My mom was dx w/stage iv adenocarcinoma about 1month ago after having a cough and feeling tired for about 7months. After all the tests we were told she has an infected right lung w/met to lymph and bone (pelvis, spine & femurs). Of course we were told this was inoperatable. She started chemo (Gemzar & Carbo). We were told she has 6-8months maybe 1 year...which seems just to be the standard answer everyone gets. I have a disabled brother that we need to make arrangements for so I wish we could get a more accurate idea of what time she has left. At first she seemed to be doing okay...no real side-effects of the chemo...but now I'm not sure how she is doing. I know things are going to happen that will be normal for the progression of this disease but what are signs of things that I would need to call her doctor or take her to the hospital? Last week she had pain on movement or deep breaths under her right breast, then another day she was very shaky and her handwritting was not readable, then the next day her legs were sore and weak. But then all those things just go away. For the last 4 days her breathing is much worse and she is having trouble doing anything...like making a cup of tea. My mother is very strong and private and has never gone to doctors for anything in her life. Everytime I see this stuff I ask her to call her doctor and let him know and she refuses. How do I know what is serious enough to override her and call him anyway, or take her to the hospital? Iam married and have kids and Im always afraid to leave her and go home in case something will happen (she lives alone). Its just so nerve-racking. If I cant get her on the phone when I know she should be home Im out of my mind wondering what could have happened. I feel like I need to know some signs of what would need immediate attention and some signs of how I will know its taking a turn for the worse. Her sisters are out of state and want to come for Christmas but they keep calling and asking if they can wait until then and I dont know what to tell them.

Just looking to think. My mom seems to be holding her own for now. She has two more weeks of chemo and then they will take new scans. Her biggest complaints are the coughing (which happens alot if she tries to talk) and the being out of breath. I guess if your so out of breath that you cant do anything at least you would like to be able to speak quitely with someone but she cant even do that too often. We still havent gotten any great answers on how much time she has but we are trying to figure out what to do with my brother...so far no ideas. I guess things could be worse than they are but I still feel so lost...this consumes my every thought everyday. I still cant seem to calm down if I cant get in touch with my mom...I so fearful that at anytime something could happen. I suspect that I will have some notice of something going wrong...I dont know, maybe I wont...so in the meantime I just keep panicing and I cant control it. I worry about her constintly even though I know its making her crazy...I just cant help it.
Does anyone else act like this...is this normal? If I cant handle this, how will I handle whats to come? I feel for anyone going through this because it really does affect everyone.

:wave: What you are feeling right now is very normal. The first few months you just sort of live in a panic state. I live 120 miles from my mom and those first few months it was so difficult to go back home each time I visited as I feared the moment I left the world would come crashing down and that anything I had just done with her was the last time. Having her not answer an E-mail or the phone was the worst as then the imagination kicks in! It is a frightening place to be thats for sure. Being Stage IV NSCLC and 80yrs old at the time. The doctor told us the chemo maybe would buy her 6 months to a year and the way he said it made me think he did not expect the year but possibly the 6 months if even that, so that of course fed the panic. Well here we are 16 months later and she is doing great. She has been back on Chemo (Alimta) for over 3 months now and not having any serious side effects to it, has all her hair which makes her happy as she lost it all with Carboplatin and Taxol. She is very active, eats well and is enjoying life to the point it is easy to forget she has lung cancer. We saw the doctor today and her CEA is still coming down so the chemo is still doing its job..Yeah!!! I am able to deal with it much better now and feel my own life is more normal now, though I will be honest you do still get moments of panic as you know someday that other shoe could drop as it just hangs above you. My mom is a fighter and her attitude that she does not plan to let the cancer win with an easy fight has alot to do with how well she is doing. I know it is hard not knowing how much longer you have together but as I have told others in previous posts, no one knows how much time they have so in away things have not changed as much as we imagine they have when we hear the words cancer. Enjoy the time you do have with her and vent here when you need to .She just may surprize everyone and do much better then her doctor expects. I get a kick out of how surprized my mom's doctor is each time he sees her, but she has been on Tarceva and now Alimta both are new drugs so the doctors don't really know what to expect . In a way we are all learning together. Hang in there and know what you are experiencing is very normal and most of us on this site have been there or are there now.My prayers go out to you both. JanMarie

