid me low. Couldn't even stand up! It was from dehydration. Got fluid intravenously and WOW, that worked! Ole ConnieBud, When I lived in VT we not only had mosquitoes, but also No See-ums, and All-Jaws (the bite was so ferocious, but they couldn't be seen, hence the moniker). JudyB[/b] Quote Link to comment Share on other sites More sharing options...
JudyB Posted March 10, 2003 Share Posted March 10, 2003 Kathy, I hate to repeat myself, but I will. If Tim is not drinking enough fluids and has gotten dehydrated THAT in and of itself is enough to make one feel REALLY pukey! I took decadron and had pre-meds that were supposed to take side-effects away, or at least, lessen them. But it was dehydration that laid me low. Couldn't even stand up! It was from dehydration. Got fluid intravenously and WOW, that worked! Ole ConnieBud, When I lived in VT we not only had mosquitoes, but also No See-ums, and All-Jaws (the bite was so ferocious, but they couldn't be seen, hence the moniker). JudyB Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 11, 2003 Share Posted March 11, 2003 One of the things we learned from the radiation center is to take blood pressure sitting down and then standing up. If you get a sudden drop in pressure, that's a good indication of dehydration. Don Quote Link to comment Share on other sites More sharing options...
Guest Posted March 11, 2003 Share Posted March 11, 2003 Don, I'll have to remember that! I have low blood pressure anyway, so it's no wonder I'd pass out when trying to stand! JudyB Quote Link to comment Share on other sites More sharing options...
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