Elaine

Nell, I am so very sorry about Bob. I did see this one day when we had to drive back here for a day to feed the cats, but I had no emotional energy--only tears. You have been a special friend to Bob and his family and to many of us here as well. May you receive a bounty of blessings. I hope Jo is doing well and that all of you--family and friends, are finding comfort in memories of good times. We live on in the hearts of others, little heavens on earth. love and fortitude elaine

Oh, this is really shi##y, huh? None of it makes sense to me either.... Without going into all the details of what has been going on with me, I can say this. Thurs my pulmo keep looking thumbing through copies of my scan reports, talking to himself, scratcing his head and saying-"Maybe there's something going on in there that we just aren't SEEING!!!!" --Empahasis mine! Then before I could quiz him on that comment, he up and leaves! So, I guess there ARE things they can't see. But something that is blocking 80 per cent of your trachea??? I don't buy that, Frank. I am from Missouri (the show-me state) so I would be asking for them to SHOW me the scan. But, I guess they think it doesn't make that much difference--but it DOES. I recently had the laser thingie, and I guess the the only real thing to worry about is excessive bleeding, from what they told me. Keep us posted and keep those spirits high. I am sure praying for you Frank--. love and fortitude elaine

Bill, I am so sorry to read the news about your wife. I know there are miracles and I pray one is headed your way. As for Tarceva-- get the thirty days supply (or more if you can) before signing up for Hospice (if that is what you decide to do). The Tarceva is to be paid from your health provider under separate terms from hospice care. Hospice pays for pain meds and other palliative meds as others have said. If Tarceva works then you can always leave hospice care IF the insurance company won't let you have hospice AND Tarceva--but IF you need both then fight for both...but you can always go in and out of hospice care. There's way around nearly everything. Well, that's an idea anyway.... When my dad was in hospice they wouldn't let him have antibiotics (as in they wouldn't pay for them, so I just went and go a RX and paid for it myself... but Tarceva costs a bundle more than an antibiotic.) I guess my point is...they cant stop you from taking any meds--they can only say they won't pay for the meds.... (It has to do with the contracts that hospice has with the provider... so if you have private provider it may be easier than medicare.) My dad had medicare and under that contract, the hospice got a flat apx 100 dollars a day (in 1996) to "care" for my dad, which included providing meds for palliation. I am rambling, but I think there is a way to get Tarceva in any case. love and fortitude elaine

I am so sorry that I haven't posted. So many things have happened and I am under a lot of stress. I sure wish I was moving but my husband's job didn't work out--long story--I am really worried about him. I was also worried while he was there working 18 plus hours a day in very cold weather--missing Christmas and New Years because the plant was a peice of doo-doo, lol. Chances are the place won't be able to stay afloat anyway, so maybe it's best in the long run... but that doesn't make us feel all that great now. I will post an update on all the myriads of medical stuff that has happened with me--my mind is reeling with all of the unknowns on that front. The other thing that happened is that we nearly lost our 24 year old son to a serious reaction to ZPack, an antibiotic. He was hospitalized for 10 days with what is thought to be Stephens-Johnson Syndrome--never heard of it till now, but it is nasty. He lives in another state and we were fortunate to be able to be with him. The good thing about that is that he had wonderful teams of Doctors, I mean teams and teams of Drs--from every specialty there is--and since it was a teaching hospital, all the Drs had what I called a group of travelling shadows. They took pictures and pictures for some kind of teaching thing--not sure what, a textbook or article or something (I wasn't there when the photographer came by)-- so my son's privates will be on display, lol--along with his eyes, mouth, and whatever picutures they have of his "innards", all of which were covered with blisters. Talk about pain... Well that's the short story of where I have been. Turned out long.... I have also been numbed with grief from all of the bad news on here lately. I know there is also good news, but for some reason, my thoughts always wander to those of you who are in need, now. My dear Addie and Justa and Bill's dear wife and Angie's Dad and David C and Randired's mother. I love you all so much, and my prayers are sent for you and all your loved ones each morning and night. love and fortitude elaine

Beth, Thinking of you as you start your treatment. May it be kind to you. elaine

I researched adrenal mets some months ago. From my understanding, adrenal mets are most commonly unsymptomatic unless they are large AND are effecting both adrenals. I am not a Doctor, so you might want to ask in the "Experts" forum. I think it is probably good news that you haven't heard from your Dr. BUT, you might want to call, anyway. I have a wonderful Dr now, who calls me personally, even when the news is good! I wish all Doctors did that. elaine

