Petunia

I am so sorry to hear of your loss. I know how quickly things can change and how it all seems like the last months have been a fog. You have been such a wonderful daughter-in-law and your mother-in-law was very fortunate to have you as an advocate. All I can say is that this disease is horrible and we can only pray that one day they will have a cure, or at least more options to prolong a good quality of life. You and your family are in my prayers.

Thank you for all your prayers and words of advice. Yes, I feel shattered at the moment and need to find my new place in the world. It is amazing how much hurt losing someone can cause. I never really understood what people went through when they lost a parent and unfortunately now I know how bad it is. I am slowly getting back into a routine and slowly getting out of my pity party because I know my mom would want me to go on. I am so sorry for all who have lost a loved one and send my prayers. Wishing 2013 is much better than 2012 because 2012 was the worst year of my life. Thank you all for everything throughout this horrible roller coaster called cancer.

My mother lost her battle on December 22nd at 10:43 in the morning. We were all by her side holding her and telling her how much we love her. My life as I knew it is now over and I am trying to cope with what lies ahead. My best friend is gone and at peace. It has been 10 months since her diagnosis and I would have never thought she would be gone so quickly. Once she got the brain mets and WBR she was never the same. I am still in shock and do not realize she is gone. I miss her so much. This disease sucks.

I had hope with the brain mets but that hope is now gone. Hospice came in yesterday. My best friend is dying. She has been in bed for days and is not really eating. It all came so fast...so quickly. There are no more options to help her. We just want her to be comfortable. I remember as though it was yesterday writing about her for the first time. I had higher hopes. My best friend will be leaving my life very shortly and I will never be the same. Thank you to all who have helped me through this disease. I wish you and your only happy and good things.

Thank you very much for the info and good thoughts. It is much appreciated.

At first "my world" as I like to call her was depressed. Now it is much more. I gave her stories of hope to lighten her day but, unfortunately, the MRI came back with mets to the brain. I have written everywhere for some hope. I really should learn where is the best place to write daily..maybe in general discussion...I know so many of the stories here and other places and I don't know how to always be kept up on the info... She was dx in February of this year and completed 6 cycles of chemo with good results. Had a brain MRI done 3 months ago that was clear. Now it is not clear. There are mets all over her brain. We have to go for WBR. She has been having horrible headaches so that is why we went to the Dr. and asked to push the MRI up. She has also been very, very forgetful. Forgetting things that we just talked about. I know I have written before for advice on pci but can anyone give information on WBR? The doctor said to be on the lookout for seizures. Does anyone have any experience with this? Does the forgetfulness go away? Can anyone share of their, or someone they know, survivor stories? Can she survive after brain mets? I have been positive, however, it is very difficult to watch her be broken. She is not only physically broken, she is also mentally broken ,and I do not know how or what to do to fix her. Am I just being naive thinking that she will come through this? i NEED to be positive because I truly believe that attitude is half the battle

Hi, I am also sorry that you are now part of our "club." I just joined in March. My mother got diagnosed with sclc.ext with mets to the liver, adrenal gland, lymph nodes, bones. She received 6 cycles of chemo, 20 radiation to her bones, and two zometa IV (for her bones.) She now had to make the decision of PCI (preventative brain radiation) and she decided to wait until the next brain MRI. I feel for you because I remember how horrible it was in the beginning: not knowing what to expect, not knowing the treatment, the outcome... It is all so confusing and stressful. This site helped me so much. I came for answers, support, anything all the time. Everyone here is so nice and supportive. The only thing I can tell you is that it does get better once the treatment plan is in place. My mom finished her chemo in July and we all just went on a family vacation to Lake Placid where she went on the bobsled that went 60 mph and sideways. She did lose her hair, which is tough on her because it reminds her everyday of her "c". It is beginning to grow back. I would suggest to take your mom wig shopping now. I did before the treatments so when my mom did lose her hair it was one less thing to worry about. My mom did not experience any side effects from chemo which we were all worried about. She was tired during the week of chemo but I was not sure if it was just from the chemo or from the chemo and busy days (she is retired.) She is back to normal now except for her being a little more tired and a little colder than usual but nothing at all to notice. She still does her every day routines..shopping cooking. I wish I had the magic words or answers...I have searched everywhere. I may sound tough, however, this does break you. The only thing I can say is that I am tough because it makes my mother tougher and want to fight. There are many people out there who beat the odds. DO NOT listen to statistics because that is all they are..statistics. Everyone is different and I tell my mother that she is here for as long as she allows herself to be. DO not give up hope!!!!! It sucks but mind over matter is what I, you, everyone, needs to believe.

