2014 member update -- for all of us--please post!

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
muskokamike
Posts: 229
Joined: Tue Feb 25, 2014 4:38 pm

Re: 2014 member update -- for all of us--please post!

Postby muskokamike » Wed Dec 24, 2014 12:09 pm

Feeling great and realize just how fortunate I am. It as been a real tough year but I have stayed positive and kept my chin up I am back playing ice hockey which was goal number one. This forum has been of great value for me and have searched topics regularly over the last year. I find experience speaks loudest and there is no sugar coating here.
Thanx again
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/

PaulC
Posts: 32
Joined: Mon Jun 16, 2014 2:58 pm
Facebook Username: paul.campbell

Re: 2014 member update -- for all of us--please post!

Postby PaulC » Wed Dec 24, 2014 3:22 pm

Hello everyone!

Well, it's Christmas Eve, I'll be heading p to my sister's house in a bit for the annual Christmas Eve dinner and celebration.

I have a lot to celebrate, diagnosed in January '14 with Stage IV CC, it's in my liver and lymph nodes. I'm not a candidate for surgery. 12 rounds of FOLFOX, on 5FU now (my oncologist gave me a break over the holidays). The first weeks after the initial diagnosis were rough, full of uncertainty and doubt. I'm fortunate to have a support system consisting of two wonderfull sisters and of course, a beautiful and loving wife to help me through the treatments.

I'm feeling fine now, normal almost, all things considered. Still have lingering neuropathy and on some days I feel fatigued and my stamina is not what it should be. Who knows what the future will bring but, for now, I'm taking it one day at a time.

To all those newly diagnosed, have faith and don't read the statistics, your cancer is your cancer, not someone else's.

Best Christmas wishes to everyone on this board, may the coming days be happy and healthful for you all. One thing I've learned, take some time to enjoy the life you have!
StageIV CC dx 1/14, TXNXM1b
Mets to liver/lymph nodes chest/pelvis
FOLFOX 2/14, finished after 12 cycles in 8/14.
6/24 scan, shrinkage, no new involvement
4/27/15 scan, no new involvement, shrinkage in liver mets, slight growth to lung met
5FU + Avastin summer 2015.
FOLFIRI started on 9/23/15
Folfiri + Erbitux started on 12/3

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

Re: 2014 member update -- for all of us--please post!

Postby NZJay » Wed Dec 24, 2014 5:01 pm

Merry Christmas, all.

I'm spending it with my 12 year old daughter, off to a family friend's house for a bbq and swim in the pool today.

My current cancer status:
Last scanned (PET) in March.
Next scan (CT) due January 16.
Hernia surgery will be happening late Jan - mid Feb.
CEA still sitting around 5, has not changed in months.

Feeling fine physically, energy is decent and I am not depressed or particularly anxious. Just hope I get the NED tick so I can keep on living this healthy post-cancer feeling.

Be safe.
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

shade
Posts: 157
Joined: Thu Feb 20, 2014 7:08 pm

Re: 2014 member update -- for all of us--please post!

Postby shade » Wed Dec 24, 2014 8:27 pm

I finished chemo last week, and am feeling OK with some mild hand/foot problems. My reversal is scheduled at Hopkins for late Jan, and my first post-chemo scan will also be in Jan. So a couple of big hurdles in Jan, but I am hopeful.

My chemo staff were amazing. That made the chemo much less horrible than it could have been. Every time I arrived there for an infusion session, they kept my spirits up from the moment I entered the door. Everyone knew my name - what a big difference that makes.
Stage IV rectal
10/12 Cancerous polyp removed
1/14 Local recurrence
3/14 Chemorad
6/14 LAR and resected liver met, temp ilio
12/14 finished FOLFOX / Avastin
1/15 ilio reversed, LARS
57 y/o dad

User avatar
CRguy
Posts: 10270
Joined: Sun Feb 10, 2008 6:00 pm

Re: 2014 member update -- for all of us--please post!

Postby CRguy » Thu Dec 25, 2014 2:14 am

I am alive and kicking
first suspicious "signs" in August of 2006
first official doctor's appointment in Feb 2007
The whole nine yards in May - July 2007
Resection August 2007
chemo until Dec 2007
Ileo takedown Feb 2008
test test.. bloods ..scan .. test test bloods scan scan
Yada Yada Yada
Oct 2009 ... lung met
CT .. PET ... MRI ... VATS resection ... 12 cycles FOLFOX
test test.. bloods ..scan .. test test bloods scan scan... :shock:

Yada Yada Yada

Christmas 2014 ... NED

" Sometimes life's a bitch but you can never let it get you down ! "
Don't retreat ... RELOAD !

