Update on me, not been a fun time

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

Update on me, not been a fun time

Postby raym » Wed Dec 10, 2014 12:27 pm

I've been avoiding the board for awhile. Last I updated I was receiving a biliary drain as my liver bile ducts were blocked by a enlarged lymph node (cancer). This was at the end of October. Soon after that procedure I spiked a high fever and was admitted to the hospital with an infection in my blood. Spent a little over a week there, mainly getting IV antibiotics. During that time they upsized my biliary drain and also placed a stent (endoscopic) on the left side of my liver as that was being blocked. I was released from the hospital with a PICC line and IV antibiotics to administer at home. After completing the antibiotics I felt not bad but just tired. I then started getting fevers again, though they were 100 and below. Last week I went to see my oncologist and he had blood cultures drawn and again I had an infection in my blood. I spent 4.5 days in the hospital to get that under control and am again on IV antibiotics at home.

Through these events I have lost even more weight and am struggling to gain it back. While I feel not too bad at the moment and have returned to work, I just feel like these events are signaling the beginning of the end and am very scared and worried. I really didn't have the mental strength to deal with Colon Talk noticed the post to check in. At this time I am not under any chemo and I think the chemo would bring me down much faster with all that is going on. The liver drain/stent are temporary and need to be replaced (not sure if temp next time or more permanent) and that procedure has me worried.

Physically I'm doing ok, but mentally I am very down.
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

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

Re: Update on me, not been a fun time

Postby KWT » Wed Dec 10, 2014 12:37 pm

Ray, it's good to hear from you although I wish the news was better. It's time to hit the protein shakes I know I am. I hope they have the infection under control so you can focus on the psychological problems I don't know how we do that :( butt it can be done. Best of luck

Marian1961
Posts: 278
Joined: Wed Sep 18, 2013 10:44 am

Re: Update on me, not been a fun time

Postby Marian1961 » Wed Dec 10, 2014 1:11 pm

So happy to see you on the board today. Not so happy about your last month, you have been down a rough road. I don't have any words of wisdom, just wanted you to know you were missed and that I'm sending hugs and good energy your way. Really hope the infection gets knocked out this time and you will be able to recover your strength and weight.
Caregiver 53 brother
Dx 09/13 stage iv, met liver
Emergency stoma
? Chemo 09/30

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

Re: Update on me, not been a fun time

Postby ams5796 » Wed Dec 10, 2014 1:54 pm

Ray,

As you can see, you have lots of folks on here who care very much about you. I hope that brings you some comfort during this difficult time. It tells a lot about you that you're working through this ordeal.

I'm sending you strong thoughts and prayers during this season of miracles.


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

Don.in.Dallas
Posts: 178
Joined: Sun Aug 31, 2014 10:43 pm
Location: Dallas, Texas USA

Re: Update on me, not been a fun time

Postby Don.in.Dallas » Wed Dec 10, 2014 2:00 pm

Ray, You have been traveling a long and tortuous road for nearly four years. By this time you MUST be tired, frustrated and worried. The burden you bear is great. Take some rest, gain some weight and relax your mind. Just don't take too long - you still have some battles to win. Very best wishes to you. -Don
Male 56 at DX 05/14
05/14 Resection, 3.2cm sigmoid CRC Stage IIIb, 2/17 nodes, T3N1M0
06/14 PET scan clear, portacath install
06/14 Begin FOLFOX6 12x, End 01/15
Now the scans begin
----
Previous: Laryngeal cancer
33 x rad
NED since 12/09

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Rob in PA
Posts: 2003
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Update on me, not been a fun time

Postby Rob in PA » Wed Dec 10, 2014 2:48 pm

That news SUCKS Ray! Thinking of you and praying for your strength (physically and mentally) to come back, especially for the holidays.


Cross state friend,
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

bitchslapped
Posts: 1527
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Update on me, not been a fun time

Postby bitchslapped » Wed Dec 10, 2014 2:52 pm

Yep, sometimes a person may lurk but just doesn't feel like "talking" on here & figure out how to put it all into words. I can just say "thanks for checking in", or "hope you can get to the bottom of this"... which I do, and you are. As a former caregiver (see my sig) lacking knowledge in the medical field, I am limited to offering mostly support on this forum as that was a long time ago, things change & I've forgotten some of fine details over time. Though my DH's situation was completely different than yours, today I'm going to go beyond that a bit.

