stand4hope

Dr. Joe, I think this is a good topic. My husband doesn't want to know anything except how to "kill it". To this day (1 year plus), he still doesn't know his stage or that his disease can't be cured (short of a miracle or a new drug). He never asked, but I have, of course, researched and talked to the onc privately and know that he has already far exceeded their expectations. This makes it very awkward for me and my relationship with my husband about this disease. When he began to have shoulder pain and back pain, my mere suggestion that he should get it checked because the cancer can cause that sent him into a near rage. When he had his PET scan and CT that showed cancer was in his bones, liver and pericardium, he was shocked beyond your imagination. At a bare minimum, I think an oncologist should say something like this on the first visit: "Mr. Smith, there is currently not a cure for this disease, but there are treatments that are very promising for longer term survival. The statistics for this disease are grim, however, the statistics are based on drugs that were used at least 5 years ago, and the drugs today are much more effective, and can keep this disease under control for a very long time." Then, I would wait and see if questions come. I think a patient should be told right up front that currently there is not a cure, but there is good treatment. I DO NOT think they should be told how long they have because I KNOW the doctors don't know. I don't care that my husband doesn't know his stage or his prognosis, but I do care that he thinks the chemo, radiation and now Iressa are going to cure him. The onc has never told him that, but I know that's what he thinks. To him, a 10% response rate, which is what the onc told him the Iressa stats said, means that if he is in the 10% that his disease can be cured. Did you read the recent thread on this topic? I'll go back and find it and post the link for you just in case you missed it, and I'll just add it to this post. Here's the link: http://www.lchelp.com/community/viewtopic.php?t=10916 I hope that helps. You are wonderful!!!!!!!! God bless you, Peggy

Elaine, I don't have a clue, but I wondered if Albuterol inhaler might help, or Advair? Both are prescription only. Love, Peggy

Time for a mid-month pep talk. How is everyone doing? You don't need to report weight losses - we can do that again on Oct. 1. Just thought I'd check in and encourage everyone to keep at it. I've done ok and still losing in spite of several splurges. When I started this on July 25, I decided I wasn't going to make this hard. I decided right up front that if I only lost 1 lb. a month (1/4 lb. a week) that I would be happy. I made up my mind to "eat healthy" and choose low fat and count calories, but I wasn't going to torture myself with saying I would never eat ______ (fill in the blank) again. The reason is because I knew I wouldn't stick to it. This month I have enjoyed homemade spaghetti and meat sauce, chicken tacos and even a couple of Klondike bars and one ooey gooey pastry, and I have still lost another 3 lbs. All the rest of the time, I am eating a lot of vegetables, fat-free turkey & chicken, a little bit of fruit each day (yuck!), bran cereals w/2% milk. I love beans, so for snacks I will sometimes have 1/2 cup of navy beans, black-eyed peas, lima beans, baked beans, etc. They are high in protein and fiber and you don't need a lot to satisfy hunger. And my life-saver is the Nabisco Honey Maid Low Fat Graham Crackers. One or two sheets of those and my sweet tooth is satisfied. Anyway, I wanted to post this to encourage everyone to keep on keeping on, and if you still haven't started or feel you have failed miserably, don't give up, just start up again and today is as good a day as any to get started GETTING SMALLER. You can do it. Ginny - pictures are a good idea, but I'm not going to put up a "recent" picture until I get at least closer to how I looked in this picture. I know I can't look that young again, but I sure can look that thin if I stick to this. BEST OF LUCK! GET SMALLER!!!!!!!!!!!!!!! Love, Peggy

Thank you, Joe. That was true in my dad's case. He was going in respiratory failure and the anxiety meds didn't work very well to take away the anxiety. Large doses of morphine worked to calm him so he could relax, sleep, and not feel panic. Thank you for answering the question. Peggy

Amy, I would like to hear from Joe (oncodoc) on this because I was told by more than one health care provider at more than one facility, when my dad was sick, that the morphine would compromise (adversely) affect his breathing. He had to have it regardless, and they said it wouldn't be a huge effect, but that it did adversely affect breathing. I know I've seen on this site several times where people have been given morphine to help breathing, so I am a bit confused about it. He had severe COPD and not lung cancer, so maybe that makes a difference. Joe? Do you have a response to this? You asked: I don't think any of us can answer that. We never know what's next. My favorite answer to any question that the answer could be good or bad is always this: "Expect the best, but prepare for the worst." Notice the emphasis is on the first part.

