fillise Posted March 14, 2007 Share Posted March 14, 2007 but I guess that's true for everyone. My mom, a 76 year-old non smoker was diagnosed with stage IV NSCLC with mets to the spine on January 5, 2007. She began having trouble with back pain just after Thanksgiving. The first x-ray suggested a compression fracture, but after they did an MRI and Bone Scan they ordered a biopsy and head, chest, and neck CT scan for Jan 2nd. We got the bad news on Jan 5th. She immediatly began three weeks of radiation to the spine which helped to alleviate the back pain. She just finished her second of 4 cycles of Carboplatin and Taxol. She seems to be tolerating it well. No nausea, but she had lost all of her hair by the time she went for her thrd treatment. This site has been a Godsend because it the the first place where I have been able to read about people actually making progress against this disease. I've learned a lot on this message board and am sure there is still much I need to learn. I am 48, single and live 500 miles from my Mom and Dad. I was able to be with her when she was diagnosed and again a month later, but haven't been able to get back since. I have been in contact with her oncologist. I think I'm starting to annoy her by calling every night to see how she is doing. Those of you who are have the disease may be able to offer advice on how to strike a balance between being concerned and being overbearing. I tend towards the overbearing when it comes to making sure my family is ok. Anyway, I just wanted to introduce myself. Thanks, Susan Quote Link to comment Share on other sites More sharing options...
needhope Posted March 15, 2007 Share Posted March 15, 2007 Hi Susan, Sorry you have a reason to be here but you have found a great support community with lots of great info (as you already know )I pray that your mother responds well to treatment. God Bless and Keep us Posted on her progress. Rochelle Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 15, 2007 Share Posted March 15, 2007 Hi, Susan, and welcome. Your mom's case sounds similar to my wife's. My wife was 69 at diagnosis and had bone mets to spine, hip, leg, rib and skull. Those mets that were painful, including the spine, were radiated, and she started on carboplatin/taxotere as well. Statistics said she would live 9 months, but she actually lived a 4-year productive life. Because of the spinal injury, she had to be on low dose morphine all that time, but it worked for her. I wish you and your mom well on the treatments. Don Quote Link to comment Share on other sites More sharing options...
Don M Posted March 15, 2007 Share Posted March 15, 2007 Welcome Susan Quote Link to comment Share on other sites More sharing options...
Kasey Posted March 15, 2007 Share Posted March 15, 2007 Welcome Susan. Hopefully we can offer you info and support as you navigate this tricky ride known as LC. Sorry for you and your family ~ that you are faced with it, but being here will certainly be an asset to you. Kasey Quote Link to comment Share on other sites More sharing options...
Bev'sSister Posted March 15, 2007 Share Posted March 15, 2007 Hi Susan and Welcome aboard! I called my sister everyday, sometimes twice a day, at first. It will level off for you. I am sure your Mom is happy to be able to talk with you. Good Luck to you and your family and stay in touch. Bobby Quote Link to comment Share on other sites More sharing options...
Danielle30 Posted March 15, 2007 Share Posted March 15, 2007 Hi Susan and Welcome. I tend to be overbearing as well. I called my mom several times a day after she was first diagnosed. I've levelled off to once a day and sometimes try to get the updates from another family member as to not be overbearing. I also try to keep the medical chat brief when I call her and that helps. I wish your mom much success with her treatment plan. -Danielle Quote Link to comment Share on other sites More sharing options...
fillise Posted March 15, 2007 Author Share Posted March 15, 2007 Thanks everyone! It sure helps to have folks to talk with who have been through this. I'm going to do my very best not to call my Mom today. Before her second chemo I cut back to every other day or so, and she seemed to like that better. Again, you don't know (or, I guess, maybe you do) how good it is to hear from people who have been successfully fighting this disease. THANK YOU! Susan Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted March 15, 2007 Share Posted March 15, 2007 Hi Susan, My 67 year old mom was also diagnosed in January. I am the oldest of 5 and like you, was able to be there for all the testing and initial treatment. We live 3000 miles from each other, she is in NY and I'm out in Reno, NV. I also found it very hard to not be there on a daily basis. I know she was very grateful to have me there for the initial work up etc, but she put her life on hold 9to a certain extent) while I was there. I know that she continues to do things with her friends on week 2 and 3 of her chemo cycle. If I were there (visiting) she would not do things with them as much. I do check in daily with emails and am down to about once a week with phone calls. Since I have 4 siblings, we certainly ALL don't need to be calling each day! we'd drive her crazy. In my mom's case, I am sure that she was happy that I am not checking up on her daily any longer. I do send a fax each monday to the small chemo unit she receives treatments in. They all seem to get a kick out of that! The Dr.s and nurses there are happy to take my calls and answer any questions I have. I am planning to hold off on visiting again until June. She should be finished with here first line of Chemo by then and hopefully will be able to enjoy visiting with all of us (there will be quite the crowd) Anyway, I know it's not easy for you. I spent the first month crying every night when no one was around and putting on a happy face during the day to make it easier for everyone else. Good luck with your mom. You're right, this site does give us hope! Shelley Quote Link to comment Share on other sites More sharing options...
