kellyb66 Posted March 7, 2009 Share Posted March 7, 2009 Hi. My name is Kelly. I am 42 yrs. old and I live in N.C. I found out yesterday that my mom has large cell lung cancer that has spread to her liver. The dr. said she is a stage 4. She is in the hospital in Arkansas where she lives. They will keep her for a few days and then send her home with hospice. The dr. is kind of baffled because he said that usually large cell cancer doesn't spread quick, but this has moved very quick. She had fluid on her lungs last fall, but nothing else showed up and then she began to have problems about 2 weeks ago and there are 2 tumors in 1 lung and 1 tumor in the other with spots on her liver. They couldn't do a lung biopsy because they were afraid the lungs would collapse so they biopsied the liver and it came back as cancer. I am 830 miles from home, afraid to fly and I don't know when to go. The dr. said not to make an emergency trip home right now, but he wouldn't tell me how long she had. He said he needed to get her maintained so she can stay at home. the last time she was weighed she was 72 lbs, which she has always been very small. My brother lives there and he will help take care of her, but I would like to be there as well...but I work.r I just need some advise. Thank you, Kelly Quote Link to comment Share on other sites More sharing options...
Patti B Posted March 7, 2009 Share Posted March 7, 2009 Kelly- Welcome to this site. I am so terribly sorry that you needed to come here. This is a great group with very informative and supportive people. Please, please do not listen to statistics. Your mom is not a statistic. She is an individual. I am Stage IV and just passed my 29 month mark so noone really knows what will happen. I am wondering if you mom is seeing an oncologist or a GP. I only ask because I am wondering why he is not trying any type of chemo. Is a second opinion an option?? Please come here with any questions you may have or just to vent. And please keep us posted how both you and your mom are doing. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
kellyb66 Posted March 7, 2009 Author Share Posted March 7, 2009 Hi Patty, Thank you for your words of encouragement and I am glad to hear that you are on your 29th month...there is hope. An Oncologist is suppose to talk to her the 1st of the week about treatment options. When they told her yesterday that she had cancer, she told them that she didn't want any treatments. I don't know if she will change her mind or not. She only weighs 72 lbs. I don't know if she could handle a treatment. Her Gp told me last June that she had a mass in her lung, but he didn't want me to tell her because she was very weak and very depressed. He was afraid she would give up. I came home with the news and told no one but my husband. The GP sent her to a lung spec. because of her lungs and all of a sudden her lungs are clear. So I questioned what her GP had told me. I called him 3 times and left a message asking him to return my call and to this day he has not returned my calls. I told this to my moms lung dr. yesterday and he said he would go back thru scans to see if he had missed something, but he has not seen the cancer until now. He said if it was there in June, it is not moving as fast as he thought it was. Again, thank you. Kelly Quote Link to comment Share on other sites More sharing options...
Annie01 Posted March 7, 2009 Share Posted March 7, 2009 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 Quote Link to comment Share on other sites More sharing options...
kellyb66 Posted March 7, 2009 Author Share Posted March 7, 2009 Hello Annie, Thank you for replying. I have not looked at the road less travelled but I will. My mom had several mini-strokes on Feb. 17th of this year, which was less than a month ago. 2 days later, her GP told her that he thought she had lung cancer that had spread to her brain so he wanted to do scans of the brain and lungs. They did those on the 19th and was told the dr. would have the results on the 20th, which was a Friday. She had to WAIT all weekend because they didn't get the results. She called the dr's office on Monday and all they would tell her was they had made an appt. with the lung specialist that she had seen last fall. I called her GP and said, "All I want to know is does she have cancer or not?" The nurse told me they were 99.9% sure she had lung cancer and the brain had come back negative. She went to the lung dr. on the 25th of Feb. and he told her from the scans that there were several spots in both lungs and on the liver that he thought were maligant, but he wanted to biopsy to be sure. She went back the next day to do the biopsy and because she was taking blood thinner meds, she had to wait 5 days to get that out of her system. So....this past Tuesday they go in to do the biopsy of the lung and they decided to do the liver instead because they were afraid to do the lungs. The surgeon told my grandma that there was cancer in the liver, which the lung spec. said they told him that as well, but he wanted to see the path. report and that would be friday (yesterday). So, I know what you mean about waiting....IT IS HARD and very frustrating. You are being told they haver cancer, but to hear it as confirmed is very tough. I was at work yesterday when I was told and I was not in a position where I could leave work. I held myself together and fell apart a little bit this morning in the shower. I feel it coming on, I cry and little and then I pull myself together. This is not easy. I know where you are at....my heart goes out to you. Kely Quote Link to comment Share on other sites More sharing options...
