rinksgal

Don & Lucie, I will be thinking of both of you and will be sending lots of prayers above!!! Good luck and keep us all updated!! Christy

I really don't know what to say, all of this is fairly new to me too! But I will say a prayer for you and your husband. And I too hate Cancer and what it has done to my boyfriend (s/o) and my own life!! Its the uglyiest word I have ever heard!! "" How a person prepares for a loved ones death I will never know " I try to tell myself that I need to be prepared incase Darrell doesn't make it. Its hard to watch them go through so much!! I know I feel so helpless sometimes!!! ""Hugs to You and Lotssssssss of Prayers!!""

Carleen, Thanks so much for your support!!! Its so nice to know I'm not all alone in this. Sometimes you feel like no one can understand how you feel and then I read the other post on here. and it could have been written by me, and the sad part is, it makes you realized that there are others out there going through this horrible pain, the same pain, confusion, and torment that I feel inside!!! Its something that I wish no one would ever have to go through!!! I'm like you, cancer is the uglyiest word I know!!! I wish I could wipe it out of everyone's life that it has infected!!!! I wish God would just make it go away!!! thanks for all of your advice I will take it all to heart!! I loved your last paragraph. About cherishing the time we do have together... I read a post the other day and something in it clicked that made me realize I was so assumed with searching on here for ways to help him, which I need to do, but not quite so much. that I was letting it take me away from spending the time with him that we should be spending. So now I try to just get online during the time hes sleeping.. I wish you and your husband the best!!!!!!!!!!!!!!

Thanks so much for the information... Its very helpful! I will have to tell Darrell about that beard thing, maybe he won't lose his beard either... Not that it matters really. I'm just worried about side effects that are gonna make him sick. He never gets sick, I hope hes the same way through all of this treatment thats ahead for him...I don't want to see him sick!! Of course hes sick now because of the fever and the lack of energy he has. Is there any kind of advice or words of wisdom anyone wants to give me that will help me help Darrell while he is going through this. Things maybe I should or shouldn't do?? I feel like I just babble any more!! I've cried alot lately, I just haven't been able to pull myself together very good!!! My doctor just called in a medicine that I need to go pick up for me. To help me get a hold of myself. I'm no good to no one if I'm falling apart and crying on and off all day... I guess bottom line is I know its bad with another tumor growing in his chest and a node swollen. I guess I feel like hes gonna die and no matter how much I try to will him to live, nothing is gonna work.... I feel like the doctors weren't aggressive enough and should have done test sooner. But, Darrell feels like he's in good hands and that we have to trust the doctors and their judgement. I have a lot harder time doing this. I don't trust any of them, not just his, I second guess everything they do!! I've seened too many doctors make bad and deadly mistakes! But I am glad he trust them and hes trying to do everything he can to live. He told me last night that if he thought he wasn't gonna make it at least 2 to 3 years by doing treatment. He wouldn't even do it! He said you know maybe I need to ask them about that, cause I wouldn't go through all of this if I thought I was gonna die in 6 months anyways... I do give him total hope and encouragement, but sometimes I cry because I don't want to be without him... How do you tell the person you love most in the world you love them and are so afraid of losing them, without making them think they aren't gonna make it?? God Bless all of you and thanks a million for your concern and all the information all of you give me!! My prayers are with all of you daily, I hope the choice that god makes for the ones that we love is the same choice we want!!!

Could someone please tell me if they have taken these meds for chemo or if you know someone that has. 1. Cisplatin (Brand name: Platinol) 2. Etoposide (also knowm as VP-16) If anyone knows of anyone whom has taken these could you please give me some information or if you know someone who has taken them. I'd like to know how others got along with this and what kind of side effects you had. I know there is a 100% guarentee the oncologist said that he will lose all body hair. He isn't concerned with this. His kids though have never seened him without a beard, so hes gonna shave it all off hisself this weekend. We think it might not be quite so hard on them as seeing it all fall out.

Lots of prayers to you and your mom shellie!!!!!!!!!!! Thanks for the pm you sent me!! It really helps to have so many people care!! I just wish I could do more for you myself!!!!!!!!!!

My Prayers and thoughts are with you and your husband!!