Prayers for good news and that time travels fast until you get it! elaine

Welcome back! I am sorry about the recent new mets, but glad to hear there's a plan. elaine

Beth I am glad to hear you are in the fighting mode. We are all behind you and no one is giving up on you, either. love and fortitude elaien

Hi Greg You would be crazy NOT to be scared! My husband is scared out of his mind ( and so am I, but don't tell anyone!). Hang on to each other. love and fortitude elaine

You rock!! I mean it! You rock! elaine

Oh my God, Addie, Addie. Get those boxing gloves on, my friend. I am running out of words to convey all these emotions we are all feeling. But I am standing in your corner with the rest of your friends and family. Okay maybe I will be sitting in your corner after my legs give out. But I am sending you all kinds of power to beat s the holy you know what out of the damned intruder. It doesnt' stand a chance of winning. It doesn't. So much love and fortitude elaine How in the heck did it not show up on CT scans??? I don't understand. So much I don't understand that it pisses me off even more.

Cathy I am soooo happy to hear this! Keep us posted. elaine

Lily, Sending you and Johnny's family lots of prayers and postitive thoughts. elaine

Lily, Sending you and Johnny's family lots of prayers and postitive thoughts. elaine

Lily, Sending you and Johnny's family lots of prayers and postitive thoughts. elaine

Oh Beth, I just pray that the nodules are from your recent infection. love and lots of fortitude, elaine

karen Extra prayers for you -- prayers for the waiting and prayers for the best results. elaine

Nell Wishing you had better news but I am glad it's all out in the open now. Praying for comfort and peace for you all. elaine

I am so sorry. Your sister fought so hard. I hope you find comfort knowing she lives on in the memories of those who love her. elaine

I am sad to have to welcome you to this site because I know that you would rather not have to be here anymore than any of us do. We have an "Ask the Experts" forum on this board--just click on the black rectangle near the middle top of the screen and it will take you there. Pls ask your questions there about the CAT Scans not showing the cancer. They will surely give you an answer that might be helpful. I wish you both the best. elaine

Margaret, May sweet memories comfort you and your family. I am so sorry. love and fortitude elaine

Peggy, I really don't have a clue, but urge you and hubby to get it checked out. The bilateral leg pain I referred to in an earlier post really isn't a cramping kind of pain--at least it's not the pain I have, but from my understanding the pain presents itself somewhat differently in different patients. But I have never read of it as being described as "cramping", so.... Mine is a burning pain and very little swelling. Angie's Dad has it and he had a lot of swelling. It also causes arthritis like pains in surrounding joints, in my case, the knees mostly. Love and extra fortitude elaine

The reason I said such a "scary" thing is that too many people on this board have went undiagnosed for many, many, many months and sometimes years because too many Drs do not know what few physical signs there are to LC, including myself who had these symptoms for nearly two years before dx. One of my dearest friends from this board had clubbing for many many months and only lived about 8 months from DX. It is an important sign. I also was told I had nueritis of unknown origin; r I was told I had vasculitis, arthritis, you name it. Clubbing, without cynosis, is not indicitive of heart disease, for the most part, not always, of course. I told her about the clubbing to help reassure her. Now, here is where I went wrong. I should have looked back at her previous post before responding, because now I see that she has pain in only one leg. The condition I talked about is almost always bilateral, but again, not always. Like I said in my earlier post, Barb, I am not trying to scare you, but wiser minds than I have said on the board, KNOWLEDGE is POWER. Like most pains, if they don't go away within time, insist on seeing a specialist. elaine

What kind of pain are you having? Is it a burning pain? Any swelling? Have they done a bone scan? The reason I ask is that I ha ve a paraneoplastic syndrome called Hypertrophic Pulmonary Osteoarthropy that is present in about 12 per cent of NSCLC patients--and is usually cured if there is no cancer present. It can indicate a return of cancer also. I am not trying to scare you, but you do need to know this. My pain is mostly in my shins and knees--well, it's the most painful there. If your fingers are not clubbed, then you probably don't have that. A bone scan will tell for sure. elaine