Merry Christmas and all the best for a kickass New Year

CR
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

pog451
Posts: 799
Joined: Thu Oct 13, 2011 6:11 am
Facebook Username: andrew.morgan

Re: 2014 member update -- for all of us--please post!

Postby pog451 » Thu Dec 25, 2014 7:32 am

Well, Im alive, but only just.

I may post the full story later, but the short version is - Had a severe infection in my rectum that started to bleed and wouldn't stop. And yes, I was in f$%§ing China.

Do not, I repeat DO NOT get so ill you need to be hospitalised in China. Really.

Lost approx. 1/3 of my blood until they got it under control HB value 70 so not fit to fly.

Several blood transfusions and managed, with the astoundingly selfless help of a work colleague who stayed behind to help me, to creep back to Europe on Sunday. Just.

Checked in with my local team, they were not too worried, in to my local center on Sunday for checks, restaging etc. Looks like they are going to fit me with an ileostomy to get everything calmed down and then a bigger op to clear up with a permanent colostomy as a result. Ive been trying to avoid that, but just at the moment Ive given up caring.

Had a decent Xmas yesterday (German Xmas) although I am so exhausted I kept nodding off and generally I feel grotty, but that's blood loss for you.

Have a good party today and Ill try and be back when Im feeling better.
09.11 Dx @ 46, uT3uN1M0 G2
11.11 radio+Xeloda
01.12 LAR
03.12 Xeloda
09.12 Liver mets, 2 LN
09.12 Folfox+Avastin
02.13 Resection
04.13 Folfox & Avastin
11.13 Local recurrence
02-07.14 FOLFIRINOX
08.14 Re-rediation
Left us 28.05.2015

laneylou
Posts: 97
Joined: Tue Oct 09, 2012 8:25 pm

Re: 2014 member update -- for all of us--please post!

Postby laneylou » Thu Dec 25, 2014 4:19 pm

Doing fine, all things considered. Slowly starting to recover from the 2-year odyssey of radiation/chemo/surgeries/blood clot and stent placement and 2 tries at IVC filter removal/piriformis syndrome (from radiation and/or steroid-induced proximal muscle atrophy) and sciatic nerve injury, just starting to feel like myself again. Big props to my dedicated docs, physical therapists, and Pilates instructors for helping me get here.

Feeling a lot of survivor guilt - check in most everyday, but rarely post. So far so good - super-clean 2-year post-treatment CT in September (nothing out of the ordinary to watch, just the expected, stable post-surgical/post-radiation changes), undetectable CEA. Going in for checkup/CEA after the holiday, hopefully all will be well.

Post-reversal is settling down, I'm down to once/twice a day usually as long as I take my 2 Welchol every morning. A minor leak occasionally (I still wear a thin pad to be safe) but nothing too annoying, unless I'm really far away from a toilet, get a stomach bug (yikes) or forget my Welchol. Seriously, if any of you post-reversal folks have issues with severe urgency/incontinence after eating, ask your docs about it - it is magic for me. Works the same as Questran powder, but in tablet form rather than choking down the gritty Questran sludge, and won't wreck your teeth over time.

I told my docs, "the good news is, my old GI function is returning. The bad news is, my old GI function is returning" (the alternating constipation/loose stools I've had since childhood, that led to presumption of IBS + hemorrhoids and delayed my RC diagnosis for a few years). I think things are probably stabilizing now (about 1.5 years out) and it'll be a matter of managing my fiber intake from here out.

That's it for me ... thank you to the whole Colon Club family for being my safe haven and sounding board. All my very best wishes for a wonderful holiday season and good outcomes in the New Year.
Last edited by laneylou on Sun Dec 28, 2014 2:18 pm, edited 1 time in total.
Laine, dx @ 39, 4/12
T3N0M0 Stage IIA
Emergency IVF, 4/12
Chemorad, LAR/temp ileo, FOLFOX (no oxi after #2)
DVT on chemo; IVC filter
Reversal/port out 5/13
IVC filter finally out 2/14
NED (clean CT, scope, CEA)

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: 2014 member update -- for all of us--please post!

