I was wondering if anyone has had experience with the difference between extensive and limited disease. I would love to hear stories on both sidesk, and how the prognosis is changed between the two, if at all. We're about to hear which stage Mom is in, and I'm wondering if it even really matters.
I am so sorry to hear about your Mom. I am happy you have found this forum, there are many caring people here, and although I don't post much myself, just reading these messages sometimes just gets me thru a rough day.
Be prepared as others have mentioned for a roller coaster ride of emotions...but sometimes as horrible as this disease is, it can bring people together to share these times as a family. I wish you and your mom luck.
KYGal, it is wonderful to hear that you are without cancer!! It definately gives hope that my dad may hopefully be the same one day.
We learned that the cancer is in her liver and her rib bones. They will not do radiation, just chemo. They did a scan of her brain but we don't have the results of that just yet.
The doctor says the point of chemo is to buy her about 12 months. Does anyone know if the chemo will actually make her feel better (not during the treatment but in the long run)? Right now (pre chemo) she is breathless, exhausted, headachey, so tired she sleeps four hours a day in naps, plus 12 at night. I mean, if the chemo shrinks the tumors, won't she feel better...? Get some of her stamina back?
Just hoping there will be some good days to look forward to. Does anyone have experience with this? I could take a break from crying.
My husband has Extensive SCLC and has outlived what the doctor's had thought and has never done any radiation and even has 50 lesions/mets in the brain and has the cancer obviously in his lungs, bones, liver, spleen and adrenal and lymph and sure there is somewhere else I did not mention...but to give you an idea it has been 18 months. There have been some bad times, but there have been some beautiful times too. On his first chemo he responded quite well and got a 30% reduction and felt quite well for 2 1/2 months. My husband is a very determined man and yes things are looking rather gloomy now, but we never thought he would be here for yet another holiday! He asked me yesterday what I wanted for Christmas and I told him I already have it...I told him I am so blessed to have him around another Holiday for the boys. We never thought he would be here this time last year so even though they gave your mom 12 months...you just don't know. Everyone is different, but don't get discouraged if the chemo knocks her down flat on her back! My husband was hospitalized twice, but bounced back. I pray your mom can achieve some quality and enjoy life. Be strong for your mom as she needs you! Keep us posted.
Thank you so much, Kimslos. That does give me hope. Of course, my heart sinks with the thought of 18 months looking like a great amount of time, but it's all about coming to terms with the reality of this diagnosis and what life will hold for us from here on out. We're all still in a surreal place, a state of shock...always thought she'd be here forever. It feels very wrong to have her in poor health now, and to have to lose her.
But I'm so happy to hear your husband is doing well (or has way outlived doctor's expectations).
I hope his spirits are good. Thank you for lifting mine.
Oh, honestlyto thank me was not necessary. I feel your pain and understand the numbness and the shock. Yes, it is about coming to terms with the diagnosis, which we all would love to run from in hopes that it would be behind us, but no such luck. I hope you can have some very special times with your mom on her good days. Keep smiling for your mom and make her proud of how strong you are during this tough time.
I will add your mom and you to my ever growing list.
Need to get my son in bed.
If anyone can tell me anything about the chemo treatments for SCLC, I would appreciate it. Mom's brain and stomach were clear, but there's cancer in the liver and ribs. She starts treatment tomorrow. Maybe I should start a new thread for this, but if anyone has chemo advice, I welcome it. She will have the Cisplatin and another drug for three days, then in three weeks, repeats.
Is it Cisplatin and Etopside? That is a very common combo for SCLC...find out and get on the Internet and you can look up what to expect. I remember the worst thing my husband experienced was his taste buds were so messed up. I had to to go the store and bought honestly 20 different types of drinks to see if he could drink anything. I also had to do that with water and found he could only drink the Sparkletts purified drinking water and no others. He was also very tired and fatigued. But, remember everyone is so different so you never know what to expect but I looked up all the side effects on the Internet. Oh, I would also make him pot and after pot of homemade chicken soup as it somehow soothed him and he could tolerate the taste. He ate a lot of other soups too but that one the most.
Hope some of that helps....
My husband had limited sclc. They gave him chemo and radiation together. The tumor shrunk to nothing and never came back. Unfortunately it moved around and finally went to his brain which finally took him. But we got to be together for 2 1/2 years before it won. Be grateful for every day and love each other as much as you can. It is the only thing holding me together this time of year. He died last Feb. 24th so it has almost been a year. Hang in there and make her want to live. You can help her get through this, honey.
I'm so sorry about your husband. I am glad you had some good time with him. Mom's cancer is not so far in her brain, but it is in her liver. So it's extensive. We are so sad. It feels like a bad dream.
Thank you for writing here, and I hope you have happy holidays balanced with many memories of your time together.
My 75-year old mother was diagnosed with SCLC on 12/11/06. This week we met with her oncology Dr. and her treatment is going to be an agressive combination of chemo and radiation - approximately 3.5 months. With just learning about the diagnosis - listening to all the treatment and possible side affects of the treatments it surely seems overwhelming at this time. We are very encouraged as she only has to very small nodules in her right lung! Wondering if you can recommend any reading material for my Mom that would help her as well as family members. I have begun journaling - both to capture all the information from the Dr.'s as well as questions and feelings. I just signed up to this message board - and it surely looks like a great place to get and share information and thoughts.
I don't really know what reading would be helpful other than just getting the facts from reputable online sites.
The doctor my mother is going to at the Massey Cancer Institute in Richmond has one of the five year survivors under his care. That's right, the 2% that live on with this disease and fight on to live way longer than they expect, and he has treated her going on her fifth year with SCLC (extended, too!). While I realize it's important to be realistic, there is something to be said for hope and optimism, too. There are some people who outlive their diagnosis. And reading their stories is inspirational. I've even found many good stories on this site--not just "we beat it" but "we're still around, trying to beat it" or "our outcome was better than expected." Small joys, small miracles. They are out there. Best to you and yours.
My dad is 62, he quit smoking over twenty years ago. He lives with me, he had what should have been life ending motorcycle accident seven years ago, a lot of damage. I just can't understand why he survived such a horific accident only to have to deal with such an awful situation only a few years later. They said it is stage four non small cell lung cancer, non operable... we have completed four of thirteen scheduled radiation treatments. He had a port put in last week and Monday is the first chemo treatment. He is so fragile and it tears me up to see him suffer so. I am allowing no emotion what so ever other than love and of course concern but I refuse to be upset or tragic. If he see's me troubled at all the impact would hinder his ability to deal with this as well as he is. He goes from being pretty aware of the severity of finality of this to the occassional comment that suggests he has some degree of belief that he can live with this for a number of years. I don't know, the Dr's haven't suggested a time frame to me so I just let him express whatever it is that he is feeling at the time. This is the hardest thing I have ever dealt with in my life time.. I am so afraid of saying the wrong thing or not saying something when maybe I should, I guess there are no right or wrong answers for this .... Dad has a very large family, 13 brothers and sisters and last week a group were going to "drop in" on him and I threw a fit. I am living this day to day, he had a hard night the night before, I don't know my aunts and uncles and I was at work that day. I had told the one aunt the week before to contact me to arrange a visit. That has happened with a couple of people and I'm sure some think I am just awful but they need to respect my home and the fact that I am the one carring for my father by my self and they need to go through me. He has told them that ,... are any of you having issues with family members? It is just such a sense of being on the point of a spinning top that never slows down..