rinksgal

Norme, I am so very sorry!! I truely am, this made cry! Sometimes I wish we all lived in our own special community and we could really lean on each other and give an actual hug to the people we have grown to love! I wish I could do something for you to help make this easier! Just know I AM thinking about you and buddy!! Christy

I remember reading that shortness of breath can be a side effect from this. I hope Darrell doesn't have this problem..If so at least it should just be temporaily. It does seem that the worrying never stops!! Thats all I do anymore...Sometimes I think I'm gonna stress my self totally out into medical problems myself. Darrell was so grouchy yesterday.. I just had to bite my tongue. I understand him not feeling good and that this makes him grumpy not to mention having the cancer alone makes him this way. I DO UNDERSTAND!! But dang sometimes its hard! The nurse practioner said that he actually could of had this shot last time, but no one mentioned it..I wish they had of, maybe he wouldn't feel so bad now, and who knows maybe it wouldn't have mattered.. They told me this only help 6 out of 10 of the people thats why after the 2nd or 3rd shot if it doesn't help they discontinue it with it costing so much... I hope Buddy gets feeling better too!! I'll say a special prayer for him and you!! Christy

Just thought I'd let everyone know that Darrell started feeling really bad last thrusday and really weak. It continued until today, along with a small cough, sore throat and runny nose..and a low grade fever of 99.8.. So we called the oncologist and had to go to Columbus today to get his blood levels checked and they did a chest xray just to be sure his lungs were fine. They were clear, They put him on antibiotics. His WBC were 1.5 and ANC is 0.9 ... his PLTS 203 and his HGB was 8.9 so they started him on a shot of Aranesp (Darbepoetin Alfa) They said this is like procrit except newer and you only have to get every 2 weeks instead of every week. He has to get this every 2 weeks for probably 3 to 5 injections... Hopefully this helps...They said if his temp. had been 100.5 they would have admitted him with his levels being so low. They didn't give us his rbc levels, computers was down, so they just wrote these down for us. He is suppose to stay away from crowds and people...Which I'm sure I don't need to tell any of you about this... Does anyone have any experience with this injection and what kind of side effects did you have if any? I would appreciate any information on this that anyone can offer me. Thanks!! I know this is one expensive injection!!! Thank God for insurance... They said they bill the insurance company 2500.00 for just one shot..The pharmacist came in and talked to us about it. Says it cost them 1100.00, big mark up huh? Can anyone tell me how fast a persons levels usually come back up? I'm sure this varies!

My s/o is also getting a cold, he has a runny nose, sore throat and a small cough..he just finished a chemo regime on sept 15... 6 days in a row.. He felt great for a week and then this past thrusday I think it must have got up with him, he so weak and no energy and no appetite... and now hes getting a cold..We are calling the doctor first thing Monday morning.. Debi I'm glad your feeling better... We panic over everything, I think that goes with the territory!! Good Luck and keep us post to how you are feeling.. Christy

I'm glad you let us all know how her surgery went. Tell her we are thinking of her and we wish her a speedy recovery!! Christy

I don't know if this is the same thing or not, but Darrell always has problems with his stomach while doing chemo, but he says it feels like his food just lays there and doesn't digest...One chemo nurse reccomended him trying reglin, or reglan, I'm not sure of the spelling... But anyways it has really helped him with this problem... Hope this is of some help... Christy

My s/o is a stage 3b and that is how they found his cancer. Due to his 24 hour fevers, and chills and day and night sweats! He would be up and down all night and couldn't even lay back in the bed without it being changed. It was like someone had dumped a quart of water in the bed. Some nights he changed his clothes 6 to 7 times.. Not to mention the same problems during the day. Most nights he would end up with a winter coat on and I would pile the blankets on him, because he would be so cold.(keep in mind this is with 80 degree weather). One minute he would be freezing and the next he would be hot! I agree with Christina too, that maybe you should also ask if the tumors could be causing this. Darrell's oncologist said its not a symptom of lc, but he agrees he now says that it is for Darrell. The oncologist wasn't even the one that ordered Darrells pet scan which found the new tumors growing in his lymphnodes, it was Darrells regular doctor. Because no one else would listen to us.

