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

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

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

Postby BrownBagger » Mon Jun 20, 2016 11:04 am

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
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Checking In; BrownBagger Update

Postby ams5796 » Mon Jun 20, 2016 11:47 am

Eric,

I'm always interested in what you have to say. You inspire me. I think your "one day at a time" approach is working well for you. You make this look easy. I truly hope you get many, more years of "normal" life. We cancer folks all know too well that normal is so underrated. You're in great hands with Nancy Kemeny and all the brilliant folks at MSK. I wish you the best.

Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Checking In; BrownBagger Update

Postby BrownBagger » Mon Jun 20, 2016 12:04 pm

Thanks, Ann. You're one of my original friends here, and I'm so glad we're both still around.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Apple1291
Posts: 68
Joined: Mon Jul 04, 2011 2:14 pm

Re: Checking In; BrownBagger Update

Postby Apple1291 » Mon Jun 20, 2016 12:20 pm

I don't post much, but read everything and I've followed your story with great interest since I joined back in 2011. You remind me a lot of my dad. He loves to garden, he loves his bike and he loves his family. I'm hoping that will help him get through his future treatments. You have always been a great supporter of all of the members of this club. I wish you lots of success with your future treatments. Here's hoping both you and my dad are able to take advantage of immunotherapy based treatment 5 years from now.

Annie
Daughter to Dear Father 57 years old at diagnosis
T4N0MO July/11
12 rounds folfox completed March/12
Recurrence June/16 peritoneal carcinomatosis
12 rounds folfiri and avastin completed November/16
Many more rounds of chemo and 12 tx radiation

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Checking In; BrownBagger Update

Postby tammylayne » Mon Jun 20, 2016 12:27 pm

Always happy to read your positive stories....and even though the "new ones" don't know you - you will inspire them,,,give them hope at a time when there can seem to be no hope. Keep talking BB...keep talking....

Wishing you many, MANY MANY more years of posting....
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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beccab1
Posts: 624
Joined: Wed Apr 14, 2010 7:37 pm
Location: Raleigh, NC

Re: Checking In; BrownBagger Update

Postby beccab1 » Mon Jun 20, 2016 12:33 pm

You are one of the people I stop in to check on and I'm always glad to read your positive posts. Hope you have a great summer!
My husband, Eric, dx @ age 35
Stage IIIb RC (T3N1M0), 3/10
Finished 6 weeks rad/xeloda 5/10
Surgery 7/10, Lap LAR, Colonic J Pouch, Temp. Ileostomy
ypT2N0M0
Xelox (5 rounds)
Takedown 12/13/10
Clear CT - 2011-2015

teachpdx
Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Checking In; BrownBagger Update

Postby teachpdx » Mon Jun 20, 2016 12:34 pm

Eric I read anything you write. I'm always amazed and how you power through no matter what. I look forward to seeing your garden pictures. I finally was able to put in a garden up to my standards for the first time since my diagnosis. Gardening is my therapy plus I get to eat the results! Best of luck with all of your treatments and I'm pulling for immunotherapy as well - chemo sucks (for me).

Peace,

Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

stu
Posts: 1396
Joined: Sat Aug 17, 2013 5:46 pm

Re: Checking In; BrownBagger Update

Postby stu » Mon Jun 20, 2016 1:13 pm

Hi ,

Sounds as though you handled a lot well , yet again.

We need you here, for some reason it provides a strength to us and inspires us in equal measures.

Holding out for the cure,

kind regards,

Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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CRguy
Posts: 10246
Joined: Sun Feb 10, 2008 6:00 pm

Re: Checking In; BrownBagger Update

Postby CRguy » Mon Jun 20, 2016 1:36 pm

Hey bro'
glad to see you back posting, home from the forest !

Stu's right .. that IS a lotta BBagger adventure there my friend,
and you ARE a huge inspiration to us all.

WORD !
" keep digging life... scan to scan "

CRguy

damn .. I'm still waiting to see if you arm your drone to take out critters and pests !!!! :mrgreen:
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DarknessEmbraced
Posts: 3525
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Checking In; BrownBagger Update

Postby DarknessEmbraced » Mon Jun 20, 2016 2:49 pm

I enjoy reading all of your posts and am thankful for the update!*hugs* Glad that you enjoyed your trip to Wisconsin! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Checking In; BrownBagger Update

Postby Ron50 » Mon Jun 20, 2016 4:13 pm

Good luck bb , I'm glad you are able to still enjoy your life even tho you may have to delegate some of the heavy stuff. What I can no longer do I can still dream of doing, Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Checking In; BrownBagger Update

Postby juliej » Mon Jun 20, 2016 5:24 pm

Been wondering where you've been... But I know when you go dark, 99% of the time it's because you're out in the Wisconsin woods. "Preoccupied" with things other than cancer is a good way to live your life! :D

Hold on tight, my friend. Immunotherapy is coming at a faster pace than anyone expected. Finding combos that work takes time but the NCI's Genomic Data Commons will speed things up. Plus, you've got a brilliant doc watching your back! Lets hope we both live to a ripe old cancer-free age. In the meantime, let's at least give hell to those Stage 4 stats!
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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ktwmn
Posts: 350
Joined: Tue Aug 02, 2011 9:41 am

Re: Checking In; BrownBagger Update

Postby ktwmn » Mon Jun 20, 2016 5:42 pm

BB,

I always find your posts inspiring: your powering through many rounds of chemo, your physical stamina and exercise, your garden, and most of all your positive energy despite all the things that happen on this crazy journey. Like you, I have recently been switched from iri to oxi and have noticed the fluctuations in RBCs (in addition to WBCs) hence the fatigue. I too am concerned about the potential end game since oxi on this bout has been battling me (fevers, and lately an allergic reaction). I feel confident that immunotherapy will be part of the game plan soon, hoping to hang on with the chemo long enough to get there.

Best wishes for you and continued success with the garden, I expect to see drone photos!!
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

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Cowgirl918
Posts: 319
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Checking In; BrownBagger Update

Postby Cowgirl918 » Mon Jun 20, 2016 6:08 pm

I guess I qualify as one of the newbies but I read your posts for information and inspiration. Your biking reminds me of my riding. I get knocked down but always manage to "get back in the saddle" as they say. When I see how many miles you have logged I am determined to log a few more myself. Thanks for the update and keep doing so well. Cancer may suck but life is still good! :D
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80% removed
5/29/2016 Compressed lumbar spinal fracture (riding accident)
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
10/18/16 Autoimmune Diseases confirmed

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Checking In; BrownBagger Update

Postby chrissyrice » Mon Jun 20, 2016 6:38 pm

So good to see your update... it brings out us old timers :P

I visit every week at the least... and yes I too miss so many of our friends who have left this world and welcome newbees too.

It would be nice if we never had any newbees :wink:

Chrissy
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months


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