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jaminkw

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Posts posted by jaminkw

  1. Did it again! I got so frustrated last night because I'm still learning to navigate this site and lost the first post to replies to my post and then did something wrong again and didn't get confirmation that my second one went through. Was happy this morning to learn it did. Then I started a posit this morning and somehow in "view your post" wiped that out. Here I go again! Thanks everyone for your feedback.

    A special thanks to Nova. I heard about that program somewhere and then forgot about it. We certainly have paid out more than $1200 this month just paying the minimum on my bills and they keep coming in, each with its own "minimum due." My dilemna has been that we are middle class which made me think we didn't qualify for anything. That is proving to be wrong with at least one of the prescription return programs MDACC applied to for me. If anyone is in my shoes, don't leave any stone unturned. I've applied for federal disability, however, and the federal government tried to make me think I had to take early retirement and I don't want to do that yet. My chemo brain didn't click in until the eleventh hour but I was able to withdraw that application the did "for me." Also, I read in a ACS handbook about finances that you have to be careful with the Medicare programs because sometimes they don't pay well and can make you ineligible for other more beneficial programs. It's a maze but I feel so much better able to deal with it today so I'll check it out. Initially, I didn't think this website was going to work for me but I've changed my view on that!

  2. Thanks for the feedback. I know I've been really worried about finances but it's more than that. I just found out yesterday that I am getting help with at least one prescription replacement program with the possibility of more and I was grateful and thrilled. But I still have a nagging fear. Dr West said some positive things like a better survival rate for chest cancers like mine and that slower, less bulky cancers like mine tend to be associated with a more favorable prognosis. My doctors also point out that because I had one large infusion in Sep with no recurrance of fluid, I am healthy and I have (had?)a positive attitude suggests a positive outcome. Still my CT scan after two infusions showed no change. The doctor was happy with "stable" but I was not. And they scheduled six more chemos after completion of the four scheduled originally. That makes ten! A fast third infusion made my recovery much longer than anticipated by the first two, and then I got a sinus issue with excruciating headaches. All seem to have combined into a real dampening of my optomism. I keep focusing now on Dr West telling me to look for trials for "advanced" NSCLC and that they are "second line" treatments with a usual requirement of a measurable disease that has progressed. I don't even want to go there. I hope I never qualify but there are no guarantees. Thanks for letting me talk this out. I realize now I never told my oncologist how disappointed I was with the "stable" result or the scheduling of 6 more chemos when I expected 2. I'll see her next week and tell her. I feel better already.

    Judy

    [/b]

  3. I have always been a positive upbeat person. When I went to MD Anderson for the final diagnosis of my cancer--IIIB lung cancer (adenocarcinoma)I was initially stunned and disolved briefly into tears. I went back in positive mode. Although doctors and other medical staff, family and friends complimented me on my positive attitude, it was really easy: I didn't feel like I had cancer, let alone advanced stage. It took three chemos, a bad response to the third and facing the mounting medical bills to bring me to my knees. I've been on a roller coaster since learning that even if you get approved for disability, you are not eligible for medicare for 24 months AFTER the approval. About the same time, we requested and got the itemized bill for my chemo sessions, almost $27,000 for pharmcls for each not counting whatever the hospital charges for the room and nurse. We have no insurance and are not poor enough for government "entitlements." We already paid a slew of medical bills including the hospitalization that lead to the discovery of my cancer and are quickly draining our emergency fund. I should feel better now because we are beginning to see the posibility of some little financial relief but these past few weeks have left me physically spent and emotionally unable to hold on to my previous optomism. I found the buddy forum and will try to get it together and post more specifics about my cancer there.

  4. So sorry to hear your cancer is back. You must have been devasted with the news. It has to be hard to get back on top of it when you thought you had it licked.

    I'm new to cancer and this site and don't have the faintest idea what a "cyberknife" is. I do have to agree though with Don M. I would certainly endorse the Swedish Cancer Institute if Dr West is an example of the people who give care there. I have corresponded with him a couple of times recently and think he's awesome.

  5. Thanks Treebywater and especially you, Ned. No I hadn't figured it out. I put one line in and then looked to see if it "took" on previous posts. It didn't and I got distracted from the task. With your much appreciated step-by-step, it sounds like a snap. Of course, the day is nearly gone and I'll be busy this evening so I get to put it off a little while longer.

  6. Ghita: I'm new too, joined Dec 28, 2007. After smoking for 34 years and quitting about ten years ago, I slipped the noose on the smokers stigma. I can still remember my relief that followed on the heels of the shock after learning that they found cancer cells in the fluid drained from my lung after a Sep 20 hospitalization. The doctor assured me I had adenocarcinoma and, he said, it is not "smokers cancer." I remember thinking, "thank God I didn't do it to myself." I can't imagine the additional struggle your husband and others in that situation have since I already feel so badly for my family who have to go through this ordeal with me. Keep reminding your husband that self-blame is not an appropriate response to cancer. I'm sure he appreciates hearing it.