When my s/o was getting his radiation, they called us one day to cancel one of his radiation treatments, due to the machine breaking down, also another day we had to wait a long time due to the machine being broke down earlier that morning. Darrell also hated not getting his treatments!

my s/o just turned 50 April 3 and he started feeling bad in March and started with a low grade fever is the reason they found his lung cancer, They found his mass May 7th which was also in his upper right lobe. Tumor was 4.5 cm. no lymphnode involvement. He also has Adenocarcinoma. He smoked a pipe for 28 years but had quit 5 years ago. He was first diagnosed 1b... had surgery and told no treatment needed, but fever returned 5 weeks after surgery.. Anyways to make a long story short, they did a pet scan in july and found 3 lymphnodes with tumors in them, the largest being 2.8 cm x 2.8cm...He was restaged to 3b He just finished his radiation last week, also 33x... He just finished his 3rd series of chemo, doing cisplatin and vp-16, and will be starting taxotere 3 rounds starting in about 2 1/2 weeks...We aren't sure of his prognosis at this time, my s/o doesn't want to know at this point, so I respect that and don't ask either. He also has a small pleural effusion, fluid went away on its own. I was like you, I thought I had years to quit, and I also thought I must have good genes, because my grandmother smoked for years, non filter cigs and a heavy smoker. As I "Was". I quit after my s/o's diagnosis of nsclc, and now I'm scared to death of getting lung cancer. I just hope I quit in time! I wish you the best of luck Alan! I vent here alot along with alot of others and let me tell you there are some really caring people on this site!!

Cheryl, I hope that things go really good for you! I just wanted you to know that I my thoughts and prayers will be with you!!! Christy

Tanya, I'm so sorry for your loss!! I mean that from the bottom of my heart!! My prayers are with you! I will pray for God to help you and your family through this tragic time. Christy

What is a PCI ?? I'm just curious.. Also what is six rounds of chemo? Our doctor calls them regimens or series... Darrell has already had two regimens of chemo and is into the 3rd day of the third regimen.. All 3 lasting 6 days each.. (cisplatin and vp-16)...Then sometime the first part of oct. he will be starting another regimen , of taxotere, 3 doses, each being 3 weeks apart. So is this 4 rounds? or do you count each day?

Al that was a beautiful life you shared!! I'm so glad you had all of that special time together!! It brought tears to my own eyes! Christy

We almost went to the mayo clinic in Rochester, but it would have been a very long drive and he didn't really feel up to it. Instead we went to the James Cancer Center in Columbus Ohio, which is only an hour drive for our second opinion.. We have decided at this time to stay there. After reading your article I'm glad we didn't go there now!! My s/o starts taxotere in about a month after dong some more cisplatin and etoposide. I wish you and your mom the best of luck!! We all need hope and it is hard to believe how many different opinions is out there! I think we could go to 20 oncologist and they would all have different things to say... Good luck!! Christy

Norme I'm with you on the fact that they don't take the time or to designate someone to "fill them in on the correct information before walking into our room, I mean he actually told us, that Darrell has mets to his liver!! At first I felt instant panic, and thats why I asked why do you think its cancer? Then I realized he hadn't even seened the report. He was going by the ct scans, which I'm assuming he looked at before coming into the room, Because a nurse told us he was looking at the scans..which showed new lesions. In May Darrell had one lesion, last scan showed 2 lesions, and the one Aug 27th shows 6 lesions... What could cause Lesions if they are not cancer???? Or could they still be cancer? Wouldn't they have shrunk if they were cancer? Or do they need to do a certain type of chemo for liver cancer? I mean the report says "Presumed hepatic cyst" quote unquote" on one report from this last ct scan. and on the other report also from this last ct scan says: "small subcentimeter low-density lesions in liver are probably benign; however, metastatic disease cannot be excluded and could be evaluated with MRI" Which all the ct scans have said this but no one has suggested an MRI? the second lesion shows a peripheral enhancing nodule likely related to hemangioma? Then the report goes to say other subcentimeter lesions are seen and it goes to name the locations of these lesions. Then it says some of these lesions were noted on the prior ct scan and are stable. Can anybody explain this for me? Or has anyone had this type of lesions end up being cancer later? I want some opinion here? or warning on what to expect, especially if others had this same type of report or something similar and had them end up being cancer later?? and what is granulomatous disease? Also I want to thank everyone thats replied about the side effects of taxotere... Darrells worried about the finger nail thing!!