Words cannot express how sorry I am for you to have lost your mother. I do understand the "dying"process as I have been through it before. It is extremely difficult to be there at that time, however, very comforting. Know that it is not a "lung cancer" dying process but rather a very normal dying process (the confusion and so on.) You are very fortunate that you were there to show her comfort and know that you did all you can to make her comfortable. I have followed your story since the beginning and I have always been sending my good thoughts. Know that my good thoughts, prayers,and vibes, are sent your way to you and your family as I am sure all the people that visit this sight have you and your family in their prayers. I will, unfortunately be in your shoes one day with my mother, and I can only hope that I will be there to comfort and make her feel nothing more than the beautiful person that she is, as you did for your mother. This disease could break us if we allow it to...please tell me how you survive this (as I know you will) so I can take that with me whenever I shall need it (I am really hoping not too soon.) I, as well as others, do not know you as a face to face person, but we do know you as a person who understands more of us than most of the people in our lives.... you will get through this because you now have a guardian angel with you and everyone around you. Know that there are many prayers and thoughts sent to you and your family.

My mother, as some of you may know, has ext sclc. just about to do her 6th cycle of chemo (she did radiation 20 times) main tumor showed shrinkage (not her adrenal gland.) We have not done a checkup since radiation because she just ended 2 weeks ago. Recently in the last 10 days she has been spitting out phlegm during the day. She says it is clear but when I looked at it it seems a little pink/reddish (not blood but not yellow.) She was just diagnosed late February. Can this be a reaction to the radiation? She has not had this symptom for the past two months so it is worrying me now that she is doing this. She had this symptom three months prior to her diagnosis but then it stopped and now it seems to be back. She has her 2nd brain MRI scheduled for tomorrow as well as her second cycle of Zometa. She had a CT scan done a few weeks ago and I am wondering if they will do another one (Pet ? Bone scan) after her last round of chemo. I know they are waiting to see what is going on with her tumors inside her body before they begin or discuss PCI/WBR. It is just worrisome that she is now spitting up stuff throughout the day when I am thinking that she is getting better. Please any info or advice will be greatly appreciated..honest info and advice. Sending good thoughts and vibes to all always.

Thank you both very much. Your advice has been helpful. I am guessing then if her last round of chemo is in July then they may not want to start the wbr until December. My mother is worried about permanent hair loss from the radiation but I think that hair loss is better than brain mets. Do you feel like it was worth the side effects to get the pci? I wish you all the best. Good thoughts and vibes sent always.

Just a few questions about wbr/pci. My mother is about to do her 6th cycle of chemo of ext. sclc. (etop/cis) and she has been doing very well with side effects. She has just finished 20 rounds of radiation to her back/bones/tumor and finished her 5th cycle of chemo. Her main tumor has shrink as has most of her other tumors (her adrenal only shrunk a little bit.) She will be getting her 2nd mri of the brain in a week. The dr. recommended wbr/pci. I have done much research on this and know that there are pros and cons. I know the one con is that she may experience early dementia, however, the pro is that it may prolong her time here with everyone. Can anyone give insight of wbr/pci (especially with ext. sclc)? I have heard that they do not worry about side effects with ext. sclc because they say the patients are not usually alive long enough to experience such side effects (years later). Is it worth my mother going through this radiation? She is beginning to cough up stuff at night again (although it is clear with no blood) but this worries me. It has only been 4 months since diagnosis and you would never know she has sclc expect for her hair loss. She has been the same person except for some fatigue. What is there to expect with WBR? Thanks for any honest advice, opinion, and information. Sending good thoughts and well wishes to all.

Thank you so much for the hope. The weirdest thing about seeing your reply is that I never look at this post and for some reason tonight I did. It is also my birthday and I spent my day with my mother. I came home and got very upset and my husband told me to believe. Now, here I am at 11:00 at night reading your reply to something I wrote months ago. Thank you so much. It means so much that other people are there to offer hope. I am so happy that there is someone out there that is almost 20 years from diagnosis. It gives hope to all. His story is amazing and I hope one day to write about my mother's amazing story of how she was able to overcome it all and come out the winner!

