EastCoastLadi

Happy Birthday Betty!!!! You probably need to slow down a little bit, but definitely talk to your dr. about it. I think having an inhaler may not be such a bad idea. My husband was given one in the beginning of treatment, he hasn't had to use it, but it's there just in case. Grace

Karen, I know how you feel, I've been thinking about my dad alot, it will be a year in aug. since he died. It's the little, out of the way things that pop up. Like today, we were watching a cooking show about grilling artichokes, and it bought back memories of how my dad, who loved to cook, made the best stuffed artichokes, especially around Thanksgiving. No one, even to this day knows how to make them as good as my dad did. Hang in there Karen... Grace

My family's experience w/ hospice w/ my dad was the following, initial visit, everything was given to them, what meds, when to give, who to call, when soc. worker coming in, the first few visits with the nurse and home health aide. In reality, what actually happened was once they knew my mom was a nurse and my brother his hc proxy, it was "here you go" showed them what to do, and pretty much I would say 90% of the care was by mom and brother, and other family members including myself and about 10% nursing care. My father medically was an extremely difficult patient, due to the fact that he had not only a colostomy bag, but a illostomy(bladder)bag, as well. Both due to the fact of his deteriation were not fitting properly, would break or explode. He had gotten a staph infection from his month at the hospital, so all precautions had to be done, he had the morphine pump, which the dose needed to be changed due to the fact of increasing pain. Along w/ his fentynl patches, which were 150mg in each arm. The nurse that would come in was very nice, she tried the best she could, now getting a homehealth aide was a problem, some would show, some wouldn't. My dad lived for 7 weeks at home w/ hospice, his drs. thought he wouldn't live past a day or two. The most difficult part was my dad didn't want to die, he fought so much, but the cancer was so bad that his tumors were spread throughout his entire back and you could see them buldging out, he was starting to bleed from his nose and mouth. There was only so much we could do. On the last weekend before he died, his need for morphine was growing, he was going in and out, we knew he would need more before monday, my mom called the on-call nurse, she gave my mom a big hassle, saying my dad had enough. Then my brother, who is a doctor, got on the phone and put her in her place and w/in the hour we got the morphine, thank God. That early Monday morning, my father was in total distress, congestive heart failure for four hours, my brother did all he could, my dad didn't go easy. Later that morning the hospice nurse came, we cried, but she was relieved my dad was no longer in pain. That's why don't mention hospice to me in regards to anything doing w/ my husband, I don't want to deal with anything like I did w/ my dad. Grace

Susan, I know all too well about the fear and anxiety, I don't know anything specifically about what your mom is going through. I see that you are from Texas, is she at MD Anderson?, because from what I hear from people around here, is that is it a very good hospital. By any chance if she isn't, you may want to look there. We are here for you, whenever you feel the need. Grace

Michele, My heart goes out to you and your family tonite. I am so very sorry, Please if you need some comfort and support we're here. Grace

Kimberlie, I don't blame you for being afraid and confused! That's awful about your mom, but if there is a positive in this, is that the onc. are taking charge. But this is so much for anyone. Please know that I am praying for your mom. Grace

(((Carleen))) You know I'm here for you..... Grace

Brandie, I'm sorry that your mom has to go thru all of this. I know a little about the Boston hospitals, my husband was in consult w/ Beth Israel which is affiliated w/ Dana Farber, but he is in treatment up here in Lowell, with a fantastic hospital and oncs. I would definitely get the second opinion. Also the "LMD's" - local medical drs. ( insider dr. thing!!) are (believe it or not)sometimes better equiped at handling this. But I would also call the onc. nurse to explain the situation, down in Boston, they deal w/ so many people, it's enormous, I've been there....it can make your head spin. As far as WBR, first I think they don't do it w/ chemo ( in those instances) because it's too much for the patient, I know my husband had to stop chemo because of his WBR. Also I don't know why the 10 rounds, my husband had 4 weeks of WBR, so that's definitely a ? to ask. I don't know if her lung collapse has anything to do w/ it. But Brandie, also know these hospitals in Boston are some of the best in the world. But they are also big on teaching and research and DF has alot of clinical trials going on, which is a GodSend for many people. BTW, where we are at, all the oncs. from here, pretty much know the oncs. down in Boston, they've worked with some of them at one time or the other, so if you worry about if you were to go outside of Boston, please know that. If you have any more questions, send me a PM (private message) Grace

Hello! First of all, welcome to this incredible place....you will definitely learn ALOT here. Also don't listen to the statistics!!! There are many people here who have heard those same words your mom did...and guess what? they're still here and stronger than ever!!!!! Also make sure you ask any questions you have, to everyone you need to ask, including here!!!! Also make sure your mom gets her nutrition, that is so important going thru chemo. Do you know what type of lc your mom has, because are some differences in the type of chemo and treatment your mom can or may have..... I can tell you personally, and it sounds so crazy and ironic, but I hate that I found this place was because my husband has lung cancer, but I am so happy I found this place because I have such wonderful incredible support from such awesome people!! Grace

Denise, At the end of next month it will be 1 year since my dad died. Sometimes when I don't think it hits me it does!!! Like today, I had a dream about my dad, don't remember what the dream was just my dad was in it....then talking with my husband about his cancer treatment vs. my dad and then bam! I lost it, cried and cried, wasn't expecting to react like that...I guess I needed it...my children miss their "Grampy" too, I tell them that he is watching over them....I hope your son had a good b-day...I know w/my children 8 and 11 if they wanted or want to talk about their grampy, they know they can anytime. Grace