Darrell has actually gained 5 pounds and is starting to eat better. I think he ate some things earlier on that really aggitated his esophagus. Hes learned what not to eat, plus with a 2 and a half week break from chemo, his appetite has gotten a little better. We saw the oncologist yesterday and his largest tumor in the medistianum area has shrunk from 2.8 cm x 2.8 cm to 2.2 cm x 2.2cm. He has a total of 3 tumors in 3 nodes. They say part of the 2.2 is probably scar tissue, they just can't tell how much is tumor and how much is scar tissue. The radiation oncologist last week gave him the option to do another week of radiation. Darrell told him if thats what you think I need then lets do it!! Even though he was really looking forward to that being his last day. He told the radiation oncologist "in case you aren't aware of it, I don't want to die, I want to do whatever I have to do to live" So that will make a total of 33 radiation treatments. Also I wanted to add that we saw the regular oncologist yesterday and he wanted Darrell to do another cycle of cisplatin and vp-16 (etoposide). Which he is to start Monday, 6 days in a row and then he wants him to do 3 cycles of Taxotere.. with 3 weeks in between each cycle. Darrell then asked him about the lesions on his liver, because now he has 6 lesions. The Oncologist said yes thats because it has metastsized to the liver. I asked the oncologist, "what makes you think that they are cancer?" He said because there was new ones.. He'd looked at the new ct scan that Darrell had done on Aug. 27th. Well what he didn't know was that we already had a report on the new ct scan, and had already talked with the radiation oncologist. The report and the radiation oncologist said that they thought it was not cancer, but cyst. Well we didn't mention any of this to the regular oncologist because we wanted to hear his opinion... But this told us he had not even read the report. Well after he left to get us a copy of it, he must of looked at it, and had the nurse come back in to give it to us and she says oh, and I guess they decided the lesions on his liver are NOT cancer, but cyst!! The doctor didn't even do this hisself.. Which I think he should have, but thats besides the point I guess. From now I plan to ask the nurse for a copy of the reports so that we can go over it before they ever come into the room, then if we have question we will know what to ask, and I'm hoping this will make him actually read the report before seeing us!! I just keep thinking what about the people, that just take their word, and never get copies of their reports. Do they really even know whats going on???? Darrell says we kind of set him up, but he should know whats going on when he walks into the room.. I don't care how many patients they have, they should update theirself before they enter the room. I do know they plan to watch the lesions still. Does anyone know what the lesions could be?? I had all intentions on asking, but when he said what he did, I just forgot all of my thoughts, and I even had notes with me. Darrell was kind of bummed about doing cisplatin again and vp-16...But once the oncologist found out he was doing more radiation, he said it works better with radiation. I know I've written a book, but I wanted to tell you about us totaling my car on one of our trips back from chemo and radiation 2 weeks ago.. It was the other guys fault, he t-boned us. I just thank God no one was hurt and our little puppy wasn't hurt!! and that Darrells treatment was able to continue as planned!!! Also does anyone have any experience with Taxotere. What were some of your side effects? We read it could even make a person lose their fingernails??? Has anyone had this happen? Thanks!

