Remembering Dave
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The radiation oncologist sent Dave's bone scan report and latest brain MRI to the neurosurgeon. the neurosurgeon's assistant called yesterday and said he wants ANOTHER brain MRI, so Dave is getting that done today. I told her he just had one two weeks ago, but she said that wasn't recent enough. Monday afternoon we go see him with the bone scan films, and hopefully he'll make a definitive conclusion as to what is going on with Dave's noggin' - brain tumor, skull tumor, or both (sure hope not).
Monday, he also gets head and chest CT scans, ordered by the onco doc. Sure hope they look as good as the bone scan appears to look! we meet with the onco doc Wed., so by then we should have some real answers on what's going on
Prayers for my wonderful hubbie!
Karen
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prayers going for you, Brian.
I don't blame him for wanting to wait. sometimes it's better to get results face to face when you can have them fully explained.
I, too, have good feelings on this one!
God bless,
Karen
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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
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I still think you have a fungal infection or something!
I'm voting for NED myself.
Stay cool, hang in there, everything will be fine!
I'll try to call you, if not today, tomorrow.
Karen
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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
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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
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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
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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
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Jamie - what results came with the needle biopsy?
Karen
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update - Dave didn't get a plaetlet transfusion, just red blood. I could have sworn Dave told me platelets, but he didn't, and then in a lucid moment explained to me (after the onco doc explained it to him) that platelet transfusions don't last, you get one, and then two or three days later your counts are down again. So he just got plasma.
That's OK, he's got two more weeks before chemo again, hopefully his counts will be up from 29,000 to near 100,000 by then, or at 85,000 he can get the "Addie plan" way of getting chemo.
Anyway, he's home from the hospital and napping and doing OK I think.
I saw "our" onco doc with my Mom not long after Dave was cut loose from the hospital, a follow up from her latest CT scan. Her four liver tumors are "stable" except the biggest one has grown a teensy tiny bit. But that's not bad for colon cancer, which I understand is pretty slow growing. anyway, Mom and the onco doc were trying to figure out which tumor was which - "is the big one the one over on this side or that side" kind of thing, and I said, you guys should name them, you know, Harry, Fred, Bubba, Tom, something like that." My mom said (good answer) I don't want to give them enough justification to actually give them names!
Anyway, things looking up for us, for the time being.
and someone's coming down from D.C. to see our house today, hope they buy it!
Karen
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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
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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
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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
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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
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some good news!
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Dave's radiation oncologist, Nurse, Ruth, is one awesome lady. Even though his bone scan was done at a private hospital not affiliated with the big medical center they work for, Dave dropped the CD of the bone scan and chin xray off to them on Monday and she had the radiation oncologist read it. She called me on my cell this morning on my way in. I had to call her back TWICE to make sure I got it all right. Anyway, he has a spot on his skull above his left ear. I said, oh, that makes sense, that's where the brain tumor is. She said, well, now "they" don't think that's a brain tumor. it looks like it's a skull met, just like the sinus met he had, and it's pushing into the brain therefore it showed up on the brain MRI. ("they" did tell Dave the brain tumor was on the "surface" of the brain). Would I rather him have a skull met than a brain met? YOU BETCHA. Give him some radiation treatments and zap that baby off the face of the earth! His cancer seems to respond REALLY well to radiation!
Now on to the spine, pelvic bone, left hip. Spine and left hip: not enough uptake to be remarkable. In other words - SIGNIFICANT REDUCTION, ALMOST GONE!!! PELVIC BONE - NED.
NOW, DAVE HAS ONLY HAD THREE OUT OF SIX CHEMO TREATMENTS DUE TO LOW PLATELETS, AND HE GOT THESE RESULTS.
GOD, YOU HAVE ANSWERED OUR PRAYERS. PLEASE CONTINUE TO DO SO!!! I LOVE YOU GOD.
On Monday Dave gets a full body CT scan. I pray the liver met is now gone, and everything else is NED!!!!!!
NOW, FOR SOME BAD NEWS, BUT BAD NEWS WITH AN EASY SOLUTION. Dave went in for labs and procrit shot today, and his platelets had plummeted to 29,000! and his red blood was 8. So, he's going to the hospital this afternoon for a platelet and plasma transfusion. I'm glad. Someone tell me if I'm crazy, but I'm glad it's low enough this time for a transfusion, because we are solving the problem, not just sitting and waiting for it to rise. Although his shot up fairly fast week before last. He's probably going to have to spend the night, but he's getting his Dad to bring him the laptop, so he can get on line from the hospital and post.
I should have waited for him to post his good news, but I was so excited I couldn't wait! SORRY, DAVE for stealing your thunder.
I'm actually looking forward to a nice relaxing evening in Dave's hospital room with him. another one of our romantic dates!
God Bless,
Karen
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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
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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
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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
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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
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I'm so very sorry, Andrea. I think this is scary. I really do. But at least it was caught, you know?
My prayers are with your wonderful family!
Karen
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Beth -
who?
Karen
Update on my mom
in GENERAL
Posted
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.