I am very sorry to hear about your bad news, however, there is still hope out there. You said you were from the NY area, as am I. I have my mother getting treatment at Columbia with a Dr. Stoopler (She was dx with ex. scls in February and is just about to start her 5th chemo and is on her 11th radiation treatment for her bones.) He is very well known for lung cancer. I also know how Sloan can take forever to get an appointment. I have talked to several people during my mother's chemo treatments at Columbia who are Dx the same. One said that Sloan would not even take on their "case" because it was not unique enough and the other said that Sloan's treatments are the same as Columbia. Also, if you get into Columbia and a clinical trial comes along associated with Sloan, many times Columbia's patients are also included. You can email me for my information as a referral to Dr. Stoopler. He is a wonderful doctor with a great bedside manner and he is "up" on all the new treatments. ..as you said "your dad is okay now." I know from my mother that what keeps her spirits up is that her loved ones treat her the same and not as though she has limited time left here on earth. I am sending my good thoughts your way and do not give up.

Just wanted to give everyone an update of how my mother is doing. She is about to start her 4th round of chemo and is doing great. She lost her hair and gets a little tired but other than that she has been feeling great. She just got a ct-scan done and her lung tumors is now half the size and her other tumors are shrinking a bit. She will be starting radiation for mets on her back and bones and because it is so close to the primary tumor they will also be targeting that. She received Zometa one time for her bones and only got a slight fever the first night. She received the Nuelasta shot twice and she felt NO pain afterwards. She has truly been lucky with side effects and we are all very grateful. Now radiation is the new thing. I believe she will be going for about 10 to 15 times. Any information as to what we may expect? What are the chances of her tumors starting to grow once we stop chemo? Can they stay the same for a year or more? I am sending all my good thoughts to everyone.

Anger is the correct word; I feel the same. We are now going to a dr. in New York so I would suggest the second opinion. Our new Dr. was just "up" on everything available for sclc: cisplatin, neulasta shot, radiation, pci (preventative brain raditaion) and he does the correct tests (bone scans, ct-scans, brain mri.) It is such a different world since diagnosis... tests every week, dr. appointments, highs and lows. There is hope out there for beating the odds so hang in there and be strong!

I am sorry that you have this in your life. My mother was diagnosed 3 months ago with ext. sclc. She s on her 4th round of chemo and so far the only side effects are hair loss and a little bit tired. She is starting radiation next week on some mets to her spine. I also agree that a good doctor can make a difference. We switched doctors after the first round of chemo because we did not feel he was doing everything he could. We are much happier now with the new doctor and I have seen my mother's spirits lift. This is a great website for support and advice. Everyone here is very helpful and they assure you that you are not alone. Hang in there and sending positive thoughts your way.

Keeping you and your mom in my prayers. A positive attitude can go a long way.

Thanks , I suggested that but he seems to want to do PCI. He is waiting to start that because she will be seeing another dr. for her radiation in 2 weeks. They said that they may even do radiation to the primary tumor since the bone mets are so close. Not sure how I feel about radiation to the brain. it seems like so much to do to my mom and not sure of side effects. I guess one thing at a time. The Neulasta shot really helped her though because her wbc are 10!

Thank you so much for all the info. I have used Cancergrace for some questions but at times it seems difficult to navigate around. How are you feeling? I know that you were going to a doctor's visit in April and you were going to "give 'em hell." Update on my mom's status: Is beginning her 3rd cycle of chemo next week and so far so good... no side effects except hair loss. Unfortunately, she has mets to her bones and she will have to start radiation. We will find out more when we go to the dr. tomorrow. She also has mets to her brain but I think the Dr.is waiting to do WBR/PCI until after he sees if the chemo is working on the tumor (I hope it is.. I can't imagine it not,) I hope that others are doing well. Sending good thoughts and prayers out to you all.

Ernest,I found your story so my questions were answered (except if she ever did radiation to the brain.). I have read your story before I started typing... it gets confusing sometimes when you search and search this site. Your mom sounds like a fighter! My mom, on the other hand, said that if this chemo does not work she will not do anything else. She also said thought that she was not going to do chemo at all and she is, so I only hope for the best. She is not taking any other supplements like your mother though and anything I suggest she refuses.