I am so confused, we have been told 2 different things now, one from the regular oncologist and something different from the radiation oncologist?? I guess kind of the same but not quite.... We saw the oncologist today(Wednesday) and this is what he told us.....They see 40 or more people today at the James Cancer Center in Columbus OHio and they have never seened anyone have fever and night sweats with adenocarcinoma...So they have order a bone biopsy for monday Morning at 8:30am and then they are doing chem and radiation....one week of chemo with radiation then weeks of radiation alone 5 days a week, and the last week with radiation and chemo...Chemo combo will be etoposide and cisplatin. This is what we were told: He either has lymphona and it has metastasized to the lung (which is what they thought he had was lung cancer, which was removed May 20, 2003) Or he has nsclc which has mestastasized to the nodes, in which case he is the first case they have seened with his symptoms of fever and profuse night and day sweats.. or he has 2 types of cancer???????????????? Lymphona and NSCLC.. They are having his pathology slides sent over to them, so they can review them theirselves... and the bone marrow biopsy which is on Monday along with chemo and radiation...(they said the chemo alone would take 6 hours) They said that the slides and the bone morrow biopsy would help them determine what he actually has. The cardiothroaic surgeon is the one that made this dx in May of nsclc, with grant hospital. Does anyone know anything about the chemo drugs he will be having????????? or has anyone had anything like this happen ???? How the he_ _ can they not know what he has??? I'm so dang confused and upset. I'm not sure what I want to hear. They wouldn't or couldn't even give him a stage until they find out whats going on... I'm feel like my whole world is caving in!!!!!! He's handling all of this so good, and I"m trying!!! _________________ Just another update on Darrell: this is the one from thrusday when we visited the radiation Oncologist: The radiation oncologist says that 2cm mass in his medistinum area is not in the actual node, althought there is one node that is a little swollen, to him it looks like the same type of tumor they took out when they removed his right upper lobe of his lung, which is the adenocarcinoma nsclc poorly differentiated (non small cell lung cancer). They did do another cat scan today at the James Cancer Center.. The original one that someone else did on his chest didn't get a picture of this area of where the new tumor is growing...this one was done before he ever had his surgery May 20th (So was it there all along???) Do Doctors even know what the he_ _ their doing?? If so this means it metastasized to the chest area,which would make him now a stage 4, but I don't know nothing for sure, but he also thinks he might have lymphona too because of all of his other syptoms, so we still won't know the answer to that question, not till after monday... I will keep you all posted!! Pray for me to be stronger, I'm not being very strong at this point!! I"m scared to death...Its just not good!!!!!!!! _________________

Just another update on Darrell The radiation oncologist says that 2cm mass in his medistinum area is not in the actual node, althought there is one node that is a little swollen, to him it looks like the same type of tumor they took out when they removed his right upper lobe of his lung, which is the adenocarcinoma nsclc poorly differentiated (non small cell lung cancer). They did do another cat scan today at the James Cancer Center.. The original one that someone else did on his chest didn't get a picture of this area of where the new tumor is growing... (So was it there all along???) Do Doctors even know what the hell their doing?? If so this means it metastasized to the chest area,which would make him now a stage 4, but I don't know nothing for sure, but he also thinks he might have lymphona too because of all of his other syptoms, so we still won't know the answer to that question, not till after monday... I will keep you all posted!! Pray for me to be stronger, I'm not being very strong at this point!! I"m scared to death...Its just not good!!!!!!!!

