RAYM, how are you?

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skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

RAYM, how are you?

Postby skypup » Mon Feb 09, 2015 12:35 pm

Hi Ray,

I know I speak for many (very many) when I say I'd love to hear from you. Wishing you good days!

the pup
Last edited by skypup on Sun Apr 19, 2015 1:12 pm, edited 2 times in total.

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: RAYM, how are you?

Postby KWT » Mon Feb 09, 2015 12:38 pm

I see an occasional post from Ray or his wife on F.B. he seems to be getting out and about with friends.

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: RAYM, how are you?

Postby singingholly » Mon Feb 09, 2015 12:56 pm

Thanks Kenny!
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

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raym
Posts: 1263
Joined: Sat Apr 16, 2011 11:08 am
Location: South Central PA

Re: RAYM, how are you? - Still Around

Postby raym » Mon Feb 09, 2015 1:39 pm

I started writing an update this morning but got sidetracked. I've not been having the best of times. I am still working full-time and getting out when I can though it takes its toll. I have two billiary drains to deal with blocked bile ducts. I've also been fighting an ESBL E coli infection which I just can't seem to shake so that has been landing me in the hospital here and there due to bacteria in my blood. I have a PICC line and do home antibiotic via IV. I just am having a hard time dealing with the fatigue that has come over me. I also am experiencing some fluid retention that I've never had before. I was hoping for more quality of life time but I guess last year WAS the QOL. I'm glad my wife and I did a lot of fun things during that time.

I'm not on any active chemo treatment. 1) I have/had an infection and 2) Srivarga is tough on the liver and that's already being taxed. As well I can't deal with being even more run down than I am now.

I know some are in worse shape than me but, I really have a hard time dealing with this. I can't do anything much. No hot tub due to liver drains; not a lot of fitness due to no energy; no vacation plans (not sure how long I have to live as well as I don't want to be far away in case I need treatment), I use to cook dinners but even that become too much after working all day)

For several months I was in a bad way mentally and just didn't feel like posting but that has gotten better.

Thanks for the concern!!!
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial

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

Re: RAYM, how are you?

Postby CRguy » Mon Feb 09, 2015 2:15 pm

Thanks for checking in Ray even though you've been through a bit of a ringer yourself.
Sending POSI+++ vibes your way.

In Harmony
CRguy
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

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Jack&KatiesMommy
Posts: 628
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: RAYM, how are you?

Postby Jack&KatiesMommy » Mon Feb 09, 2015 2:29 pm

Ray:
My heart is with your struggle. You need to try to get rest to help your body. There are more good times to come....you just need to get through the infections, etc. Do you have any sort of plan for moving forward? Can you meet with othe dcotors to get ideas for some unconventional ideas or courses of action? I'll be praying for you!
Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: RAYM, how are you?

Postby skypup » Mon Feb 09, 2015 4:39 pm

Ray, it is so good to hear from you. I am about to say one of the things we patients often complain about hearing, and am just hoping it will be okay since it is coming from another inoperable stage IV. I love your love of life -- have ever since you changed your avatar to that smiling guy enjoying the pleasure of a glass of red wine. I'm wishing you simple pleasures as you can find them.

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

Re: RAYM, how are you?

Postby Maia » Mon Feb 09, 2015 5:26 pm

Ray... so good to hear from you. ((Ray))

Danieljt
Posts: 309
Joined: Sun Aug 10, 2014 10:32 pm

Re: RAYM, how are you?

Postby Danieljt » Mon Feb 09, 2015 9:01 pm

Hi ray, I have been thinking about you. Everyday is a gift that we need to enjoy. I hope you have many many more.
Jackie and dan
70 male stage 3b cc
Dx 5/9/14
Resection 7/1/14
dx 9/14
65 yr wife DLCl
Sct 3/21/19 Ned last 8 mo.

kpjpmom
Posts: 197
Joined: Sat Nov 26, 2011 10:27 pm

Re: RAYM, how are you?

Postby kpjpmom » Mon Feb 09, 2015 10:43 pm

So glad to see a post from you Ray. You have been in my thoughts. Sorry that you are having so much fatigue and QOL issues. Thinking of you and hoping that you have days of sunshine and laughter. Thank you for all you have shared with us here! Take care.
KPJPMOM
DX March 2011 stg 3 cc
Kidney cancer May 2011
Folfox 6months (12 rnds)
It's Back! October 2012 colon resection, kidney removed.FOLFIRI/Erbitux starts Jan.2013
Completed FOLFIRI June 2013, Erbitux continues
March 2015 Met to spine. Radiation 15 treatments
Folfri, 5fu dropped after 3x, Erbitux and Iri continued CEA rising. Moved to
Folfox, Xeloda,Avastin until Feb. 2016 oxilap. Neuropathy returns.
Xeloda,Avastin continues.

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: RAYM, how are you?

Postby singingholly » Tue Feb 10, 2015 2:23 am

Stenght and good vibes your way.
Olivia
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: RAYM, how are you? **UPDATE by RAY**

Postby skypup » Tue Feb 10, 2015 12:31 pm

bump

michelle c
Posts: 1910
Joined: Wed Dec 02, 2009 3:58 am

Re: RAYM, how are you? **UPDATE by RAY**

Postby michelle c » Tue Feb 10, 2015 12:59 pm

Hi Ray,

Nice to hear from you - thank you for the update. Wow...still working full time, no wonder you are tired :) Glad to hear that you are feeling better emotionally - may you enjoy the simple joys in life with your loved ones. Thinking of you and sending you strength and warm wishes across the miles.
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: RAYM, how are you? **UPDATE by RAY**

Postby Delinda2 » Tue Feb 10, 2015 1:27 pm

Have thought of you so often, sorry things are tough for you right now. We understand that it's sometimes hard to post, just know that we all care & send you good wishes. (If wishes were horses beggers would ride, right?) Anyway, take care & get lots of rest. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."

nick49
Posts: 89
Joined: Sat Jul 19, 2014 9:18 am
Location: UK

Re: RAYM, how are you? **UPDATE by RAY**

Postby nick49 » Wed Feb 11, 2015 3:52 pm

Hi Ray,
I have been having a hard time both mentally and physically for the past couple of months, it was good to see your post.
I hope you get better, as soon as you can....

Best Regards
Nick
Diagnosed Stage IV Colon Cancer Aug 2013
Metastatic adenocarcinoma of ascending colon.
Distant Lymph Nodes
49. Male.
Chemo - August 2013 for 10 cycles.
Kras Mutation.
July 2014 - Started Zaltrap/Folfiri - 8 cycles completed.
http://www.nickjparry.co.uk


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