Pamela

Don -- I know what you're going through. When the diagnosis is fresh, everything feels overwhelming and it's hard to sort it out. You feel horror, fear, helplessness, more fear. I remember the physical reaction I had to my dad's diagnosis. I couldn't eat or sleep or focus on work or anything else. It was like all the breath had been knocked out of me. And for a few weeks it seemed that all we heard was more bad news. You are doing the right thing by posting here and reading the other posts. It will also help you to do as much research as you can -- on the disease, on treatments, on medications, etc. That will lessen your feelings of helplessness because you'll begin to understand what the doctors are saying and be able to participate fully in your mom's battle. The panic and fear you are feeling now will become manageable as you continue. You will learn to celebrate every small victory and feel hope. Please keep in mind that medical professionals sometimes give you worst case scenario so you won't get your hopes up. Well, get your hopes up anyway! Hope inspires. Hope energizes. Hope gives you the will to keep searching for answers, researching new options, fighting with everything you've got. Your mom may have some trouble hoping by herself, so she will look to you. You're doing a good job. Keep fighting. Everyone here is a resource for you and a fellow warrior. Yours may be one of the wonderful, uplifting stories that someone else will read in the months and years ahead. Pam

Phyllis, I cried when I read your postings. Thank you for sharing your true feelings and allowing this group to join hands and hearts with you. Your anger and frustration and even fear are just a part of fighting. My prayers are with you as you battle on! Pam

I agree with the others. I wonder if the doctor would be so quick to give up on her if it was HIS mother! It never hurts to get a second opinion. At this point it sounds like the doctor and hospice are "guessing" about what's happening to her. There may be things that can be done to buy her time or make her feel better. Good luck! Please keep us informed. Pam

Marie, I am so sorry to hear about your diagnosis. I know it's scary and can feel overwhelming. You're doing the right thing by connecting with this group. You'll be able to ask questions and learn about options. As the others have said, your situation is unique to you. No matter what stage the cancer is in, someone at that stage has survived well beyond expectations. You could be one of the ones that beat the statistics! My Dad is 77 with Stage IV. He has almost died twice -- and the doctors gave up on him. But he's still with us and doing pretty well! My prayers are with you. Be good to yourself. Pam

TBone, I know this is an old posting from you, but I'm trying to catch up on everyone's situation so I've been reading old postings. I thought you could identify with what happened to my dad. He also has brain mets and was given Decadron, but he took 16mg a day for almost 3 months. I noticed that you had trouble at 6mg, so I thought you would understand the significance of Dad's dosage! He was pretty volatile sometimes, and he hardly slept. Worst of all, it deprived him of the use of his legs and arms through myopathy. Like you, Dad had no lung symptoms whatsoever. He was having trouble with balance and nausea. Your postings have been very helpful. Thanks for sharing as you go through this. My prayers are with you. Pam

Lily, I cried as I read your message because I understand. My Dad is in Texas and, thank God, the myoclonus is gone. It's very scary how similar your story is. Dad had also been taking Vicodin; in fact, that was the first med we stopped because he had many of the symptoms of opioid neurotoxicity, which can be a cause of myoclonus. When Dad went into respiratory failure and had to be put on a ventilator, he had just been given Ativan. I don't know about the blood gases because I wasn't there at the time. At this point, he occasionally uses oxygen, but only after exertion. Your story makes me wonder how many others have experienced this and thought it was the cancer. That is such a scary thought, isn't it? You are so right about the meds. That is a message I really would like to spread to everyone being treated for cancer. We didn't know it until it was almost too late for Dad. My brothers and I researched for hours and hours to try to help Dad when he went into delirium (although we didn't know it was delirium when we started). I cannot tell you the horror and fear I felt when I realized what had been done to him. The medications would certainly have killed him if we hadn't gotten there in time. (And we had a nurse visiting him every day who was convinced he was dying and told us we were being cruel not to give Dad more morphine to make it easier and quicker for him to die. We fired her.) It may upset some people, and I certainly hope not, but the hospital where Dad had the most difficulties was M. D. Anderson. The oncologists there have been wonderful. We had trouble when my Dad was transferred to Symptom Control and Palliative Care -- which is not staffed by oncologists -- so they could help him with the steroid myopathy, insomnia (likely caused by Decadron) and residual side effects from radiation. Like with your Johnny, over a 2-week period they had started and stopped so many drugs that we couldn't keep up with it. They sent him home with 12 drugs -- and an untreated lung infection. (When Dad complained that it hurt to breathe, they gave him Vicodin and told him that he had lung cancer so get used to it.) Like you, we have also been stunned at some of the comments made to our Dad. Many times we have had to do damage control after a nurse or doctor stressed, yet again, that he is dying and should just get used to the idea. We are not in denial -- we know how bad Stage IV NSCLC is. We know that it will likely take Dad from us, but it matters WHEN. If he can be around for an extra 6 months, 8 months, a year, 2 years, 3 years -- who knows? -- that's worth a whole lot. Every day matters. And some people actually beat it altogether. It would be a miracle, but he just might be one of those. We have made a commitment to Dad: As long as he wants to fight, we'll fight with everything we've got. When he decides it's time to quit, then we'll be with him through that with the same depth of commitment. My heart aches for your pain. Please don't blame yourself. There is great strength in being part of a team through something like this. (That's the beauty of this group!) If I had been by myself, I most likely would have trusted that the doctors knew what they were doing. Never again. Please keep telling your story. You may save someone's life. How long has Johnny been gone? Are you doing okay? Bless you! Pam

