kathytoma

My prayers go out to your family, 37 is the age of my son, so my hearts breaks for you, keep the faith and stay positive. Research if you must, I think most of us have, just so we get a grip on what to ask and what to look for. We got a report and cd on all test, just tell them you need them, we also had no problem with that. I also made a bible and it has come in handy, because a lot of time you cannot remember dates and times of when things happen. My husband is stage 4 and everything only showed 1 tumor but after surgery there were 2, one covered the other. It did not make any difference in our case. His biopsy was done as an out patient and we were told the results the following week, once the path results were done. The waiting game is hard and can weigh on you but just keep the faith, God will prevail. Kathy

I am so sorry for your loss and may God watch over you and your family. My prayers are with your family tonight. Kathy

I know what you are going through and my prayers are with you and your family. God will help you each step of the way. I am so sorry for your losses. Take Care-Kathy

My husband is on Tarceva-cost is $4000 but we only pay $200 here in Memphis. Avastin-2 treatments each costing $29,000 per-I thought he would pass out when he saw that. Thank you God for insurance. Kathy

Agree with everything Ry said. My husband dx 2006 and then went back to work, wanted too but then recurrence Aug. 07, so then he could not anymore. He was the principal bread winner but I work also. We applied for ss disability in Sept. 07 and it started in Dec. 07 with back pay, thank you Lord Jesus. Yes, our income is way less but we do not do all the extras that we used to do, so it all balances out. My work is wonderful, because I have flexible hours and can work from home when I need to be here for him. He was just 2 years short(20 yrs. service) of his full retirement benefits, so he went ahead and retired, less benefit but it helps. We are just enjoying our time together, even though he is not doing well, we still have a good time. Sorry I rambled but stay home with your kids and enjoy every minute you have, because none of us know what tomorrow will bring. Kathy

My husband had a pump from October through January 08, it was dilaudid and it kept him pretty doped. When we switched onc. they said it needed to be removed if he wanted quality of life for whatever time he has left. They also put us with a new pain management Dr. and he also said we needed to reduce the methadone and take away the pump. His pain is so bad but he did not like not being in the real world. Our new pain Dr. has him on Marinol, 1 to 2 every 3 hrs and you know it is working better than the other stuff did and is not so toxic as the others. He still takes methadone, but maybe only 3-4 pills during a 24 hour period, so he is alert now but he still has pain. He is on a fentanyl patch (75)and he has lollipops(fentanyl 600mg) for break through pain, they work for him. He does get some relief during the early morning but I tease him about the afternoons. About 3 pm each day he goes down hill, the pain is worse so he just takes an extra marinol, all it does is make him sleepy. The stats say he has about 6 more months, but we do not pay any attention to that, we just trust and put our faith in God, he is the only one making that call. He also is very weak and is down from 210 to 180 but he is a trouper. We try to keep about 2500 calories a day in him because the cancer eats your nutrients. They do want to place a pump like an epidural in his spine to see if that will give him some relief and we are waiting on all that to be arranged. They said it could not hurt to try. Just stay strong, it is journey. Kathy

So sorry for your loss, May God be with you and your family. Kathy[/i]

Welcome again, Take care of your Bill and I really missed you on the other site but glad you are here. Kathy

Hello-Barbara Everyone is looking for you on the other site and wondering"where is Barbara Ellen". I do not write much but I have been on both sites since Nov. 2006 and I read everyday. You are always an inspiration for me, when I get low because you two have been where we have been. Welcome-Kathy Toma (sktoma)

I know all people are different but my husband had 6 chemos and 37 radiation treatments, began Sept. 2006 and ended the first week of November 2006. They were trying to make him a surgical cand. Stg. 3b with lymph nodes involved. Our surgeon got him in surgery on the Monday after Thanksgiving (2006), he said the sooner the better and that was after we had gotten 2 other opinions, so it was a go. It all happened so fast and our onc. was not involved in this decision, he wanted us to wait until late January 2007. All 3 surgeons said no way, since they do this everyday. It makes the surgery harder and more complicated the longer you wait after treatment, so we were told. We were ned until August 2007, when he had a pleural effusion and the cancer is back. We are fighting everyday of our lives with this demon, and have been told all the stats, but God is the only one who knows when your journey is over. We were told in January 2008 that we have maybe 6 more months but we are kicking this demon. Joe is on Tarceva now and we will see how that is doing in April. Take care and God Bless-Kathy

Hello, Mary Watch for dehydration, it can come on fast and causes many things to go wrong. I watched and checked Joe's urine and sort of kept up with it on a daily basis. I could tell he was not getting enough fluids. After his last chemo we still had about 10 more radiation treatments and Joe told his radiologist, if he had to he would complete them all, even if it is on a stretcher. Well, guess what, he got so sick and weak and then started having heart problems so at the radiation office they admitted him to the hospital. Thank God for them and our heart Drs. He was on the verge of a stroke or a heart attack. So he got his wish, his last treatments were on a stretcher from the hospital to the radiation center everyday until he completed them all. I understand what you mean about how much do you ask them about how they feel, without being controlling, it is a hard balancing act. Joe finally listened to me when I would say something is just not normal, let me call and ask and that will ease both of our minds. It was a scary lesson but we both have learned how to deal with it and now any time I become uncomfortable, Joe will listen to what I recommend. He realized sometime his judgement was not very good and his pride would get in the way of his well being. I am so sorry that you are having to go through all of this and just know God will guide you each step of the way. Like, Connie said, Joe and I did the same thing, "Let's go beat this and beat this we will as long as we stay positive and connected to what is important." Our family was and is our greatest support team and we could not have made this journey without them. Take care and Stay positive. Always-Kathy