Postby Lee » Thu Dec 25, 2014 9:26 pm

Merry Christmas (or Happy Hanukkah) to everyone.

I'm doing good. I reached my 10 year anniversary since diagnoses this past April. A personal milestone for me and one that I hoped (and prayed) I would see someday. For those just starting on this journey, don't give up the hope and give it all you've got from day one.

I had to have a hernia surgery on my stoma (permanent colostomy) as it had gotten rather large. Dr took off about 4-5 inches from my colon. I went down 2 dress sizes, was very happy with the result. Just hated the recovery part. No walking, lifting or doing a whole lot of anything for about 8-10 weeks.

Finally got my weight under control for the 2nd time in the last few yrs. This time I PLAN to KEEP IT OFF!!!

I'm so glad this forum is here. Even today, I still learn a lot from this site. Sometimes, I feel I just might know a bit more than some of my Dr.(s), a direct result of the info that I have learned here.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Augustine
Posts: 41
Joined: Wed Aug 31, 2011 8:19 am

Re: 2014 member update -- for all of us--please post!

Postby Augustine » Fri Dec 26, 2014 2:56 am

Three and a half years as passed since I was diagnosed, am doing good and life has been back to normal. I have not posted much on Colon talk but did come in on a regular basis.

Would like to take to express my gratitude to fellow colon talk members, some have left us and some are still very much active in this forum, for their wonderful input and support over the last couple years, especially during the initial stage when I am very lost. Special thanks goes to BrownBagger, CRguy, BevG, CheeseHead, SkiFletch, weissoccermon, fritts44 and many more ….

Am thankful for all the help you all have render me over this journey.

Merry Xmas and an even better 2015 :D .

Best wishes
Augustine
25/7/2011:conoloscopy/CT scan
8/8/2011:Right hemicolectomy
T3 subserosal fats, N 0/34, M0
moderately diff adeno
10/2011: CT&MRI,small lesion in liver
12/2011: PET, no lesion detected
07/2012: CT scan clear
08/2013: CT scan clear

Ratepo
Posts: 71
Joined: Thu Oct 10, 2013 1:56 am

Re: 2014 member update -- for all of us--please post!

Postby Ratepo » Fri Dec 26, 2014 4:25 am

Current status of my dad: feeling great more than 2 years after first diagnosis colon cancer with mets (liver). Colostomy is shit :-) but he can live with it. NED at the moment, however because of xelox some mets disappeared and they will reappear one day, the question is when...Till that we are enjoying everyway we can as we didn't expect to celebrate Christmas with the entire family at all. In January new scans...
Father dx 10/12 rectal 4a
11/12 3 liver mets resected
01/13 colostomy
07/13 scan: 1 liver met, op. failed: multiple discovered, start xelox
12/13 mets shrink (kras mut.)
01/14 liver op new hospital: 2 mets removed others disappeared
05/14 & 09/14 NED
01/15 CEA rise to 5
05/15 local reccurence - rad + Xeloda
10/15 op. failed unremovable mets lower pelvis

User avatar
pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

Re: 2014 member update -- for all of us--please post!

Postby pollo65 » Fri Dec 26, 2014 10:01 am

Happy Holidays! Whew it is over at this house. Considering my diagnoses it just one holiday at a time.
Anyway I was diagnosed in January 09, had emergency surgery started chemo 2 months later and have been in and out of chemo since. I have had 2 lengthy remissions and am now where my tumors are growing slowly and onc and I are waiting for growth while maintaining all
I was given 2 years to live when diagnosed and have gotten six so I can't complain.
Love all you guys on CC but have had to back of since all the passions of our friends threw me for a loop..
Pollo 652
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

annalexandria
Posts: 682
Joined: Wed Sep 28, 2011 11:46 am
Location: Seattle, WA

Re: 2014 member update -- for all of us--please post!

