bikergirl

No, it has been there since last Oct when I started my Chemo. I had a Thorecentesis and the fluid started coming back . Just as yours did the fluid dissapated when on the Chemo and now is locuated I have know all along it was there as my oncologist also has but hesitated to do anything about it. I have some pain in my lung area and a awful cough but I can handle that. I just don't think it is necessary to go through surgery and chest tubes etc at this point just to possibly make me more comfortable. The surgeon said he may not be able to do anything anyway if after he got in there and things were different then expected. So I will just stay in my holding pattern for now. Thanks Ned!

Thanks Ned, went to see the surgeon yesterday. He described the first procedure you mentioned but he doesn't feel it would help me at this time. So we are in the usual wait and see pattern so natural to survivors.

Thanks so much Connie, I really appreciate your support and genuine concern.

Thanks Connie, I also had my lung tapped for flluid when they first determined I had stage IV but this is different. The fluid is locked between the lung and the sack around the lung, it seems the lung is somehow attached now to the lining. They have to actually do surgery to cut away the lung that is attached and remove the fluid. They said I would probably be in the hospital about a week.

Hi all! Haven't been writing in here too much lately. I just haven't been feeling well and took a couple of days off from work and rested . Feel better now, except for this awful cough again. My Onc says it is fluid that is locked and sent me to my Lung doctor, now I have to see a surgeon. They are talking about some kind of Lap surgery where they go in and clean up the lung and I guess get rid of the fluid. Has anyone had anything like this done before. I am really scared to death especially since I have been on Avastin since Oct 2007. It has kept me pretty stable and now I will have to stop taking it if I have this surgery. Any guidance or information would sure be appreciated right now.

Thanks Patti, this is amazing something good actually coming out of all this! You too have a great time picking out those new frames!

Thanks Sandra, have fun picking out those new classy frames!

I was curious to find out if anyone else had drastic changes to their eyesight. I have had 4 cycles of carbo/taxol/avastin and 2 cycles of Avastin and Zometa and 1 cylce of Avastin alone. I always had to wear glasses to read but could see very well for distance. Since my treatments I can now read pretty well without glasses but my distance sight has changed and it not as good as it was. Anyone else have this change?

I can only tell you after I had my CT Scan even with contrast there was still the possibility of it being TB or some other kind of infection. The Doctor could not definately say until I actually had a Thorecentesis done and the fluid had cancer cells in it. Just keep thinking positive and keep us informed.

Our disease is a terrible thing as it affects the ones who love us the most as much as it affects us. It totally changes your normal everyday life and the way you react and live together. I am very, very fortunate to have a wonderful husband that is extremely good caregiver. Sometimes he is too attentive and I want to do things on my own. My best suggestion is to call your local hospital and find a support group for him to go and talk to people who also feel overwhelmed with the situation. He will be able to talk things out that are worrying him and perhaps relieve some of his stress knowing others feel the same way and are sharing the same experiences. Your Onc may even know of such a group. I sure feel more at ease with others in my position to talk to and my husband and I have a good friend that was in the same position as I was with stage iv NSCLC adeno. We frequently discussed things together. His wife and my husband talked on the phone and discussed how we were doing and what we doing. It helped a great deal. I hope you too will find some place to feel more at ease and encouraged. This is certainly the place to start. We are all on that same ship, just coasting with the wind, enduring the storms and the calm seas.

Hi Anne, I never stopped working,only took days off when really necessary like a couple of days after my chemo cycle or days I had scans and appointments. I have pain in my back and legs as well and believe me I wish I could stay home most mornings. They were laying off heavily in my company since it is involved in the mortgage business and I was afraid I would lose my job. I do get tired later in the day and don't have as much ambition as I use to but it does take my mind of hurting and feeling bad. You have a lot with the children let alone working full time. Possibly part time might be okay, but don't push yourself too much. Save your strength for fighting this disease and playing with your beautiful children. They grow too fast to let this precious time go by.

I was born and grew up in Massachusetts, Lynn to be exact. Don't miss the cold and snow but do miss the change in the seasons. I now live in southern Florida.

Welcome Susan, I too am new to this site but fing it very comforting. I was dx with IV stage NSCLC last October. Had a bad cough that wouldn't go away for 3 months before that but was told I was having severe allergy attack..sure. I had the same cocktail of Taxol/Carbo/Avastin for 4 cycles on a clinical study for Sutent. Fortunately I didn't get the Sutent since they have stopped the study because of the severe side effects. I am not on Avastin every 3 weeks for 8 cycles and Zometa every 6 weeks for my bone mets. The pain I had during my treatments which were exactly like yours were from the Taxol not the neulasta (sp). They actually occured before I even took the Neulasta. Believe it does get better. I felt stronger and had more energy about a week afer each treatment. Keep positive and it will beat this horrible disease!