Follow everything Connie has said, you need more information, stage,type etc. I will tell you, you will need a pulmon. so you may want to change before you get to far into the program. I would not go back to the back bedside mannered one, just my opinion. Been there, done that, you know. If you like your onc. group ask them who they recommend, they may work with a group closely. Take care and stay positive and I will send prayers up for you. Kathy

Snappy: When Joe's esoph. was attacked and believe me it was, nothing worked for him, even the shizzle stuff but he knew he had to do the best he could. So he managed for 3 months on chicken noodle soup, ice cream sherbert, and milk shakes. He had about 20 lbs. that he could lose, and he lost a total of of about 25 so that was good. When he could eat again, he did and the weigh came back fast. I know everyone says to drink, drink, drink but Joe could not even get a drip of water or soda down. If he tried it would take him an hour or more and then he just gave up. It is easy to say but hard to do, and Joe has a strong mind but that was tough. I would take him an hour to eat a can of soup and I had to keep reheating it every 10 mins. but we made it. Take care-Kathy

I just read your post, God Bless Girlfriend, So happy for you and your family. Always-Kathy T.

Snappy, I think we have connected because our husbands are Joes. We are both 59 soon to be 60 and have been married 13 years, we grew up together and reconnected a few time over our life's but we both had so much baggage that God waited until the time was right to put us together to grow old together. So much for my fairy tale marriage. Joe was dx in July 2006, stage 3b and lymph nodes. We did 6 chemo and 37 radiation all at the same time, they put us through aggressive treatment to try to make him a surgical candidate, and yes they did. So surgery, lobectomy in Nov. 2006 and we did ok with that and we were ned until August 2007 and he had a pleural effusion and the cancer was bad. It was not our onc. that said we needed to do surgery asap, it was our radiation Dr. and surgeon, they said we cannot wait. So we did it after 3 other opinions confirmed what they were telling us. Our Onc. Dr. wanted us to wait until Jan. and all 3 surgeons said no, it makes surgery to dangerous to wait because of the damage radiation does to the chest cavity. So until we went to our onc. Dr. in January he did not even know we had had surgery, so he was very surprised. Had we done what our onc. Dr. had said, surgery would not have been done and Joe's chances of survival were better with surgery, so we did the surgery. After our recurrence we had 2 more powerful combination chemo-cisp/taxol/avastin and Joe was down hill after the first one, when the shingles broke out in his chest cavity, the second chemo put him in the hospital, I almost lost him then. I tell you all of this for a reason, I am very pro-active and have many opinions on my husbands care. Like your Joe, my Joe had never taken one pill and was healthy except yes, he smoked. We had a full and active life and we both have never been sick. It was very difficult for Joe to take all the pills for whatever was happening but once he got past it, he was ok with it and knew he would have to do some in order to get better. During all this time we had to deal with his heart that was effected by the lc and we had to switch heart groups twice to find the ones that would help us. We finally have a group that work with us, not against us. His heart is fine now thanks to their caring medical team. I have had to fight with our onc. group every step of the way and it was so frustrating, I really do not like to argue with people but when I have had enough, I let lose. We stayed with the group because of their reputation in our city and have many friends who have used them, but for us it has not been always pleasant. So, in January 08 our onc. dr. told us to go home and hospice will be called in. I said what! and he said he may have about 6 months. The only thing he would offer us is more combo chemo, knowing Joe could not tolerate it again. When I tell a Dr. there is something not right about my husband, I mean it. I live with him and know him better than them. I can look at him and notice things that are not right and all I want is someone to listen. I can tell when he is not getting enough oxygen or if he has a fever and you do nothing, except to say it is part of the demon, that is bs, there may always be other medical issue, not just the cancer. Yes, we know all the true facts about lc and the stats but Joe is not ready to quit fighting and hospice was a shocker. He is still mobile, just hurting all the time from the shingles and of course the cancer. So, after we got over the shock, we decided to get a second opinion, knowing we may hear the same. Well, guess what, our new team of onc. are fighters for the patient but also to maintain quality of life while they try to figure out what may work for Joe. He is on Tarceva, thanks to Jamie on this site, who is our friend, who pushed us to ask. We were told he was not a tarceva candidate. I wrote to much but it helped me release. Just remember to be pro-active and always ask questions. Our new Drs. see me with my pad and they ask me what do I need to ask and do we understand everything they have said to us and is there anything that we need to repeat. It is so refreshing and I can also call them 24/7 to a direct cell number if I become panicked at anytime about Joe. We just take each day that has been given to us and we are grateful. Joe is doing just ok and yes, he wishes he felt better but the pain is so tough. We are under a pain mgr. Dr. now through this new group to help us and that has been wonderful. He has had 3 nerve blocks, but they have not helped. We will go next week for ct scan and see where we are, so please pray for us. Sorry I have been so lengthy but I felt your frustration in some matters and wanted you to know you are not alone. Always-Kathy