ALL RIGHT! ALL RIGHT! ALL RIGHT! Rachel, I bet you are in the best mood you've been in for a long time. Enjoy the moment and have a very safe trip! We will see you when you get back. Love, Peggy

Holly, If it had been me, I NEVER would have found the tape because I'm one of those people that will just throw it away. If I had found a blank tape with no label, I know that's what I would have done, because I've done it several times. I have flipped back and forth to your post at least 4 times tonight trying to find some words, but they just aren't there. I just don't know how I would feel if I had found something like that tape. I'm not sure if I would cherish it or hate it. I just don't know. Losing a spouse is one of the toughest, if not THE toughest, things to adjust to, and it sounds like discovering the tape could set you back a little, but hopefully just a few baby steps back. Ginny has posted several times that there just aren't any words to make it easier, and she speaks from experience, so I'll just steal that from Ginny and tell you that I am so sorry for the emptiness you are feeling. Much love and prayers, Peggy

Hi Minpin and WELCOME! You have reached the "Port of Support". This is it. It doesn't get better than this, at least for online support, and probably even for in-person support. This is the Lung Cancer SUPPORT Community (LCSC) and that is exacty what we do. We support each other. I thought you might find this link interesting. It was a thread that was recently started here about how some lc patients want to know everything and some don't want to know anything. It is very enlightening: http://www.lchelp.com/community/viewtopic.php?t=10916 I think it will help to better understand where your mom is coming from. I liked the word "mule". That would describe my husband, too. Mule Man. LOL! One more thing. You can type out your mom's profile by going to the top of the screen to the word "Profile". Click on Profile and scroll down where you see "Signature". There is a box to the right where you can type what you want to say. Then click Submit at the bottom. If you don't like how it looks, you can go back and edit it anytime you want. Edit: Nevermind. I see you already figured it out!! Once again, WELCOME, and God bless you, Peggy

Hi Kim and WELCOME! My brother and sisters lived in different states when my dad was very ill and it was very hard on them. I sent them daily updates by email, sometimes 2 or 3 when his condition was particularly good or not so good. I knew that if I was the one that was far away, I would be half crazy. I hope that someone in your family is keeping you posted frequently about your mom because it will help you to feel more in touch. We are all here for you as you, your mom and the rest of your family fight this fight. Please come often and let us know what we can do to help. God bless you, Peggy

Kelley, Off topic: I think it's a toss-up which one is better looking (your dad or your son) and they both have equally winning smiles, but when it comes to CUTE - your baby wins the prize! Everytime I see one of your posts, I just stare at that beautiful baby. He is more-than-adorable!!! ..... and, yes, prayers for successful treatments for your dad! Love, Peggy

These were great, Becky. No tears here. I really liked most of these quotes. I also checked out the website and it has loads of great tips for how to help those who are grieving or have cancer. Thanks for sharing this. Peggy

Charlotte, This is very sad news. I am so sorry. My heart aches with yours. Please know that you and your family are in my prayers. Love, Peggy

Oh my goodness. Thank you so much David and Karen for this post. I will most definitely pray for Beth and will give it all I've got. Dear Beth, Please try to relax and not be afraid. I'm sure you are in good hands and the doctors, nurses, angels and God Himself will be with you at all times. Take comfort in that knowledge. I will be thinking of you, praying for you and hoping to get an update very soon. All my love, Peggy

Update: After 3 weeks of absence, I finally heard from Addie today. She is doing fine. In fact, she has just finished treatment and got through it just fine and has even been playing some golf. She is just staying off the board for a variety of reasons. I was very happy to know that she is not only doing well, but feels great! She will get new scans in a few weeks. Amy posted the other day and, as you know, is taking a "get-my-house-in-order" break. Carleen posted also a couple of days ago, as did Cat. Love to all, Peggy

