Just starting the fight

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MikeManess
Posts: 86
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Just starting the fight

Postby MikeManess » Sat Apr 09, 2016 7:06 pm

Like most on this board, I found it by searching for any information I could find on CRC. I'm newly diagnosed with CRC, tentatively staged as Stage 3. It's been a long road to get this far.

About a year ago, I started having issues with pain in my intestine. I went to a nearby medical clinic and met with a gastroenterologist. He took a blood sample, and decided I had gastritis. For that, he gave me a prescription of Nexium, with instructions to take it daily as needed. Well, it didn't get better, so I went back to him.

Next up, after another blood test, I was sent to have an ultrasound. Nothing out of the ordinary on the ultrasound, so I was pronounced as having IBS. I was given more pills and instructed to begin to eliminate various items from my diet to discover the trigger food or foods that caused the pain, diarrhea, and constipation.

Of course, nothing helped. After several months, I decided to bypass that gastroenterologist and have a colonoscopy. Since I'm here, it's no secret what they found. 9 benign polyps and one large tumor in my ascending colon causing a partial blockage. So much for the gastroenterologist's diagnosis. In all fairness, had I gone back he might have decided to send me for a colonoscopy, but I would have thought the colonoscopy would have been the option before an ultrasound, but what the heck - I got it diagnosed correctly and that's all that matters.

I really stressed over where to go for treatment and decided on UT Southwestern in Dallas. It has a very good colorectal cancer department and I wanted the best I could reasonably get.

I've had a CT scan and the staging is stage 3 based on seeing lymph nodes in the contrast scan. The diagnosis will be modified after the pathology report from surgery in about 3 weeks.

I've been told that I face 6 months of chemo after surgery, so I guess I get the full blown treatment for an ascending colon tumor. I count myself lucky that I won't be 'bagging it' after surgery.

A couple of spots were found in my lungs and one in the liver, but they don't believe those are significant at the moment. They'll watch them over time and see if they change, but for now I'm considered stage 3.

I'm having a bit of pain in my abdominal area, so the surgeon instructed me to take Miralax twice a day. He says it's better right now to have diarrhea rather than constipation (which I do occasionally). It's possible to have a 'blow out' (his words) and that would be an emergency issue should that happen. So I guess I will have to suffer diarrhea daily for the next few weeks - which I understand will continue for quite some time after surgery.

I've searched quite a bit and I can find lots of stories and posts about chemo and it's effects, but very little about the surgery and recovery from surgery. So I'm going to try to post my impressions of that part of the treatment for those that are diagnosed later. I've been told to expect to be in the hospital for 5-7 days after surgery. So we'll see how that goes and if I leave early, later, etc.

Anyway, sorry to be here .. wish I was still ignorant of CRC, but unfortunately I'm not. I know cancer personally because my wife of 16 years was taken in about 8 months with stage 4 ovarian cancer. One thing I learned from her experience - do what the doctors tell you .. don't argue too much and decide the course of your own treatment. With stage 4 ovarian, the end was inevitable, but had she followed the doctor's suggestions I believe she would have survived longer. I'm not going to make that mistake.

I'm also going to a major cancer center. I believe they are on the cusp of new techniques and treatments which I might have helped her somewhat. Load the dice and stack the cards in your favor as much as possible. Lie and cheat - do whatever you can because this is the fight of your life, for you life. Don't play fair and take every advantage you can.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Just starting the fight

Postby midlifemom » Sat Apr 09, 2016 8:16 pm

Mike,
Welcome to our group. Sorry that you had to find us, but glad that you did. We have a boatload of helpful folks.

Regarding info on surgery, I can tell you about me. I had a colectomy of my transverse/descending colon - right at the juncture.
I had a pain block instead of an epidural, plus a local type pump along the incision which was removed after a few days - sorry, can't remember the name of it. I also had the self-administered pain meds which I rarely used - so pain was very well managed.
I had an open surgery and was hospitalized for five days. I was eating regular food by time of discharge.
I was slightly anemic at time of discharge so took iron and magnesium for a week or so.
Once home, it took a few weeks to recover - but was working part-time from home within just a few weeks. I was more tired and had to nap frequently.
I started chemo four weeks about after discharge.

