jcawork

Correct. She had a pulminary embolism and bled out from the blood thinner.

Are the inhibitor type only being used on nsclc because there havnt been any sc trials? Do you know what the name of one of these drugs is? Thanks, Jen

Yes, it made me cry too. They mentioned some clinical trial but they said it too fast so I missed it. Wish someone knew what they said. Jen

They portrayed a mid 30's, pregnant female w/ sclc. It was very interesting as I have never seen this on TV, they showed lc, a women, young and didn't mention smoking, just the horrors of what she was facing and decsions she needed to make. I am sure it will repeat sometime. Good for them (the show) for showing the invisible disease. Jen

Wishing you the very best and some peace of mind. Love, Jen

Hi, I chose not to have them. Could have, got mighty close, insurance okay, but then said forget it. I was told only helps w/ esophogal burn when it helps. I was told it only helps a % of people but when it does it helps a lot. I was told it didnt help w/ pneumonitis, that this has more to do w/ sites shot and your personal inflamatory reponse. I have had pneumonitis since the last day of rad which is uncommon, most people dont get it for 6-12 months post rad. I am very allergic and got freaked out at the allergic issues. Took a roll of the dice and I am glad I did, but there was no way for me to know if I would or I wouldn't. I did not get much esopho stuff, very mild could always eat. As ususal..... Jen

I can never remember everyone's profiles. I am gathering some info for myself and others on where sclc mets tend to go. Please just let me know, if you would where you have had mets and if they were totally eliminated by tx. I will also post the totals I recieve. Thanks, Jen

This is the bravest post I have ever seen. I can't hold back tears. Know that your posts have always been important to me. I love your pic, that smiling face. You have sent posts that were full of strength and hope w/ I knew you must have not felt very well. Know you are loved. Jen

Hi, I suffered from very serious low white blood counts, so this stuff I know about. Even a small knick from a razor w/ counts are low can cause life threatening infections. For me, I wasn't to shave my legs, cut my nails, get a manicure or ped, work in the garden etc.... Nothing that can cause a break in the skin etc.... Its felt very strickt and stupid at the time, but I didn't get any infections. I buzzed mine short, then it fell out. I cleaned it up by shaving it bald (w/ my counts were okay). Good luck and use plenty of Purell on the hands. Thats helps a lot too. Jen

Who wrote this? Is this a quote? "In patients with small-cell lung cancer, it is one of the very few forms of carcinoma for which chemotherapy has some positive effect on survival, but the effect is measured in terms of weeks or months, not years. Small-cell lung cancer tends to metastasize readily and grow rapidly. It is also believed that surgery may leave behind some stray cancer cells, which depends on the thoracic surgical oncologist involved."

Hi there, I am in the same dilema. My ovaries lit up higher than my lung tumors on the PET. Everyone was in a tizzy about it. Saw 3 specialists.... yada yada yada. End result, I had the big talk, weighed it all, heard it all and decided I was in charge of my health care, they are consultants and since they didn't have any answers-I would be telling them. They seemed relieved and agreed w/ me. I was told the same about a biopsy, it will only tell yes if yes, but no doesn't mean no, I choose to wait 6 weeks to be rescanned. I asked the tough quetions about if it is mets and if I am now extensive w/ 6 weeks matter. I was told, not really. The tx will be the same, chemo. I am mixed on the PETS. My original 2 showed the second tumor w/ the CT did not. This was very important because the chest radiation needed to know this. They also had a hard time finding the second chest tumor on the rad. sim, but because of the PET they found the hidden little devil and could shoot it too. No pet, it would have not been in the rad,. field at all. The greatest feeling in the world is the CT/PET fusion when NOTING lights up. You know its a good day. However, w/ something lights up it must be investigated. The PET and CT's alone miss many things. The combination seems to be the new standard of care. Good luck. Jen

