Remembering Dave
-
Posts
1,914 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by Remembering Dave
-
-
CPT-11 didn't work for Dave, either. He had the Japanese cocktail, CPT-11 and cisplatin - and he got lots of new growth while on this combination. It seems to work for the Japanese but the genetics in race are just different enough it doesnt' work as well for other races, I read that somewhere on the internet in my flurry of trying to figure out what's going on with Dave.
He's now TRYING to get topotecan but never gets its because of low plateletts. but you might consider that, Addie is on it as well -
Karen
-
I'm really disappointed and worried. Dave went for in for chemo today and his plateletts were only 78,000 so they didn't give him treatment. he didn't have chemo last week because they were 70,000. This was supposed to be the fifth week of chemo and so far he's only had two treatments. I have a call in to the oncologist because we have to do SOMETHING. Just sitting around and waiting is not going to kill this beast. I did some research and you have to be down to 20,000 to get a bone marrow transplant, from what I read, but I wonder what else we can do?
I have a call into the oncologist. his nurse just called - I told her, I want to talk to the doc - I cannot just sit around and watch my husband die while we wait for his plateletts to come up. so she's going to have him call me.
Karen
-
YIPEE!
YOU GO GIRL!!
I'm so so happy for you!
Karen
-
Dave has a liver met which he would have never known he had except for a routine ct scan.
my mother has stage iv colon cancer with four liver mets. Big ones. she'd never know she had them, either, except for a routine ct scan during her treatment.
Karen
-
well, to the "never seen a met there" comment, famous last words, since it probably took two months to diagnose Dave's bonkitis met since all the docs said that about the bonkitis. having said that . . . I dunno, I think I'd just want the darn things taken out anyway. you're done with them, right? and ovaries in my book are just a cancer magnet anyway, right? although I think it sounds very reasonable to wait six weeks and rescan. the reasonable side of me says do that, the I Hate Cancer part of me says yank 'em out. I lost a good friend at age 38 to ovarian cancer so I hate the darn stuff.
Keep us posted, this is very interesting indeed.
God Bless,
Karen
-
I vote for infection. especially since sometimes three show up, sometimes four? and that would make sense with the pleurel effusion too? wouldn't it?
regardless, you're right, don't let it win, fight fight fight!
God Bless,
Karen
-
We're back. it was great to walk into a CLEAN house (the cleaning guy came Friday, our realtor held an open house on Sat.). BUT, I got SICK while we were gone, we're talking running high fever for two days, couldn't get out of bed, sick. Dave did GREAT. lots of energy, did all the driving, took care of me. not getting his chemo this week probably helped alot with that . . . but it was nice to be sick next to the seashore anyway! Faith went to visit her cousins with Dave's parents and it sounds like she had the time of her life - the center of attention of a bunch of neighborhood eight year old girls. can't beat that for a three year old.
the realtor had a very successful open house, 22 couples showed, and he's going to be working with one this week to see if they can sell their house and be able to put an offer on ours. Keep everything you have two of crossed that this works out!
Returning the hall pass . . . .
Karen
-
gee, thanks, guys.
if you read my post under Request a Hall Pass (turning it in) I was sick as a dog the whole time but it was still nice to get away. we had two nice seafood dinners before the fever hit full throttle.
and I forgot about the speeding ticket! Yes, it was DISMISSED. The cop that gave the ticket to Dave was absolutely wonderful. In fact, while waiting to go into court, several people remarked on how nice, almost apologetic he was about giving them tickets. He's a captain in the county sheriff's force. I found him before court and he told me he was going in to ask the county attorney to dismiss it. after we were seated, he came up, knelt down and shook Dave's hand, told him it would be dismissed, and told him that he was praying for him every day. He was a kind, sincere, wonderful person and I am going to write the best thank you letter ever written to him, along with a photo of Dave and Faith, so he has a visual to pray over, maybe he can post it in his church or something. It was really a good experience.
Karen
-
Lonely, wish there was an angel who would come down and tell me whats gonna happen and when.
Beth, honey, I love you to death, but don't do this to yourself!
It doesn't even matter about the cancer, like Snowflake has said, you never know when that damn beer truck is going to hit you!