The oncologist we are going to at the James Cancer Center, did not make the original dx.... The cardiothroaic surgeon, along with grant hospitals pathology department made his dx in May. So thats why the Oncologist wants to see the actual pathology slides himself, and is doing the bone morrow biopsy. He wants to make that call himself now, or is double checking their work. I just wonder if they'd done this pet scan from day 1, maybe they would have found these swollen lymph nodes.. Maybe they were there all along???? If so this sucks!! They just have to go to down the list for insurance purposes. Guess our value of life doesn't matter much to them!!! Now we also wish from the moment we heard that he had a large mass in his upper right lobe that we had just gone to the James Cancer Center...But no we listened to others and ended up at Grant hospital with a carothroaic surgeon, not that he wasn't good, he was, but maybe we wouldn't be gone through all of this stuff now. Maybe someone would have checked him for other things then... we are going back to the James today to see the Radiation Oncologist..and find out more about the radiation..and to get his tatoos as they call them..Well I'm gonna go lay back down, I only got 3 hours sleep, Darrell woke up having bad chills, teeth chattering so hard... He went and layed on the couch after putting on sweats and a winter coat, I then put 2 heavy blankets on him doubled over...His fever was almost 102... It usually stays around 100. 3 ... One minute he will be freezing and the next he will be stripped down to nothing but boxers, and the central air will be turned down, cause hes burning up...Now he will wake up and be drenched....I will be so glad when they start treatment for him, they said it should take the fevers and night sweats away..

Thanks alot I appreciate your reply... I don't really know what I'm hoping for.... but I haven't heard this from anyone else, I'm gonna print this post from you out and take it out to my s/o and let him read it... godd luck and thanks

We saw the oncologist today and this is what he told us.....They see 40 or more people today at the James Cancer Center in Columbus OHio and they have never seened anyone have fever and night sweats with adenocarcinoma...So they have order a bone biopsy for monday Morning at 8:30am and then they are doing chem and radiation....one week of chemo with radiation then weeks of radiation alone 5 days a week, and the last week with radiation or chemo...Chemo combo will be etoposide and cisplatin. This is what we were told: He either has lymphona and it has metastasized to the lung (which is what they thought he had was lung cancer, which was removed May 20, 2003) Or he has nsclc which has mestastasized to the nodes, in which case he is the first case they have seened with his symptoms of fever and profuse night and day sweats.. or he has 2 types of cancer???????????????? Lymphona and NSCLC.. They are having his pathology slides sent over to them, so they can review them theirselves... and the bone marrow biopsy which is on Monday along with chemo and radiation...(they said the chemo alone would take 6 hours) They said that the slides and the bone morrow biopsy would help them determine what he actually has. The cardiothroaic surgeon is the one that made this dx in May of nsclc, with grant hospital. Does anyone know anything about the chemo drugs he will be having????????? or has anyone had anything like this happen ???? How the hell can they not know what he has??? I'm so dang confused and upset. I'm not sure what I want to hear. They wouldn't or couldn't even give him a stage until they find out whats going on... I'm feel like my whole world is caving in!!!!!! He's handling all of this so good, and I"m trying!!!

I don't know how old this post is but we live in Newark, Ohio. and when they found a mass in my s/o right upper lobe 4.5 cm big.... His step daughter worked at Grant and she did some checking and reccomended Dr. Esterline at Grant. He did my boyfriends surgery and removed his right upper lobe. We really liked him. Good Luck!!

I've read where people lost their voice, could this happen to him where he will have the radiation? His is in the medistianum area?

Well the Oncologists office called today, we have an appointment to see him tomorrow to find out what kind of treatment they plan to do, now that my s/o's cancer is back in his mediastinum area in his lymph nodes They called to set up an appointment for Thursday for him to see the radiation oncologist. So does this mean they are probably gonna do radiation on him????? We still go see the oncologist tomorrow. What kind of side effects can this give him??? How many treatments do they give for this and how is it given? also I want to add, I keep reading different post, about people losing their voice with radiation. Could this happen to my s/o, or where did these people receive their radiation?

Well the Oncologists office called today, we are suppose to see him tomorrow to find out what kind of treatment they plan to do, now that my s/o's cancer is back in his mediastinum area in his lymph nodes They called to set up an appointment for Thursday for him to see the radiation oncologist. So does this mean they are probably gonna do radiation on him????? We still go see the oncologist tomorrow. What kind of side effects can this give him??? How many treatments do they give for this and how is it given?

