Remembering Dave
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Jane, I always followed your stories of Alan with alot of interest, and I can see in this picture how much better he looks, although he is closer to the end of his battle. I remember your talking about how he seemed to have made peace with himself, etc., and you can see it in his face, his smile, his eyes.
I love it, thanks for sharing.
God Bless,
Karen C.
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sandy, GREAT news, I have actually been wondering about you, despite everything else. I think you and Dave "started" out at about the same time so I am always keenly interested in how you are doing - and you are doing GREAT!
Praise God!
Karen C.
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first of all, I am very cheered by all the creative cursing posted to this thread. What a bunch of creative thinkers we got here! all of your thinly veiled cursing amused me greatly which cheered me greatly, which I needed very badly after I practically had a nervous breakdown this afternoon. I think I am past it now.
secondly, a big sincere thanks for all the words of support. I know Dave will beat this. I HOPE it never comes back again, but if it does he'll beat it back again. and leave it to Dave to get a mets in a most creative place. so creative it threw off just about every doctor off until the proof was in the pudding.
thirdly, yes, I am very grateful to "our" oncologist. frankly I love the man. I almost can't believe how receptive everyone in that office, including and especially the doc himself, was to getting us in and a plan started all within hours. It's mind boggling as a matter of fact. When I hear about folks having to wait weeks to see their oncologist (including my mother, but I got around that by getting her in to see our dear Dr. Schwarz) I am just incredulous. How could anyone wait to start their cancer treatment?
OK, 'nuff rambling AGAIN. What would I do without this website? I think I truly would have nervous breakdown #2.
Thanks and God Bless to all,
Karen C.
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Hi, ya'll, for more background, see our post under General (it's back) but Dave's oncologist told us about great progress they're making in Japan using combo of cisplatin and CBT-11 together for SCLC. He said that combo is in clinical trials in the U.S. for first line treatment but since this is a mets for Dave he wouldn't be in a trial, but the onc. (who is really great, brilliant, caring, up to date on everything) want to use it for Dave, he seemed quite excited about it actually.
He said it's been used in Japan but still in the clinical trial stage in the U.S. but I get the feeling he's seen enough evidence of how well it's working that he wants to use it with Dave.
Just wondering if anyone knows much more about this.
thanks,
Karen C.
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Hello, all. Turns out I did not have a simple case of Bonkitis on my right eyebrow like we were all hoping for. I saw my ENT Doc. who operated on my sinus and did a bone biopsy and she said that the path came back as small cell cancer met' from my SCLC. Darn it all. My Onc's office and radiologist office is just right accross the street so Karen and got copies of the Path. report and went strait over to my Onc's office and he saw me right away (well after an hour or 2 wait, but still pretty good same day!!) He was visibly upset that it had come back and we are going to start chemo as soon as possible and then I will have radiation. He is talking about putting me on Cisplatin and CPT-11 this time. I will have to have my port re-installed.......darn it all!!!!! I had it removed just a little too soon. This is just another bump and something we have to deal with. No problems, only solutions. I will beat it this time just like I did before, with many prayers and support from everyone and many listenings of Shostakovich's 5th symphony and Imagry.
David C
This is Karen. Darn it all is right. Dave didn't mention passing out in the ENT's office. not from the news, but she ran some instruments up his nose to remove the packing and hit some nerve (she said it happens all the time, not to worry) and he got really hot and sweaty and his eyeballs rolled back and he passed out for a second. He was OK, though.
YEP, across the street to the oncologist's office we marched. well, actually, we got in the car . . . anyway, they were great there, and even pulled up my mom's info while we were waiting. My mom is supposed to see an oncologist from the same group, different office, but I didn't like him AT ALL (arrogant) AND he can't see her until August. So the gals there said they'd get her in to see Dr. Schwarz, Dave's oncologist, sooner, like in the next week or so, and frankly he is so great and so kind and as you can see, so quick to act, that made me feel alot better. So now I get to see our dear Dr. Schwarz alot, ha!