And live like DeanCarl - LIVE each day!
and like BetPlace says in her signature line - every dawn is a victory!
These are all things that stick with me and help me not be so anxious about my future with Dave. they really do. and if you live like this, in constant fear, not only are you letting the cancer win, but you're missing out on some real life! AND, these thoughts are what's keeping you up at night, more than any physical discomfort.
take a deep breath . . . .
Love ya,
Karen
-
Like someone above said "LIVE STRONG" as long as you do, the cancer doesn't win, no matter what!
and Yes, love the new staging - IIIBC. it's NOT out of your lungs, and we still aren't positive that it's cancer and not some weird fungus, right?
hang in there, kiddo!
Karen
-
Dave shaved his head as soon as he started losing his hair - actually he went to a hair cuttery and had them do it - he didn't want to have "chemo hair" - and everything was fine, no problem with the scalp.
Karen
-
We're back. it was great to walk into a CLEAN house (the cleaning guy came Friday, our realtor held an open house on Sat.). BUT, I got SICK while we were gone, we're talking running high fever for two days, couldn't get out of bed, sick. Dave did GREAT. lots of energy, did all the driving, took care of me. not getting his chemo this week probably helped alot with that . . . but it was nice to be sick next to the seashore anyway! Faith went to visit her cousins with Dave's parents and it sounds like she had the time of her life - the center of attention of a bunch of neighborhood eight year old girls. can't beat that for a three year old.
the realtor had a very successful open house, 22 couples showed, and he's going to be working with one this week to see if they can sell their house and be able to put an offer on ours. Keep everything you have two of crossed that this works out!
Returning the hall pass . . . .
Karen
-
Tess, that is just unbelievable. You poor thing. But you probably are right, God has called on you to care for your sick family members, because He knows you can do it. Hang in there, keep us posted. I hope things go smoothly with your dear mothers.
-
prayers. can't wait to hear a good report!
Karen
-
Hey, Cindi - no Faith in the pool - Faith is going to Dave's sister's house with her MomMom and DadDad while we're gone - so we she play play play for three days with her beloved cousins she loves so much! We figure she'll miss us less going up there - plus Dave's sister's husband is doing St. Baldrick's again this year - those of you who have been on the board for a year will remember Dave did this very worthy fundraiser last year - folks raise money to have their heads shaved to raise money for children's cancer research. Anyway, that's Thursday evening, at an Irish Pub, so Faith gets to do one of her favorite things - hang out in a bar with her cousins, hahaha.
No, everyone - his potassium level is fine and has been all along. I just have to wonder if it's partly the decadron and partly the oxycontin. I really don't think he needs much of either right now since his head swelling is getting better and that was the source of his most persistent pain. I told him that way, if he gets more pain from the zometa (for bone growth) then he can take the oxycontin.
I am SO looking forward to three or four days of SLEEP. No cute little face waking me up at 6:30 am every morning! I woke up this morning with a back ache and a bad cold, then went for Phase III of my root canal. So I am miserable and ready for a rest!