Eileen, We won't know till wednesday what the oncologist says...because Darrells family doctor is the one that ordered the pet scan. So at this point all we have to go on is what the family doctor told us. You see though Darrell ran fever when they first found his lung cancer which was his only symptom and the reason they found the cancer. The fever is just like before. At first he started out just running low grade fever anywhere from 99.0 to 100. 4 and took 800mg ibruprophen 3x's a day, and then it gets to the point the ibruprophen anlone doesn't work anymore, so then we supplement in between the ibruprophen with 625mg tylenol....that would work for a while and then the fever would go up over 101 and the medicine quits working to keep the fever down even alternating it. Hes just like before....I'd like to think infection, but the pet scan showed it in his lymph nodes. I read on this site somewhere that an SVU Max of 3.0 represented maglignancy, Darrell has a SVU max of 10.4g/ml... If anyone can explain excatly what this means I'd appreciate it!!! I know none of this is good, but the more I am educated about what is going on with Darrell the better off I am.... I don't share much information from this site with him... Only the possitive post or the survival storys. I search for storys of people that are in his same position and send them to him..... He wants to know whats going on with his health, but he doesn't want to read all of the post, I think it also shows you how bad things can get. Which maybe I need to know to be prepared, (if thats possible) but maybe hes better off not knowing some of that stuff...I only want possitive influence around him!!!! As far as for me, I feel like dying inside, I can't sleep, I can't concentrate on anything for longer than a min or 2...If I eat my stomach hurts and everything just goes straight through me....I feel like all my thoughts are of this cancer and getting Darrell well!!! I'm obsessed with this!!!! Thanks to every one that responsed, it helps so much for people to show their concern... It gives strengthen and energy to me... I guess it helps me get through this, I don't know really what I would do if I didn't have this site. I make time for this..... thanks and prayers to all of you!!

It is hard not to get caught up in everything, but I am spending as much time with him as possilbe. I'm scared that right now might be the best he ever feels...and he doesn't feel good now, but I know it can and probably will get worse before it gets better!!! I hope I'm not fooling myself into thinking he can be this dammm cancer, he can can't he???????????? I don't want to lose him!!! I can't imagine my life without him in it!! I'm a school bus driver and so I'm home for the summer, so with him being off work too, we've become so much closer with all of this going on, and we are able to spend alot of time together!! I'm thankful that I'm able to be here for him...You know I can't concentrate on anything but this damn cancer though, I can't read or even think about anything else. People try to carry on conversations with me and half the time I don't even here what people are saying. Most of them making small talk, but let them talk about Darrell or the cancer and I'm all ears... Its like its consumed my life!!!! I guess it has, both of our lives. Getting him well is the only thing on my mind right now... Thanks for your advice and I will take it!! Hugs and prayers to all of you!!!!

Well his cancer is back in the lymph nodes in the center of his chest is the way the family doctor tells it. The reports says focus of abnormal uptake in the right side of the mediastinum consistent with malignant adenopathy... The computer analysis yields an SVU max of 10.4g/ml for the abnormaility indicating that it represents malignant adenopathy. Says there is a well defined nodular focus of abnormal activity noted in the right side of the mediastinum at the level of the aortic arch. Any infor on all of this would be appreciated??? God Bless and Prayers to all of you!

Norme, thanks for your reply. His family doctor couldn't tell us..Its not his field of medicine I guess... We'll have to wait till we see the oncologist on Wednesday and take the report to him.. Its a long story but his family doctor order the pet scan because of a fever that has returned.. For some reason Darrell runs a fever when his cancer is active...Which is good, but convincing others that this is the reason hasn't been easy, they just thought we were be overly parnoid!! I have another question what is the mediastinum?? I just feel like I need information...knowledge of whats going on helps me!! I also wish both of you the best of luck, and glad things are going better!! I just don't know how everyone deals with this!!