This just totally sucks on Dave, what can I say, we were shocked, but the ENT doc said some things that on reflection made me realize that she KNEW when she was working on him last Thursday that it was cancer. She said the tumor was actually pushing the duct closed that drains from that sinus cavity which was causing back up of fluid which caused an infection, but that the bone in and around the sinus cavity is very porous like a sponge and she could see growths of cancer tissue in the little holes as well. She mentioned the little holes after the surgery last week. But that's not important, I respect her for waiting for the pathology before saying anything about it.
I don't know what else to say, I'm really floored, and am trying to work but can't focus . . .
Karen
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Cindy, good to hear from you. Best wishes and good luck with the computer.
David C
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Sorry you are having a problem with the chemo. Like Don said try many small meals. My prayers are with you.
David C
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Looks as if you and I may be the only ones who had a good 4th!!! Good for us. Congatulations.
David C
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Oh My!!!
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thanks, Connie. I, personally, am feeling a bit of anger at this stupid disease for making our dear Cheryl feeling so bad, emotionally and physically.
God Bless,
Karen
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Hello everyone, I hope everyone had a good 3rd of July. My sister, her husband and 2 kids got here around 4:00 yesterday and the kids played in the sprinkler for a while and then we cooked out steaks and hot dogs and generally gorged ourselves. When it finally got dark we shot off some fireworks. I have always wanted to shoot off fireworks in our field but just never have. I vowed to do it this year. One thing cancer does to you is that you learn t live for today. Oh, I still plan and work for tomorrow but I am not going to put off doing the things I really want to do. Karen started giving me greif (lovingly.....of course) about spending money on fireworks and seemed a little taken back when I said I might not be around next year to do it so I wanted to make sure I did it this year. We are all going to go out on the pontoon boat this morning whenever everybody gets up and then later tonight we will go to Tappahannock VA to see an Old Timers Softball game and then fireworks. We will probably take our mini grill and cook out hamburgers and Dogs. Tappahannock is a historic little town with lots of Antique shops on the Rappahannock River approx 60 miles northeast of Richmond. The Rappahannock is referred to as "The Rivuh" even though the James River runs right through the City of Richmond. We live 1/2 way between Richmond and Tappahannock on the Mattaponi River, a smaller, but more picturesque river than the James or the Rappahannock Rivers. The Mattaponi river becomes the York River and flows into the Chesapeake bay at Yorktown VA.. Well better start getting breakfast ready for everyone. Have a Safe and a Happy 4th of July, Happy Independence Day!!!!
David C
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Cathy, I know you will be glad to get this last chemo regime behind you. I know I sure was. Was nice you got to spend time with your daughter. I thik a trip to Europe is a great thing to do. HAPPY 4TH!!
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Connie please tell Cheryl and Jack both that my prayers are with them. I hope she is better inb the morning.
David C
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Great news and what a wonderful thing to do. My folks are on the way to LA CA right now, they are full time RVers and love it. Tell your sis we will be in Glacier National Park in Montana in August if they are in that part of the country maybe we can hook up. I would love to meet another survivor.
David C
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Oops, Rick, you are correct, thanks.
David C
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Jen, good to hear from you. I remember coughing a lot also. I was coughing up a lot of crap from my lungs and honestly think it was not only part of the tumor breaking apart but also the crap built up from years of smoking. I had little black flecks in my phlem and It had to be the tar built up in my lungs breaking up and coming out. Hows that for a testimonial about why you should not smoke??!?!?!?!?!!!!
It seems as if chemo effects everyone a little differently. Hang in there and keep the positive thinking going. Don't let the differences in feeling get you down, remember you are getting GOOD THINGS DONE to you which is going to make you feel a little odd. Be happy you are feeling odd because it means the chemo is working!!!! You need to go read this article
http://cancerguide.org/median_not_msg.html
The Median Isn't the Message by Stephen Jay Gould
This is an article my sister, Becky CW, sent me which really helped me out. Have a happy and joyous 4th of July weekend. The ball is rolling on your cure so get out and enjoy life as much as you can. Hamburgers have good protein and there is a lot of holiday beverages to keep you hydrated. Remember to keep hydrated. My prayers will be with you.
