Stop the clustering to travel

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

Stop the clustering to travel

Postby midlifemom » Wed Sep 07, 2016 2:45 pm

Hi all.

I guess to call it clustering. For 2-3 hours each evening I'm running in and out ouf the bathroom for a bm. There's gas and intense urgency, but very little stool. But sometimes 1 minute later, literally barely make it out of bathroom, the urgency is back. Sometimes I'm lucky and i get half hour before next episode. So, whether this is clustering or not, i need to find a temporary means to stop it for a wedding this weekend.

I know I've read other post here on same topic. I recall enema or immodium/lomotil being two options. I'd prefer not going the enema route. Can those that have successfully managed this let me know how they did it.

Thanks all.
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?

Joecool1983
Posts: 44
Joined: Sat Jun 11, 2016 12:45 pm
Facebook Username: Joseph Piazzola

Re: Stop the clustering to travel

Postby Joecool1983 » Wed Sep 07, 2016 3:32 pm

I often have problems with stool fragmentation/clustering also. If you want to make it through a day, then some sort of medication to stop you up, such as Imodium should do the trick.
Diagnosed 12/17/15- 32 years old- Tumor 3"x1.5" at the Rectosigmoid Colon
Stage IIIA T3N1M0
Radiation and chemotherapy(Xeloda pill form) January 2016- February 2016
4/11/16- Surgery to remove the tumor/colon resection. Robotic LAR/Dissection of Lymph Node. 1/19 showed any involvement
5/16-10/16- Follow up chemotherapy- FOLFOX, 8 Treatments
1/17- Routine CT scan found 3 Metastases on my Liver
4/17-8/17- 5 Treatments Avastin/Irinotecan

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Stop the clustering to travel

Postby ams5796 » Wed Sep 07, 2016 3:41 pm

I've been going through those same clustering sessions nightly for a really long time now. I know you said that you'd prefer not to do an enema, but that would probably give you total peace of mind for that day. It's really the best option. I'm not sure if you're looking for a break for one day for the wedding or if it's a whole weekend event. The weekend event would be obviously more tricky. I think you can get through a day for the wedding with very little eating and drinking (before the event) and taking doses of Imodium or Lotomil every few hours. So, if the wedding is late in the day I would start the day with a very light breakfast and then I would stop eating for the day and start responsibly dosing the Imodium. At the wedding you'd probably be able to eat and drink carefully. The problem with taking so much Imodium for me is that I would end up clustering even worse for even longer for days after the wedding.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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

Re: Stop the clustering to travel

Postby midlifemom » Wed Sep 07, 2016 5:47 pm

ams5796 wrote:I've been going through those same clustering sessions nightly for a really long time now. I know you said that you'd prefer not to do an enema, but that would probably give you total peace of mind for that day. It's really the best option. I'm not sure if you're looking for a break for one day for the wedding or if it's a whole weekend event. The weekend event would be obviously more tricky. I think you can get through a day for the wedding with very little eating and drinking (before the event) and taking doses of Imodium or Lotomil every few hours. So, if the wedding is late in the day I would start the day with a very light breakfast and then I would stop eating for the day and start responsibly dosing the Imodium. At the wedding you'd probably be able to eat and drink carefully. The problem with taking so much Imodium for me is that I would end up clustering even worse for even longer for days after the wedding.


Ann



I need to control it for just 2.5 hours during travel time to wedding (unfortunately, travel time coincides with cluster time. Will adjust travel time as much as possible.).
Then for 3-4 hours during reception.

Its just I've never taken immodium proactively, only after the diarrhea started, but thought that might be the answer. I could also pick up a fleet to bring along just in case.
Trying the proactive approach tonight to see how well it works without stopping me up completely.
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?

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Stop the clustering to travel

Postby ams5796 » Wed Sep 07, 2016 6:53 pm

Imodium can certainly work proactively. Unfortunately, one of the keys to having this situation work is limiting your food intake (doesn't seem fair, does it? :( ). Sometimes you just have to take the risk and throw caution to the wind. Otherwise, you'd overthink everything and miss out on all the fun. :? (now I'm talking to myself)


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

Rubyslipperz1
Posts: 45
Joined: Sun Jan 19, 2014 4:46 am
Location: Chicago Area

Re: Stop the clustering to travel

Postby Rubyslipperz1 » Thu Sep 08, 2016 3:33 am

I sometimes use immodium for an important event but I also will often wear a stupid Depends to give me extra peace of mind. My issue is usually the opposite, diarrhea, but when I have the clustering issue I barely have any warning so I started using the immodium + sexy diaper and it has worked for me to enjoy special events, flying, etc.
good luck!
38 F mom DX 12/13
Stage IV CC w/ mets to liver,lung,& lymph nodes
10 rounds chemo
7/11-failed liver resect but removed tumors in colon and lymph nodes
10-11/14-SIRT
11/14-1/15-travel-Palooza
3/15- chemo folfiri and Avastin (every 2 weeks 4 life)
7/15-emergency back surgery
2016-Folfiri/Avastin e/o week took 2 month break and cancer thanked me by spreading to lungs, pancreatic lymph nodes and increased +30 tumors to liver

Lordswood77
Posts: 39
Joined: Tue Mar 08, 2016 1:30 pm

Re: Stop the clustering to travel

Postby Lordswood77 » Fri Sep 09, 2016 1:21 am

I'm due to start irrigation shortly once my chemo finishes in early October. I've been reading some good reports and it very easy to do using the mini irrigation systems

Qufora is the one I will be using
4/2013 - Diagnosed with Colon cancer aged 35 (no family history) T1N0M0
8/2013 - LAR with temp Ileostomy
12/2013 - Ileostomy Reversal
09/2014 - Clear CT Scan
01/2016 - PET Scan high probability of reoccurance
01/2016 - VATS right lung
03/2016 - VATS left lug
05/2016 - Start CAPOX regime for 6 months
07/2016 - Clean CT scan next scan October
08/2016 - Clear MRI scan following migraines
10/2016 - Finished Chemo & Clear scan, next scan Jan

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

Re: Stop the clustering to travel. (Update)

Postby midlifemom » Sun Sep 11, 2016 8:59 pm

Just an update.
Taking immodium proactively, before any rumblings began, worked wonders for the ride to the wedding.
The day of the wedding was more difficult as there was so much food! I took 1/2 an immodium throughout the day every time i went the bathroom for a bm. This kept the urgency under control though stools were still rather loose. Day after wedding, today, i began backing off on the immodium and my system is clearing itself out.

Bottom line - this worked for me, let me attend a wedding i really wanted to make. Perhaps it will work with someone else. 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?

ams5796
Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: Stop the clustering to travel

Postby ams5796 » Sun Sep 11, 2016 9:21 pm

Thanks for updating us, midlifemom. I was wondering how you did. I'm really happy for you that your plan worked. It's always the food that gets in the way! But, you made it work. It's liberating to know that we can participate in important activities. It seems to be all trial and error.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Stop the clustering to travel

Postby BeansMama » Mon Sep 12, 2016 6:16 am

So glad it worked for you!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Stop the clustering to travel

Postby Pita » Mon Sep 12, 2016 6:32 pm

That's wonderful MLM that you were able to go to the wedding without problems, happy for you!!! ox
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Stop the clustering to travel

Postby DarknessEmbraced » Tue Sep 13, 2016 4:39 pm

I'm so glad it worked for you midlifemom!*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! :)


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