  7. I joined the site on Dec 28 and am still feeling my way through the forums and the format--how to post, respond to post, send private email, etc. but this has been an amazingly helpful experience. The next thing I am going to attempt is listing the essentials of my diagnosis and treatment experience. It's just a matter of DOING IT but I think I'm leery of reliving it all. I have a day to myself so I will attempt to find out where/how to do it and DO IT today. I am so glad someone on the ACS site referred me here. The fact that the ACS site posts under the topic "Lung Cancer" are so dated is probably a testment to the usefulness of this site for people who have or know and love people who have lung cancer. Thanks all who have responded to me in posts or private emails.

  8. Sally, I'm newer here even than you. Just joined a couple of days ago. I was browsing the LC Survivor board and happened to open your early Dec post. It happens to be a day I was really feeling sorry for myself but your post turned that around. I read through all the replies and was rewarded by your later post. Christmas and especially the tree is very important to me as well. I have ornaments collected and treasured for what seems like forever and my husband helped make sure it happened. So glad your guys came through. I know you said you were having another treatment on Dec 27th so I hope you are feeling reasonably well today, New Year's Eve.

  9. I'm with you Max. I've gone along with the doctors because I trust them explicitly but I had to have a chemo experience gone bad to trigger what I have been accused is a need to control everything. Well, my second chemo nurse who was amazing was already reminding me to educate myself (and she helped greatly with that) and take charge of my cancer. I'm ready now.

  10. Thanks for the encouragement. I have always been a positive optomistic person but am so disappointed with myself right now. After dissolving in a puddle when I was diagnosed with IIIB LC when I was sure I was early stage because I was so healthy, I bounced back and responded amazingly well to the first two infusions. Then I got a nurse who decided to cut my infusion time in half and the recovery has been awful. Two weeks into it and a week until next infusion and I feel a shadow of myself--physically spent and emotionally on the edge. In fact, I am going to go take an Ativan right now! I know I will bounce back. I've lived through a hell of a lot of adversity in my life and I'll live through this.

  11. Don,

    Sounds like you have had a really rough time for a long time. I am so sorry for your struggle.

    Dr West said he didn't have much to add. He presumed I have some pleural-based nodules (I do). He said sometimes they see very little tumor bulk but a documented malignant pleural effusion (I'm not completely alone) and convention is to treat it like NSCLC with the most aggressive approach being what MD Anderson is doing with me (I have never questioned my oncologist but it's nice to hear a 2nd to what she's doing). The interesting thing he added was that over the next couple of years he expects they will break up advanced NSCLC into "chest only" disease like mine and advanced disease with spread to the liver, bones, brain, etc. He also said that the overall survival is much more favorable with disease limited to the chest only. He words were comforting. I certainly didn't feel like advanced anything cancer before the diagnosis and even though I have generally been handling chemo well, the fatigue has left me feeling not the person I was before the effusion. I get really scared.

  12. Val: You are the first person I've encountered who sounds like she has a situation similar to mine. When you had the effusion and they found cancer cells in the fluid, was it identified. Mine was adenocarcinoma. Also, did they find a tumor? If not, how did they explain the fluid. They have scanned me head to toe and have not found a primary tumor which they say usually triggers the effusion. I'm inoperable as well and am doing a three cocktail chemo treatment. How about you. I have not asked the "cureable" question but it seems now like I don't want to hear the answer. Not the managing the cancer isn't better than the alternative. I'm really interested in continue to talk with you.

  13. Thank you for your good wishes. I am so sorry your husband lost his battle but I am impressed that you are still on this site offering support to others fighting their own battles with cancer. I have a wonderful oncologist with whom I should be addressing this. Somehow no matter how much time she spends with us (myself and my husband and sometimes my RN daughter), I'm still left wondering because I haven't asked the critical question: Is this cureable. Maybe I don't want the answer or maybe the reactions of all the physicians I've seen tell me they really don't know in my case.

    Thanks again. I will try the website you suggested

  14. I was hospitalized locally for a complete white out of the left lung. They found cancer cells in the fluid removed from my lung and I eventually got to MD Anderson and received a diagnosis of IIIB lung cancer through further analysis of the fluid since the Chest Xrays, CT scans, CT/PET, and MRI show no tumor. The only thing they see are nodules here and there that may be something or nothing, a thickening of the pleura (the space between the chest wall and the lung which is said to be malignant) in the area of the lower lung where the fluid had been. I don't ask questions about "cure" but the doctors seem optomistic that I will "respond well to the chemotherapy treatments" I am getting. I haven't encountered anyone else with my particular situation even after going thru a dozen pages of posts on the Cancer Society lung cancer message board. It is also unique in that a tumor usually triggers the fluid and once it does and they drain off the fluid, the pleural effusions usually continue to recur in short order. Two liters of fluid were removed from my lung in September and (knock wood) the fluid has not come back. The doctors still don't know why I threw the effusion or why it hasn't recurred. Anybody know anything about this type of cancer?

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