Thursday, April 23, 2009

GENERAL UPDATE & CURRENT STATUS

Hi folks, I thought I'd try and use this blog to give folks an update on my situation. Between posts that I make and are made on my behalf, hopefully it will become an easier way to keep track of what's going on. Thank you all so much for your kind demonstration of support via letters, prayers, cards, notes and visits. I can't say how much that means to me.

CURRENT MEDICAL STATUS
The current challenge is managing the fluid buildup in my abdomen (ascites). This is caused by the cancer and, possibly, by a reaction to the initial anti-cancer drug I was on (Sutent).


At first, we thought this might be an opportunity to jump ship on the Sutent and get in on an NIH trial drug (XL880) that I've been following since the first diagnosis; however, it turns out that I'm not healthy enough to be a lab rat! Bummer. This isn't just temporary; the XL880 study allows you to have ONE prior therapy for kidney cancer. Once I put that drop of Avastin in my body, I'm no longer eligable for this, particular, trial.

The NIH/NCI oncologist spoke with my Drs here at UVA and together we decided to try an IV drug called Avastin, which works similar to Sutent, but they have actually seen it help clear up Ascites. It also has less side effects, but the downside, is that it's kind of an outdated drug and isn't used much b/c it hasn't been that effective OVERALL in treating pRCC (and even for RCC, there are much better drugs out there). But, again, the main reason for going w/ avastin is the hope that it will clear up the ascites by attacking the cancer (vs. being drained every 36 hours.... ugh!). Once I'm stable, I imagine we'll be looking at some other non-Avastin options.

The insurance company approved the use of this drug, but I'm waiting for the gears to start turning here so I can start taking it.

One minor complication is that a side effect of Avastin is that it can cause bleeding and/or make it hard for your blood to clot. The reason that's a complication is that it makes any procedures related to draining/managing the Ascites much more risky. So.... the goal is to have one really good abdominal tap just before starting the drug (and, once again, I'm waiting.... waiting..... waiting....
I slept well last night (better than in a long time). We've finally got the pain/nausea managed reasonably well (mmmmmm..... narcotics....).

Well, that's probably enough for now. We'll fill in some of the back story shortly and, please, feel free to post/ask questions in the comments section you might have (others might have as well), and I'll do my best to answer.

Once again, thanks to everyone for your love and support. I’ve gotten lots of comments by visitors, roommates, and staff about the quality of the folks who are hangin’ around. You guys are great.

12 comments:

  1. Davo,
    Thx for the updates. On my end, been traveling much this past month. Just got back from Afghanistan last week. Was looking for a nice summer home. Maybe we can partner up on one? Excellent mountain views and world class hiking... most of the land mines are even marked so no worries. Daily tea with the village chiefs helps insure against unexpected ambushes while on picnics. You would love it there - they even had a Harley dealership on the main base... just think how cool the middle schoolers would think you were if your Harley came from Afghanistan...! You were already pushing the red zone for cool (in an engineery sort of way)... but that might push you off the charts... Next time I go I'll see about a free companion ticket or if you have the frequent flyer miles saved up too easy... Praying for you guys. Cheers,
    Tom & kids

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  2. Hi David,
    Thanks for creating this site to help keep up up on all the info and without pestering you and Joanne! At the elders' meeting this morning we continued to pray for you and for God to be glorified in your healing. We will continue that prayer. The short presentation about Prague went well on Sunday. Danny Meadows did a super job and the pictures were great. I will look back on that time with special memories! Sounds like it is OK to visit so I will be coming by to visit you now if it is OK.

    Steve Braintwain

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  3. Thanks for the updates; now I guess we don't have to bug Joanne for the details. (Steve beat me on that comment!). And I can't beat Tom's story (I do work with Navy Seals though--get to see the BUD/S guys get all wet and sandy when they're not paying attention or just do something dumb). But, know we're praying for you even out here in San Diego (even though CA truly is the land of flakes, fruits and nuts).

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  4. It was great to see your pic, dean. Tell Barb NOT to use this as an excuse not to call :)... as i see it, that's one of the dangers of the blog... personal exchanges get traded for mass-media. NOT INTERESTED. Hopefully this will supplement the calls / notes.

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  5. Of course I am still calling.

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  6. Just gotta share ... as we came out of the parking garage yesterday, we tried to remember what floor we had parked on. It was D, so Bill said D for Dave, we can remember that. I said oh! that is much better than what I thought. It was challenging to find a space, so I thought D for damn parking place. But D for Dave is better. Or we could say Dave's damn cancer. Any way, we found our car upon returning from your sickbed where you ate BBQ and drank nasty meds without barfing. WE LOVE YOU!!! Stacey & Bill

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  7. Dave,
    Below is from Petr and Veronika. Bob

    We are praying and Dave has been on our heart strongly. If you can please give him our love. The guys are praying too.
    Blessings, Veronika

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  8. Dave and Joanne,
    I got this site from the Bennetts. And am glad to have it. The Lord put you on my heart months ago, so much so that I had to find you. Look what lenghts He will go to - to get me praying for you both. I'm off to work so will check with you later this evening. I have a card for you and will get it in the mail, email is so quick, but nothing like getting a little something in the mail.

    Carol Noah

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  9. Hey Carol,

    Great to hear from you! Where are you and what are you up to? We're still in San Diego and keeping busy with 7 kids and 2 dogs now. I still remember fondly our card games over New Year's at the Bennetts. Better memory than Dave creaming me in the face one year with the wiffle ball after insisting I take a turn at pitching and repeatedly assuring me that nothing would "go wrong".

    Barbara Abbott

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  10. your West Coast uncle is really pleased to sign in on your blog.thanks for the info.lotsof love coming to you from us ...bob &lesley

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  11. The Rubert family would like to know the source of your photos -- especially the Chester Vomit picture. Dave (my son, not the pRCCboy) has 2-month old with which to contend, and although her vomitous masses are not gargantuan by any means, they are disgustingly regular. Oh, and we pray for you, Dave. Keep the blog going.

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  12. Hello Dave,

    Mark Voorhees saying hello , person from the past; Tom S. has been keeping me up on your general status.
    Just want to say Keeping you,your Joanne and family in prayer as well as your medical care team.
    I want to Thank you & the Lord for all those times on thurs that were helpful, encouraging and laughable.
    Pray that you all continue to be sustained by each other and the Lord.

    God Bless,
    Mark V.

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