Clustering advice

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Cmarie03
Posts: 25
Joined: Sat Feb 16, 2019 6:35 pm

Clustering advice

Postby Cmarie03 » Wed May 01, 2019 6:35 am

I am one week out from radiation for rectal cancer. I’m experiencing clustering. Does anyone have any good advice? It has me in tears bc I have a 3yo and 9mo and it’s so hard to be tied up in bathroom. It’s always worst in mornings. My doctor told me it may go away, it may not. She suggested fiber con and lots of water. Anything else? This is hard.
Diagnosed stage IIIC rectal cancer 12/20/18 in ER
4 rounds FOLFOX January 2019-February 2019
Xeloda/Radiation March 2019-April 2019
4 more rounds FOLFOX 6/5-7/17
Surgery sched 8/20/19

Eleda
Posts: 293
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Clustering advice

Postby Eleda » Wed May 01, 2019 8:46 am

Don't take this as medical advice bur someone told me to take a soup spoon of bicarbonate of soda on an empty stomach first thing, and I did it for 2 days to make sure it wasn't Just concidental, ( and it wasn't ) because today I'm back to 864 trips to the bathroom for a small amount of poo and sore bleeding ass again :mrgreen: :mrgreen: :mrgreen:

So the effect of the bicarb for me was cleaout within an hour, no cramps no bad side effects, and done pretty much for the day #slightlynormalagain

Worth a try, I've to work Thursday Friday Saturday this week and can't manage like this so I'll b back to it tomorrow,,,

In fact I've taken half the amount 10 min ago because it's 2.45 pm here in Ireland

Hope u get some relief,, " I feel Ur pain "
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

NHMike
Posts: 1977
Joined: Fri Jul 21, 2017 3:43 am

Re: Clustering advice

Postby NHMike » Wed May 01, 2019 10:00 am

I didn't get clustering from radiation - I had it after the reversal. I just looked at my bathroom log and there were 15 trips to the bathroom ranging from a minute to half an hour. So I know what a pain it can be. Sometimes this lasts for over 24 hours. I haven't eaten since Monday night (it's Wednesday morning here) and will sometimes just not eat anything for 36-48 hours as I know that I won't have to go to the bathroom for at least 36 hours afterwards. Not a great solution because you can feel weak or dizzy but it works.

Some things that can help:

- Imodium - drug that slows down the GI system but can cause constipation
- Daily enemas - some do these daily so that they get cleaned out in the morning and can do what they want to the rest of the day
- Miralax - to try and flush things out faster
- Fiber for better clumping so that it isn't a little at a time over and over and over again

If it's just related to radiation, then hopefully things will go back to normal after a few weeks.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Eleda
Posts: 293
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Clustering advice

Postby Eleda » Wed May 01, 2019 11:40 am

My god Mike how r u managing???
I tried fasting but for the day after still had mucus and watery poo, I'm hoping it will improve drastically because this is rough,,,,, I've to work next 3 days and dreading it TBH
Back to clear out Inthe morning, ( not ideal, but necessary)
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

NHMike
Posts: 1977
Joined: Fri Jul 21, 2017 3:43 am

Re: Clustering advice

Postby NHMike » Wed May 01, 2019 1:28 pm

Eleda wrote:My god Mike how r u managing???
I tried fasting but for the day after still had mucus and watery poo, I'm hoping it will improve drastically because this is rough,,,,, I've to work next 3 days and dreading it TBH
Back to clear out Inthe morning, ( not ideal, but necessary)
ADELE X


It's quite tough.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Gravelyguy
Posts: 164
Joined: Thu Jul 05, 2018 6:03 pm

Re: Clustering advice

Postby Gravelyguy » Wed May 01, 2019 3:03 pm

Mike,

Glad to see that you are checking in on the board. Sorry you are still having so much trouble. Hope things get better.

I have reached a pretty acceptable "normal". Most days are great with a little clustering in the evenings. Every once in a while I have a not so good day but not very often. I am still taking a higher than maintenance dosage of a good probiotic and a magnesium supplement every other day along with eating foods with soluble fiber. This helps me but not sure if it will help everyone. This is for post reversal. I had short course radiation then surgery so got to skip the radiation bowel issues.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

User avatar
kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Clustering advice

Postby kellywin » Wed May 01, 2019 6:30 pm

Fiber and time. With the fiber it's going to be hard to find a balance right now if you're just out from radiation as each day/week will start getting better. Not sure where you are in your treatment (haven't been on the board in a long time and I know treatment plans can vary). Large amounts of fiber in a smaller amount of water will slow things down. For me, I didn't get on the fiber train until after my surgery, and for a long time it was a huge overflowing spoon of metamucil in a coffee cup (maybe 8 oz of water). I did that for years until I didn't need it anymore.

This is a rough time, still in the razor blade phase. It will get better. The journey sucks though.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

Caat55
Posts: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Clustering advice

Postby Caat55 » Thu May 09, 2019 4:40 pm

This was explained to be a the body's response the treatment. It is a trauma and no one talks about it, ie not the doctors. The razor blade pain was explained to be a fissure. I stuck to a low residual diet, added both a bidet seat and now post reversal a squatty potty stool. The PA said elevating your knees helps with a more complete evacuation and so far I think it is working. If you add fiber, do it slowly.
S
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

zephyr
Posts: 222
Joined: Thu Aug 18, 2016 7:31 am

Re: Clustering advice

Postby zephyr » Thu May 09, 2019 5:21 pm

Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
April-2019 Xeloda + Avastin

Surroundedbylove
Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: Clustering advice

Postby Surroundedbylove » Tue May 14, 2019 6:50 pm

Check in with your colorectal surgeon to make sure you don’t have a fissure. They are common from radiation and can become chronic and sometimes the bodies’ response to the pain is bowel dysfunction and clustering. I didn’t get clustering from radiation but I have it now from LARS and I’ve had fissures. IF you have a fissure my doc said no enemas until fissure healed (and there is a cream - compounded pharmacy prescription - not nifedipine-lidocaine that will help heal and soothe). If no fissure and you choose enemas, make sure they are tap water enemas so you don’t risk worse colon problems down the road. (I.e., not Fleets, etc.)

Otherwise, a course of bowel dysfunction pelvic floor physical therapy could really help. There is a type of biofeedback, certain yoga style breathing combined with abdominal massage, and more that I learned during my pelvic floor PT.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019


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