I was just an "all elbows & assholes" wife who handled more bile drainage/bag changes /tube flushes/bile soaked laundry that you can shake a stick at. Then there were those life-saving trips (yes, plural) to the ER/ICU due to sepsis. Seemed at times if DH wasn't in the hospital DM was. They upsized the biliary tubing + added a stent to help facilitate bile drainage. This is good. Pooling bile can cause infection, thus the antibiotics. OK, so moving on, I'm just going to pose a few questions for your consideration in asking the docs (not to answer here necessarily), but for future reference. Let me preface by saying that you probably have a great surgeon + oncologist by now who knows their stuff:

1. Would you benefit from Ursodiol to aid in keeping the bile thin & flowing through the stent & tubing? (hell, my dog is on it)
2. Would it be beneficial to bring in an ID (doc of infectious disease) to help manage infections, if not now @ what point?
3. Are you seeing a top GI hepatic doc in your area?
4. At what temperature do the docs recommend you to head to the ER (101?)?

Your body is so busy right now fighting infection that it needs rest, not work. Consider your options. Keep us posted, chin up. You're on the right track w/your docs in managing this.

Best Wishes
Bitchslapped
Last edited by bitchslapped on Wed Dec 10, 2014 3:38 pm, edited 1 time in total.
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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

Re: Update on me, not been a fun time

Postby singingholly » Wed Dec 10, 2014 3:22 pm

Dear Ray, we all need a time to let ourselves go, to stop fighting for a while... Take a rest. If you feel physically good try to concentrate on this, enjoy this, and eat a lot of good and tasty food! You're so tired, this necessarily influences your mood and your way to look at things... I wish you can start to see things in a different way soon.
Big hug
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

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: Update on me, not been a fun time

Postby Stanfordmom » Wed Dec 10, 2014 3:31 pm

Ray,
Glad to hear from you but sorry about what you had to go through last month.

We all need take a break and rest for a little sometimes, before you start fighting again! Hope you feel better soon!
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

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Amy14760
Posts: 186
Joined: Mon Jul 02, 2012 10:08 am
Facebook Username: Amylynneehmann@gmail.com
Location: Stuttgart Germany / Western NY

Re: Update on me, not been a fun time

Postby Amy14760 » Wed Dec 10, 2014 3:42 pm

Hi Ray. Great to see you on the boards again. Work for me was always a blessing. Helped me feel normal so I hope you also are finding solace in getting back to a routine. You'll be in my thoughts as you work through this war.
Jun 12: Rectal cancer - Stage IIIC pT2N2 (15/19 pos nodes) - age 49
Jul 12: Resection w/ileostoma
Aug 12: 6 weeks rad w/Xeloda
Sep-Jan 13: FOLFOX - 6 rounds
Jan 13: clean scan
Mar 13: Reversal/Port out
Aug 13: Clean scope
Currently NED

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: Update on me, not been a fun time

Postby elise » Wed Dec 10, 2014 5:45 pm

I'm sending a BIG (((((HUG)))))

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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NZJay
Posts: 640
Joined: Mon Dec 16, 2013 3:00 pm
Location: NZ

Re: Update on me, not been a fun time

Postby NZJay » Wed Dec 10, 2014 6:21 pm

Sorry to hear about the state of things, Ray. I hope you find improvement and soon.

On the weight loss thing, have you tried homemade mass shakes? As I have only half a stomach, it's hard to get calories in, so I tried these and have managed to get 12kg back on my bones so far.
Blend up 1/2cup - 1 cup of oats, cup or 2 of milk, a tablespoon or two of peanut butter, and some choc or banana protein powder. Easy to drink and 800-1000 calories depending on how to work it. Not sure if that'll help but I know weight loss can drive a guy insane.

Best wishes.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

michelle c
Posts: 1894
Joined: Wed Dec 02, 2009 3:58 am

Re: Update on me, not been a fun time

Postby michelle c » Wed Dec 10, 2014 6:27 pm

Ray,
Nice to see you but I am sorry to hear that you are having a hard time. I hate the emotional toll that this disease puts on people. Thinking of you Ray, and wishing you the best, hang in there....xx
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

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dianetavegia
Posts: 2722
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Update on me, not been a fun time

Postby dianetavegia » Wed Dec 10, 2014 7:19 pm

Ray I'm so sorry you're dealing with so much. Can you assign someone to check in for you when you feel like crap and just don't want to hear good or bad news? Just someone to tell us you're needing our thoughts, prayers, whatever suits the person.

I can't imagine how down you feel. I hope you get some relief and healing from these infections and someone can come up with a better option.

Big hugs and my prayers,
Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Sharona
Posts: 187
Joined: Sun May 19, 2013 3:06 am
Facebook Username: Sharon Rauch

Re: Update on me, not been a fun time

Postby Sharona » Wed Dec 10, 2014 7:31 pm

Ray,
So sorry to hear what you are going through at this time. Know that you are in my thoughts and prayers.
Hugs,
Sharon
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
colostomy
FOLFIRI, FOLFIRI, avastin, Zaltrap
Stivarga
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15
http://www.caringbridge.org/visit/sharonrauch


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