Remembering Dave

I think Addie is right. there are some people or some people under certain circumstances that PET scans just aren't any good. dave's onco doc always orders CT scans along with the PET scans. did she do that? I think you need some CT scans to back up the PET scans. Karen

Christy, Thank you so much!! David C

I have a coworker who's mom had that for a brain met last week. I think she has liver cancer mets to her brain. he said she walked out of the hospital that day, no headache, and never got one. I imagine lots of things depend on how it affects you, maybe like where the tumor is located in the brain. I'd do it. the side effects have got to be very temporary and not that bad. Karen

Sounds like pallative treatment to me. Just to get pain and stuff under control. Your husband's father can sign papers allowing the docs to talk to your husband. he should ask your father to tell the doc he wants that. This has got to be tough for you, having watched your own parents die from this awful disease. Keep being so supportive, I know you know how important it is. Hang in there, Karen

Dave took carboplatin for his first chemo treatment. Carbo and Vp-16 and quickly went into remission. For his first recurrence, he had cisplatin and CPT-11. that was for one skull met. skull met died (probably the radiation got it) but he apparently developed tons of other mets while on this chemo. cisplatin will mess with your hearing. Dave had some minor problems, and JCAWork (Jen) has some perm. hearing loss in one ear from just a few treatments of it, if I remember correctly. soo, in my opinion, your dad is probably better off on carboplatin. I read somewhere, or maybe the onco doc mentioned it, that cisplatin and CPT-11 worked GREAT in trials in Japan, but isn't doing so well in the U.S., so could be a difference in genetic make up. Karen

Andrea - God is looking out for your Mom, she's finding stuff EARLY on, right? that is GOOD. It is TERRIBLE that all of this is happening to her, but things are being caught early and dealt with. I really wish, though, that there was an easier and simpler solution than what you just outlined. Both sound pretty invasive. I don't know what to say, except that somehow God gives us the strength to carry on, and you will, and your folks will, too, and before long this will be over with and she will be OK. Hang in there, kiddo. Karen p.s. I have PCOS, too, take metformin for it, so am familiar with that. you are going through alot right now, I know, been there, done that, and the hormones don't help, either. Just hang tough.

The concensus I have found on followups is every 3 months. My Onc. Alternates CT scan and PET Scans. Of course now that my cancer appears to be on the move ( I've got it running scared ), I am getting more frequent scans. My thoughts and prayers are with you. David C

You go, girl. I was wondering what was going on, your PM you sent yesterday said to look at your post (or was it a post to one of our threads) and I looked and looked last night and didn't see it so was going to call you today to find out. Well, good for your doc. I'm assuming your health ins. paid for all this great loot? Will try to call you later on, but it sounds like you're getting taken care of, hopefully better sleep is going to improve how you feel so much you'll be so much better all around! God Bless your wonderful family (especially your rockin' mom) Karen

worked it all out. talked to the case manager at the ins. co. it is covered under his prescription drug plan, only by the mail order service, so she is going to talk to the nurse manager at the onco doc's office and tell her how to get it approved, ordered, etc. Dave hasn't decided for sure whether to do it or not, but at least we know we can do it, money wise ($40 for $3,000 worth of drugs!). The thing is, and Betty is confirming it, is that fluid retention being a big side effect could be quite a problem, since Dave is having the fluid/sodium problem anyway. so we need to talk it over more with our good Dr. S. thanks for all the input! karen

Every kind of cancer is different. If his gastric cancer has spread to his lungs, it's not lung cancer, it's gastric cancer in his lungs. Gastric cancer, the tumor cells, are different than lung cancer cells, and won't respond to the same drugs. every kind of cancer has different drugs to treat them. Just like you don't treat a virus with antibiotics, and even different kinds of bacterial infections require different antibiotics. Does your Dad live in China? Or is he American, visiting there? If so, can you get him back home? If not, can you get him to Shanghai? I bet there's at least one decent cancer treatment center there. Long and short, everyone here would like to help you with advice, but if it's not actually lung cancer there's not a whole lot we can do. By the way, our daughter is Chinese, adopted from Anhui Province, which sounds pretty close to where your Dad is. Best of luck, Karen

Well, dear friend, you should have shared some of this with us a long time ago! I know how you feel, sort of. In a way, we are selling our house now so we won't get in a jam later, if things don't improve, if Dave doesn't improve, if finances don't improve, so I understand. it took us a good six months to decide to sell our dream house, I couldn't bear the thought of "giving up" what we worked so hard to get, then I told myself, and you will, too - it's only a house, it's only material things. A home is where you hang your hat, OK? You WILL get through this. Just take one hour at a time, do what you can. I like Fay's idea of Tennessee. Sounds good to me! Hang in there, kiddo, and keep us posted. God Bless, Karen