Sorry to hear the news about your wife. I hope you have a support system in place. Having folks bring food, do errands, drive you to appointments will be very helpful.

Only word of advice at this point is to make sure you have a certified colorectal surgeon - not a general surgeon. Like you said, go for the best.

Please come back often and ask any questions.
Good luck!
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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MikeManess
Posts: 86
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Just starting the fight

Postby MikeManess » Sat Apr 09, 2016 8:53 pm

The gastroenterologist that did the colonoscopy recommended a surgeon. I looked him up and found he was a general surgeon. I knew that was a no-no both from my mother (a retired RN) and from my experience with my late wife. She was originally with a gynecological oncologist, but became impatient and switched to a general oncologist. The surgeon I'm with is a surgical oncologist specializing in gastrointestinal cancers. As you said, go with the best.

As far as support, I got remarried about a year ago and my wife will be with me in the hospital. She's planning to stay there with me as long as I'm in the hospital. She's already arranging her work schedule to allow her to be with me 24/7. I don't expect her to be there, but she will be. She keeps saying that we're in this together. Having been where she is now, I know how difficult it is for her. It's actually more difficult for her than it is for me. I didn't realize this before with my late wife, but it's true .. it's more difficult on your loved ones than it is for you - at least in my case.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

Travelgirl
Posts: 123
Joined: Sun Dec 20, 2015 4:17 am
Facebook Username: Jac gar
Location: Florida

Re: Just starting the fight

Postby Travelgirl » Sat Apr 09, 2016 9:48 pm

Hello and sorry about what your going through.

But you did come to the right place. Lots of friendly and helpful people here.

Many have been or are going through your exact type of CRC.

Keep us posted and I wish you the best and praying for a quick recovery.

God Bless..
Travel Girl
53/F
DX-CC 12/19/15
Tumor location Cecum
Tumor Type -Adenocarcinoma arising background sessile serrated polyp high grade dysplasia
Tumor size 1.5 cm
TNM - T1, N0, M0
Stage 1
Baseline 12/15 CEA 2.4, 8/16 CEA 1.7,11/15 CEA 2.3
Surgical Margins Clear
Lynch - Neg
Primary Surgery 1/11/16 LAR right colon and portion of ileum right hemicolectomy
1/4 follicular lymphoma- Wait n Watch (found in CT scan for Colon cancer) a 2 for 1 special.
8/16/16 NED for Colon/Lymphoma nodes have shrunk on their own.

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Just starting the fight

Postby NateA » Sat Apr 09, 2016 9:56 pm

Seems like, if possible, they would extract a biopsy from your lungs and liver, I'd want to know exactly what your dealing with. Glad your here!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

weisssoccermom
Posts: 5963
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Just starting the fight

Postby weisssoccermom » Sat Apr 09, 2016 10:20 pm

Hello Mike...and as others have said, welcome to the group.
I don't have much more to say except....you may want to tell your wife to consider arranging her work schedule so that she is with you 24/7 at home for the first two weeks rather than when you are in the hospital. I only say this because when you are in the hospital, you will be tired, will be doing your fair share of sleeping (don't forget those pain meds) and if your wife can only take a limited amount of time off, you may want to rethink and have her with you at home as opposed to when you are in the hospital.
Just a thought to take into consideration and to seriously talk with her about. You WILL need the help more at home than when you're in the hospital.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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ANDRETEXAS
Posts: 639
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Just starting the fight

Postby ANDRETEXAS » Sun Apr 10, 2016 2:10 am

Hi Mike....

Very familiar with Forney.....especially all those antique stores along Highway 80.
Just had my two-year post surgery CT scan on March 23. I was also diagnosed Stage 3 (b).
Sorry you had to join, but you found a great place to get answers to your questions as you move forward.
All I can say at this point is to take one day at a time, don't google CRC, don't read statistics (none will apply to you), and whatever you do, stay positive !!

Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Just starting the fight

Postby KElizabeth » Sun Apr 10, 2016 9:30 am

Sorry you are going through this now after going through it so recently with your wife. Try to keep an uplifting group of family and friends by your side while you trudge through chemo and you should do well.
Hugs.
Elizabeth
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

Nik Colon

Re: Just starting the fight

Postby Nik Colon » Sun Apr 10, 2016 9:48 am

Welcome, sorry about your wife and your dx. Best wishes

Nik Colon

Re: Just starting the fight

Postby Nik Colon » Sun Apr 10, 2016 10:05 am

My surgery experience :

I had a foot of my colon removed (sigmoid), and 20% of my liver. Laparoscopic for colon. 3 inch incision for liver. (5 incisions total). Had pain block, but would have asked for epi knowing what I know now. Only reason is because they couldn't do a pain block for the liver cuz too close to lungs which might have stopped breathing, therefor extreme pain upon breathing when I woke up, but they got it under control. Other than that, the pain block worked well for the rest. I was out after 4 1/2 days. I had deep burning pain in liver area around 3 weeks/month after, which subsided after a few weeks. I had and still have issues with constipation. Watch out for that when on pain meds. I also had to do a daily lovenox shot for a month. Best advise to prevent bruising, pinch skin, insert needle, Inject SLOWLY, keep needle in for 10 seconds, then remove.

DarknessEmbraced
Posts: 3444
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Just starting the fight

Postby DarknessEmbraced » Sun Apr 10, 2016 12:46 pm

Welcome to the board, sorry for the reason you are here and sorry to hear of the loss of your wife. This board is made of many supportive people who have a lot of knowledge! We are here with you every step of the 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! :)

Chayo
Posts: 25
Joined: Thu Nov 26, 2015 10:42 pm
Facebook Username: Chayo.ramirez

Re: Just starting the fight

Postby Chayo » Sun Apr 10, 2016 3:43 pm

Welcome from not too far away from you in Arlington. UT Southwestern is a great choice from what I hear.

I second a previous poster who said you'll need more help at home than in the hospital. There was always a nurse to help me up or bring me what I needed in the hospital, but once at home, I could not have gotten out of bed if I hadn't had someone there with me.

For reference: tumor in the sigmoid colon, surgery on a Wednesday, home on Sunday. Chemo started right at 6 weeks after surgery.
Chayo
Dx 11/24/2015 Colon Cancer at age 45
Adenocarcinoma in the sigmoid colon
12/16/15 colectomy
Stage 2, T3N0
Started Folfiri Feb 1, 2016

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MikeManess
Posts: 86
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: Just starting the fight

Postby MikeManess » Sun Apr 10, 2016 7:30 pm

Thanks everyone for all the kind words and support. To AndreTexas, thank you for the PM. Board rules don't allow me to respond to a PM until I've been here a while. I was at UT Southwestern all day on Friday, too. I might have seen you there as well (5th floor, Simmons Center).

My wife will be at home most days. She only works part time in the evening, so she'll be home during the day and gone for only 5 hours per night.

I had been having a lot of pain in my abdominal area. My surgeon suggested that I take Miralax twice a day. That's because peristalsis appears to have stopped in the segment of colon where the tumor is. Although I have diarrhea, I also don't have any pain ... for the first time in a long time. Miralax is a miracle. I'm trying to figure out how I'm going to go to work every day with diarrhea! Since I can work from home, I might consider doing that, at least for now. I'll have to figure out how to make the trip in to/from work without 'accidents', as well as just surviving the day at work with diarrhea.

Maybe I'm strange, but I'm actually looking forward to getting the show on the road. Getting surgery done and then on into chemo. I want this cancer stuff gone, dead, and finished. The sooner the better, and then maybe I can get on with the rest of my life. It's going to be a long, hard road for the next few months, but I'm ready for the fight - bring it on!
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Just starting the fight

Postby WriterGirl1969 » Sun Apr 10, 2016 8:45 pm

MikeManess wrote:I guess I will have to suffer diarrhea daily for the next few weeks - which I understand will continue for quite some time after surgery. I've searched quite a bit and I can find lots of stories and posts about chemo and it's effects, but very little about the surgery and recovery from surgery. So I'm going to try to post my impressions of that part of the treatment for those that are diagnosed later. I've been told to expect to be in the hospital for 5-7 days after surgery. So we'll see how that goes and if I leave early, later, etc.