recce101 Posted March 7, 2009 Share Posted March 7, 2009 Hi, Kelly, welcome to the group. After your mom meets with the oncologist you should have a better idea of the options. One consideration will be her general health and her ability to tolerate various treatments (some are easier on the body than others). If part of her resistance to treatment comes from stories she's heard from others about their bad experience with chemo a number of years ago, she should know that major advances have been made in recent years, and some side effects (especially nausea) are not nearly as common as they once were. Please give us an update when you can. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
kellyb66 Posted March 7, 2009 Author Share Posted March 7, 2009 Hi Ned, Thank you for the welcome. I will tell my mom what you said about the treatments and hopefully if the dr. does suggest a treatment she will decide to do it. I will keep you informed on what the dr. suggest.... Your dogs are beautiful. I am an animal lover...no kids...just 4 legged ones. Take care, Kelly Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 7, 2009 Share Posted March 7, 2009 Ok Kelly, Check and see if you the doctor can at least do some type of a maintenance Chemo more so than Curative. I suspect the reason they do not want to do chemo is be cause of Moms weight. Chemotherapy CAN take a very nasty toll on a person in detirorating their body mass some times!! Not always though and I am not a doctor so Please keep that in Mind! They might be able to control the cancer adn maintain it though through a program and MAKE SURE that she has something to eat whenever she feels like eating.. No schedule for breakfast Lunch and Dinner! Stay Hydrated and drink lots of water Dehydration and a stay at ER is not fun for anyone! Drink plenty of water!! Or Fluids but water is best!!!! In the Path Less traveled there was a Gent who started that forum that had a lot to say about not taking the normal path and Having Chemo... His name was Dean Carl very inspirational Man and Lots of Humor and wisdom on the topic so.... Hang in there this is a lot to digest right now. Prayers for the Family always! Keep us posted if you have questions. Oh and Bye the way we also have another site affiliated with ours run by a Licensed Oncologist in Washington State at the Swedish institute> He volunteers his time for our medical questions . His site is also free and a lot of us are members in his site as well so you will see familiar faces in both sites. Click here for directions to his Site!!! http://cancergrace.org/ Hang in there. I know this is hard right now. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 8, 2009 Share Posted March 8, 2009 Kelly, I am so sorry you had to find us. It has to be so difficult to be so far away. I hope you and your brother have a good relationship and can be a comfort to one another over the miles. I think your mother's weight and general health are an issue. I'm small also but weighed about 102 lbs when diagnosed and was quite healthy otherwise. I actually gained weight while on chemo. Perhaps when she regains her strength and puts on some weight she will have a more positive attitude towards treatment. If not, I think you are well advised that it's her decision and all the family can do is support her in it. Judy in Key West Quote Link to comment Share on other sites More sharing options...
kellyb66 Posted March 8, 2009 Author Share Posted March 8, 2009 Hi Randy & Judy, Thank you for responding to my post. Each one of you have helped me today and today has been a very rough day for me emotionally. I just talked to my grandma and she said that 2 drs. told my mom today that she had stage 4 cancer. They told her she would be bedfast when she went home, she would need someone to lift her, to turn her in the bed and to change her diaper. The dr. told my grandma that she had less than 6 months, but doubted she would live past 3. Not the news that I wanted to here. My brother and I have a pretty good relationship and I am going to have to depend on him to take care of everything if I am not there. I imagine that I will have to make that trip before long tho... I have a headache from crying for most of the day. I fell apart this morning and then my husband and I were coming home from Sam's and I lost it again in the car..I guess it is to be expected. This is hard. Randy, my grandma told me that they told her a person that was dehydrated did not feel the pain as much??? My grandma said if she took her home that she would become dehydrated and end up back in the hospital. It just sounds to me like the hospital doesn't even want her back...send her home to die with some morphine. I will check out the website that you gave me. Thank you both! Kelly Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 8, 2009 Share Posted March 8, 2009 Kelly, I hope you or your brother plan to call hospice to come in when your mother comes home from the hospital. Please don't think it means you expect her to die tomorrow. I hope someone with more info than I comes in to respond, but I'm sure that the only criteria is that she is no longer doing treatment for her advanced cancer. I do know people on this site have had hospice coming in for a significant time and have not had some of the more serious issues that your mother has. Please take care, expect the waterworks to erupt any time. Yes it is absolutely normal. God bless your grandmother too. It is so difficult to bury a child at whatever age. I understand that it's just not expected or felt to be natural in any way. Judy in Key West Quote Link to comment Share on other sites More sharing options...
