Annie01

Thank you all for the suggestions. We will try them out. This group is so wonderful. Thank you for always being here.

Hello, My brave, dear mom is near the end of her battle. Hospice is coming to the house every day now. She is in no pain but complains about the nauseous feeling in her stomach. She isn't really eating much--trying to get an "ensure" down now and again. She's got a prescription for nausea treatment that doesn't seem to be helping, she's tried smoking pot which helped some but not enough. Anybody have any other suggestions we might try? Thank you so much!

That sounds like good advice. Thanks Judy.

Thank you all for the info. Thought I'd share the latest... I called hospice and a social worker politely informed me that it may not be time for hospice yet. He said I need to basically wait until I get a clue from my parents or from the oncologist that the time for hospice has arrived. He was familiar with my Mom's oncologist and said the onc. is a big supporter of hosipce which was reassuring. He also said the onc. will know how best to approach it with my p's--and that it may be better coming from him than me--my Dad may be more receptive to it. I know everyone on here has dealt with these kinds of issues, and knows it can be so frustrating, scary and lonely at times. I thank you all for being here. This is truly a place of comfort. Annie

Wow Nick! Thank you! I never thought of it like that. I think I know how to approach this now. Mom, Dad and Sis just spent a frustrating 7 hours of mostly waiting at the ER last Saturday and perhaps I could convince them that with hospice that wouldn't be necessary. And, my Mom is a planner who wanted to make sure the will was in place, the funeral home arrangements were made etc. shortly after diagnosis. Thanks to you too, Judy! I think it is hard for my Dad to accept that he (they) may need help. He is very traditional and I think he sees it at his sole responsibility to take care of her. I will be gentle. I really appreciate your help. Have a great day!

Hello, Can anyone share some advice/suggestions about how and when to get hospice involved? My 70 y.o. Mom has been living with Stage IV NSCLC for a year. She has been going "downhill"--not seeming like herself since Christmas. She was released from hospital today after draining pleural effusion but we're not sure of results yet. Dad is primary caregiver and I live 3 hours away. Dad doesn't have a lot of patience and I know he's scared and stressed. My sis lives 2 miles from them but has a difficult time knowing when to get involved and feeling like she's stepping on Dad's toes. She brought up hospice a couple months ago to Dad but he indicated they didn't need the help. I've heard such wonderful things about hospice and would like Dad to reconsider, but not sure how to broach the subject without making him think we don't think he's capable of handling Mom's care. They've been married nearly 50 years and Mom has always taken care of everything, so I think Dad's feeling a little insecure. He's doing a terrific job, btw. I don't want Mom to think we're giving up either. The onc. hasn't brought it up. What do I do? Thank you! Annie

Thanks everyone for your great advice as always. Mom had a clean MRI back in April. I did find out that her red blood cell count was low and they gave her a shot of Procrit. Perhaps that was the cause of the unexplained falling. We'll find out soon I guess if the falling discontinues. She's got 2 more treatments scheduled and then she'll get a break from chemo.

My 70 y.o. Mom was diagnosed in March with Stage IV NSCLC (squamous cell). She's been on 3 week intervals of Carbo/Taxol and CT scan after 3rd treatment showed 50% shrinkage of main tumor--was 8cm at diagnosis, but now is 4cm. Just had 4th treatment on June10th. Since then, she has fallen 3 times. She met with oncologist today, but he didn't give her any "reasons" why she might be falling; i.e., side effect? She says she's not dizzy and she can't explain it either. Anyone heard of this before or have any suggestions on what might be happening? Thanks. Annie

Hello, My mom has a pain in her butt--literally, and I swear it's not me! The pain was mild prior to her diagnosis of Stage IV NSCLC (squamous cell) in early March. A "hot spot" at the site of her "butt pain" showed up on the initial PET scan, but the thoracic surgeon, her oncologist and an ER doc have all looked at the PET scan and all agree it doesn't appear to be cancer, but they don't really know what it is--perhaps arthritis. They don't seem concerned about it--obviously, their focus is the cancer. She started IV chemo treatments of carbo/taxol about 10 weeks ago--one treatment every 3 weeks--and the pain has become worse since chemo started--severe enough one time to go to the ER on a weekend. She has a prescription for what amounts to Vicodin (hydrocodone5mg/APAP 500mg) which helps some, but she says the pain is a 7 on a scale of 1 to 10, with 10 meaning--take me out and shoot me. I think that's pretty high. Does anyone have any thoughts about this? Has anyone else experienced this? Should she be more assertive with the doctor in trying to figure it out? Thank you.

