bart ziggie ( Greg ) Posted May 7, 2003 Share Posted May 7, 2003 Hello everyone.I posted on this board here recently and was overwhelmed by the responses i recieved.I check this board several times a day to see new posts.I feel at home here every time i visit.I enjoy hearing the good news and share the pain for those that are suffering.I sometimes wish i had more courage to step up here and try to lend whatever i can to this fight.I think as time goes on i am getting more of a desire to contribute and get " out of myself " more.At any rate the reason i am posting this is i have finished 2 rounds of chemo (cisplatin and vp - 16 and it is time for the first scan i have had since my treatment began. I go this morning for ct scans on my chest.I am nervous!I do feel better overall than i did thats for sure however it is hard to tell really because i have experienced some side effects from the chemo.I do know my tumor has shrunk i can tell.The pain isnt there as often or nearly as bad.Here are some questions for all of you if you dont mind.... I dont see my onc. until next wed when my next treatment is.I like to have all my questions on paper and ready for him..... My questions are this. Is it common to start radiation concurrently with chemo for limited stage sclc ? if so what are the deciding factors ? Is twice daily radiation better than once daily ? My onc. has said from the begining that i am looking at 6 cycles of chemo does signifigant tumor shrinkage mean less number of treatments ? Also i have really been battling with my weight.I have lost 19 lbs since i was diagnosed on 3/10/03 and am still losing.Food makes me sick to just smell it right now.I have discussed this with my dr. and he suggested nutritional drinks.I tried them and they make me sick as well..... any suggestions ? The only thing it seems that i still like the taste of and can tolerate is fish.However...... lol i cannot eat fish 24/7 anyone that has input will be greatly appreciated. I better get going but i thank all of you for your posts and i look forward to becoming more of a part of this family instead of watching from the sidelines. Quote Link to comment Share on other sites More sharing options...
SandyS Posted May 7, 2003 Share Posted May 7, 2003 Bart - I DO have some input for you - but I gotta get going here. Wanted to let you know my prayers go with you to your scan this morning! I'll write more this evening.... SandyS Quote Link to comment Share on other sites More sharing options...
Laurie Posted May 7, 2003 Share Posted May 7, 2003 Hi Bart Ziggie, I am praying for you and sending positive thoughts for your scans tomorrow! My Mom had the same chemo that you are on and it was very harsh on her. She had alot of nausea and lost alot of weight as well, 30 pounds. She mainly survived on Watermellon, Cream of wheat, toast with melted cheese and a choclate shake I used to make her made out of Carnation instant breakfast ice cream and chocolate syrup. We really didn't change her menu from this during the nausea as it would make her get sick and lose what we had gained. I tried to have her eat one small thing every 4 hours or so. I felt having the pills with no food will make her sick. The smell of food also made her very ill. They gave my Mom the most agressive dose that they could due to her collapsed lung. I do think that most people have radiation concurrent with chemo. I've heard there are some studies that say good things about 2x radiation and Jenny here is having it done, but there is NO WAY my Mom could have done it. They started my Moms radiation on the second chemo cycle. I think the radiation is determined by the location of the tumor. My Mom was scheduled for 6 cycles of chemo and got real sick after the fourth.. the doctor stopped the chemo and she had a clear scan so they didn't give her any more. She is quite a bit older than you.. but you really have to watch out for the dehydration and weight loss. Try to force yourself to eat and drink if you can, take the anti nausea pills before you get nausea and stay on top of it. Wishing you the very best! Laurie Quote Link to comment Share on other sites More sharing options...