Hi Dawa, I totally understand what you are feeling and my Mom hasn't even been fully diagnosed yet. My every thought is about her and cancer. She also lives alone, close by, but alone, and I can't rest until I get a hold of her, which I do at least twice a day. I make myself sick if she doesn't answer the phone. It is such a crazy feeling. I feel as though all the fun has been taken out of life!! I don't enjoy anything anymore, and I can't imagine having fun again. Although I pray that this is all just a huge nightmare that will end when we get final test results.....showing no cancer, of course. I would appreciate any and all prayers for my Mom, as I will continue to pray for all those affected by this horrible disease.....God Bless you all....

Thanks for your reponses. It helps alot to know I'm not going crazy. I'm so sorry that anyone and all of us are going through this. My prayers go out to all of you as well. There's no easy way to get through this for any of us except for day to day.
Everyone continue to do well and I will check back soon.
Also I still don't know if I'm using this site correctly...??? I just keep hitting the reply button.

Hi again. I forgot to ask if anyone could explain something to me. Somedays my mom breaths just okay and somedays her breathing is terrible. She finally went back to her pulm. dr. and he did a breathing test. He said she is at 98%. This confuses me because that sounds good/great to me...but then why does it seem (to me & her) that she is not breathing well??? Also she is on Spiriva inhaler once/day and Advair 2X/day (just brought down from 3X because her heart was racing too high) and she just stopped Prednisone (which she was taking for about 1month). It just seems strange that her breathing test seems to have good results and yet sometimes she cant even speak to me on the phone because shes so out of breath (and she hasnt even done anything physical to induce that...one time she told me she just made a cup of tea)

Hi, Sorry I can not answer your questions as to why your mom is having periods of shortness of breath. I think only a doctor can figure that out as there are so many causes for it including anxiety. Do you know what test the doctor said was 98%, if it was the oxygen saturation from a pulse oximeter ? Or was it a vital capacity? Did he actually do tests where he had her blow into a machine or just put a probe on her finger? Does your mom have and reactive, obstructive airway disease such as asthma or COPD? Was she a smoker as if she was she probably has some degree of COPD. I am wondering because they can cause shortness of breath with activity. She is taking inhalers for the above diseases. Make sure she only uses the spiriva once a day and the advair twice aday about 12 hrs apart. One puff twice a day is the max dose for the advair ! Does she have a rescue inhaler such as combivent, or albuterol (also called proventil) or the new form of albuterol called Xopenex? Those are the ones that give instant relief .Advair and spiriva should never be used as a rescue inhaler as one is a 12 hr drug the other a 24 hr drug so they will not give instant relief and can be dangerous if used more then they were intended to be used. All these drugs help if it is a reversable airway condition and in the case of the advair the steroid in it helps prevent inflammation in the airway. Is you mom going to the doctors alone? If so could you or someone go with her as I can tell you what my mom hears the doctor say and what I hear him saying are two different things.When she E-mails my sisters with what the doctor siad they always E-mail me and say "what did he really say?" People tend to hear what they want too or quite listening when there is something they did not want to hear. Two sets of ears are better then one. Someone needs to be your mom's advocate in terms to her medical care as it is too much for her alone to handle. Find out the answers to some of the questions I have asked you and maybe you will have a better understanding of what is going on. I know it is tough but hang in there as being there for your mom is important for both of you. I will keep you both in my prayers. :wave: JanMarie