fillise Posted March 15, 2007 Author Share Posted March 15, 2007 Shelley--I've been reading bout your amazing mom and you for several weeks. I am one of two children, so we don't have 5 to drive my mom crazy. My brother lost his father-in-law to NSCLC on Feb 22. When Mom was diagnosed he was watching his FIL in the final stages of his disease, so his reaction has been much different. He's good and attentive, but I'm the one Mom and Dad rely on to get things done. You make a good point about allowing our moms to enjoy their normal routines. The day after my mom was diagnosed she kicked me out of the house (I had delayed returning to my home by a week to be with her during the biopsy and for the results)and told me it was time for me to go back to my life. As if. Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted March 16, 2007 Share Posted March 16, 2007 Hi Susan, My mom said the same thing to me about me needing to get back to "my life" My husband and teenage boys were very supportive about me being away for so long (the youngest was perhaps a "little too supportive") Anyway, I wanted to be sure I was there to ask the questions that I knew she wouldn't ask. She didn't want to know anything at all about her prognosis and as far as I know, she hasn't looked at this or similar sites yet. I am not pushing her to do that and when and if she is ready, I'll have all kinds of information and supportive people to direct her to. It helps me that at this stage of her disease, she IS able to enjoy her friends and continue doing most of her usual activities. In fact, other than a few days after her first week of chemo, she is feeling so much better than she did before starting chemo. Please email or PM me if you'd like to talk. This is so very hard for all of us. Shelley Quote Link to comment Share on other sites More sharing options...
masspa Posted March 16, 2007 Share Posted March 16, 2007 Hi Susan, My Mom was diagnosed in October. She's been through the first round of treatment. I only live 50 miles away, but am still not there for every appointment. She has a great support network, and tons of friends who want to take her into her appointments. Also - she doesn't want me to "do too much" (I assure her I do it because I want to, but as I'm sure you know, they can't stop worrying about their kids) I called her after every appointment/treatment I couldn't be with her for (probably more often - it's all a blur now), and every day during Radiation when she was getting treatment every day. There wre definately days that there wasn't much new to talk about, and even a few days that the extra phone call was kinda tiring for her, but I think when all is said and done, she kinda looked forward to hearing from me and came to expect the calls. I find I'm back to calling 2-3 times a week and definately after any appointments. I'm sure you and your mom will get into a routine that feels good for both of you. I'm sending good wishes your way for you and Mom Jen Quote Link to comment Share on other sites More sharing options...
fillise Posted March 16, 2007 Author Share Posted March 16, 2007 Shelley--You are right, this is so very hard. I've done all the internet research. My mom's oncologist told her to stay off the internet and I think, in her case, he was right. When I first got on and started reading the median life survival rates for stage IV, I just sat at the computer and cried. Only after digging much much deeper did I find sites like this one where there are people who have beaten those odds. I fully believe my mother is going to be one of those, so I do all the research and send her questions to ask her drs. She is lucky in that her best friend is a nurse and goes with her to appts. to take notes and listen. I will go home for Easter and then, I hope to be there when she gets the results of next scan in May. Jen--Thanks! It helps so much to hear from folks struggling with the same issues. My family laughs at me for being bossy, but I have to take charge in order to get things done. Having been with my Mom for the first oncologist appointment, and hearing what she told folks about that visit (when she called my brother to tell him, she told him what she heard the Dr. say and then I got on the phone and said "let me tell you what the Dr. really said. . ."). I don't blame her, she was in shock. While we were sitting in the radiologists office that morning waiting to hear the results of the biopsy my father called to say that my mother's sister had just passed away. So mom heard "your sister died" and "you have lung cancer" in a span of about 15 minutes. She pretty much went into shock and shut down at that point. At any rate, I think it is helpful to have someone to help her listen and remember. I'm sure we will find our pace. Thanks--Susan Quote Link to comment Share on other sites More sharing options...
fillise Posted March 16, 2007 Author Share Posted March 16, 2007 Don, I just wanted to tell you that I love the photo of you and your wife. I am encouraged by her fou-year victory! Thanks, Susan Quote Link to comment Share on other sites More sharing options...
Treebywater Posted March 16, 2007 Share Posted March 16, 2007 Susan--It sounds like you're doing a great job at finding the balance. It is *so* hard when you are so far away to know exactly how to do that. I think for my Mom talking to someone who wasn't there was a chance to talk about 'non-cancer stuff' so I'd try to get caught up on what was new and then just chat like we always had. Your involvement and research WILL BE an asset for her and I'm sure she knows how lucky she is to have you in her corner. Praying for you and her. Quote Link to comment Share on other sites More sharing options...
fillise Posted March 18, 2007 Author Share Posted March 18, 2007 Finding the balance is hard. I actually went two full days without calling her this week and so yesterday morning we have a good store of "general life stuff" to talk about, not just the disease. It was a great conversation. And then she floored me. She mentioned that they didn't know for sure the mass in her lung was malignant! It's true they didn't biopsy the lung, because they biopsied the tumors in her spine and the pathology was consistent with lung cancer. I didn't challenge her, but how much should I gently try to help her understand? She says things that just stun me every now and then. The idea of cancer hasn't been that hard to understand, but the LUNG cancer has really been difficult for her to grasp. She wouldn't believe that she had anything in her lung until her radiologist took her back into his office and pulled her CT scan up on his computer. Now she has convinced herself it isn't malignant. I don't know whether I need to help her understand or not. Quote Link to comment Share on other sites More sharing options...
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