elkiesmom

Jean I am so sorry and I do know what you are going through. My Dad died of LC when he was 64 and that was 34 years ago. He died 9 mos later. My husband was diag with LC when he was 63 and it is over three years later and he is doing fine. Times have changed and they are changing quickly. You and your hubby can only take it one day at a time. Good bless you and your husband. Fiight the fight.

Bobby I know you were not saying that. I was just venting and saying what I can't say to anyone else. I should be on this board all the time but I come only when i am worried. I should come and give support to many and I was going to do that several months ago but we were trying to sell our home in FL and you know how the market is. It took 5 mos to sell it and we were lucky to have sold it in 5 mos since many have had their homes on the market for over a year. We also bought this home in Nov before we sold so my mind was on another crisis in my (our) life. We are going to Ca for Xmas and had been there also in July but it does cost a lot to go so we go only when Gary can arrange a business trip out there.It has just been a load on my mind sice the ONCs up here said what they did. Our Onc and our surgeon never were anything but upbeat. Just worried but i will count my blessings that Gary is fine so far. Again I am so sorry about your sister she went through so much to fight the fight. I read your profile and saw that the ins co denied the scan. How dare they. Thank goodness she was given one by her doctor anyway. She had a one of a kind doctor not many would do that. I do know that the cancer center we go to does have a fund to do the samething. Thank you for caring. Lorrie

Thanks Bobby and I am so sorry about your sister. I just feel like I am going thru what my Mom when thru. My Dad was diag with LC at the same as as my husband was 3 years ago but my dad died 9 mos later and that was over 33 years ago plus my dad was a smoker which my husband is not.I am just so afraid and it is so hard to talk to my family members since we are a smal group. My brother and my brother in law both have wives with breast cancer and my cousin who is very close to me her husband had colon cancer and they were feeling great after 3 years went by only to find out that he had LC small cell so we all have our problems and I don't want to add to their problems. Our daughter thinks all is fine since she cannot deal with what might happen to her dad plus she has her three children and husband to take care of.Just before Gary was diag we had moved from CA where we had lived over 25 years to FL for a job transfer and we like I said now live in NC gary still working for the same co long distance. I am feeling homesick for CA as is Gary. Our daughter and her family still live in CA but our other family members live up and down the east coast. It just has been one of those days that I just had to check into this board. Thanks for letting me vent. Lorrie

Gary has been a LC survivor for over three years but in the last few months I feel like I am waiting for the other shoe to drop. It might be because he is going for his scans every 6 mos now and the 3 mos seemed so much safer.Gay's B day was yesterday and all I could think was will he be here next year? We have also moved to NC from FL but will still be seeing his wonderful ONC. We did get a backup ONC here and after interviewing several all we heard was "we have never seen anyone survive what you had" That rocked my world? We go to Fl in Nov for his 6 mos scans and I will talk to his ONC about that staement then. I hate this feeling of doom. Lorrie

Sue all doctors are different. My Cousin's husband was Diag with colon cancer 4 years ago and when he was doing OK and they did a colonoscopys every 6 months. Last year he came down with a cough and then was given a ct scan. He has LC plus cancer and cancer in the spine.When Gary came down with LC and after the surgery and chemo he had started the scans I asked her why her huusband didn't have any scans ? She said the surgeon didn't reccomend them but he akso was not seeing an ONC. To me an ONC is the main doctor who reccomends a surgeon, gives you pros and cons of chemo and sets up the tests. So far he has been our life line. Lorrie

Hi Judy Thanks so much and you bet we will be there every 6 months. Really more like three since Gary still will go down every few months at the main office for work and we are still keeping all our doctors since Aetna does not have a net work in NC. A few doctors in NC accepr it but they are nothing to wrte home about.

We went to the ONC before going home to NC and he said NED infact he said Gary's Lungs looked so much better. He also said we are on the 6 mos plan so I guess putting him on 3 months for almost three years and then on 4 mos was to see if 6 mos was oK. After almost three years of every three mos scans and the one month of 4 mos scans plus thet PET/CT scan showed him Gary was ready for every 6 mos. So happy. Now I can worry about it being to long of a wait. But that is just me I always have to worry about something.