Thank you everyone for your responses. I feel your pain and agree that we need to take each day as a gift. I also found it interesting that you said your mom was cold because my mom got cold after her chemo and she is always hot. It only lasted for the week after chemo though. Are you doing clinical trials with your mom now? What chemo was your mom in the beginning and how did you find out it wasn't working (ct-scan?) How did you find out that she had sclc? Did your mom do wbr or pci? Sorry with the questions. I now understand the word scanxiety because we just got a paper result of a brain mri and there is an increased flair/t2 signal in the midbrain.... have to wait until next week but does anyone know if this means there is cancer in the brain.....ugh Randy, I am sorry that you lost your beloved Deb, however, know that you are helping so many with your responses and your care for others who are battling this disease. YOur responses havebeen very helpful. We are starting a new chemo next week: etos.& and cisplatin instead of carbo. We actually just switched doctors to a well known dr. in new york. Have others taken this chemo? From what I understand it is more intense, with side effects and the amount of time it takes for a visit. I hate to see my mom have side effects because with her first cycle she had no side effects - just a little tired and hair beginning to fall out. We have to do this other chemo because her wbc went too low. She will also be taking the Neulasta shot too (however we found out that we can give it to her instead of making another trip!) My mom still is uneasy about leaving the house and I think, for now, I also want to wait until we see how she reacts to this new combo of chemo and shot. I just don't want to take the chance of her getting an infection. If her wbc does not get too low then I can't wait until she is ready to go out shopping for a bit.. a little normalcy . I send my good thoughts and prayers out to all of you always. It is amazing how quickly your world can change.. never take anything for granted.

Thank you so much for the information. She has not received her first shot yet and should be getting it with her next cycle of treatment (hopefully next week.) I also believe we are changing her meds for carboplatin to cisplatin. I will keep you updated to how she is doing. She is scheduled for a brain mri this week and we are hoping her wbc goes up so she can begin her next chemo cycle. Judy, you said you get pain medication during chemo for the side effects? I heard you can only take tylenol or motrin, but I can be wrong. I am sending my good thoughts and vibes to all of you always.

Has anyone had to have neulasta shots to increase wbc? After my mom's first round of chemo her wbc are still low and they had to put off the second cycle of chemo for a week. They told her that for now on she will get the Neulasta shot for the next 5 cycles. I heard that this can cause horrible pain. She has not had any side effects from the first cycle except for being a little tired. Thanks for any info.

Has anyone had to have neulasta shots to increase wbc? After my mom's first round of chemo her wbc are still low and they had to put off the second cycle of chemo for a week. They told her that for now on she will get the Neulasta shot for the next 5 cycles. I heard that this can cause horrible pain. She has not had any side effects from the first cycle except for being a little tired. Thanks for any info.

Good evening, I just wanted to thank everyone for your well wishes, advise and response. It does make this "journey" easier to know that there are people there who have been on their own journey and are strong. Judy- you are an absolute doll - When I saw your response about having a lovely day I was not on a "high" day, however, you made my day get better because you put positive thoughts in my head. Your response made others respond and it has all been so helpful. Diane- thank you very much for the other website-cancergrace. I have not been able to look at it yet but it sounds also very helpful. It also helps to hear how others are doing on chemo. My mom is being a good patient and drinking her fluids even though she doesn't want to. Janet- you are right about the other opinions- if it gives my mother more peace of mind I am fine with that. It is just scary to hear the same diagnosis more than once. I keep daydreaming that I am going to go to the other opinions and they are going to tell us the other doctors were wrong and it is just a benign tumor and it can be taken out and our lives will go back to normal. Dawn- I read your story and how horrible it is that you had to get tossed from one diagnosis to another. I am so sorry you had/have to go through that. As for your April appointment- you let them have it! Don't hold back (you seem like a spitfire- I love it!) This website has been my saving grace at this time in my life and it is only the beginning. It is amazing how many people are living with this disease. Prior to my experience, I had no idea. It is amazing how you tend to bond with people that you have never met. I told my husband I have "new friends" and he is happy I have others to help me through this time. You are all so strong! You make me feel stronger, which in turn, makes my mother feel stronger. So far she is doing well on the chemo. Her WBC were low but I guess not low enough to worry about because the doctor didn't do anything. She gets checked again next week. Her blood pressure was very low so the dr. had her lower her daily pressure medicine. She was just told not to go to crowded places. She has been stuck in the house and was looking forward to going shopping but now she can't. Her only outing, other than getting stuck with needles, was wig shopping. It was very emotional in the beginning, and it was very hard to see her sad. It was also difficult to comprehend how much our lives have changed in just a month. We used to go shopping all the time together (for clothes, stuff for the house) and now this was our shopping experience. I hope we will be able to have or "old" shopping experiences again someday. I just don't think our lives will ever be like they were a month ago and I am still trying to understand and digest this. I just wanted to end by saying thank you to all my new friends. I am sending my well wishes and prayers to you and your families. Stay strong and know that you now have one more person sending good vibes your way. Thanks for all your help! It means more than you know.