I realize no one propobably understands me, but then again maybe someone will...Darrell went to get his next to last radiation treatment today, and he always sees his radiation oncologist on Tuesdays, but being he was on vacation he was to see him today, which is wednesday. I started back to work on Monday, having the summer off... I work for the school system.. Anyways Darrells oncologist ordered a diagnostic ct scan to be done today too... When I got home from work he wasn't home...I got worried I called everyone I knew and his cell phone but got no answer. I called and called, and finally hours later got him, and he was ok, but today was a long day for him, just waiting.....nothing wrong... We "Thought that we wouldn't find out the results of this test until Next wednesday!" But his radiation oncologist once he found out the regular oncologist ordered this told him he'd see him tomorrow and go over the results... So I called my boss and I have tomorrow afternoon off....Anyways During Darrells wait he talked to someone who was getting the same test he was getting and also found out this guy has the same doctor he has. Except he has sclc. This guy told him hes been receiving chemo for a year, and that hes done 40 treatments of radiation, some to the head as a preventative treatment.... He said he was tired of doing chemo and needed a break, even thought his wife and kids wouldn't be happy about this...Darrell asked him if the doctor had given him a prognosis and he said they won't give you any answers and that hes pretty much decided hes gonna die, its just a matter of when... This has had me so upset ever since, because I guess I inside I feel lung cancer is gonna take Darrell's life, its just a matter of how long....6 months, 2 years, or 5 years or what.....I don't want to think this way, but its hard not too... Everyone talks about survival, but how long is a survival ???? I want him around forever, but thats unrealiztistic, no one has forever, but to me our life has only begun!! I want more time, I also want quality, not just quanity, because to me to want quanity means I'm being selfish!!!! This guy told him hes sick of being sick, so whats a life for our loved ones feeling sick all the time!!?????? Are they only hanging on for us??? Are they only doing their treatments for us???? I don't mean to sound so down, but I am down!!! I've cried and cried tonight, because I'm scared and I feel so alone!! Darrell has always been such a possitive person, and after talking to this guy, I think it made him realize treatment is only prolonging his life... I want to know everything, but a part of Darrell doesn't! He has never handled any kind of negativity!! and this is the most negative thing hes ever had to deal with in his life!!! and sometimes he deals, and other times he wears blinders, but I guess thats his way of dealing with it, by not dealing with it...Am I making any sense at all????? I doubt it!!! He thinks the ct scan will say cancer free now, even though they told us not to exspect much change at this time.. The oncologist told us he "Will be doing more chemo" but Darrell refuses to remember that, why does he not remember things I know they said??? They even said two more series of chemo, but with different drugs, Darrell says he only want to think about that radiation is done tomorrow...I do understand this, but hell I don't know!! Its almost midnight and I have to get up a little before 4:00am....for work! I wish I was still off work, I hate it that I've gone back to work!! I want to be with him all the time!!! I want him back the way he was before this horrible disease tore into our lives!!! I "Miss Him" Sometimes I feel so lonely!! This is such a horrible thing to say when hes going through such hell, but I feel so damn lonely inside and so tore up!!! I want him back, I Hate fu**ing cancer so damn bad!!! I feel so tore up inside!!! I want his cancer to go away and bring back the man I fell in love with and need!!! I haven't lost it for awhile, I guess its my night to lose it!!! I need him and love him so much!! Why does this evil thing have to "STEAL" our lives!! Why does it take away our happiness as we once knew it???? I'm sorry for writing another book, I'm so good at that sometimes!! Just when I thought my drugs were working!! I love this man more than anything, can he survive this??? Am I fooling myself to think he can??? I do I want him to live so bad that maybe I'm wearing blinders by thinking that maybe he can make it, and have some quality to his life, or is he gonna hang on and on just to be here, but not really exsist??? Got I sound so rude and so nuts!!!! I JUST WANT HIM TO BE ABLE TO ENJOY HIS LIFE AGAIN!!!!! Is this possible????? I've got to get to bed its almost midnight here!!! Good Night for now, God I pray his ct scan shows some change!!! It has to, right????? You can't go through 12 days of chemo and 28 days of radiation and have no change, right???

No Darrell doesn't smoke, he quit almost 5 years ago...He used to smoke a pipe. Thanks everyone for your information...

Tracey, Hes holding his own at the moment... I too have tried like everything to add extra calories... I've used half and half, whipping cream and boost in his shakes, sometimes I've used vanilla flavored soy milk, because it has protein and other things in it, not to mention anything to add more calories....I hear so much about sugar, I kind of hate using whipping cream and anything like that..Its so whierd how sometimes things you think theres no way he could eat that, he can, and things you think he shouldn't have no problem eating, he can't swallow without lots of pain or choking ... Its hard to understand sometimes....But I know all of you thats been through this, do understand very well!! I really appreciate everyones concern and the private emails!! It means so very much!! I just started back to work this week, which I hate, but glad I had the whole summer to spend with Darrell..I work for the school system, so I was out for the summer..The school kids are a big distraction!!!! I think its the first time I've thought of anything but Darrell having Lung cancer in months!! (Of course he's never really far from my mind!!)I just thought I was busy before!! HA!! Now my day starts at 4am!! I worry more about him, not being able to be with him 24 7 but he still sleeps alot, and usually does so while I'm gone... At least with my job I won't have any problem taking off when I need to, and if needed we have a couple of friends that have offered to drive him or go with him.. Anyways I just wanted to update everyone... Plus he gets a new ct scan wednesday, and then next wednesday we go to the oncologist to find out the results and what they are doing next. He said last time we saw him that Darrell would be receiving a couple more series of chemo possibly being done 4 days at time, compared to his other 2 series being 6 days in a row, but with a different drug... Last time it was cisplatin and vp-16.. I hope there is some change in his tumors!! Say a prayer!! I haven't had much time on here to post lately, but I have made the time to read all the new post... Thanks everyone, sorry this is so long!

