BrownBagger Update

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

BrownBagger Update

Postby BrownBagger » Fri Nov 11, 2016 2:06 pm

Well, as one of my favorite fictional characters of all time, Jim Anchower on The Onion, used to say, "It's been a long time since I've rapped at ya, amigos."

The past six months have been a real roller-coaster for me, but I'm still standing and still optimistic about the future, though it's getting increasingly complicated and uncertain.

Briefly, my lung mets have remained more or less stable for a few years, and we were just watching and zapping them if they started to act up. That's still the case, as far as I know, based on my last scan. However, about six or eight months ago, a tumor in my bronchial cavity showed up, and it's in a bad spot--at the juncture of the airway and threatening to block it. I've had several bronchoscopies (both flexible and rigid) to clear it out, in hopes that it might not come back. But it did. So we decided on a series of radiation treatments, delivered via the bronchoscope--one treatment a week for three consecutive weeks. I'm getting all this done at Sloan Kettering, by the way, which is a 5-hour drive from my home in Upstate New York. Not that I mind a little driving for the best care possible, but it does present some logistical challenges.

So, about a month ago my wife and I made the trip to Manhattan so that I could get the treatment at the hospital the next day. We drove to Poughkeepsie and then parked our car and took the train into the city. This is in part because it's pretty expensive to park in Manhattan overnight, and if my wife ever had to drive in Manhattan, it wouldn't end well. I actually like driving in NYC, but because they knock me out for the procedures, I'm not supposed to drive after being released from the hospital. And I comply. So, it's a combination of a drive, a train ride and a night in a hotel. If all goes well, you get out a few hours after you wake up the next day, and it's all good.

Unfortunately, when they got to the tumor, it was bigger than they expected, so they cut it out but in the process, perforated the bronchial wall, leading to a case of subcutaneous emphysema. So they didn't do the treatment, though they did keep me in the hospital overnight. My wife was able to stay in the room with me. Good thing, as hotels in NYC are expensive and hard to find on short notice. Two weeks later, we were back for more, but this time I almost died on the table after they put me under. Seems I had a bad reaction to my BP meds while dehydrated. My BP plummeted and they had trouble getting it back up. They thought I had a heart valve defect, but an echocardiogram the next day showed a healthy heart. They switched up my BP meds and I feel a whole lot better in general. But they kept me in the ICU for two nights; my poor wife slept in the chapel.

So the other day, we headed back down to Manhattan for hopefully the first treatment. And it went well. We checked into the hospital at 5:45 a.m. and I was back on the street by noon. We got home by 6:30. Not a bad couple of days. Once you get used to spending $200 for a cramped hotel room with a communal bathroom, NYC isn't a bad place to hang out. There's lots of good food and things to do, and not all of it is expensive. And, you can get anything you want, including a lot of fresh fruit on the street for cheap. Great transportation systems and walking. I have my second treatment next week, and it should go off without incident, now that they've got my BP thing figured out. We skip a week for Thanksgiving, and wrap this phase up on November 30. Hopefully the tumor will take a break and give me some mental and physical relief. If not, I still have radiation and chemo options available. At this point, it's all about buying time.

Anyway, I don't know as many members as I used to when I hung around the board a lot more. Just not really in the mood lately, though I thought I did owe my friends an update.

I do want to plug Sloan-Kettering and everyone who works there. The standard and level of care and attention to detail is unmatched in my experience. Not even close. They take special care of everyone, and at least in my case, I think it shows.
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.

debb
Posts: 180
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: BrownBagger Update

Postby debb » Fri Nov 11, 2016 3:16 pm

I admire you and your attitude so much. You're one of the 1st people who helped me on this board. You recommended your lung surgeon to me. We have both been on a long road but it does help to know that were being treated at the best place in the world.

Thank you for the update! And I wish you all the best!
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One+ year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: BrownBagger Update

Postby jhocno197 » Fri Nov 11, 2016 4:00 pm

That all sounds WAY too exciting!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

User avatar
CRguy
Posts: 10110
Joined: Sun Feb 10, 2008 6:00 pm

Re: BrownBagger Update

Postby CRguy » Fri Nov 11, 2016 4:41 pm

O T M F


WORD ! bro'

just, WORD !
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

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: BrownBagger Update

Postby Maia » Fri Nov 11, 2016 5:08 pm

Eric, I'm so sorry you (and your wife) went through such scare with the BP. So glad they found the cause!
About the tumour threatening the airway --goes without saying that it sucks. However, it's a great relief you're being treated... and that they have cut the bastard out!! Hopefully the radiation will prevent any recurrence.
My strongest thoughts and friendship flying your way. You're Zen Ironman! :)

User avatar
mypinkheaven
Posts: 459
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
Contact:

Re: BrownBagger Update

Postby mypinkheaven » Fri Nov 11, 2016 5:15 pm

You don't know me very well, but I feel close to you from reading your posts. I knew about the bronchial tumor and have been a bit worried not seeing many posts from you lately. Thanks for the update.

