Mop up chemo experiences

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Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Mop up chemo experiences

Postby Eleda » Fri Apr 19, 2019 1:21 am

Hi Susan
Glad to hear it's all over, It was the day after I ate the food Susan that I went poo
My surgeon starts you on lactulose immediately, accept for me because of fisture, but my god didn't need it.
It's crazy because Ur hyper aware of the slightest sensation,,,
Enjoy the all inclusive while you can

Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Fri Apr 19, 2019 7:59 am

Nothing yet, lots of peeing. Eating soupy textured foods, toast. Lots of burps.
Waiting.
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun Apr 21, 2019 9:32 pm

It is so true, I am aware of every weird sensation down there. I am not sure about clustering. I do know that when I so it seems like a lot of work, effort and not much comes out. I get some pretty sharp pains down there, more uncomfortable then the old stoma site. My daughter described take down site as looking like a cat's butt, accurate. They told me to keep it covered with gauze if I wanted so there isn't any oozing on my clothes, take off gauze in the shower and just let the water run on it. I haven't been that brave yet. It is Easter today and it was nice to put on a dress and not have to worry about how to disguise my pouch. Now I just have a pot belly and that's not as big a deal. Hopefully the belly will reduce in size as my gut heals.
Eating carefully, mindful and chewing well.
They sent me home with oxy prescription, gabapenetin and tylenol. I didn't go pick up the oxy or gaba from pharmacy. I had a few gabapentin from previous surgery and an only taking one a day(3 is dosage), Tylenol also only once.
I am certain that walking is far better for me then meds. I am resisting urge to go, I have strong pelvic floor and hopefully this will build it us further.
Sleep is so appealing, managed to stay up all day. Friends have brought by soups so I am set up meals when my husband returns to work tomorrow.
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Mop up chemo experiences

Postby Eleda » Mon Apr 22, 2019 9:14 am

It seems Ur flying it Susan :D :D
I'm still going a knobs ( lol) so sore bum from rubbing too much
So a lot of clustering :evil: :evil:
Seems every day is a little better so I'm hopeful that once the poo is properly firm I'll b able to hold longer so in turn less wiping so all should b better,,,,
In saying that I ate a burger and taco fries last nigh on the way home ( so waiting for the fallout today :shock: )
My bad!!!!!! Lol
I want to b back to normal (ISH)
I've no patience for sickness lol
I've a bit of mucusy poo yesterday and today,
Might b the physillum husk???
I dunno
Not a problem tho ...
Hope today is going good for u
Enjoy Easter
Keep us updated

ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Apr 22, 2019 11:22 am

It is strange how much better daytime is then night. Maybe I relax, or horizontal position gets things moving because 7 trips to toilet in 4 hours. It feels like a lot comes out but just tiny bit. I am trying to be busy during day, avoiding pain pills they sent home with me, sticking with Tylenol. Sluggish this morning but don’t want to stay in bed. I had a small cup of coffee to avoid caffeine withdrawal. I am beginning a notebook with what I ate, drink, pooped, exercise to look for patterns.
A burger, taco, fries sound good. We had a party at our winery, stopped in for a while. I didn’t drink but a few sips of wine, stuck to water, kombucha.
First day home alone, what to do, what to do? Adele I have no patience either.
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Mop up chemo experiences

Postby Eleda » Mon Apr 22, 2019 11:34 am

Don't torture urself ATM with a food diary Susan!!!
I did it for 4 weeks
Nothing made sense, because different foods breakdown at different times for different people,,,, I've just now realized I seem to have a daily pattern ( only past few days);
Obviously don't eat spicy wings or beans but other than that it's hard to get a time scale on food in/ food out
I tried fasting because I was exausted from pooping but got dioreah so it's allllll very random ATM
For all of us lol
ADELE X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon Apr 29, 2019 4:35 pm

So far so good. I made some poor food choices yesterday and had the runs, today sticking to what I know. I walked 8.5 K steps and played Bocce before the too rich food so that was a good day. It is so nice to just wear what I want and not have to work around the bag.
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Thu May 09, 2019 4:45 pm

Experiencing some pain as food moves past the site of the anastomosis. Trying to remember to chew, chew, chew. Is this a problem anyone else has experienced? I can literally feel the food move down through lower colon to rectum, gives me a since of when I have to plan a trip to toilet. I have control, am able to finish whatever I am doing, go to toilet. The Pain though when I am experiencing it is intense, catch my breathe.
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sat May 11, 2019 9:20 pm

I am sorry for you and your day. Hope you find some comfort in knowing You were heard.
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun Aug 25, 2019 8:28 pm

Longtime no stop, just catching up.
I am back to work full time. Done a lot of hiking over summer , 5 and 1/2 miles is my best. I am a mosquito magnet, one would think all that chem and cancer would make me unattractive. My goal this summer is to grow all out fruits and veggies, successful so far. Today I went kayaking with family, first time since diagnosis. Going with a bag didn’t appeal, was a little anxious about needing to go but it was okay. I have an every two or three day clean out and the rest of the time it is okay.
Celebrating my 2nd anniversary this Monday, New.y married whenI was diagnosed, glad to be able to celebrate finally.
Miss you all but know if we aren’t online, hopefully, things are good.
Xox,
Susan
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun Dec 15, 2019 12:08 am

CT scan Monday was clean. That’s number two, first since reversal.
Most days are okay, every third or fourth day is a total clean out. I can’t figure out which causes it but spend at least 7 or 8 trips to bathroom. Then it’s back to normal again. Bum sure gets sore when away from home for too long. A bidet is salvation. Living a good life is the best thing, happy holidays.
S
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Wed Jun 23, 2021 1:32 am

So it nearly four years since mt diagnosis. I saw oncologist yesterday, all good with labs, CT scan clean and get a year from from a colonoscopy. Cause to celebrate. I am starting to run with my husband, life has been good. A few foods a wish I could still enjoy but overall no complaints. Still challenging days but five or six runs to toilet and I move on for a few weeks without issue.
I am alive, get to love and be loved.
Cancer sucks but we don’t have to be owned by it,
Susan
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Mop up chemo experiences

Postby Claudine » Wed Jun 23, 2021 10:35 am

Fantastic! Here's to a fun summer full of jogging and other good times!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23


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