Remembering Dave
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Posts posted by Remembering Dave
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yeah, I'm wondering if it's not lung cancer related at all but allergies and sinus stuff.
that mucinex stuff is really good. I would try it, and see if it helps. I'd also make sure he doesn't have any pneumonia related problems.
take care,
Karen
p.s. you CAN'T gross me out!
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When Dave was first diagnosed and still in the hospital, two years ago, we had the initial meeting with his WONDERFUL, POSITIVE oncologist right there in the hospital room. He looked Dave right in the eye and said "small cell lung cancer is almost always caused by smoking. if you continue to smoke, no matter what I do for you, you will probably die." that's all it took for Dave to quit.
Smoking is a horrible addiction. I think some people are just more "prone" to that addiction than others, too, and for them, quitting is pretty darn hard.
I think your friend needs to quit, no doubt, but please go easy on him.
Karen
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of course, different cancers grows at different rates, too. small cell lung cancer is much more fast growing than (most) NSCLC, for instance.
that's why I think it's good to get a biopsy whenever you can, of new metastasis. to make sure you know what it is.
I believe melanoma is a realtively fast growing cancer.
I think ovarian cancer is.
Karen
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Peggy,
I didn't get on the internet all weekend. We had a wonderful time Friday evening and Saturday afternoon with my visiting aunts and uncles. Then we had an extremely rough day yesterday. very bad. mostly my fault, insofar as getting the bad day starting. anyway, I thought we'd hit rock bottom, but I just read our post and I have this odd mixture of feeling at peace, and also your words of wisdom kicked my bottom side out of my pity party because everything said is so true.
Now, I hope the absolute best for your son. that procedures sounds incredibly neat. like a very miniature heart catherization or something! please let us know how he did, and how he's doing.
and I know you are doing fine. I wish I could hold up as well as you do. you are an inspiration and a hero.
God Bless,
Karen
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I think everybody here has pretty much summed up my thoughts about your situation. I have SCLC Extensive now and am fighting harder than ever to beat this. I would definitely at least have a good sit down with this Onc. In my opinion an Onc saying he would not scan unless there are symptoms is total bull kuku. SCLC is very fast growing and usually does not get caught early, BECAUSE THERE ARE NO SYMPTOMS (or very little symptoms that could be anything). I have been on 3 different chemo regimes and my cancer has responded very well to all 3. Never say never and get him to another Onc as soon as possible is my final opinion I must say that I have been very lucky with all my Doc.s having a positive attitude. Also, if possible, make sure he has someone at all the appt.s to help interpret what the Onc. is saying. Someone who is not afraid to ask the Onc. questions and act as an advocat. Don't hesitate to ask questions and get up in the Onc.'s face if you do not agree with something. My wife is great at that. The patient has to have a positive attitude and must not ever question if they/we are going to beat this. I can't imagine not having confidence in my Onc. Hope my chemo and pain pill induced rambling has helped a little. Feel free to PM me or my wife at any time. My prayers will be you, your Dad and all your family as you go this.
Please come back and let us know how everything is going.
David C
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pretty funny. I think the CPT-11 is used for colon cancer - my mom has colon cancer, and I think they tried it on her. she's had several different chemos in the last few months because if there is a side effect, it's going to hit her, so they've been trying different ones. but I know she hasn't had topotecan.
you know, that carbo and VP-16 really seemed to work well, but on reflection, I think it's the radiation that really killed the SCLC the first time. I'm sure the carbo and VP-16 combo helped, but obviously it didn't kill every last cancer cell, since the darn stuff keep reappearing!
Karen
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This makes me mad. FIND ANOTHER ONCOLOGIST, AND DO IT QUICK. First of all, with SCLC, he should have had CT scans every three months, especially since they did see a small speck. A small spot is a small spot - it's not nothing.
Another thing - ask about the chemo topotecan. My husband Dave is on his THIRD bout of SCLC, and he's on topotecan, and so is Addie from this board (it's her second go 'round) and it seems to be working.
This oncologist is not interested in helping your dad fight. SCLC does respond very well to chemo. this can be treated. it can be more than pallative. and being in your '70's is not old! certainly not old enough to write someone off! no way!
I just don't think this oncologist has served your father very well at all.
Karen
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You got it, Don. Very scary. I hope it's nothing, or close to nothing.
Prayers,
Karen
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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
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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
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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
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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
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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
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wow, that sounds very encouraging, thanks for a positive update!
Karen
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get your eyes checked, girlfriend! alot of good suggestions above that could be causing it, but whatever it is, gotta deal with it!
Karen
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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
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Yeah - Jen - how's it going? Please let us know how are you doing!
We love you!
Karen
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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
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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
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God Bless you, Dean. you are awesome.
Keep on keepin' on.
Love,
Karen
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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
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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
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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
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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
Betplace..........thinking about you
in SCLC GROUP
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Pat, thanks for starting this thread.
Betty, you are undoubtedly one of my favorite people in the whole wide world. I really admire you. Little girl hugs and kisses from Faith, and prayers from me.
God Bless,
Karen