When He first gave us the script and after looking at iit all we saw was th CT/PET scan. Three months ago he had hsi PET scan as all was wel. The one who puts down the scrips and the time only sa that also. She is the one who called us a few wels ago and said she made a mistake and ONC said he wanted a CT scan also.. The only thing it night be is he hadn't had a cT scan for several months. I really don't know and tomorrow he gives us the results. Also a year ago he had colts in his lung and when we saw him last time His ankle was swolen and red and hot matbe even though it is ok now so it if it was a clot which I am sure it was even though his inr was in rage he might want to see if it traveled?

Gary has always had scans but neve ar Pt/CAT scan as well as a CT scan.hhat just threw me. I feel that Gary had asked shouldn't he be every 6 mos now so his onc put him on 4 mos and then added the PET/ Ct scan .all of his tests since 06 has been ned. The move was a +for us us and he is lucky that he has a job were he can work anwhere. Yes we hate the 11 hr trip but have been doing it more since we sold the house in FL. Every 10 days just to have the place spotless for the new owners and going back to NC to fix up our place. Fl is such a long state isn't it?

We asked for the stage and the prognosis when we first found out. The first sureon said we don't think we can do the surgery and to get his affairs in order. On our way home I told gary we need to see an ONC and go from there. He quided us to Moffitt and surgey was a go no problem. I kept on asking what stage he was and they said they didn't now. After the surgery they told us they staged his 10 cm tumor and he was a 1b. So sometimes they just don't know the prognosis as the first surgeon clearly didn't and sometime the stage is unknown until after the surgery. My cousins husband had colon cancer 4 years ago he went to Sloan and no chemo btw. A year ago he developed a cough and the cancer spread to the lung and spine. He does not want to know the prognosis. Thank God he is in remission now.

God bless this board. Gary was tol by the surgeoon that it was up to him to do chemo. We then went to our ONC and he told us the pros of chemo. It is not preety going through chemo but we think it was worth it. Believe me you are not comimg across overly opinionated . I am also on an other cancer board and after this woman had her surgery I think in 04 her surgeon said they got it all and no mention of Chemo. She died a few monyhs ago. Not to say this couldn't happen to Gary for you never know cancer does what it wants to do but we are worried since we moved last month to NC from FL and we would have to come to FL for treatment even surgery. Atna does not have a net work in NC only in the county we live in and I would never have Gary go there. Duke is another alterrnated but we would have to pay a lot more since we would be going out of network. He could do medicare in a few months but he doesn't want to do that since I will not be covered by medicare. I wil be in two years so in 18 mos I can go on cobra and he could dropped his works ins and go for medicare or cooud keep both. any things to think about. I just want to get trough Fri.

Thank you so much for your encouragement. We will ask for as many scans as we can.We were so surprised that our ins co gave the ok for the CT and the CT/PET scan.I just wonder why at the three year mark this is being offered to us? I am so sorry for your loss.

Thank you but Gary has been NED since 2006 and that is what threw me.

Judy that is what we are saying to our selves . The tests will pick up something that the CT or PET doesn't pick up. Gary had theCT/PET scan today and the CT tomorrow and we see the ONC friday. He was supposed to have the plain CT scan on monday but he got there at 930 and they said he was late. Today he spoke to the lady who told him to come at 930 and she was so upset. She said that she told them they are coming from NC (we just moved from fL to NC) and they should have takem him. The group has a lot of new people so I hope the CT scan has been read by FRI since we have to go back home. His ONC has always watched him closely and he is also in charge of Gary's coumadin and his iNR levels. We can do that testing in NC since they have a quest lab and they call our ONC with the results. You never get use to the anticipation when you go for the test results do you?

We had thought it would be every 6 mos for 2 years and then once a year after the 5th year. I quess we will find out Fri. What worries me is that a few mos ago we moved to NC but we are still and will still the same ONC so 6 mos would have been better travel wise. It is an 11 hour drive to FL. I did tell my husband that if they find anything it has been only 4 mos since is last scan so maybe it is for the best.

Four months ago Gary had his pet scan and blood work and all was ned. The ONC said he would see him in 4 mos not three and he would be given a CT scan and then a CT/PET scan.The 4 mos is here and I am worried why all the scans since his last scan was ned as was his blood work. Any answers?