Jamie - what results came with the needle biopsy? Karen

Maryann, I JUST got off the phone with Dave's case manager at his insurance company. She has just been assigned to his case and didn't have our home number so called me to introduce herself and see how things were going. wish I'd thought to ask her about that. But everytime Dave goes in for labs, he has a $20 copay. Chemo, $20 copay. Doctor's appt., $20 copay. I'm gonna give her a call back and ask her when I get a minute. I wonder if they are nickeling and diming him when they shouldn't be? and yeah, it's something relatively harmless for him to gripe about, for sure! Karen

Pat - read it just now really quickly. Well, the first thing that struck me, and struck me in an amused way, is that all the side affects it lists are just like most of the stuff Dave is currently experiencing - or my mom - or Dave and my Mom combined . . . except for the allergic reaction part. that's something new. anyway, Dave gets those side effects and they don't really bother him that much, so I don't think it's alot to worry about with him. the allergic reaction stuff, though, hmmm. Fay - the links worked. the one on neumega was interesting because it said it could make you retain fluid and Dave cannot retain fluid, that makes his sodium level decrease - so I will bring this up with the onco doc. thanks for the links! anyone out there getting these shots and having allergic reactions? thanks! Karen

When Dave's platelet counts were down week before last, I asked the onco doc's nurse about neumega and she said they didn't like to give it, they didn't see it working well enough to be "worth it." Our Betty (BetPlace) gets Neumega shots, and that is where I got the idea from to ask. Today Dave is getting a transfusion (see Test Time forum for details) and he has to get daily neumega shots along with it. So I'm thinking, OK, two weeks ago it wasn't good enough for them, now he HAS to get it? I did a search on Neumega on this website but didn't come up with anything recent except for Betty's post - and two or three older posts that just mention it. So I'm wondering - anyone else out there using it? Any side effects? Dave said "they" told him it's got nasty side affects. I printed the patient information from the Wyeth website but it's so technical and I haven't had a chance to read it, plus, I'd rather hear about some real experiences with it because you can never tell what's really likely to happen from the package insert, you know? Anyway, Dave said he has to go to the onco doc's office to get the shot daily, and every time he sets foot in the place it's a $20 copay, not to mention the inconvenience. I called our wonderful pharmacist and he said he's not licensed to give the injection or to order/sell it either, so that idea is out. thanks in advance to a wonderful "Brain Trust"!! Karen thanks all, Karen

bump

Darn, Addie, just saw this. I'm sure Dave hasn't seen it or he would have answered. I don't know his topotecan dosage but he might although he doesn't pay a whole lot of attention to some details like that. see my post under Test Time about what's going on with him today. apparently the "Addie Plan" was rougher on his platlets then the "normal" plan! He doesn't have much nausea, he doesn't even take the zofran pills he's got, but I'll make sure he sees this about that new antinausea drug. He's on a daily dose of decadron 4 mg, for the brain swelling anyway. I imagine he'll go back to the old fashioned way of taking his topotecan, of course, he could do it this way, and then get a blood transfusion every other week Karen

some good news!

Patti, thanks for letting us know. you have one first class brother! and you sound like a first class sister! and of course Connie is a first class wife! OK, do I like ya'll, or what? anyway, please tell Frank we are thinking of him and praying he can be home by the weekend. God Bless you and your family, Karen

Wait a minute. Is this a 2 month break from steroids or a 2 month break from treatments. Heck getting off steroids is a blessing in it's self!! David C

WOW!! TWO WHOLE MONTHS!!!!!! I don't know if I could do that. Fry us up some fingerlings while your up in 'dem 'dare hills. Truely beautifu country. Y'all going anywhere near Banner Elk and Lee's MCcray College? Enjoy the break and slay them fish!!! David C

Hey, Deb, Katie's husband had colon cancer. I remember this vividly, because not long before he was diagnosed, he was a partner in the NY office of the law firm I worked for. He left there to be a consultant to NBC news (legal analyst). Prostate or colon, either one seems to strike older folks more than folks in their '40's. It was a real tragedy. I'm surprised more people in the spotlight haven't gotten LC. Really interesting to see where he goes with this. Of course, he may be like many of us, so consumed with fighting and trying to keep our lives afloat, not enough time for advocacy. Karen

crap! that's all I have to say . . . Jen, the part about all the young people in the same subdivision with LC is truly frightening. Karen

Beth - who? Karen

I wouldn't assume it's late stage because he's starting chemo soon. they may have been testing him and working on his diagnoses for some time, and keeping it quiet, appropriately so. Also, Dave was first diagnosed with LIMITED SCLC and they started chemo on him while he was still in the hospital, within just a couple of days, literally, of diagnoses. I suppose once it's clear what needs to be done often it just gets started. I'm going to post him some well wishes and mention the site as well. But mostly because I think he mentioned something about trying to deal with this or looking for support. I really hate to hear of anyone being diagnosed with any cancer. Karen