I'm newly out of surgery, so I'll lend that info in case it's helpful to you or anyone else (finally I can be helpful instead of the one sucking up everyone else's helpfulness!) :)

I had surgery on 3/31 (Thursday) to remove 1 large mass in sigmoid near descending. Surgery was lap vs. open. I had 3 very small incisions bottom, right side and top of abdomen, and 1 2-3 inch incision left side of my navel to remove the mass through. They used surgical glue to close, so no staples or stitches, which I really thought was great. Directly out of surgery I had a little nausea, and that was about the most painful thing for me. Maybe a 6 on the 1-10 scale. Luckily it didn't last. Had a little sore throat from the breathing tube, but they let me have ice chips which helped immensely.

I was what my surgeon called "motivated" and knew that the gas from the air you get filled with is the cause of most of the pain, so I was up and walking that evening. Just a very short walk around 1/4 of the ward, but I was up. Pain was maybe a 3 or 4 on the 1-10 scale. I described it as feeling like having pulled muscles in the gut. Dr. said this was actually a pretty accurate description of how things were inside.

Next day (Friday), I got up and walked more. I think 3 times (am, noon, late afternoon). Was on a morphine pump, and used it maybe every 15 minutes or so for most of the day. Lots of sleeping and resting. Liquid diet. The 1 lap incision top of abdomen was really close to my diaphram, so I had some pressure there that made me feel like I needed to take really deep breaths all the time. Had some small smears of poo, which I totally claimed was my first poop. Put on my "I POOPED TODAY" T-Shirt.

Saturday I got to take a shower. No direct water jet on the incisions, but they could get indirect wet, so I washed my hair and did a washcloth everywhere else. Felt GREAT. Walked a little more, had my first real poo, which was diarrhea and came out with lots of gas. Got to eat some pudding, which was HEAVEN. More walking, more poo. Only used morphine pump about once an hour. Pain level was about a 2 on 1-10 scale. Doc said I could go on solid foods, and probably go home next day. Started with pancakes and pudding, to keep things mild.

Sunday (4/3) I was eating more normally, had more gas, and didn't use the morphine pump at all. They disconnected the IV / Pump. Did more walking. Got released to go home at around Noon.

So here I am a week out from that. I was sent home with pain meds (percoset), but have only taken maybe 4 total. Mostly I just continue with Tylenol when I need it. I just drove for the first time yesterday, and that went pretty well. Through the week I did mall walking to keep up the movement. Am back to a fully normal diet at this point, and nothing has really bothered me. Poops were still soft first day or two home, but as of today they are almost normal consistency, although still thin and snake-like in appearance. I have had some bruising show up, some low that were probably from something they used on me during surgery to hold things up for them. Other slight bruising on the front right of tummy, but nothing too major. I'm going to try to go back to work mid-week this week, starting with a half day.

I realize this may not be the timeline everyone experiences. Hopefully it's helpful to someone. :)

==Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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Jacques
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Location: Occitanie

Pre-surgery prep instructions

Postby Jacques » Mon Apr 11, 2016 7:18 am

MikeManess wrote:... I've searched quite a bit and I can find lots of stories and posts about chemo and it's effects, but very little about the surgery and recovery from surgery. So I'm going to try to post my impressions of that part of the treatment for those that are diagnosed later. I've been told to expect to be in the hospital for 5-7 days after surgery. So we'll see how that goes and if I leave early, later, etc..

For surgery, be sure to obtain and read your hospital's instructions for pre-surgery prep. Examples of prep instructions are given in the links below:

Preparing for Your Surgery - Mayo Clinic Health System
http://mayoclinichealthsystem.org/~/media/local-files/menomonie/documents/906344.pdf

Pre-Operative Bathing Instructions
http://drrobertlaprademd.com/pre-operative-bathing-instructions/

An important part of the prep procedure is the full-body wash with antiseptic soap done the day before surgery as well as the morning of the day you go into surgery.
...The surgeon’s orders may include the patient taking a bath or showering with an
antiseptic agent the night before surgery and/or the morning of surgery...

https://www.ast.org/uploadedFiles/Main_Site/Content/About_Us/Standard_Skin_Prep.pdf

Another important point is to wear clean, recently washed clothes when you go in for surgery. All of this is to help prevent surgery-site or hospital-acquired infections.


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