I'm sorry I guess I need to change that now. Darrells was also dx in May, had surgery may 20 removed upper rt. lobe. Because the no treatment was before the cancer returned in his nodes...Makes me wonder if it was there all along, had to be didn't it??? Anyway we go back to the oncologist this wednesday to find out what the treatment will be now. Because now there will be treatment of some kind, we just don't know what.... Why has this spread so fast to the nodes?? I just don't get it, and I don't see how they can say they got it all and suggest no chemo or treatment, and then less then 4 weeks later his fevers back, and the oncologist's nurse blew us off, saying fever isn't a sign of cancer, but his family doctor order the pet scan and it found the cancer back in his nodes in the mediastinum area....Darrells family doctor is the one that called the oncologist and told him of what was going on since we never got past the nurse... And hes the one that set up the appointment for us to see the oncologist next Wednesday... You can bet that nurse is gonna hear a few things!!! I will keep your questions in mind linda thanks so much for sharing with me. So tell me how bad is this??? Being in the nodes in the mediastinum area??? I want someone to tell me please??? I'm the type I need to know what we are dealing with?? Thats the only way I can deal withit. I want the truth straight up from people.. I might go nuts at first, but then I gain strengthen and I'm ok. Anyone that has had this happen, please respond and share some information with me. Linda, I will also pray for your father that things go well and that they are able to do the surgery...

Can someone tell me what stage my s/o is in now... We don't see the oncologist until wednesday.... He was a stage 1B T2N0M0 they removed his upper rt. lobe in May, but now his cancer is in the lymph nodes in the meiastinum area they said... this showed up in a pet scan he had 2 days ago... (SVU max of 10.4g/ml) He was a T2 because of the size of the tumor 4.5 cm. adenocarcinoma poorly differentiated..... what I don't understand is this is about 6 weeks or so after surgery and now its already in his lymph nodes...Shouldn't these after been removed during surgery of the orginal tumor??I don't get it? So does this mean he has mets or is that only if it gets into another area, like liver, brain, bones etcs....??? Does this make him go from a 1b to 3a or b it doesnt make him a stage 4 does it??? Can someone please answer this?

Well guess my worries weren't for nothing. Maybe now they will listen when we say he has a fever again and needs checked!!! The oncologists nurse had blowed us off saying a little bitty fever doesn't come from cancer. Well with Darrell my s/o it does mean cancer!!! Thank God for Darrells family doctor. He did listen and ordered a pet scan. It showed he has cancer in his lymph nodes in the middle of his chest. (The hilum lymph nodes.) This is what his doctor said but now I'm looking at the report and it says (focus of abnormal uptake in the right side of the mediastinum consistent with malignant adenopathy. says computer analysis yields an SVU max of 10.4 g/ml for this abnormaility indicating that ir represents malignant adenopathy)( there is a well defined nodular focus of abnormal activity noted in the right side of the mediastinum at the level of the aortic arch) Can anyone explain all of this to me better??? Everything else in his body showed nothing. I'm thankful for that!!!!!!!!!! I'm scared to death, but we are gonna face this demon head on and it isn't gonna win!!!!!!!!! His family doctor had already talked with the oncologist and we have a appointment with him wednesday!! I guess I'll know more then!! I'm gonna make this short because I want to do some research on the web... Thanks for everyone support and me being nuts last night!!! Does anyone know what stage this makes him in now?

Well guess my worries weren't for nothing. Maybe now they will listen when we say he has a fever again and needs checked!!! The oncologists nurse had blowed us off saying a little bitty fever doesn't come from cancer. Well with Darrell my s/o it does mean cancer!!! Thank God for Darrells family doctor. He did listen and ordered a pet scan. It showed he has cancer in his lymph nodes in the middle of his chest. (The hilum lymph nodes.) This is what his doctor said but now I'm looking at the report and it says (focus of abnormal uptake in the right side of the mediastinum consistent with malignant adenopathy. says computer analysis yields an SVU max of 10.4 g/ml for this abnormaility indicating that ir represents malignant adenopathy) (there is a well defined nodular focus of abnormal activity noted in the right side of the mediastinum at the level of the aortic arch)Everything else in his body showed nothing. I'm thankful for that!!!!!!!!!! I'm scared to death, but we are gonna face this demon head on and it isn't gonna win!!!!!!!!! His family doctor had already talked with the oncologist and we have a appointment with him wednesday!! I guess I'll know more then!! I'm gonna make this short because I want to do some research on the web... Thanks for everyone support and me being nuts last night!!!

Thanks John for all your information. I will check all of this out. The doctor called a little bit ago and wants us to come to his office at 2:45 today to go over the test results with us. I'm scared, so dang scared!!!!!!!! Doctors don't have you come in unless its bad news!!! I'll let ya know what we find out.....