Checking In; BrownBagger Update (w/photos & drone video)

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby kellywin » Wed Jun 22, 2016 3:51 pm

Eric - as others have said, you are such an inspiration. You amaze me.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby NateA » Wed Jun 22, 2016 11:31 pm

Loved the drone video! And super glad you got to the family farm!! Thx for sharing!!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby Pita » Thu Jun 23, 2016 1:52 am

Thoroughly enjoyed reading your post, it gave me a boost in energy. Lovely farm, so green, we don't see much of that in So Calif.
My best to you and your treatments...
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

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Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby Rob in PA » Thu Jun 23, 2016 10:30 am

From one old timer to another...."you da man!" Keep on keeping on!

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby justin case » Fri Jun 24, 2016 4:09 pm

BrownBagger wrote:Funny how we go hot and cold on the Colon Club. Sometimes, usually when I'm facing some medical crisis or question, I take a lot of comfort in our little group. Other times--generally when I want to forget about cancer for awhile--I stay away.

Anyway, I have been staying away lately, not because I'm trying not to think about cancer, but because I've been preoccupied with a variety of things, including two weeks of much needed vacation on the family tree farm in Wisconsin. I really needed to get away from it all, rekindle some relationships and try to repair others. Got a lot of necessary work done (it is a farm, after all), and generally had a great and very relaxing time. Returned home to find my garden still intact, though it was just in the nick of time. One more hot, dry day would have killed off most of my smaller plants. But it's all good; they're all off to a good start. I'm going to have a killer garden this year, and you all will be subjected to numerous photos of the progress.

If anyone is interested, here's an aerial video of part of the tree farm: https://www.youtube.com/watch?v=-vNyphyqSLs

I had a rough winter and spring, beginning last November when I went to NYC to get an RFA at Sloan-Kettering. The procedure went well, but I developed a pneumothorax that caused air bubbles to get under my skin. It's called subcutaneous emphysema, I believe, and I had a spectacular case of it. Not painful or otherwise uncomfortable, but really, really weird. Anyway, this developed after I got home, so I headed back down to the city (a 5-hour drive) a few days after the RFA. They inserted a tube (kind of like a PICC line, but not) that stayed in for a week and cleared up the air bubbles. Had to go back to the city yet again to get it removed. Then I get a letter from my ins. co. saying they don't want to shell out $24K to pay for the RFA. I'm like, WTF? They paid for the last one...and the one before that. Turns out (after a month of anxiety) that they were wrong--they would pay it after all. Well, hell, I didn't have $24 grand sitting around anyway.

Must have been late March I headed down to North Jersey to get scanned at the Sloan clinic in Basking Ridge. I'm halfway home, just south of Albany, when the phone rings. It's Dr. Kemeny! She seemed concerned about my well being and said that a tumor showed up in my bronchial cavity (this is just 2 hours after the scan was done), and she wanted me to return to NYC the next day to meet with my thoracic surgeon, Dr. Huang. Which I did. Huang wanted to cut it out the next morning, so my wife and I got a hotel room and spent the night. The procedure the next morning went great. Could have checked out the same day, but decided to spend a night in the hospital for a variety of reasons. The next morning, Dr. Kemeny showed up and said that she wanted me to switch from Irinotecan in my biweekly cocktail, to Oxi. I'm thinking, Yuk! Plus, now I need a port (after 115 rounds of chemo without one). So, I traveled down to NYC again a week later to get a power port installed. That went well and I was back on the street the same afternoon. (I like the port, BTW).

I started taking the Xelox/Erbitux blend in early April, and it's been going well. I had my 5th round last Friday, and I feel fine. I don't get constipated like I did on Irinotecan, which is, after 3 years, a real blessing. No sign of the bronchial tumor returning, and my other lung stuff is all stable. So, could be worse. My only complaint is fatigue, which I gather is caused by my low RBC count. I'm working on getting that back up. Fortunately, I'm also blessed with two children who (suddenly) enjoy working with their dad, so I got them to do much of the heavy lifting in the garden and on the logging job. Don't get me wrong--I did what I could--but it was less than I wanted to do. I told my son, "You don't have to be smart because you're strong. Me, I need to be smart to get anything done" He confirmed my observation by taking it as a compliment (just kidding; he's a smart 35 year old 'kid.')