Hi Dawa,
Sorry about your mom. I just thought you may want to her from someone that is going through what your mom is. I have stage II lung cancer with mets to the brain. I had surgery to remove upper right lobe and it had went to one lymph node also, had them removed. Went through chemo then radiation. I did pretty good through all. Then about 4 months later I had a severe headache for 3 days. Had a ct and found 4 large mass. and numerous small ones in brain. I finished radiation 3 weeks ago and now its the waiting game. They won't even check my brain for 4-6 weeks. I have slight case of copd but other than that my o2 is 98-99%. I was using a nebulizer but quit unless my breathing gets real bad. I went to ER one morning thought I was having a heart attack (could not breath well at all). Nut it ended up being an acid reflux attack. I get very short of breath and feel exhausted from doing anything at all. And I was not like this during those 4 months before my mets. I don't understand it either and it is very frustrating. It's almost Christmas and I want to shop and decorate. It has took me all week to decorate one room. I think that all this chemo and radiation and other meds just absolutely drains us. That is the only thing that I can think of. Could be some of here meds too. I was on decadron (steroids) massive doses in the beginning and now I am almost off of them completely. They were so hard on my body. Spend every minute you can with your mom, and try to make them as happy and as memorable as possible. Be prepared for more waiting, that is the worst part for me. But I am a very impatient person. By the way I am only 46 years old. This all began 10/2004. Good luck to you and your mom. I will pray for all.

I havent logged on in quite awhile, and I'm not sure if things have changed. I hope not, but its hard to tell. It's been 5months now. Mom had chemo from late Sept. til about early Jan. We have opt'd to stop chemo at this time. She was just too weak on the treatment, even after a blood transfusion and her breathing was pretty bad. She only got up and dressed once a week for treatment. That's just no way to live. Now w/o treatment I thought she was doing MUCH better. More energy and felt more like herself. In these last three weeks her legs are giving her trouble, some days very bad. Also her coughing is much worse. Now today she has left side chin numbness and told me that other times she has had "not pain, but something" (she downplays everything) in her jaw. I did some research online and it doesnt sound like a great development. We dont have another doctors appt until mid March so I asked her to call the doctor but of course she wont. She is very tough (and difficult) about that kind of stuff and she never tells tells the drs the truth. I dont know if these are bad signs but I cant stop worrying about her 24-7. These past 5 months have gone so slow and yet so fast. It is so terrible for anyone that has to go through this (patient and family/friends). My heart goes out to everyone but unfortunatly I cant offer any advice to make it easier...I cant figure out how to get out of this whole myself.

Well that numb chin has now started to cause pain. The chin is still numb but the whole jaw is quite painful. Moms leg pain has gotten much worse. In the last week the pain seems to have increase alot. Last night I called her doctor to call something stronger into the pharmacy because the tylenol and motrin combo was no longer dulling the pain. I dont think these are a good turn of events. I think Monday (tomorrow) we need to visit a hospice center so that her pain can be managed. Im not sure if this is how we are suposed to do this but its all I can think to do.

Dawa, this morning is the first time I have seen one of your posts. My heart goes out to your Mom, you and your family. Hospice is a wonderful organization and the people so caring and helpful. My parents were both Hospice patients and their doctor had to assign them to Hospice. Ask your Mom's doctor about that and about what medications could be more effective for her. I can barely stand the thought of anyone being in pain when there has to be help for it. I had my second clean scan last month, with SCLC, and I have to admit I still do not feel well. I don't think I ever will, but clean scans are good news, as long as it lasts. I still have some pain and shortness of breath most of the time. Like your Mom it is very hard to explain or figure out, and no way to determine if it is a serious issue or just damage from the cancer, the treatments, scar tissue, nerve damage: the list goes on and on. Her doctor needs to make the decisions and I would keep after him until he eases all your minds. I want to tell each of you that I totally respect anyone who decides they want no more treatments. There are days that your life is pure hell, and I am a lucky one so far, so I can only try to imagine how bad it is for someone with advanced stages. My prayers are with you daily. There is such a long list just on these boards and it is almost frightening how many people with cancer I know locally. The Ohio River valley seems to have something to do with that, but the list of causes is so long that it would drive you nuts trying to figure it out. God love you all. Pat from northern Kentucky