David C
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Elaine, belive me, I thought the exct same thing, especially when I requested the Procrit not once but on multiple occasions and was told they don't use it any more. Pi**ed me off to tell you they truth. I also wonder if the insurance companies have something to do with it since Procrit was given once a week and these others are once a cycle, costs them less
David C
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Mike, sorry so late in responding. Hope all is beeter with your wife. Let her know that we are here as living proof that a diagnosis like this is not the end of the world. We are all here for her and you as well.
David C
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I still get dizzy sometimes when I am reayy tired and I stand up too fast. Let us know what the dac says/said.
David C
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THREE YEARS!!!!!!!!!!!! That is awesome. Watch out, we are all right on your heels. 3 cheers to you, Hip, Hip, Hip Hooray.
David C
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Procrit worked best for me. I had it throught the first 2 cycles and then they switched me over to Neoprogen (sp?) I could deffinitely tell the difference and resguested the procrit several times but they never went back to it.
Don't forget to update us on day 3......orohave I missed it in my pain pill filled bliss?
David C
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Wow, I must say that your husband has got the strongest will I have ever heard, I can't imagine dragging himself to that wedding in his condition. When he said he wouldn't miss it for the world he wasn't kidding. Well, good for him.
I hope your daughter's stuff goes OK. must be some reason for doing it again, thyroid stuff is very weird. We will pray for the best for that. I do think that thyroid cancer are fairly easily cured but hope like heck that's not it at all.
I sure hope you're able to keep yourself rested and taking good care of yourself through all of this.
God Bless,
Karen C.
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(come everybody SING) life is good on percoset, mix it with some versed, then you don't care whats said!!!! OK, Karen is nagging me to gwt off the computer and stop posting so I will let her finish here.
Yeah, well, I go upstairs to put Faith to bed and come downstairs and there he sits, hunched over the computer, typing, and he only has one good eye, the other one is swollen and black and blue and has a nice bloody incision running along the top of his eyelid - should he be typing? I don't think so!
anyway, took him in for his bonkitis surgery today. It took almost four hours. I think the surgeon was running behind on the patient before Dave and then with Dave I think she really ran behind. We got there at 9:00 and they didn't take him back until 12:30. I asked the nurse how long it would take and she said the OR was booked for 3.5 hours. Huh? Fo some silly reason I thought this would only take an hour. The doc didn't call me in the waiting area until 5:00. No way to tell what the bonkitis is until we get pathology in 7 days, but she did a real number on Dave's face, hopefully the infection will all be cleared out and that's all it is. Right now it's just wait and see. She said to come see her on Wednesday next week so hopefully she'll have the pathology by then.
Not much else to say except Dave is pretty miserable, thank you God for narcotics. He's got to take predisone for a week or so, I am NOT looking forward to that since steroids and Dave don't mix and he becomes a psycho, but I can deal with him for a week like that I guess!
Well, thanks for everyone's prayers. My mom is home and doing GREAT. I think all the docs were very surprised by how well she is doing overall. OH, BIG NEWS ON THAT, I almost forgot - her pathology came back and her lymph nodes were CLEAR, so the colon cancer physically jumped from her colon to her liver, which happens but is rare, so her prognosis just improved dramatically. OK, now I'm thinking I've already reported that, I can't keep anything straight these days, I have too many cancer patients in my family to keep up with right now . . .
anyway, thanks everyone for your prayers and support. Will keep you posted on the bonkitis pathology.
Karen
and Dave
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Jen!! there is no getting close to quiting!!!! Just do it. Do not keep any anywhere near you. Do whatever you have to do to keep away from them. You have a chance to beat this thing, do not ruin that chance by not quiting smoking. I smoked for 20 years and when I was diagnosed my doctor looked at me and said If you quit smoking you have a chance of being cured, if you continue to smoke you WILL die.
Yes it is hard but believe me you can do it. It's that pesky mind over matter thing again. Please reply with a post that says you have quit. Please, please, please, please.
David C
Cisplatin and CBT-11 (or is it CPT-11) for SCLC
in CLINICAL TRIALS
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John, you're the man with info for sure! thanks for this, I'll make sure Dave seems it first thing in the am (he's asleep already) but as usual you are right on top of things. I just couldn't think straight enough to get started, now I can.
Karen C.