SandyS Posted May 7, 2003 Share Posted May 7, 2003 Bart - I'm baaaaaaaaack! Okay - your questions: Is it common to start radiation concurrently with chemo for limited stage sclc? Yes for maximum effectiveness they usually start radiation between the 2nd and 3rd rounds of chemo. If so what are the deciding factors? Your age, over-all health and how you're handling the chemo. If I remember correctly, you're only in your early thirties (right?) The chemo stops the cells from multiplying (hopefully), but the radiation KILLS the cancer. My doctor explained to me that it was beneficial for the two to overlap because the chemo weakens the cells and gives the radiation a better chance of doing it's job. "Kick 'em while they're down!", he said. Get on your doctor about this right away! Is twice daily radiation better than once daily? Jenny on the board is the only one I know who has had the twice a day radiation, and she seemed to do okay with it (aside from a week in the hospital early on). I had daily radiation for 6 weeks (and ended up in the hospital for a week at the very end of it)! Does signifigant tumor shrinkage mean less number of treatments? Unfortunately - no. There's a reason for the six cycle mentality. Those drugs are running ALL over your body, trying to stop the cancer anywhere it may be trying to spread, not just focusing on your lungs. They have pretty much determined that whatever good any particular course of chemo is going to do for you, it will accomplish it in 6 cycles and more beyond that is a waste. If you need more, they will usually switch you to a different combination of drugs. They make me sick as well..... any suggestions? Well, you could always make a fish milkshake!!!! Yuck. But seriously, experiment as much as you can to find things that don't have a lot of smell to them and are satisfying to you (my life-support became Dairy Queen Root Beer Floats!!) Best of luck to you Toots! And feel free to email me anytime......... SandyS Quote Link to comment Share on other sites More sharing options...
Guest jonathan Posted May 8, 2003 Share Posted May 8, 2003 Hi, i know alot about this disease, and i want to help you win this battle. My mom passed away of it 2 years ago, and i have been researching it for 5 years. ks the oncologist for megesterol to increase your appetite or steroids. And YES YES YES, twice daily radiation therapy has been proven to be more effective, and more curative in patients with both limited and extensive stage small cell. you want as much tratment as you can get to knock this out of you- no matter how hard it is to tolerate! small cell comes back A LOT! It seems that oncologists are doing twice daily more often,and it is helping boost the survival and cure rate slightly. Also, many oncologists are doing 2-4 extra chemotherapy treatments AFTER small cell goes into remission to avoid and prevent a recurrence at all costs. The problem is that once it come back, it is usually resistant to most therapy or at least more resistant in general. emal me anytime... te11t@aol.com jonathan Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 8, 2003 Share Posted May 8, 2003 Bart Good vibes coming your way for good scans! Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted May 8, 2003 Share Posted May 8, 2003 Dear bartziggy, Wishing you the cleanest scans in the world today! As for twice daily radiation, i had that for three weeks straight. the effects were cumulative- towards the end swallowing hurt, anything with acid in it was out of the question (tomatoes of anytype, oj,) they gave me drops which i could put on my tongue before eating that, i guess, coated the esophagus and allowed me to eat a bit. I found eating watermelon, and ice pops to be soothing. keep up the good work! Quote Link to comment Share on other sites More sharing options...
Candy Posted May 8, 2003 Share Posted May 8, 2003 I don't know a thing about radiation because it wasn't an option for my husband, but I do wish you wonderfully clean scans. I HATE scan report time! Quote Link to comment Share on other sites More sharing options...
Rosanne Posted May 8, 2003 Share Posted May 8, 2003 Praying for a clean scan. Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted May 8, 2003 Share Posted May 8, 2003 sending my good thoughts your way!! Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted May 8, 2003 Author Share Posted May 8, 2003 Thank you all very much for all the prayers and positive vibes.Also thanx for the feedback regarding my questions.Katie i will discuss with my dr. the possibility of megace that sounds like a viable option.I just got off the telephone with dr. office and my scans are on his desk but i wont be able to find anything out untill tomm.I will post as soon as i get the news.At any rate Sandy it sounds like i have a very similar treatment plan as you and appreciate your insight.But ewwwwww fish milkshakes lol...... that sounds like something my boy would suggest i try and he would sample for me.I will also try the carnation instant breakfast and ice cream.Again thanks to everyone you all are great ! Quote Link to comment Share on other sites More sharing options...
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