Remembering Dave

You got it, Don. Very scary. I hope it's nothing, or close to nothing. Prayers, Karen

Hey, Maryanne, they're actually staying at a motel halfway between our house and my parents' house, so they can spend time with all of us and not burden anyone - good idea, I don't think we have room for all of them, and my mom is so sick, she says they wouldn't burden her but when she has company in the house she doesn't give herself any down time. one uncle is recovery from heart surgery so this way everyone has a place to retreat to when they need a rest. yes, it seemed like a miracle, Dave feeling so much better although I have my suspicions about how much oxycontin and percoset it took, ha! Karen

Wow, his disease is following about the same pattern as Dave's, it looks like (different parts of the body, but about the same time frame). What chemo was he on for his first recurrence? I'll have to get Dave to speak to the side effects, but Addie is taking topotecan right now as well, she may be able to add more. Since Dave has bone mets he's also getting zometa (see my post about his pain) and so the day after chemo/zometa he has excruiating pain but that is probably the combination of the two. Dave also seems to tolerate chemo much better than alot of folks, and the biggest thing he has is the feeling all over like he's been hit by Snowflake's beer truck. But he needs to post here, because he has issues that he just never talks about so I just don't know. Topotecan seems to be a good chemo for SCLC. I don't know why they don't use it more. Some doc told me that it's actually an older chemo for SCLC, and then when the newer drugs came along, like carboplatin, cisplatin, VP-16 and CPT-11, they started using those for first line. but topotecan seems to be pretty effective. I wish him well. I hope he is holding up strong through all of this, especially with his heart problems. God Bless, Karen

Hi, everyone! I hope Dave gets on and posts, he was feeling MUCH BETTER this morning, he was up when I got up, and he fixed and fed Faith her breakfast (he hasn't done that in a long time) and was in such a good mood he was talking about driving himself into town and visiting his office, which he literally hasn't set foot in for almost a year. I told him he'd better post because some people are thinking I locked him up in a closet or something, but he just made one of his he man grunt sounds. so, I suppose saving $20 is worth just one day of awful pain, ha. Yes, my aunt and uncle are on their way over right now, and bringing along another aunt and uncle, too. they're all fairly entertaining in their own little charming ways, so I'm really looking forward to it! Karen

yes, you must be Jen's sister, this sounds just like her. Listen, she knows my husband Dave's story, but he was diagnosed in March 2003 with SCLC limited, had chemo and radiation and PCI, was in remission for almost a year, and then it came back, just in his right forehead skull/sinus area, had chemo and radiation to it, they think it is gone, but at the end of that treatment found mets all over the place, bones, liver, skull, he is now undergoing his third chemo regiment and he is fighting hard. Why? because he wants to live. he wants to help me raise our beautiful daughter, who is 3.5 and adopted from China just five months before his initial diagnoses. and because he refuses to let something like cancer defeat him. I wish her the best. I hope she can do what it takes to fight this thing. a positive attitude, strong will to live are key. and so is strong support from family, which she definitely gets from you. take care and please keep us informed. God Bless, Karen

Bad adrenal thing, Bad adrenal thing, Bad adrenal thing. I am so sorry to hear this Sandy. I know what you mean about loosing the summer to this crappy stuff we go through. It is soooo pretty outside right now and here I sit in my worn out Lazy chair and my butt hurts sooo bad I can barely walk ( hip Pain )unless I am so high on pain pills that I can barely walk, Hang in there Sandy. You need to get yourself one of those bikes without wheels for your recovery time. Netflix is also great. Big prayers coming to you. David C

wow, that sounds very encouraging, thanks for a positive update! Karen

get your eyes checked, girlfriend! alot of good suggestions above that could be causing it, but whatever it is, gotta deal with it! Karen

welcome back, Stephanie. I missed your smiling face, and you do look so much like your mother, we still have some of her with us, in you. Karen

Yeah - Jen - how's it going? Please let us know how are you doing! We love you! Karen