Shellie, Thanks for the email, I cried when I read it!! My heart is breaking for you and I pray that God will give you strengthen to get through this horrible time!! But just remember your mother is at peace now, and she won't have to suffer anymore! I know none of us can do anything to make this easier for you! I wish to God I could!! Just know that my thoughts are with you!!! email me anytime you need someone to talk to! ""LOTS OF HUGS TO YOU"" Christy

Darrell, can't stand boost or ensure either... Maybe I need to buy carnation instant breakfast drinks... and mix with milk or something... Anyways thanks for your help...Anyone elses advice is welcomed! Christy

Darrell, just came in here and said that boost plus has beta-carotene in it, and that the oncologist said to stay away from extra beta-carotene. I don't remember him saying that, I do remember him saying stay away from something, but that was early on and my mind was all jumbled. He already takes a multi-vitamin, which also has beta carotene in it... Now I'm afraid he won't drink the boost.. Hes already had so much weight loss I'm afraid now he won't drink that.. Can anyone give me a good link to a site about this information on extra vitamins and whats bad for ones with lung cancer. What encourages growth? We've also read alot about sugar being bad. What do some of you take and what have your doctors told you about certain vitamins? Information needed? Thanks

This Monday when we went for his chemo and radiation treatment, Darrell got on the scales and he'd lost 12 pounds since friday. We both were in shock!! I figured he'd probably lost another 5, but 12 took us both by surprised...We saw the radiation doctor that day and they told him his lips looked dry and that he was starting to dehydrate... and that he needed to drink drink drink!! If not they'd have to give it to him by iv.. He told them he would start trying to drink more...The chemo he got on monday which is cisplatin, they hydrate you before and after...The chemo nurse told him he would probably feel better after wards due to the hydration.. Let me tell you he felt so much better, he decided that they must have been right that he was getting so low on fluids that it made him feel bad.. So now hes at least drinking LOTS of liquids!! and he is eating some soups and boost...The doctor also told him if he doesn't eat he needs to drink 5 boost a day...He couldn't believe that either...So hes trying to do better... You know even though I urge him to eat and drink, I can't make him, and I guess with him seeing how much better he felt after getting him hydrated, hes decided its more important than he thought... I want to thank everyone for their post and responses!! They help alot!!

Yes my s/o was also told no further treatment needed. They said they got it all by removing his right upper lobe and that he was a very lucky man!! We got two opinions from two different oncologist. The second one told us of the new study, but said he didn't think Darrell needed to go through all of that at this time. They had removed 9 lymphnodes and all were clean. He had his surgery May 20,03. and within 5 weeks his fever returned(for some reason he always runs fever with his lc) and no one would listen to us, except his family doctor, who ordered a pet scan. Which showed magligancy in his mediastinum area.. Darrell questions hisself about his decision not to pursue other treatment.. But like I told him, they would of had him recover from his surgery before they would have started anyways. But He says if he had it to over he would definelty demand chemo... This is a horrible disease and none of us know what will happen next....I wish all of you the best of luck, and I'm not trying to worry any of you. But we were told the same thing. and here it is august now and hes been doing radiation and chemo, with more to come.. No Treatment Needed!! WHAT A JOKE!! Now a little over 2 months later he has mets to his liver, lymphnodes in the mediastinum area and a small pleural effusion. Good Luck

Don, I'm so glad to hear that Lucie is doing so much better, and on the road to recovery!! I will continue to remember you both in my prayers!! Christy