I'm sorry for being MIA

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I'm sorry for being MIA

Postby Icesk8tr » Tue Jan 27, 2015 1:36 pm

I feel so guilty. There are many people on this wonderful forum that I have not responded to. Vicki, Belle, Cherie, JulieJ, Maia, Voxx, Delinda, Ray, exaussie and MANY, MANY others. Please forgive me if I didn't mention your name. I have been lurking but unable to post. I couldn't adequately say what was in my heart so I said nothing. I apologize for this. Since my seventh surgery things have not gone well. I've had blockages pain and nausea. My December CT scan was considered STABLE with...
Left Para aortic node
Left external iliac node
Numerous mesenteric nodes
2 liver lesions
Probable implant in the right anterior abdominal wall.

I had three weeks off from chemo during the holidays.
Now my CEA has taken quite a jump. I couldn't get my last round of chemo due to low blood counts, even with six injections of Neupogen. I'm worried that FOLFIRI has stopped working. I don't know why I'm having such a hard time posting on CT. I've been on the forum for three years. Maybe it's because I haven't been feeling well. Even when my family or friends call me, I wait to call them back until I can sound upbeat and productive. Ughhhh I hate cancer so much.

Stage IV CC 2010

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Re: I'm sorry for being MIA

Postby alphagam » Tue Jan 27, 2015 1:40 pm

Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

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Location: Washington state

Re: I'm sorry for being MIA

Postby Delinda2 » Tue Jan 27, 2015 1:52 pm

I understand too well how you feel - no apology necessary. Just glad you checked in & sorry you're having such a hard time. I withdrew for the last few months & only recently returned. Your CC family is always here for you, no matter what. Hang in there. Hugs! 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."

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Re: I'm sorry for being MIA

Postby bitchslapped » Tue Jan 27, 2015 2:40 pm

Sometimes the words come, sometimes they don't, sometimes it takes a few days to put thoughts together. I understand wanting to be upbeat when responding or speaking to others, but somehow I wonder if there would be nearly the posts on the forum if our members waited for that. :wink: People have to do what they have to do for themselves & this forum is really tough sometimes...we all get it. Don't waste your time on guilt.
Stable is good (not good enough, I know), but hopefully those blood counts are up from the chemo break & you can get back on track again.

Best Wishes
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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Re: I'm sorry for being MIA

Postby BrownBagger » Tue Jan 27, 2015 2:47 pm

Sorry for all your troubles, Christine. My thoughts and best wishes for a better tomorrow.
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.

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Re: I'm sorry for being MIA

Postby juliej » Tue Jan 27, 2015 4:19 pm

Christine, you've been through so very, very much. I completely understand why you haven't been able to post. There were times during my treatment when I tried to have as much normalcy as I could, which often felt like sleepwalking through the days and a bit of play-acting around family and friends. It's how we cope.

I'm happy to hear your December scan was stable, but I want so much more for you! Have you looked into the PD-L1 or TAS-102 clinical trials at MSK, or any of the other immunotherapy trials there? Even if they aren't THE answer, they may be an option for controlling the cancer until the next big thing arrives. Please know that we all love you and are rooting for you, hoping for the best and wishing you good thoughts as each day dawns.

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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Re: I'm sorry for being MIA

Postby Cherie » Tue Jan 27, 2015 4:43 pm

Hi Christine

This is exactly how I feel. When hope is fading there just isn't much to say. Constantly putting on a happy face is hard to do. I am just so sick of people calling me with empty offerers of help. The only person who is really there for me is my husband and he is doing everything. Blow after blow of this disease just beats you down and there is no reason to apologise for being MIA we all do it and need it.

cherie xoxo
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

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Re: I'm sorry for being MIA

Postby midlifemom » Tue Jan 27, 2015 5:13 pm

Hugs back to you with wishes for a better day tomorrow, and the day after, and the day after.......
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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Joined: Fri Jul 16, 2010 9:24 am

Re: I'm sorry for being MIA

Postby tammylayne » Tue Jan 27, 2015 7:01 pm

Never a need to apologize. You were missed...of course...but if any group of people are going to understand, it is this one.

Never a need to impress, never a need to participate any more then one can....but we are always able to take as much support and love as needed. A pretty cool set up :lol:

Sending you many good thoughts....and many gentle hugs...
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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Re: I'm sorry for being MIA

Postby CRguy » Tue Jan 27, 2015 9:31 pm

Icesk8tr wrote:I feel so guilty.

" Love means never having to say you're sorry "

Nice that you did…. BUTT not necessary….

some way, some time some how …… we've all BTDT…

Glad you are back online in the groove !!!!!

sending LOVE Peace and Harmony
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Location: Portland, OR

Re: I'm sorry for being MIA

Postby teachpdx » Tue Jan 27, 2015 9:43 pm

Glad that you can vent here & don't have to pretend to be or feel something you're not. Hope you find something to smile about and can have some peace on some level. Hugs and prayers :?
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!

michelle c
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Re: I'm sorry for being MIA

Postby michelle c » Tue Jan 27, 2015 10:51 pm

Don't ever apologise. Totally understandable why you were missing in action. Sometimes you just don't have the energy for anything. Sorry to hear that you are saving a rough time, Christine. We are always here for you - to listen, to understand. Hang in there, post when you want to - you are always in our thoughts and heart. Much love to you ❤❤❤
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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Rob in PA
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Re: I'm sorry for being MIA

Postby Rob in PA » Wed Jan 28, 2015 12:27 am

Ditto what the others have said....this disease sucks!

Love and strength to ya

dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
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

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Re: I'm sorry for being MIA

Postby Stanfordmom » Wed Jan 28, 2015 2:10 am

I was thinking about you recently. So sorry about your recent scan results. Glad that you are updating us. please no need to apologize, ever.

Sending you love and positive energy to continue the fight! you will be in my prayers.

DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo

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Re: I'm sorry for being MIA

Postby Icesk8tr » Tue Feb 03, 2015 5:50 pm

Thank you everyone for your love and support. It means the world to me. I should be having a CT scan in February to see what the latest is :roll:

Hugs ❤️
Stage IV CC 2010

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