Sandra, Hugs from Illinois too! I pray tomorrow will be a better day for you. Annie

You deserve a good cry. I want to cry with you. I've been following your posts and I'm so sorry for this latest news. I've heard wonderful things about hospice and I'm sure they will help you through. Hang in there. You and your family will be in my thoughts and prayers. Annie

Dear Teardrop, I'm so sorry for your loss. I hope it helps to know your sister is out of pain. May your memories comfort you and your family at this very difficult time. I will keep you in my prayers. Annie

Thank you all. Your information and encouragement is very helpful. It is so wonderful that we all have a place to vent/ask questions etc. I feel so much better than I did the other night. I'm not going to worry about mom's forgetfulness. I really appreaciate the info about the differenty types of scans. Still going strong on the no smoking. I wish DH would quit too, but I know better than to push. I hope it's as beautiful today where you are as it is in Chicago. Have a wonderful weekend. Annie

Hi Becky, Thank you for your advice. You are so right about not reading too much into things. I should probably know better. I hope you won't take this the wrong way, but I had to laugh about your kitchen cabinet story. It was easy to visualize. I can imagine there were plenty of times you were present, but not "there" because of all the stress. I saw an "expert" on tv explaining that we all have senior moments. We all forget where we put our keys, it's when we forget what the keys are for that we need to worry. What a great idea about sitting outside with my mom. I'm going to try that! Let's pray it's warm by then. As for getting chemicals from the doc for nicotine withdrawal, I've decided against it. I've tried that before and it didn't work for me. I had horrible insomnia etc and eventually went back to smoking. I recently read where it prolongs the withdrawal process. If I can just survive the first 72 hours, the physical withdrawal will go away--and then it's just a psychological battle. (Just! ) I also read where 90% of successful long-term quitters went cold turkey. I want to be in that 90%. I read your story. Congratulations on your 5 year milestone! What a wonderful thing! I wish you a long, healthy, happy life! Annie

Hello, Please forgive me for this long message. I want to ask your advice about a few things, but feel I need to provide some background information first... We finally got a diagnosis for my mom this week. She has Stage IV squamous cell NSCLC with some metastasis to lymph nodes in the chest. The thoracic surgeon who provided the diagnosis referred her to an oncologist who will see her 3/23 to discuss treatment options, so we're back to waiting AGAIN! Ugh! In addition to the cancer on the lungs and lymph nodes, the PET scan showed some really bright spots in the brain, liver and bladder. When mom asked the surgeon about it he said not to worry as there's always a great deal of metabolic activity in those areas which the PET scan picks up. Only an MRI would tell us about cancer growth in those areas. My sister and I have noted on a few occaisions that my mom seems to be getting "forgetful' which seems to coincide with her learning of her lung cancer. For example, I spoke to her a few days ago and she mentioned a visit from my cousin and went on to tell me about their conversation in detail. We then went on to talk about a couple of other things and she then said, "oh, did I tell you John (my cousin) stopped by?' It struck me as odd, as it had been less than 5 minutes since we had talked about him. My mom is 69 years old and has been smoking for 50 years. She is still smoking which I totally understand. In fact two different doctors told her now is probably not the time to quit. The stress of trying to quit might be too much given all the other stress she's dealing with now. I have been a smoker about 27 years and quit cold turkey 2 days ago. I am determined to stay quit. Part of the motivation was obviously my mom's diagnosis. In addition, my 9 year old son started crying last week and said to me he was scared because "Grandma is so sick and it's probably because of her smoking and you smoke too". Well, I felt like the worst mother in the world at that moment. So I decided, "if not now, when?" I am achy, irritable and restless but I keep reminding myself this is nothing compared to what my mom is facing. Now my questions... 1.) I was under the impression PET scans would show metastasis anywhere, otherwise why do they scan these "high metabolic areas" if it's not going to tell them anything? Should we ask the Oncologist for an MRI of these areas or is it standard operating procedure to order an MRI before determining treatment? 2.) Is the forgetfulness "normal"? Perhaps she's been talking with so many people lately and under stress that she forgets who she's told what to??? Because of this should we insist on checking out the brain? 3.) I live 200 miles from my mom but my son and I will travel to visit her over his spring break at the end of the month. One of the things we always do at her house is sit around the kitchen table, smoking cigarettes and talking about everything under the sun. I really am determined not to smoke anymore, but I know how much my mom enjoys our talks and part of me thinks we sub-consciously bonded over smoking. (No one else in our family smokes.) This probably sounds very strange, but how do I make sure my mom still enjoys our talks around the kitchen table without thinking twice about me not smoking. I don't want her to feel bad or guilty and I don't want to feel that way either. Any ideas for something loving and helpful I could say? Or do I just ignore it and act like it's no big deal, which seems a bit disingenuous to me. 4.) What general information can anyone provide about dealing with stage IV NSCLC, treatment plans, things to watch out for, ways to make her the most comfortable she can be etc. Thank you so much! Annie