Hi Dawa, although we live together, as a caregiver I can tell you that I live in a constant state of worry and concern. I have learned to live on very little and intermittent sleep. I especially grow concerned when he sleeps "quitely" as I am used his snoring, and when I don't hear it, a red flag goes up in my head. My hubby and I had a long conversation the other day. I have adopted such a "nursing" role that he is beginning to find me claustrophobic. Have you taken your meds, call me when you leave the house, call me when you get home, keep your cell phone on you, bundle up, you need to pace yourself, rest. Every day I find myself saying these things. They are well intentioned, but he is beginning to feel smothered. He doesn't understand that my biggest fear is that something will happen with him and I won't know to where even begin to look for him. I entrust him to the angels every day when I have to leave for work, and I leave with a heavy heart. Not that I could stop "something" from happening to him, truly, but at least I know I am with him when it does. That is such a HUGE weight on my heart. Dawa, it will be with you every day and I hope you have faith to keep you strong. We are all here in this together and we draw together in thise days to hold eachother up and comfort one another. I would be lost without this board to come to and although some days I cannot get logged on, I think about each of you here and pray and hope. Take care of yourself and try not to let the stress draw you down. I take vitamins called "Stress Tabs" and they are high on vitamin B complex. You can find them at any pharmacy. They seem to really help. Now, if I could just sleep.

Take care and love from Southern Indiana,
Jan

Hi Dawa,

My 79 year old mom has small cell lung cancer. She was diagnosed on 11-30-05. I worry about her all the time. She has been more in the hospital or skilled nursing facility for rehab than she has been home. Chemo really wrecked her and she had only 1 dose. She is finished with radiation therapy and we are told it helped shrink her tumor. She doesn't not want any more radiation/chemo though and has refused further treatments. She wants to get back on her feet now. Her problem is that the skilled nursing center put her on Fentanyl...a pain killer. It has her mind confused most of the time.

I don't know what else I can do for my mother. She is in poor health (hypertension and diabetes) and I feel like I am just waiting around for her to die. It is a terrible feeling. I would give anything to go back in time before her diagnosis and freeze time. She is in a wheel chair now (thanks to the chemo and her bad reaction) and is too weak for any more treatments.

I, too, have an older brother. He is dependent on my mother emotionally and I don't know how to help him. He lives with her and her death will kill him.

My situation requires me to spend lots of time with my mom but I also have a 5, 7 and 8 year old depending on me at home too. I live about 40 miles from my mom and the daily drive is tiring.

I pray for a quick end for her. I don't want her to suffer any longer.

Carol

I havent been on these boards for a long time. Our situation just didnt go well and my mom passed on Feb. 26, 2006 after going in the hospital for some routine tests. During this whole thing I never felt like we were being told a whole story and this continued right into the weekend she passed. We were in such shock. Nobody told us what was going on. I mean we knew things were getting worse but we didnt know we were at that point and no
one told us. My mom died with me and my sister in the room, she was not "hooked" up to anything and therefore no hospital people knew it happened. We sat there so long before we went to tell someone and after telling no one came to tell us what to do next. We sat with her in her room for 6 hours before we just left her there. I will never forget this and forgive myself for not handling it differently. She had a roommate and visiting and lunch and everything was going on right on the other side of the curtain. Someone should have helped us. We were so lost and shocked...what happened to the routine tests. Its been six months and I'm never going to be the same person again. I don't know if I've even dealt with this yet. I have on the outside but not really. I think of her all day, every day. I would give anything to just be able to call her. People say it gets easier but I think it gets harder...its just longer and longer that you havent seen or spoke to them. I sold her house and I have to close this week on it...people think Im crazy because this is really upsetting me. These last six months I have been very "testy". I just get mad and yell for any reason. The people in work are talking about me, how nasty Iam lately...but nobody "remembers" what happened and what might be wrong with me. I dont know how to get back to me. I dont know how to go on from here. I will continue to pray for everyone else (the sick and the family).