Kel, I want to wish your mom well and speedy healing. I went back and read your top post, and you know, the part about the bone pain really struck home. Dave has it, too, and he says there's nothing like it. I really hope she heals fast and continues the fight. she is a strong woman and I admire her. by the way, is the photo of her or of you? God Bless you and your mom, Karen

Crap. double crap. no, make that triple crap. But you know, you are young, and you are strong, and you are healthy, and you've beat this once, you'll have this surgery and recover and everything will be fine after a while. In fact, I bet you're on that bike before the summer is over! And I didn't know you had a new man, good for you! Cancer is stressful for any relationship, but if you hooked up with him, he's got to be a good guy, I have confidence everything will be fine in that department, too. Keep us posted on surgery dates, etc. God Bless, Karen

God Bless you, Dean. you are awesome. Keep on keepin' on. Love, Karen

Hey, this is Karen. Don't want anyone to think I am speaking for him, and that I'm not letting him on the computer or something (trust me, that would never happen) but he had his chemo yesterday (topotecan) AND his zometa (the IV drug that builds bone growth) and every time he gets them together, he has EXCRUIATING pain the next day. this morning he got up and screamed at the top of his lungs, just trying to sit down in his recliner (his command post). It was awful. but I admit to being slightly annoyed with him, because when this happened the first time he got topotecan and zometa together, the onco doc said it was probably getting them at the same time, the bone drug (which is acid based) was probably delivering that chemo right into the bones, causing extra pain, so the new game plan was to give them to Dave separately, not on the same day, but days apart. Well, Dave has decided that he's tired of paying a $20 copay every time he walks in the door there, so he asked to get the zometa and chemo together this time to save himself $20. That's why I'm annoyed. What's $20 when you're in excruiating pain? I'd say paying an extra $20 is worth avoiding some extra pain. So half of me is watching him, cringing, feeling so very bad for him and wishing I could DO something, and the other half of me just wants to kick him in his backside!!! He's probably going to read this and be absolutely furious with me. I LOVE YOU HONEY!!! anyway, he read the thread last night looking for him, but felt too much like doo doo to post back anything. I think he is planning his come back, though, in full drag, as soon as he is up to it. Watch out! Karen

Again, I'm really curious about you getting Tarceva, Jen, because you have SCLC, and it's just for NSCLC, isn't it? I'm confused. If it works for SCLC, I want to get it for Dave! Karen

Frank, I ditto everyone else who has commented on your optimistic tone of voice. truly wonderful! I've done a little bit of research and asking questions of the neurosurgeon about the gamma knife, and yes, the reason they haven't used it much anywhere but the brain is because every other part of your body has some sort of natural movement to it, and it has to be used someplace that stays ASBSOLUTELY still, and the brain does. I like the idea of the seed thing much better. And Connie and Fay both know folks with good success with it. hang in there, we love you! Karen

Wow, a brain scan on Friday, and brain radiation on Monday? Can't ask for quicker actin than that! Am so glad they got right on it. Hope it gets zapped away for good and soon! God Bless, Karen

Hey, guys and gals, fans of Big Dave, I hope he posts soon . . . but the truth is, he's not feeling very well these days and doesn't have much motivation. Plus, the 'puter at home got a virus and he was afraid to get on line until he fixed it I think. He doesn't feel well enough to converse with me much (the little tiny bit of time that I am at home!!!!) so I'm not sure what the status of the virus is at this point. But I will add "posting to LCHelp" to my list of naggers. He's pretty beaten up, or down, or whatever, poor thing. He's been through ALOT in the last two years, and even for a big healthy 40 year old, it's getting pretty hard on his body. Anyway, I talked to him about an hour ago, and he was on the way home from chemo (his Dad drove him, that's how beat up he feels) and I'm trying to leave him alone, every time I call him I get this "what now" sort of tone of voice, I think the phone wears him down, too. but I will try to get him on line next time we speak. by the way, my favorite cousin is the Operations Director for the Las Vegas tourism bureau. After Dave is well, I betcha he could get him a sweet gig as a drag queen in some fancy show out there! yuk yuk Karen