My husband two years after his upper right lung was removed developed shortness of breath not the usual asthma that he has had all his life. His pulmonary doc for a month insisted it was asthma. The doctors nurse when Gary wanted to see the doctor for the 4th time in 6 weeks heard how bad he sounded. The doctor then said what we already knew that it was not asthma and sent him to the er. It turned out he had many clots in both lungs. He has been on coumadin for 1 year and his inr is within a normal range. They do not know what caused it. Lorrie

Bruce I agree with Alisa. Gary had his surgery in 2005 and given the choice of chemo after surgery even though the surgeon said they got it all but he also said you can never be 100% sure. Gary was 2b only because the tumor was about 10cm th size of a tennis ball. We have never regretted getting that added insurance.

I want to thank all of you for your prayers. Gary's Pet scan came back NED and the CT angeogram showed that his clots are going away. We are on our way to CA in a few hours but I had to let all you wonderful people know. Lorrie

Hey kasey thank you so I am not alone about the what ifs.Gary feels well and trying to lose some more weight.Gary lost his hair from chemo and it grew back even thicker now the poor guy's hair is thinning because of the coumadin.That is one of the side effects so his great head of hair his pride and joy since his dad and bro's hair have always been thin is not to be bragged about anymore.Gary does look sexy with a bald head though.Perfect shape head. Thank you and I hope you are well. Lorrie

Thank you so much for the support.I really am in a bad place now but have to put on a happy face for Gary. He works so hard but I see his worry also.If the emboulisiums never happened we might be better but what ifs are just that.It did happen and deal with it.We just need our family and friends but that is another what if. Why did we move and leave everyone behind. What if we had stayed in CA.The what if to that one could be Gary might not have known that he had cancer.We had a great family doctor but with Gary''s history of Asthma maybe an ray would not have been given. Thankyou for your prayers. Lorrie

Gary will be having his three month scans. July 3rd one test a PET scan for any new cancer and a CT angeogram to see if his embolisiums in both lungs are going away . Our ONC took over his blood work every week for that to test his INR levels and adjust his coumadin med.They still have no idea why he developed the emolisiums and I wish they had. That would put our mind at ease since one reason could be cancer and the cancer breaking off and going into the lungs causing the embolisiums but when Gary developed this he also had a three month visit and the X ray was ned. We will be seeing the doctor for results on the 10th and on the 11th we leave for CA to see the grand kids.I hate doing it this way but would have rather gone to CA before the tests like we have been doing.I just feel so down today with worry after two years you would think it would get better but it hasn't. We would love to get out of FL I feel so alone here but hate to leave Gary's doctors.We want to go home to CA but it is not meant to be.Sorry for the vent but please pray for great results. Lorrie

Thank you all for your input it is just so fustrating not to know. It just started so fast one min Gary was great and the next he was having magor problems breathing and every doctor said asthma unill a little over a week ago.His PT/INR was finally at a great level until the nurse took it this morning and it is a tad to low.They called the doctor on call since all of our doctoes are off for the holiday and he uped his coumidan dose. The nurse will come again tomorrow and Sunday to check it.For once I can hardly wait to see the ONC on TUES to ask a bunch of questions.Thank you all again. Lorrie

For 6 weeks Gary has had major breathing problems and it was a sudden onset. We went to our GP and pulmonary doc and they both said asthma since the pollen is so high. Gary went back to the pulmonary doc last Tues and after a few tests he said this was not asthma. So we went for a CT angeogram and it showed many small embolisms in both lungs plus a larger one in the pulmonary artery so he was admitted to the hospital. They where giving him a shot of lovenox in his belly everyday plus a 10 mg coumadin pill at night. They do not know where they are coming from. He came home Sat and on Sunday he was so sick vomiting,the runs and confusion. The home nurs came when this all started and she took his PT/INR levels and the INR was way to high 3.5. She said this was a side effect of the drugs and stopped them.He is now on one coumadin 2.5 a day and his INR is good at 2.3.Our ONC called us late tues night after looking at the Xray that Gary also had taken for his three month check up next week to warn us of the embolisms and we told him that he was taken care of (what a great ONC we have).Since they do not know what is causing this and they ruled out the legs could it be cancer breaking up as clots??????? I read that could happen.Has anyone else had this happen? Lorrie

Such great news. Your story reminds me of my husbands.Don't forget Chemo is a great preventive. Lorrie