kellyb66 Posted March 8, 2009 Author Share Posted March 8, 2009 Hi Ms. Judy, When the Dr. told my mom on Friday that she had cancer, he told her he would keep her in the hospital for a few days and then send her home with hospice. She has not done any treatments because they are just finding the cancer and when he told her she had cancer, she told him she didn't want to do any treatments and the dr. advised against doing the treatments. Now that was her lung dr. Two cancer doctors talked to her yesterday and they did not mention any treatment options to her. I don't know if that was because she said she didn't want any (I think she would be open to talk about it) or if they just think they will not help. My grandma was going to meet with three people from hospice today and then meet with the dr's again tomorrow so I will know more this evening and then again tomorrow. My brother said that my mom said she wanted to go to a nursing home because she didn't want to be a burden on anyone. I did get an email from my grandma this morning asking me to come home the 1st of April to go thru my mom's things. She wants me to get what I want first and I have aunts and uncles that are already acting like buzzards just waiting to land. This shouldn't be this way, but it is. I have felt better today. I went to church and cried my heart out. I guess it is something that we need to do and apparently it is somewhat healthy because I do feel better...don't know about tomorrow though. I go back to work so I should keep my mind busy. My grandma is having a hard time with this as well...as a matter of fact, she has an appt. with her heart dr. on the 11th of this month. I think she is going to need a nerve pill. Thank you, Judy. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 8, 2009 Share Posted March 8, 2009 Kelly, I feel better for your mom knowing hospice is going to be onboard. If the doctors have not discussed treatement with her, I would assume they don't see the benefit. I don't remember you mentioning she was in pain as that is sometimes a reason to do chemo or radiation--to shrink a tumor that is causing pain. I'm glad you are facing and feeling your emotions, it does help. Like I said, I really feel for your grandmother too. This has got to be so hard for her. Hope she gets a good report on her heart. Keep us posted as things develop. Judy in Key West Quote Link to comment Share on other sites More sharing options...
kellyb66 Posted March 8, 2009 Author Share Posted March 8, 2009 Hi Judy, Again, good to hear from you. Yes, my mom is in pain. They are giving her morphine every 2 hrs. I think the reason they are giving her that is because #1. She is addicted to Xanax. 2. She was taking hydro? she was cutting them in half, but taking a lot of them. My grandma just told me about all of this. She says my mom is addicted to xanax so there may be some pain with that addiction....she has complained about her back hurting for several weeks. I guess hospice will give her morphine. I am still waiting to hear from my grandma on how it went with hospice today....I hope there is a little ray of sunlight to go with that. Thank you for your concern for my grandma. She is a wonderful lady. She raised me and my brother. She is healthier than most of her children and she is very active at 81. She has been blessed. I will keep you posted on her. Thank you. Kelly Quote Link to comment Share on other sites More sharing options...
jaminkw Posted March 8, 2009 Share Posted March 8, 2009 Thanks Kelly. Judy in Key West Quote Link to comment Share on other sites More sharing options...
LovesLife Posted March 9, 2009 Share Posted March 9, 2009 Oh my Kelly - you have been through so much in such a short period of time. I am so very sorry to hear about your mom. It sounds as though you are all a good support system for each other and that is important. As to hospice, both my sister-in-law's utilized hospice (Canada) and it was such a blessing. They not only help the patient; they help the family through the process. I can't say enough wonderful things about the experience we had. Your grandma sounds like my mother-in-law - she is 88 and can run circles around me. Hopefully your grandma's appt. with her heart doctor on Wednesday goes well - an anxiety pill certainly could help, like you said. We all find out who the "buzzards" are in a family at times like this. It is so sad as this should be the last thing you all need to worry about. Sadly, most families have folks like this in their midst. It is nice that you have a date set to go see mom though - it will be good for all of you. Take care and please keep us posted. Linda Quote Link to comment Share on other sites More sharing options...
SandraL Posted March 11, 2009 Share Posted March 11, 2009 Hi Kelly. I am sorry to hear about your mom and your need to be here. You have already received a warm welcome so please add mine to the list. May you find this site to be a source of support for you and your family. Please keep us updated. Sandra Quote Link to comment Share on other sites More sharing options...
kellyb66 Posted March 11, 2009 Author Share Posted March 11, 2009 Sandra, Thank you for the warm welcome. Kelly Quote Link to comment Share on other sites More sharing options...
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