Oh Dawa, I am so sorry to hear about your mom. It seems like the whole situation was handled very callously by the team at the hospital. I have a hard time digesting what happened to your family. At the very least, I think I would find it cleansing to write a letter to the hospital administrator telling him how you all were treated, so that maybe this won't happen to someone else. I have not had to deal with the loss yet, and although I do believe it's a bridge that I will have to cross in the not-so-distant future, I think I can understand what you are going through. Have you talked to your family doctor about this? Perhaps, it would be good to find a "live" support group that can help you talk out some if this grief and anxiety. Maybe even one on one counseling....people at work do forget sometimes and even as supportive as my employer is, there are times that it annoys them that I have to take off work to care for my husband. I can see it in their body language when I return to the office. Oh well...we can't change people, we can only change how we react to them. I don't know how to tell you to bring peace back into your life, how to find yourself again. But maybe forgiving yourself for leaving your mom there that day would be a beginning. She knows that you tried your best and she would never ever hold it against you what happened that fateful day. Dawa, we are always here for you. Come when you need to and let us help you even if it is to just talk. Let us know how you are doing. Day at a time, keep your chin up. You are stronger than you think. I will keep you in my prayers for God to bring healing to your heart and soul.

Take care. Love and hugs from Indiana

Jan

Dawa, I am so sorry to hear your mom's story. My mom is the one with NSCLC so I am dreading the day I join you in loss and dealing with the issues you now face. Grief can take a long time and it is too sad that people not in the grief process can't seem to understand the change in behavior, mood, thought process and even physical things one caught in its gripes go through.

I know my coworkers try to understand what I am going through but because it has been 27 months since mom's battle began I think they forget that I am still in the in the batlle and not at all myself. I work 12 hr shifts, night shift 3 in a row ( Fri thru Sunday which the others hate working so it is to their advantage too that I am willing to work every weekend) and it is difficult as I feel so exhausted most of the time as on those 4 days off I make the 120 mile drive to go help my mom then rush back home to work those 3 shifts week after week with only an occasional week off. ( if you can call it a week off as then I am busy doing all the things in my own home that do not get done so " rest " is a foreign word to me!) Anyway we self schedule at work then our managers go over it and move people to equal out shifts and they just did the next schedule ( which is 6 weeks) and they have moved me twice so I have 2- 4 day stretches at work! The 3 in a row just about kill me as by day 3 I am done in so I do not know how they expect me to do 4 twice? I left a not asking them if they are trying to kill me? and saying when I was young ( I am now 48) and not under the stress of my mom's cancer I could have done this with no problem but it will do me in now. I know the type of answer I wil get as they do not really understand as they are not at my home when I do crash so they see the mask I manage to put on to wear to work and assume my life is like theirs. So believe me I understand what it must be like for you at work!

Last I agree with Jan, Please do write a letter to the hospiital administrator telling them about your mother's death, No one should be left alone like that and the nurses job is not only to take care of the patient but to support the family in times of need like yours. There is NO excuse for what happened to you. Todays hospitals are concerned about image so they need to know about it. It will make you feel better getting it off your chest and in away you are being an advocate for the next family so hopefully they do not experience what you did.

You are not crazy you are just dealing with a huge amount of grief. I think the loss of a mother is one of lifes biggest obstacles to overcome as I meet may elderly people that tell me their life story and if the part about their mother dieing is in it they always get tears and then say that was the hardest thing in my life as my mom was the best, a saint whatever but I can see that the pain of loss is never completely gone instead we just weave it into our life and go on. Give yourself time to heal as 6 months is a short time for grief to be under control. Hang in there and know you are not alone. God Bless you JanMarie