Shelley, always post good news, it gives the rest of us survivors more determination and hope.

I had both a Pet and Ct scan and they showed up some cancer cells in my spine, neck and rib. I too have a lot of pain in my lower back that radiates down my sciatic nerve (butt). My ONC seems to think the chemo and other drugs I am on will take care of those cells in the bone as well as in the lung. I have a question, I have completed my cycles of Carbo,Taxol and Avastin and right now on Avastin every 3 weeks and Avastin with Zometa every 6 weeks. I have had two cycles of both drugs and 3 of just Avastin. I am having some pain in my left lung area especially when I lay on my side. This is the lung my NSCLC was found. Is anyone else experiencing this pain? It has me kind of concerned.

Hi everyone, I am also on Zometa every 6 weeks, I have had two treatments and the only side effects are aches and pains in my neck, back and rt big toe. Silly huh! I take Tylenol Arthritis extra strength and it helps the pain some.

I know when I signed the consent form for the clinical study there was also a place to drop out whenever I wanted to. Do not let anyone coerce you into anything, you have enough on your mind without having to worry about that. I know the chemo you are having takes up pretty much of the day and you are mentally and physically exhausted by the time it is done and just want to get home. If they confront you just simply tell them you do not want to participate and to please leave you alone. It doesn't sound like they have your best interest in hand right now. I kind of felt like that when my clinical study was cancelled because the fourth drug in the study (which I did not randomly get choosen to take thank goodness) caused a lot of serious side effect problems. It seems I am treated differently now, not so much clinically but the way the converse and dote over you when you are in the study for them.

Renate, the tingling and numbness has pretty much subsided. I haven't had Taxol now since 1-2-2008. I assume you are going to have 6 cycles, like I said it seemed to get a little easier after the first one. Same side effects but not as severe and only lasted a couple of days instead of 5 days on my back.

First treatment was on Wednesday and the truck hit my Friday morning. I was in bed for 5 days as well, just real weak,tingling pain sensation starting in my knees and running down to my feet. It was the Taxol and when they reduced the dosage just 20%, I still had some weakness and tingling pain in my legs but not as severe and it only lasted 3 or 4 days.But I was able to get up and do some things unlike the first treatment. I did have numbness in my hands and thumbs, it was intermittent. My ONC was not too concerned by the numbness etc, but every ONC is different and have their own ideas of treatment and remedies. I could not take any other drugs to alleviate the symptoms because of the clinical study requirements. I had Neulasta shots twice and had no side effects either time. It was the Taxol that was causing all the side effects. Fortunately, this 3 drug combination works well and I got good response with the tumor shrinking enough to go to just the Avastin maintenance for now. I know it will do its job for you too Renate, my thoughts and prayers are with you. Think positive that this uncomfortable time will pass and you will feel stronger after each time, which is your body working with the medicines to rid the disease.

Renate, I was in a clinical study and I also had Carbo, Taxol and Avastin. My first treatment knocked me for a loop on the 3rd day after for abiut 4 days I could barely eat or move. Felt like a truck ran me over while I was sleeping. They lowered my Taxol dose by 20% for the next 3 treatments. I did still have the pain in the legs but not as severe and they didn't last as long. I still felt stronger and stronger after each treatment. About a week and a half after the treatment you will start to notice a difference. Keep your chin up, things will get better.

Thanks for the warm welcome Connie B. I will keep in touch and continue to read others inspiring stories.

I am new to this forum but had to add my 2 cents in this survivor war. I was DX with NSCLC stage IV on Oct 2, 2007, my 61st birthday. 6 months after I got married to a wonderful husband and caregiver. I entered a clinical study and received 4 cycles of Taxol, Carboplatin and Avastin with a good response. I must say the chemo treatments were a little rough because of the severe leg pain and fatigue, but not near as bad as I thought it was going to be. My CT scans have shown improvement and shrinkage consistently, the fluid is also subsiding. I am now on the Avastin regimen every 3 weeks with Zometa for my bone mets every 6 weeks. I am having some pain in my chest and back radiating down my sciatic nerve, but hey I am walking around and living some kind of life now. Happy for that! I am a survivor as long as I wake up and see the day begin, play with my dogs and go to work.