Driving: I always had someone with my husband, it helped his spirit. He could have driven himself for maybe 2 treatments of chemo but when you do radiation every day that makes it tough. He knew he could not drive anymore and he was ok with that, so after 2 weeks I drove him to radiation every day and then went to work. As you have notice everyone is different but in our case it was not good for chemo or radiation, and he was healthy as a horse before this demon attacked him. So we pulled together as a family and did all we could for him, did he whine, a little, but we told him we are your strength for the time being, since he had also been the strong one, now it was our turn. I always joked with this macho man and said, "let me see your chest, and he would say "what" and I would say let me see and he would open his shirt and I would say"where is the big S" and he said,"What", and I said, " The big S is for superman and right now you cannot be superman, just sit back and enjoy the attention. God love him, he has been wonderful and so strong and continues to be. Take care Snappy, and I will pray for you all, it is a roller coaster, just hold on tight and pray. Kathy

May God watch over you and your family. I am so sorry for your loss. Kathy

Ken-My husband was the same way about all the meds, but now he takes any that will help. He had no problems with the patch, he has used 25, 50 and now is on the 75, so go for it. You will know if you have a side effect, then just pull it off. Take care-Kathy

We had hospice with my mother and it was a godsend for us. I cannot say anything bad, only good from me, they were wonderful helping me to cope with the situation. On the day my mother passed, I called and the nurse was there within 30 minutes and she took care of all the not very pleasant stuff because we sure could not. She made all the arrangements with her Dr. and the funeral home. It was very comforting for me. They also made sure afterwards that if we needed anything, they were there for us. They hold a tree planting event every Spring and a plaque is placed with all the ones that have gone, it was very nice and my mother would have loved it, since she was a gardener. My God bless you and watch over your family as you travel this journey. Blessings-Kathy

So sorry for your loss, may God watch over you each day. I know what you are going through, I lost my mom last Feb. and she lived with us and I took care of her also. I still miss her terribly and I talk to her picture all the time. I lost both my parents 1 year apart, so I never really grieved for my dad, until my mom passed and then I grieved for both, so hard and I still cry all the time for them because I needed them so much this past year but God has given me the strength to carry on the torch as my parents always did in their lives but it still does not make it any easier. I will say a prayer for you and may God be with you. Kathy

So sorry for your losses, those are hard but God will help you through it all. My prayers go out to you and your family. God Bless Kathy

Thanks for replying, it helps to know others go through the same thing. Oh, yes pillows are a godsend and I have a bed elevator, called a genie, that raised our bed and what a savior it was for Joe. We go to the pulm. on Tuesday, maybe he will offer some positive advice other than drugs. Joe says he can tell something is missing in his chest, just like you have a leg amputated. Jamie, thanks for your wonderful kind words, and yes we need to get together. We pray so hard to take his pain away, so maybe soon it will be diminished. Fondly-Kathy

Is that your mother in the picture? She looks so great and I have 2 granddaughters who are the love of my life. Thank you for your thoughts and prayers. Kathy

Hello everyone. This is the first time I have posted a question but I read every ones post daily and it has been such a positive experience for us. My wonderful husband, age 58, Joe, was dx in July 2006 with 3A-aden./lymph nodes and stated not a surgical candidate. He began chemo and radiation combined in August and we finished in late October. We have gone through what most have experienced with all this stuff and it was not easy. But, guess what, after all the treatment, our radiologist made him a surgical candidate, praise the Lord. So on November 27 he had his upper left lobe removed and lymph nodes and with a pet/ct scan in January 24, we are now cancer free, now a survivor. He will have pet/ct every 3 months, so our next one is in April. My question is an easy one. Has anyone out there had chemo/radia. combined, which almost killed him and then surgery? Now that he is ned, which is a blessing and we thank God everyday but the pain from the surgery is so unbearable. It has now been 4 months since surgery and the pain is not any better, a small price to pay, we know but maybe someone has gone through the same thing. Joe does not do pain meds because of the side effects, tried but they really did nothing except causes other problems. The only med Joe takes now is Zanax at night to help him rest and sleep, which is wonderful. He does exercise and stays up all day but the pain stresses him so much during day, when he lays flat the pain is less but we know you cannot lay down all day. He has not been able to go back to his job yet but we hope in April, he is going to try. He has had no symptoms to indicate that something else is going on from the lobectomy but one must wonder. We are still in our planning mode to retire in 4 years. If anyone can comment on the lobectomy pain, I would sure like to hear it. Maybe there is something that worked for you and maybe it will work for him. I have told him that what he has gone through these last 6 months is trauma to the body and it will take maybe another year to recoup from all that was done to his once healthy body. Thank you for listening and I pray for everyone on the website each day. The power of prayer is what got us to where we are now, Thank God for being cancer free. Thanks-Kathy and Joe Toma