Postby annalexandria » Fri Dec 26, 2014 2:03 pm

I'm not here much these days, but that's just because life has slowly returned to something closer to normal for me.
I've been NED for 3 years, and with my particular tumor type (a blended thing called a carcinosarcoma, grows very fast compared to the more standard stuff), that can be considered more or less cured (ugh, knock on wood).
I still struggle with the physical fall-out from treatment, but things have improved with time. Not perfect, but better. And I have absolutely no reason to complain, given how different the outcome could have been. I'm thinking about trying to get back to work, either in my old career as a librarian, or possibly as a teacher. The idea of doing something new is kind of appealing at this stage of my life.
I have one more PET scheduled in January, and if it's clear, I will be done scanning.

I don't get why I'm still around when so many are not, there's no rhyme or reason to it. My greatest hope is that more people with advanced cancer will live longer lives, perhaps even be cured, in the future.
Mom, librarian
Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
FOLFOX/Avastin Feb.'10-Aug '10
Carbo-Taxol Dec. '10-Feb. 2011
NED since Dec. 2011.

kkjenkins
Posts: 21
Joined: Wed Jul 16, 2014 6:15 pm
Location: Anchorage, Alaska

Re: 2014 member update -- for all of us--please post!

Postby kkjenkins » Fri Dec 26, 2014 2:48 pm

Hello,
My 'adventure' started in February 2014 as a routine colonscopy. A serrated sessile was found and removed! Pathology report came back as precancerous! My genetic testing for Lynch Syndrome came back negative. July 2014 - follow- up with another colonscopy -- a rare (beign) Granular Cell tumor had grown over the polyp! Still found residual precancerous cells so had another colonscopy in October 2014. My Dr., decided to burn a large area with a treatment Argon Plasma Coagulation (probably missed spelled it). In addition to the one serrated sessile that seems to have biotic strength also found several smaller sessiles as well! Fortunately, they were not precancerous!

Now, my Dr., wants to wait for 1 year before my next colonscopy. It sounds like great news but, I am starting to get anxious and feel like something isn't right but, I am sure that I am just over-reacting!

I started to look into my family history as colon cancer isn't a topic that my family would talk about. I knew that my father's brother died of colon cancer when he was 48 yr., but, then found out that my father had colon cancer when he was 37 yr., I was able to get my father's medical VA records (he past away 25+ years ago with heart disease). My father had 'colon issues' for 3-4 years prior being diagnosed with colon cancer at 37 yr.!

I decided to be proactive in my health and am seeing a nutritionist. I was diagnosed borderline diabetic (2nd year) so I am exercising and watching what I eat. I have lost 10 lbs so far and have 25 more to go.

I have an amazing husband and family who are supportive! We are eating healthier and exercising together as a family! I have also started a journal reflecting this passed year.
The Colon talk has give me an opportunity to ask questions and to get strength.
Karen, Educator
DX @ 51 yrs.
Serrated Sessile precancerous 2/2014
GCT 7/2014
Negative Lynch Syndrome
10/2014: APC treatment
4/2015: No more polyps - next colonscopy 4/2018
7/1/2016 DX 55yrs.
Stage IIA Breast Cancer
Invasive Ductal Carcinoma,Invasive Carcinoma in Stu, + (2) lymph nodes
Chemo and lots of radiation
Remission 4/6/2017

carmelkath
Posts: 27
Joined: Sun Jul 13, 2014 1:30 pm

Re: 2014 member update -- for all of us--please post!

Postby carmelkath » Fri Dec 26, 2014 3:46 pm

Hi All, Had my last chemo infusion on the 22nd of December. Will have scans and blood work in 2 weeks. I am in a clinical trial, so I will be watched pretty closely. Praying for a good report. Just wondering if anyone gets crippling anxiety for a couple of days after chemo. I just worry about everything and feel totally out of control.
Best Wishes for a Happy, healthy 2015.I pray for all of us every day. Kath
62 yr old female
dx 05/14
type 3b :t3n2m0
surg.05/30/14
12 rounds 5fu
currently in clinical trial.
Finished chemo 12/22/14

disco nap
Posts: 991
Joined: Sat Aug 07, 2010 10:45 am

Re: 2014 member update -- for all of us--please post!

Postby disco nap » Fri Dec 26, 2014 6:25 pm

I am still good. My next bloodwork is next week, my next big scan is in May. I'll hit my 5 year mark NED on July 6, 2015. I have had a few liver lump scares over the past year but so far everyone is saying benign.

I still check in here once in awhile. :)
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Oct 2019 - still NED.


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



Who is online

Users browsing this forum: krs029 and 6 guests