Thank you all for the warm welcome. Barbara, I appreciate your point of view as a mom. It helps to hear that. I'm 47, and my mom is one of my best friends, but sometimes in thinking about her and this journey, I feel 7! Patti, your advice about being sure someone is at MD appointments to take notes, ask questions is well taken. We have been tape recording the visits, so my parents can re-listen if needed. It will help me too when I go home, as I can feel I got all the information. Ned, I pray your nickname takes on the other meaning very soon. I love your goldens--they're beautiful. Aloha! Lynn, I noted it's been less than a year since the loss of your DH Larry. My heart goes out to you. Thank you for continuing to share your wise words and encouragement. It means more than I can say. I wish you peace. Kelly, I hope you see my reply to your post introducing yourself. God bless you and your family. I look forward to sharing with all of you. Annie

Hi Kelly, My heart goes out to you and your family. I can sense your frustration at being long distance (like me) and not feeling like you're getting the whole picture from the doctors. While lurking here, I found the message board about "the road less travelled" for people who decide treatment isn't for them. It opened my eyes to some things. In waiting for my mom's diagnosis, I've been reading about how important it is to be sure our mom's have the information they need to make decisions, but that the decisions must be left to them. It never occured to me that there may be people who wouldn't want treatment until I read the boards here, but I totally understand and respect that option. I'm mentioning it to you as you may find some comfort in reading the posts there if you haven't already. Good luck! I will keep you and your family in my prayers. Take care. Annie

Hi Kerri, I'm new here and haven't read any of your posts until this one about your mom passing and was so touched. (My mom is in the very beginning stages of diagnosis.) I'm so sorry for your loss. You both look so beautiful in the picture posted here. I wish you and your dad peace. I will pray for you both. Hugs! Annie

Hello, My name is Annie and I'm so happy to have found this site. I've been lurking here for a few days. I'm writing about my mother who has been diagnosed with NSCLC within the last two weeks. She had a bronchial infection shortly after Christmas, went to see her PCP who ordered a chest x-ray and CT scan. She has a large (2" x 3") mass on the left lung and a mass about 1.5" x 2" on the top of her right lung. She went for a PET scan today and we're now waiting for a call from the doctor's office to schedule an appointment (hopefully for Monday) to find out the results of the PET scan. She has lost about 15 pounds since Christmas and is sleeping a lot. The diagnosing process is taking its toll on all of us because it seems to move so slow. Perhaps I'm writing a bit prematurely since we're not exactly sure what we're dealing with yet. However, I am struggling with the fact that I'm 200 miles away from parents, work full-time and have a young son. I'm not able to just go and be with my mom. My dad and my sister are with her and they both have gone to every MD appt. She has many friends and a great support system which I'm so grateful for. Still, I feel so bad I can't be there for her. We're very close. What I really wanted to say was thank you to all of you who share your stories, words of wisdom and encouragement. I look forward to getting to know you (at least electronically) as we travel this journey. I can't begin to tell you how much this site has already helped in knowing we're not alone. Thank you!