So, I think I continue to do remarkably well, despite the minor setbacks. However, I'm well aware that I can't keep taking Oxi indefinitely, and at some point in the near future, Dr. Kemeny is going to have to come up with an alternative strategy. I'll leave that to her, but I reserve the right to worry that we're entering the end game, time to fish or cut bait, shit or get off the pot--whatever. Hopefully (as always) she can buy me enough time to get me into some early-stage immunotherapy treatments or trials. I read somewhere that in five years, all cancer treatments will be immunotherapy-based. Hope I'm still around to benefit from that.

As my good friend and fellow moderator, CRGuy pointed out in another post, most of my (our) old friends here have departed the planet. Of course, there are always new faces to replace them (sadly) and most of you don't know me, but I thought I'd update anyone who's interested in my case. I will say, sincerely, that other than being plagued with a deadly disease, everything else in my life is going just great, contrary to what you might expect. I'd like to keep that ball rolling, if I can. As I like to say, any day that I can get up and have a normal day, I consider it a win.

Here's a couple happy pics:

This is what I did with my daughter's help over Memorial Day weekend here in Central NYS. Please excuse the clutter, but it's a working garden.

Image

This is what my son helped me do the following week in Wisconsin. We each cut about half the wood. These logs will be milled into lumber and pressure treated. You might buy some at your local big box store later this summer or fall. The smaller pile on the right is pulpwood for paper.


Image

Hard work, let's one stay motivated ! Getting away from the hustle and bustle, surely is the best way to gain some satisfaction for all the effort you have put into all the magnificent things, you have shared with others. I know you have helped me through some times, where I thought all was lost. I'm around, but newer technology has more to offer, and I'm not a representative of those protocols !
Your friend,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

mariane
Posts: 704
Joined: Sun Sep 13, 2015 6:16 pm

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby mariane » Fri Jun 24, 2016 11:23 pm

I am so happy that Dr Kemeny found the solution. The garden and farm look fantastic. Great job! As a survivor, gardener, parent... You live your life to the fullest. You are inspiration for us all.
mom of now 14 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby Jacques » Sat Jun 25, 2016 10:57 am

BB - Just a note to say that I have benefited from your past posts in the monthly exercise threads and all of your posts on wood-cutting and gardening. Also, there is the bicycle mileage odometer in your signature. All of these have encouraged me to start and to keep up with a regular exercise program. You have convinced me that regular exercise is the key to being able to withstand chemo and its various after-effects.

On another note (a little O/T), just this week I ran across a reference in France to a certain bio-tech startup in San Francisco. This made me think about your daughter and her new job in San Francisco. It must be exciting to be working on the cutting edge of science and technology -- especially in areas related to gene splicing!

Take care, and I look forward to seeing your future updates.

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cecioboe
Posts: 597
Joined: Mon Oct 17, 2011 9:08 pm
Facebook Username: Ceci Lagarenne (Higgins)
Location: Texas

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby cecioboe » Mon Jun 27, 2016 12:35 pm

I also check in usually only when Jim has scans, blood work and his annual colonoscopy. Today, I checked in because Jim had his port removed after 4 years 8 months.

Glad to read your post.

Keep on keeping on!

Ceci
Wife to Jim Stage IV RC w/liver mets
DX 9/16/11
T3N1M1
Oct - Dec 2011 chemo/rad
1/04/12 ileo
1/16/12 LAR, liver resection
2/29/12 blockage, emer surg, ileo rev
4/16/12- 9/16/12 chemo
NED since 10/22/12
De-ported 6/24/16

Hapa
Posts: 388
Joined: Thu Jan 03, 2013 2:46 pm

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby Hapa » Fri Aug 05, 2016 11:58 am

Great flying indeed. I bought DH a cheap drone with camera for Xmas. There it sits on the shelf. How are the worms doing?
DH Stage 3 RC

wifeandmom
Posts: 218
Joined: Fri Nov 12, 2010 1:12 pm

Re: Checking In; BrownBagger Update (w/photos & drone video)

Postby wifeandmom » Fri Aug 05, 2016 3:07 pm

I very rarely post but often follow, and have been appreciating your words and thoughts and support for years. I wish you well!
Dx 4/09
Rectal CA T3 N0 M0
Neo-adj. rad/Xelox
Surgery 8/25/09 LAR, temp ileo
Reversal 10/09
Fistula
Surgery 12/21/09 temp ileo
ICU 12/30/09
8 rounds Xelox
Surgery 9/9/10 fix fistula, redo anastomosis
Reversal surgery 12/23/10
Hernia surgery 5/19/11
2018 Dx with radiation-induced Lumbosacral Plexopathy
ATM gene mutation
3/2019 Dx uterine carcinosarcoma Stage 1a


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