Lily, I cried as I read your message because I understand. My Dad is in Texas and, thank God, the myoclonus is gone. It's very scary how similar your story is. Dad had also been taking Vicodin; in fact, that was the first med we stopped because he had many of the symptoms of opioid neurotoxicity, which can be a cause of myoclonus. When Dad went into respiratory failure and had to be put on a ventilator, he had just been given Ativan. I don't know about the blood gases because I wasn't there at the time. At this point, he occasionally uses oxygen, but only after exertion. Your story makes me wonder how many others have experienced this and thought it was the cancer. That is such a scary thought, isn't it? You are so right about the meds. That is a message I really would like to spread to everyone being treated for cancer. We didn't know it until it was almost too late for Dad. My brothers and I researched for hours and hours to try to help Dad when he went into delirium (although we didn't know it was delirium when we started). I cannot tell you the horror and fear I felt when I realized what had been done to him. The medications would certainly have killed him if we hadn't gotten there in time. (And we had a nurse visiting him every day who was convinced he was dying and told us we were being cruel not to give Dad more morphine to make it easier and quicker for him to die. We fired her.) It may upset some people, and I certainly hope not, but the hospital where Dad had the most difficulties was M. D. Anderson. The oncologists there have been wonderful. We had trouble when my Dad was transferred to Symptom Control and Palliative Care -- which is not staffed by oncologists -- so they could help him with the steroid myopathy, insomnia (likely caused by Decadron) and residual side effects from radiation. Like with your Johnny, over a 2-week period they had started and stopped so many drugs that we couldn't keep up with it. They sent him home with 12 drugs -- and an untreated lung infection. (When Dad complained that it hurt to breathe, they gave him Vicodin and told him that he had lung cancer so get used to it.) Like you, we have also been stunned at some of the comments made to our Dad. Many times we have had to do damage control after a nurse or doctor stressed, yet again, that he is dying and should just get used to the idea. We are not in denial -- we know how bad Stage IV NSCLC is. We know that it will likely take Dad from us, but it matters WHEN. If he can be around for an extra 6 months, 8 months, a year, 2 years, 3 years -- who knows? -- that's worth a whole lot. Every day matters. And some people actually beat it altogether. It would be a miracle, but he just might be one of those. We have made a commitment to Dad: As long as he wants to fight, we'll fight with everything we've got. When he decides it's time to quit, then we'll be with him through that with the same depth of commitment. My heart aches for your pain. Please don't blame yourself. There is great strength in being part of a team through something like this. (That's the beauty of this group!) If I had been by myself, I most likely would have trusted that the doctors knew what they were doing. Never again. Please keep telling your story. You may save someone's life. How long has Johnny been gone? Are you doing okay? Bless you! Pam

TAnn, My prayers are with you as you start Iressa. Pam

Thanks to all of you for your warm welcome and thoughts. After reading your postings, I agree with Melinda -- I'd like to meet all of you face-to-face. Onward in the fight! Pam

I recently found this message board and have been reading the postings. All of you seem so kind, caring and knowledgeable about this horrible disease that I would like to get to know you and become a part of your group, if you'll let me. My Dad (77) was diagnosed January 6, 2004 with Stage IV NSCLC with brain and spine mets. One tumor on his cerebellum was 3cm. After radiation, we were told that it had grown. When we got a 2nd opinion, we found it had actually shrunk to 2.5cm. However, he was taking very high doses of Decadron for about 3 months and developed a severe case of steroid myopathy. He got to the point where he couldn't walk, use his arms or even shift his position in bed -- none of which was tumor-related (confirmed by 2 different hospitals now). The worst part was the effect of all the medications. In addition to Decadron, he was given Zoloft, Ativan, Haldol, Ambien, and about 8 other medications. When he developed a lung infection on top of that, the combination of factors threw him into delirium with myoclonus (continuous muscle spasms). All 4 of his children live quite a distance away, and our stepmother is intellectually-challenged. By the time my brother got there, Dad was totally out of his mind, severely dehydrated and had to be hospitalized. Because of his age and the cancer, doctors told us we should let him go. We quickly did research and convinced the doctors that the delirium could be reversed, and they reluctantly agreed to try. Then Dad went into respiratory failure and had to be put on a ventilator. After a week, the lung infection cleared but the doctors told us that due to the steroid myopathy, they didn't think he would be able to breathe on his own, and they wanted us to remove the ventilator and let him die. We couldn't do it. Good thing. Once the meds were all removed, Dad regained his lucidity and was able to breathe fine on his own. Dad's lung, spine and brain tumors have all been confirmed to be stable for the moment. He is in a rehab facility and has regained the use of his arms, can move his legs, and is progressing quite well. If he gets strong enough, chemotherapy might be an option, but we aren't counting on it right now. It has been an emotional roller coaster, and I wish we had known about this group when we started. I have learned so much through trial and error, and reading about your experiences has been very enlightening. Thanks for allowing me this opportunity. I hope to get to know you as we struggle together. Pam