I too am still playing w/ the cigs. I don't want to say I am "trying to quit" or I would have quit. I am smoking. It doesnt matter if I am smoking 1 or 100 a day. I see it as an emotional/psychiatric thing w/ me. I don't have an answer yet for this bizare behavior. But, its my thing. I hate myself (sometimes) for it. Thanks for your honesty. We need more of this. Thanks for those who replied and told the truth. Thanks for the non smokers that replied, were kind and understanding and didn't leave a 2 page thread on why we should quit. I spoke on the phone w/ numerous people from the board w/ I first got dx and asked them if they were still smoking, most said yes. We don't however, share it on the board, because were too exhausted to hear the preaching. People who preach just have to know: we already know all of it, they can't possibly tell us something we don't already know and they will not be the one facilitating the great changing moment that makes the sun and moon align and we suddenly quit. They preach because it makes them feel better in some way to say the obvious. I say this because we have many secret smokers on the board and we need a place to talk about it. Katie, is there anyway we could have a section for current smokers, so we can talk and discuss. This is a disease significantly caused by smoking and the one, most important piece of our tx we are not comfortable openly discussing,getting help for, talking about our shame, disgust. remorse or total satisfaction. Because.....we will be judged. We have been judged. We look dumb as crap for still doing it, but we are doing it and we need help. Thanks again for your honesty and my God, I hope your a writer for a living. If not start the great american novel, you are gifted. Hang in there w/ the chemo. You may be great through the whole thing. One of my classmates was Addie from the board. Our tx ran pretty neck and neck and she flew through it w/ hardly a scratch. She inspired me to keep my head up. Mine was worse than hers, but not as bad as some others. So, we are all different. Jen

Sometimes on PETs they make the mistake of attempting to measure and report these in the report. . They can't as this is about light measurements and there as "aura" that makes anything on a PET measure larger no matter what the SUV. CT measures more accurately. PET is good for SUV only and thats not always malignant. But if something doesnt light up, its usually not cancer. Jen

Frank, Hang in there buddy. Its a temp. setback. You will be bouncing back in no time. BIG hugs, Jen

I would ask for a script for the neumega and attempt to fill it. Then give the shots at home. Thats what I did for the neupogen. The problem is you have to attempt to fill the script to see what happens as not all co's will pay if you do it at home. Its not written in the book, the phamacist cant tell you unless he actually attempts to fill etc.... It saves a ton doing the shots at home and time which is very valubale. Jen

Hey Addie, I had Aloxi the whole time. Worked like a charm. Very expensive-actually lasts for up to a week. With me they gave me a baby dose of decadron 4 mg because it bumped up the volume on the aloxi. I also got Emend: Carbo/VP 3 day tx: Emend one hour before chemo at home for 3 days-$200 a pill Aloxi and 4 mg decadron day one I refused decadron day 2 & 3 and was still fine Took one 8 mg zofran at night day 2 & 3 if needed-maybe took twice in 7 months CPT-11/Irinotecan: Decadron 4 mg and aloxi Never threw up-once during any chemo's w/ this pre med recipe Jen

OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Awesome, thats all I can say. Jen

Hey Joanie, I live in a house and dont know about apartments If you google radon there are millions of sites and info. I remember w/ you were coughing up blood and the dust. You can go online to get radon tests. Then you send it to a lab. Get it anyway and check. Cant hurt. Jen

Joanie, Thanks for staying w/ us as you deal with "cured". We need more people like you who stay, offer hope and experience and help the new guy get through it-like me. Thank-you just doesn't seem to say enough. Mucho Hugs, Jen