Karen
-
Hello all, I went in to get my 3rd round of chemo (Topotekan (sp?) ) , however was not able to get it due to my platlets were down to 70 on my blood counts. I have also STILL been having leg cramps during the night to the point that I am up every hour or two massaging them away. The docs have checked everything that they know of and find no reason for the continued cramping. My sodium level is 141, I have been given several different Rx's which have not worked and have also tried Quine Nine (sp?) with magneseum pills from the health and vitamin stores. We are going to play around with the dosage of some of my medication to see if maybe that could becausing it. I am going to cut back slightly on the evil Decadron (steroid) and the Oxycontin (Hillbilly Heroin). I am thinking that with the peas in the brain there is still some swelling and pain although it should get better as the peas continue disintegrate.........and they will go away permanently, have no doubt. They will probably reduce my Topotekan chemo dosage sice I am supposed to get the chemo once a week and so far I have had to skip two weeks due to my platletts being under 100. Unfortunately this means a longer wait between scans. I was supposed to get scanned once every 3 months but if I cannot get the chemo in me it won't have a chance to take hold so we will have to extend the time between scans as much as the time it takes to get the chemo working. I really want to see what is going on with the liver, spine and hips. I got my shot of Procrit and came on home. Needless to say, today was a bad day compared to most due to the way I feel. Just a little worn down from lack of quality sleep I think. Karen and Faith were in a great mood tonight, Faith and I went to visit momom and dadad ( in thier 40' 5th wheel travel trailer parked in our backyard) and poor thing was so tired she would jump off my lap and do something for a minute or two and then come and jump up in my lap and snuggle up for a few minutes until something els caught her eyes for a minute. Karen worked on some Farts and craps........oops sorry I meant Arts and Crafts. Doing something with dead flowers and plastic twigs( you would think we live in CA.......sorry could not resist) I cannot tell you how much we are looking forward to our trip to the Outer Banks of NC. It is likely to be a little chilly still but we are not going to do any swimming unless there is an indoor pool, there better be for the money we are paying. I spent today trying to make sure I was stocked up on all my drugs to take with me and tomorrow will have to double check. everything. I feel as if I have rambled on enough here. I cannot tell you how much support you have all given to Karen and I and I really cannot start to express our thanks to you all. Karen and I are going through a very scarey time with all my latest news but to me it's just another hurdle to clear. And I will. I beat it not once, but twice and I will continue to fight and beat it back. God bless us all, each and every one.
David C
-
Awesome news. Keep it coming.
David C
-
HAPPY BIRTHDAY LUCIE!!!!!!!!!!!!!!!!!! WONDERFUL NEWS!!!!!I toasted your b-day with a cup of the best well water in King William County VA. Hip, hip, hooray and hears to many more birthday celebrations.
Never say never.
David C
-
Bill - this is something I totally agree with you on. It's absolutely insane that some clinicians write folks off. I experienced this in a very small way this weekend when I took Dave to the ER for excruiating pain and got the most cold hearted blunt physician's assistant that ever walked the earth (more explanation in our post). That is very small next to what you've experienced with your wife's medical care. but I got a taste of it. Fortunately we don't get that with Dave's oncologist. Dave is on his THIRD bout of EXTENSIVE SCLC which is REALLY deadly stuff - agressive, mean, fast growing cancer - and his oncologist promised him he would never give up on him and would keep trying everything. The same oncologist is treating my mother for her Stage IV colon cancer and he's put out with her because she's not fighting hard enough - and he's far from given up on her!
Just keep fighting, making your case, and firing those who don't agree with you. Karen is right. Our Lord Jesus and our Father God in Heaven are the only ones who have the final say over our destiny. Not the docs.
Hang in there. vent here as you need it. as you have seen, many of us have needed venting in the past, for smaller things, but obstacles are obstacles when you're beating back this awful beast.
God Bless,
Karen
-
well, I posted the results in General, but if you didn't see that post - no brain mets, just radiation damage, which seems to be reversing itself, yipee!
Karen
-
HAPPY BIRTHDAY TO A VERY SPECIAL LADY!
HAPPY BIRTHDAY TO A STRONG FIGHTER!
AND MANY MORE!
With Love from all us Chapmans!
-
welcome back! it's really not the same around here without you! we are so selfish, we just want you back on the board, no matter what!
sure hope the new plan of actions kicks the crap out of that obnoxiousness going on in your chest, Frank. You deserve better.
You WILL make it to your 100th birthday!
Luv ya,
Karen
-
Me 14.
Karen
-
I'll try to give you a call today.
Does Dave's empty head help you a little?
We love you!
Karen
NO CHEMO AGAIN FOR DAVE
in SCLC GROUP
Posted
Karen - THANK YOU.
Dee - nothing you can do for plateletts except a bone marrow transplant if it gets really low. the shot is for your red blood count. that's either procrit or aransep. sure wish there was a shot.
I talked to the onco doc. I begged him to try to think of something, if we just sat and waited week after week for Dave's plateletts to come back up he was going to die and I was not going to sit back and wait for him to die. He promised to sit down with Dave's chart tonight and try to come up with a plan. maybe he'll look at the list of clinical trials I faxed him two weeks ago. but he said it was the first he'd heard of today's failed chemo attempt, he's working in another office today. so at least I brought this to the forefront of his attention. otherwise, he might not know about it until later in the week at best.
Karen