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No chemo today


Remembering Dave

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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

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Hey Dave.

Good to hear your "voice".

Hoping that your trip will be wonderful for all of you. An indoor pool with a little girl sounds like so much fun! I hope that they will have a nice one for all of you to play in too.

So sorry that you are having a rough time of it. Wish I knew of something that would give you some relief for the leg cramps. It must be awful to become so chronic that it wears you down.

I am right there with you, Dave, on believing that you will beat this back another time. I get the same feeling about myself in the depths of my bones. And I really have grown to trust that feeling, as I can hear that you have as well.

Hang in there and get those cramps taken care of one way or another.

love, Cindi o'h

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Hi Dave,

I was wondering about your potassium level as well. I know that when my potassium dipped rather low, I was having some incredibly bad leg cramps. Just a thought & pretty easy to fix.

Glad to hear from you. I hope you both have a wonderful little retreat.

Hugs & prayers,

Melanie

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Hi again Dave,

One more thought, Have you considered a possible change of pain meds from Oxycontin to Morphine? I was having some incredibly bad reactions of all kinds to that blasted Oxycontin. My life is SO MUCH BETTER with the Morphine & I'm able to keep the dosage low enough to function quite well while on it.

Talk to you later,

Melanie

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Hi David So glad to see you posting. I hope you can find the right meds to get you feeling good as new. I too have had cramps and found that a couple potassium pills works wonders, or a banana or 2.

I hope you amd Karen have a wonderful weekend away. You 2 sure deserve some relaxing time away from it all. Just try to take you mind off cancer for a few hours if you can and enjoy one another and the beautiful seaside there in the outerbanks (one of my fav places). O and dont forget the good food!!

Take care and God bless

Kim

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David,

You are so right, you will beat it again! You have a great attitude to fighting this horrible disease. I think that is so important to win this battle.

Have a wonderful weekend in the Outer Banks. What better place to go and relax!!!

Diane

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David,

Sorry nothing has worked for those pesky leg cramps. The cal/mag/zinc sure did the trick for my hubby.

They have you on a really different regimen for the Topotecan than I'm on. I'm getting 5 doses, condensed into four and infused Monday thru Thursday....then I go in on Friday for a Neulasta shot. My bloodcounts dropped a lot too....but before I started the second cycle of chemo this week...my whites were back up and the Aranesp shot I got last Friday REALLY boosted the platelets over the weekend, it appears. RBC, HGB and HCT were all still a bit low, though. In a couple of weeks they should come back into normal ranges.

My platelets had gotten down to 44 (range: 150-350) but my onc said he wouldn't worry unti they were HALF that!! Maybe in your case, if you're getting just one megadose of Topotecan...it's a different story...but I sure know your angst about not wanting to miss or postpone the chemo, and therefore the tests in between!! Funny thing....with Topotecan I actually feel better when I'm getting it, and right after...and then the further out I go, over the two weeks off....I start to not feel so great again. Weird. :?

Hope you get everything straightened out, but meanwhile...have a great road trip! Boy, a vacation sounds good to me right now. Haven't been anywhere in a long time.....and while sunshine sparkling off the snow is better than just MORE BLINKIN' SNOW.....it still ain't no sandy beach, you know? :wink:

BTW....had a brain MRI last week and they found a pea in my brain too. Very small...may be scar tissue. I'm counting on that!! Will have another MRI next month to track it. Not gonna worry about it unless or until I have to. For now, I'm just enjoying this steroid-induced increase in appetite and energy!

Hang in there, Chapmans...and have fun on the road!

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I'm sorry you have been having the leg cramps and pains. I pray that they go away soon and you guys get to enjoy your trip.

It was so good to see you posting today David. Please know that you and your family are constantly in my prayers.

You will beat this again...for good.

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Hey dude, sorry about the chemo! Karen called and left me a message yesterday (I finally got out of the house). Been trying to fight off this damn depression, it's harder then beating your way out of a wet paper bag.

Gotta call the shrink and get in there, I have been on so many antidepressants, none of them are working. I admitted to Kurt and my Mom yesterday that it's bad so they are now taking over because I can't. Been down this road before, handled it many years medicated and many years un-medicated, guess cancer is more then I can take. Just have to find one that works. Xanax is good but not for long term.

Hang in there, we'll get somemore poison in you somehow!

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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

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take advantage of all hotel amenties! Room Service. Don't look at prices, just order! Put everything on your room bill. Practice saying, "Charge it!"

Say it out loud with conviction and enthusiasm until it feels good to say it. Have fun with those two words...they are beautiful!

love, Cindi o'h

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