Hi Guys, Well, my house came back contaminated for Radon. I checked w/ a number of physicians including our ask the experts and yes, Radon is a contibutor to sclc. Add smoking and you have quite a mess. I never knew this. Please get your homes checked. It doesn't matter for us-too late, but if others live in your home they are at risk. Sometimes significant risk. For example, my husband quit a heavy smoking habit at 40. He is 55 and his randon/smoking combo risk remains the same for 20 years. Well, I add this-radon, the asbestos exposure 8 years ago, the teenage repair shop chemical exposure and smoking on top of it etc..... Too many people on this board are VERY young for lc/sclc if you havnt noticed. Something is up. I suspect its radon. When I saw a surgeon for a consult w/ I first got dx w/ lc, but didnt know what type yet, he had 3 young patients (40's) all from the same subdivision in the same year w/ lc. He had them all check and they were all off the charts for radon. Food for thought. Jen

You are an inspiration and I get great hope knowing you have kicked this monster's *ss numerous times. You go girl. ))) Jen

Hi Guys, Well, my house came back contaminated for Radon. I checked w/ a number of physicians including our ask the experts and yes, Radon is a contibutor to sclc. Add smoking and you have quite a mess. I never knew this. Please get your homes checked. It doesn't matter for us-too late, but if others live in your home they are at risk. Sometimes significant risk. For example, my husband quit a heavy smoking habit at 40. He is 55 and his randon/smoking combo risk remains the same for 20 years. Well, I add this-radon, the asbestos exposure 8 years ago, the teenage repair shop chemical exposure and smoking on top of it etc..... Too many people on this board are VERY young for lc/sclc if you havnt noticed. Something is up. I suspect its radon. When I saw a surgeon for a consult w/ I first got dx w/ lc, but didnt know what type yet, he had 3 young patients (40's) all from the same subdivision in the same year w/ lc. He had them all check and they were all off the charts for radon. Food for thought. Jen

Hi Guys, Well, my house came back contaminated for Radon. I checked w/ a number of physicians including our ask the experts and yes, Radon is a contibutor to sclc. Add smoking and you have quite a mess. I never knew this. Please get your homes checked. It doesn't matter for us-too late, but if others live in your home they are at risk. Sometimes significant risk. For example, my husband quit a heavy smoking habit at 40. He is 55 and his randon/smoking combo risk remains the same for 20 years. Well, I add this-radon, the asbestos exposure 8 years ago, the teenage repair shop chemical exposure and smoking on top of it etc..... Too many people on this board are VERY young for lc/sclc if you havnt noticed. Something is up. I suspect its radon. When I saw a surgeon for a consult w/ I first got dx w/ lc, but didnt know what type yet, he had 3 young patients (40's) all from the same subdivision in the same year w/ lc. He had them all check and they were all off the charts for radon. Food for thought. Jen

Dear Uncle Doug, Welcome and I am sorry why you are here, but this is the place to be if you have lung cancer. The first 6 weeks of dx was devastaing for me. Honestly, I spent most of it tanked and crying as I couldnt deal. This eased up once there was a plan. Find me if you need anything. Get a plan. Jen

Kinda depressed today. My coughing, hacking, spewing, wheezing is worse, maybe allergies too. This is now 6 moths of this. I actually ruptured a blood vessle in my eye from coughing so hard. Wasn't sure in May 04 if I would make it to this bday. They take on a whole new feel w/ this is now your life. Still havn't had PCI, wanted to get hubby started on his hep c torture chemo routine first, but insur. company wouldnt approve one of the drugs-interferon. Just approved yesterday. Need to decide what I am going to do w/ PCI. My ovaries are still w/ me. All involved decided to wait 6 weeks and re-scan to see whats up. May loose them. I have never been fatter and just hate this chemo induced menapause, fat thing I am in. Don't have the energy or spunk for a diet. Working full-time and very exhausted. too tired. I dont post a lot but check the board once a day and keep up w/ all of you. Many brave people on this board. Good things; I am still here, kids are great, daylight saving time will start Sun and that always help, maybe I can do gardening this summer was too wore out from chemo last and I am blessed w/ wonderful friends and family. Ok, I feel a bit better. Hanging in here in Maryland, getting older and fatter Happy April Fools. Jen