Hi Joe, Yes, you are very, very welcome here! We have another oncologist (rwoodburn) that posts occasionally. He gave us all a great education on the different types of stereotactic radiosurgery. I'm sure you have already scrolled through some of the site and see that we have a lot of questions and post a lot of symptoms, but we also post a lot of emotion. Anything you have to say is greatly appreciated! Thanks for joining. God bless you, Peggy

L´Shanah Tovah to you, too, Andrea. May you find peace and happiness (and calm ) in the upcoming new year!! Loveya, Peggy

My husband's onc said you can tell if it's working in 4 weeks. Most say at least 2 months. Peggy

This is fantastic! YAHOO!!!!!!!!! We love getting good news like this. Love, Peggy

Dolly, I am so sorry! Love, Peggy

Beth, My husband only wants to know only what he needs to know, and only when he needs to know it. He wants to know where he's supposed to be for what test, what time, and how to prepare. He wants to know when the appointments are for the doctors, and I'd better not be late. LOL!! He doesn't ask questions about prognosis, etc., and will only ask about what's the next treatment or talk about a pain or discomfort he might be having, but even that is only at the doctor's prompting. His attitude from day one has been: "Treat it and kill it and don't bother me inbetween because I've got work to do." He has done no research, has no idea what stage he is and doesn't want to know. LOL! Now me - HA! HA! HA! That's another story. I want to know everything, even what I don't need to know. We're quite a match. I have learned to just not say anything unless I have to, and have just learned to let him take the lead. Yes, we have talked about it from time to time, but believe me, he is in control of the conversation, and I take my que from him. I know I'm not the only caregiver that has this situation. There have been other threads posted about this and you and I are not alone. If you are like me, you want to talk and talk and talk, and then talk some more, but I have to do it here, and not in my house. LOL! Good luck. PM me anytime you want to talk about this. Love, Peggy

Ray, All I can say is that I am smiling all over my whole face! (Bad grammer I'm sure, but that's exactly what I'm doing.) And with this good news, I am going to bed. Good night, everybody! Love, Peggy

Beth, I would never feel comfortable to give you advice on this. You and the people who have had to go through these body-smashing, body-beating treatments can tell you what it's really like. I can only tell you of our own experience. My husband went through 3-4 mos. of hell, and the treatments took a powerfully strong and healthy man and knocked him completely off his feet. Because of his good health, they hit hit him hard and fast, but it was so bad that I thought the treatments were going to kill him instead of the cancer. Now, before you or anyone takes that as negative, the good news is that he's glad he did it, and I am THRILLED he did it. You've seen my posts on how well he is doing today, and you can read his profile to see where he is today, so I'm not going to repeat any of it. I do know that no matter what you decide, everyone on this board will support you in your decision. There are people who have elected to not have treatment, and some post here regularly. They are loved and respected for their decision because it's a decision that they have not made lightly, and their decisions are what is best for them. Just remember, Beth, we are always on your side. Love, Peggy

Well, I missed it again. I forgot about chat and just logged on a few minutes ago, went to the chat room and everybody had just said good night. Poop! Peggy

Paddy, I am so upset to hear about both the stroke and the brain mets. I will try to call you tonight on my way home from work. I can't write much now (I'm supposed to be working LOL). Keep your chin up, girlfriend, you've got a lot of support here, and you know I'm stuck to you like glue! Love, Peggy

Carleen, First of all, I am SOOOOO glad to hear from you. We have all been worried since we didn't hear anything from you for so long. Here's a recent post I put up on my husband's brain mets. At the end of the post is the link to the whole thread and there is a lot of helpful information there. Here's the link to the thread: http://www.lchelp.com/community/viewtopic.php?t=10836 Also, he did just complete a 3-day motorcycle trip and chalked up 1400 miles total and is ready to go again. THERE IS HOPE, HOPE, HOPE!!! Love, Peggy