So, I understand that they cut out the tumor and you're going to receive a couple more radiation treatments. I hope this kills the fucker.

How are you feeling now? I understand not being in the mood to post on the forum. I just wanted to let you know that more people think about you and care about you than you may realize, Amigo.

Sally
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

ams5796
Posts: 2297
Joined: Fri Feb 06, 2009 10:07 am

Re: BrownBagger Update

Postby ams5796 » Fri Nov 11, 2016 5:45 pm

Wow, Eric. That's not the update I expected to read. You've been through so much with this disease, but your optimistic attitude continues to be an inspiration to me and to many others on this board.

I have great faith that you'll be well taken care of at MSK. I wish you the very 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

jens22
Posts: 1011
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

Re: BrownBagger Update

Postby jens22 » Fri Nov 11, 2016 6:23 pm

I'm so sorry to read this...I feel like we've know each other for years. Holidays in Manhatten are fun...but Not when you are under the Gun. You always bring such a positive outlook to things. I'm a 90 min train ride to NYC you are always welcome here.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 7 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 54 Mom of 3 boys.

User avatar
Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: BrownBagger Update

Postby Bev G » Fri Nov 11, 2016 6:26 pm

Hi pal,

I'm so sorry to read what you've had to go through of late. I hope their better understanding of your BP meds makes the follow-up treatments much easier. I pray this strategy will work.

Much love,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

User avatar
HopeForJesse
Posts: 249
Joined: Wed Feb 24, 2016 9:39 am
Location: Philadelphia

Re: BrownBagger Update

Postby HopeForJesse » Fri Nov 11, 2016 7:35 pm

Hi Eric,
Similar to Sally, you helped me early on and I have been wonderIng about you. So glad to see the update despite the content. What an ordeal for you! I hope you are past the worst of it and the treatments are quickly effective. Your reference to the fruit stands made me smile since that was one of the things I recalled walking 4 blocks to and from the subway in July for 2 weeks when Jesse had his surgery. I love NYC but I hated the reason to be there and finally as he improved I just decided to be content to be there in the warm summer months with those lovely fruit stands.

Oh, And your poor wife in the chapel. I have slept bedside in the not so comfy chairs but the chapel idea is ingeneous :D although I am sure once is enough and no repeats are wanted!

Hang in there and know we are here for you as you have been for us and so many others here.
Mary
DH DX 01/16 49 YO inop RC stage IV liver mets
MSS TP53 APC,BRCA2
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

User avatar
muskokamike
Posts: 225
Joined: Tue Feb 25, 2014 4:38 pm

Re: BrownBagger Update

Postby muskokamike » Fri Nov 11, 2016 8:39 pm

Eric,

I have always read and enjoyed your post. Thanx for the update and chin up.
53M Dx rc10/31/13
WTF!
CT scan, BONE scan
MRI/T3N0M0 1 suspicious node
5 wks chemo/rad
LAR open TME 2/26/14
temp ileo
0/24 nodes pCR/pathological
Mop up Folfox (8) Mar/28-Jul/4
Aug/14 clear CT scan
8/27/14 reversal
Feb/15 clear scope
July/15 clear CT scan
Feb/16 clear CT scan
Feb/17 clear CT scan
Feb/18 clear scope
Feb/18 clear CT scan
Sep/19 clear CT scan DISCHARGED!
CEA levels 1.6 dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal
https://kicknasscancersass.blogspot.com/

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: BrownBagger Update

Postby jdepp » Fri Nov 11, 2016 9:13 pm

BB,

Thanks for the update. As always, I admire your fortitude & practicality -- which I try to share.

I wonder if you've looked at any clinical trials? Maybe there's an immunotherapy trial with your name on it?

Best wishes,

jdepp
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

stu
Posts: 1298
Joined: Sat Aug 17, 2013 5:46 pm

Re: BrownBagger Update

Postby stu » Sat Nov 12, 2016 5:17 am

Hi,
Wishing you every success with the next treatment and hope it's totally non eventful. It sounds a lot. Your wife sounds really supportive . Thinking of you both.
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 .

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: BrownBagger Update

Postby Sams wife » Sat Nov 12, 2016 11:10 am

Well, I must have missed the bronchial tumor post. I was hoping you were off getting your teeth done. Hopefully all you will need is a few radiations, then finished for a while.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

DarknessEmbraced
Posts: 3427
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: BrownBagger Update

Postby DarknessEmbraced » Sat Nov 12, 2016 11:19 am

Thanks for the update. I'm glad the roller coaster has calmed down and hope it remains that way.*hugs*
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! :)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: polluxx and 24 guests