Thanks. I don't always give my mom the credit she deserves. she doesn't handle any drugs very well - I'm talking about aspirin, antibiotics, antihistamines - imagine what chemo does to her . . . but when it comes down to the nitty gritty, she faces realty and marches forward with her head up. she really is a good, sweet person who absolutely always looks for the positive in everything. I can't say that I do that, in fact, sometimes I wish she'd stop being so NICE, ha. Ry, I do not remember about your friend with the pump, but you probably told us and I've forgotten in all the flurry of things going on. That is good news to hear. I'm thinking more and more that in my mother's situation, that pump may be the best thing after she's all healed up after surgery. well, gotta get to work, thanks for all the words of encouragement! Karen

Yeah, she's pretty articulate for 72, that's for sure. OK, 72 isn't old at all. . . . anyway, I forgot to write the appt. down, I was going to tag along, and she didn't remind me, intentionally I am sure, and I'm glad, because I definitely have a full plate AND my mom and dad seemed to make all the right decisions. I'm just a little skeptical about the liver infusion pump. Our onco doc says very few surgeons are doing them any more, they haven't proved to work any better than regular chemo, BUT, since my mom is not tolerating chemo very well, maybe a dose directly to the problem area will give her less general side affects. Dr. Brown, the liver surgeon, seems to love these infusion pumps, he really pushed the idea last summer when she had the first liver met. Karen

I guess most of you know my mom is fighting Stage IV colon cancer. Here's an email I just got from her. This isn't lung cancer related of course, but we could use some good thoughts, and maybe it will help some folks understand why I'm so tired and stressed . . . (this is from Karen - Karen's mom): "I went to see the liver surgeon, Dr. Brown, today, at the suggestion of Dr.Schwarz, to discuss my recurrent liver tumors. I will be having major liver surgery sometime in the near future. I have to wait a week after I stop taking the blood thinner, Coumadin, for the current blood clots in my right leg. My prothrombin time (Pro Time) was okay today, so I won't need any more shots of Heparin (Lovenox) at this time. I am scheduled to have a PET Scan (full body) on Monday, May 2, at Henrico Doctors Hospital - Forest. After the surgeon and the oncologist review the results, they will set up the surgery date. Dr. Brown told us that this will be extensive major surgery, and I will likely be in the hospital 7 - 10 days. He will do a laparoscopic procedure first to view the area, then will do regular surgery to remove part of my liver in two separate places. (He said removing enough of my liver won't be a problem, as it regenerates quickly and also you can have up to 50% removed without creating a problem.) This isn't my ideal way to spend the summer, but if it must be done -- the sooner the better. I'm not totally surprised, as he had told me that liver tumors have a tendency to recur because the liver is so spongy that cancer cells are impossible to detect before they become tumors. In addition, during surgery I will have a screen inserted in a major vein to prevent clots from traveling to my lungs/heart in the future. I will probably also have a pump installed (through a new, larger port in my abdomen) to dispense chemo directly into my liver. We'll let you all know when a surgery date has been set up. There are many risks for all of this, but the success rate is high. Pray for strength and courage. Love, Mom"

Kel, Somehow I missed the part about your Mom having to fly back to Canada. I'm so sorry she's going through this ALL AT ONCE. I don't know what else to say, except know that everyone here loves you and your Mom and really cares about you. God Bless, Karen

I'd go easy on the cancer stuff - if she didn't want to discuss her cancer when you were there for a week, she probably isn't that keen on having reminders of it around either. Just my opinion. I'm really sorry everything sounds so dismal. I think that SCLC with mets to the bones can be treated more aggressively than hers has been. Maybe she knows all her options, doesn't want to be that aggressive, and doesn't want to discuss it either, as to avoid any pressure to change her mind? Just speculating here. Maybe your sister in law can shed more light on things. But I'd make it the nicest mother's day you could. maybe another trip to see her is in order? God Bless your family, Karen

Jen, that hospice program is the best. Everyone should have access to that. Your poor Dad, this must be heartbreaking for him. I pray that everything looks OK or at least is fixable on the scans. God Bless, Karen

I responded to your post in General. I also want to ditto EVERYTHING Addie said above. please read my post in general and don't give up, don't give in. Love, Karen