Joanie, I too hope you're doing better today.....also I hope you're keeping cool today as well, this hot weather wears so many people down, including myself...I say an air conditioned room and a cool drink are in order!!!!!!! Grace

Kimberle, Besides her oncologist, does your mom have a primary care physician, because he/she has to get on board too. I've experienced with ER drs. don't really know how to deal w/ cancer patients, I'm all too familar with the long, agonizing waits, my husband waited 5 hrs one time and his onc. had called to ER to let them know he was coming!!! So I told my husband, next time there's a problem, he's going by ambulance!!!! You need to ask as many ?'s as you want to, I don't care how simple, complex they may be....Also who is your moms' healthcare proxy, that is very important too, because if it is you, then you need to know every little thing...because there may come a point where your mom may not be able to make any decisions for herself. Please stay strong, it is difficult, but you can do it. Grace

Melinda, I know it must be difficult for you to see your mom going thru so much. I hope your SD calls to get her something stronger, I know like Trish said with upping the Imodium, but did your mom get any donatel with her chemo? ... I know it helped my husband, I know that there must be something stronger to give your mom. Hoping for the best... Grace

Joanie, Hey I say it's time for you to go find a Hot Tub or Whirlpool Bath and have yourself a nice relaxing soak!!!! I just came back from my mini vacation and I had one of the best nights' sleep in a long time, and I soaked in the hot tub and the whirlpool and it did wonders! Also my husband was having his aches and pains ( from chemo) and his tingling feet and he took a nice long whirlpool bath and he said he felt so good, and especially his feet felt so much better. So I think it's time you take some "you" time, relax, unwind, blow out the bad and breathe in the good.... Grace

Marco Jo, I am so happy to hear about your sisters' progress!!!! She is definitely responding well to her chemo. The one thing I definitely know about sclc is that it is a constant battle that you can't give up fighting....I know your sister can fight the fight, like I tell my husband, she is young and has her children to think about, having a fighting attitude is one of the best things one can have with this beast. Grace

Donna, I'm so very sad to hear about Mark s' passing, it all happened so fast. Praying for his family tonite. Grace

Missy, Your mom probably feels like she lives at the hospital, I know that's how I feel with my husband sometimes. My mom has this knack of taking care of others before herself, (and she's a nurse!)...so it's lots of pushing to get her to take care of herself. I hope your mom will feel better soon. Plus I can totally relate to you, everytime something new or different happens, it pains me so much to not know the outcome... Grace

Gail, I can only speak from my personal experiences. But with my dad, he did get somewhat confused as he grew more ill. I believe it was the combination between the incredible amounts of pain medication he had and the progression of his cancer, which was causing many of his functions to shut down. I am so sorry that you have to see your dad going through this I know how difficult it can be to see someone you love go downhill. I am sending prayers your way, for your dad and you. Grace

Estrella, My prayers go out to you and your family. Your brother was so fortunate to have so many loving people there for him. Grace

Lilly, Tell them when you get your blood tested, and your concern. If your platlets are too low, then you probably won't be having chemo. My husband had that problem last month, his got dangerously low and he ended up having a platlet transfusion, which the only thing that bothered him was that he had to wait a couple of weeks before his platlets got up an acceptable level for chemo. They'll be able to tell you tomorrow. Wishing you good luck!!! Grace

Holly, my husband had cisplastin and etoposide for his first time w/ chemo. Cisplastin can be very harsh on the body, and as w/ any chemo can cause side effects, but when my husband was on this, he had the neulastra and arensip (sp?), but he did feel the treatment after a few rounds. I'm pretty sure that cisplastin is the harsher of the two. But it is very effective in sclc. Grace

Michele, Don't give up! As you see from my profile below, look at all my husband has gone thru, I know it is so difficult, and everything you read sounds so doom and gloom. I was like that in the beginning when my husband was first dx. But realistically I can't live that way. Sure I have some really lousy days, moments, but they pass. Has my life changed? yes drastically, with my husband I just take the good days with the bad, I'm not going to kid anyone, it sucks, I hate this cancer, and of all to have sclc..don't even get me going...but stay strong, your mom needs you now more than ever before. You also know sclc responds very well to chemo, she's just started this journey, there are still many options for her, thats what the onc. tell my husband. I'm glad you joined this wonderful community. Stay in touch. Grace

Lori, Be there as much as you can for your mom, no one and I mean no one knows exactly what will happen for sure. The most important thing is that she doesn't have any pain, that was always the one thing I told my dad, no I promised my dad with all my heart he wouldn't have any pain, he didn't for the most part, but just to be around family was the most important thing, even the littlest of things, watching TV, drinking a cup of coffee together, or just sitting down next to each other, those are the moments that matter. Your mom has a great attitude, she's a fighter, thats a good thing. I pray that you all are going to be alright, please keep us updated, you got many here who care about you and your mom. Grace

Mary, I can tell you that my husband was so very, very tired after his radiation, he had whole brain for a month, and it was so draining on him, the radiologist said that he would be feeling the effects of it for some time after he finished, and I can tell you he did. But it's also a good idea to keep checking those blood levels, because if you're running low on any of your blood levels combined with the effects of the radiation it can send you for a loop. I hope it all turns out well for you. Grace

Good morning Chris, I'm glad you figured the pic. thing out. Brad was a very handsome young man, I can so understand why you are heartbroken, this disease makes no sense at all. Especially when it takes someone so young. Well I'm glad at least I gave you a good laugh about your daughters boyfriend ..... I'm off out in the rain.....take care!!! Grace