CLUSTERINGGGGGGGGG!!!!!!!

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Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Mon Jun 17, 2019 4:40 pm

JESUS CHRIST,,,, This Is awfull!!!!! My ass is burned from cleaning it :( :( :(
Bleading burned and sore, hemies :o

Ok,,,, this is the days I eat too late or am stressed otherwise
Life is ok 2 months out as long as it's take my bicarbe,,,
Not sure what u yankies call it ....


So heres my day ( hope it will help many)

1 - Stop eating at 6pm
2 - on empty stomach ( 12/14 hours fast) longer the better
Mix 10g sodium bicarbonate in roughly 20 MLS warm water ( it's discussing so less water for your own sake)
3- drink lots ( black coffee or water ,,, not capuccino ( only my observation!!!!!
STAY HOME FOR 1 HOUR.....

Presto large bowel emptied,,,

If not for this id deffo b asking to replace the illeostomy

It's my savour,,, QOL
please try it and let me know how u go
( I've had my kidney function checked and all good
In fact my CEA IS THE LOWEST since I began
I read study on tolleribility and 10g is safe ADELE X


ADELE X

Mike,,, please try this Because I know ur struggling


PRESTO,,,,
SWF, 47
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

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby jep » Sun Jul 07, 2019 8:57 am

Thank you Eleda..... I am going to share this with my husband, as he has really been struggling with this post radiation....
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Sun Jul 07, 2019 11:50 am

Jep, it's really really helped me
I'd love if it does help him also
Please let me know
Its pretty rank to take so have a flavoured drink at the ready to wash it down.
Good luck
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

Rikimaroo
Posts: 257
Joined: Tue Dec 20, 2016 8:48 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Rikimaroo » Sun Jul 07, 2019 6:14 pm

Eleda, if your eating beans, don't eat it anymore. It causes major gas and clustering. Also are you taking Metamucil at night with a lomotil/atropine? Try that and it might help, also how far out from your reversal are you?
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

sadysue
Posts: 984
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby sadysue » Sun Jul 07, 2019 6:27 pm

Clustering is miserable, painful and time consuming. My radiation onc told me to never wipe my bottom clean. He said always "pat, pat, pat" and get the same results without hurting yourself. He also gave me several peri-anal bottles (I think that is what they are called) to squirt myself clean and then "pat, pat, pat" myself again. Warm water is better than cold water! If you have hemorrhoids, cold water hitting them will be painful. The bottles I use are purchased on Amazon and they have helped me deal with this pain-in-the-ass issue.

https://www.amazon.com/Portable-Handhel ... pons&psc=1

I'm one month short of 9 years since my resection and still regularly have bouts of clustering. I have tried everything under the sun but guess that after nine years, it is what it is! :-)
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

macpudd
Posts: 120
Joined: Tue Jul 21, 2015 7:00 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby macpudd » Sun Jul 07, 2019 7:10 pm

Eleda wrote:Jep, it's really really helped me
I'd love if it does help him also
Please let me know
Its pretty rank to take so have a flavoured drink at the ready to wash it down.
Good luck
Adele x

Great to hear its helping you Adele. On a lighter side have you any help for the Cork footballers agast dublin next week.
Dx 10/13/2014 right hemicolectomy 10/15/2014 pT4b N0 M0
Folfox x12 from Dec 2014 to July 2015
01/16/18 tonic seizure hospital admission
01/17/18 ct and mri 2cm tumor on left side of brain
commenced anti epileptic and steroids and
insulin.
01/25/18 brain craniotomy 80% of tumour removed pathology says gbm4
6 weeks of rad and Temodar chemo and then 6 monthly cycles of Temodar
MRI in Oct no tumor
Mri Jan 2019 tumour growth Feb Pet scan tumour 6cm, no surgery, starting Avastin also Lomustine

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Mon Jul 08, 2019 6:18 am

Rikimaroo wrote:Eleda, if your eating beans, don't eat it anymore. It causes major gas and clustering. Also are you taking Metamucil at night with a lomotil/atropine? Try that and it might help, also how far out from your reversal are you?

Rikimaroo I don't take any medicine at all,,,
I don't eat beans lol, I met with a continance nurse and she gave me a concocation to take 2x day and all it did was cause hurrindous gas and clustering :x
I'm only 3 Months out... I had a coloanal anastomosis so I k ow it takes time but I just couldn't deal with it and this way I can have a normal life again

Adele
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

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Mon Jul 08, 2019 6:20 am

macpudd wrote:
Eleda wrote:Jep, it's really really helped me
I'd love if it does help him also
Please let me know
Its pretty rank to take so have a flavoured drink at the ready to wash it down.
Good luck
Adele x

Great to hear its helping you Adele. On a lighter side have you any help for the Cork footballers agast dublin next week.

Was only thinking if you yesterday mc pudd "I sent u a message"
Come on the BLOOD AND THE BANDAGE
CORCIAGH ABÚ
Lol lol 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

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Mon Jul 08, 2019 6:21 am

jep wrote:Thank you Eleda..... I am going to share this with my husband, as he has really been struggling with this post radiation....

Do not leave the house for at least an hour after
I REPETE
"DO NOT LEAVE THE HOUSE" 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

jep
Posts: 174
Joined: Sun Jun 11, 2017 7:45 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby jep » Mon Jul 08, 2019 12:01 pm

Eleda wrote:
jep wrote:Thank you Eleda..... I am going to share this with my husband, as he has really been struggling with this post radiation....

Do not leave the house for at least an hour after
I REPETE
"DO NOT LEAVE THE HOUSE" LOL

ADELE X


Got it!! Thank you LOL :D
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (surgery aborted)

NHMike
Posts: 2269
Joined: Fri Jul 21, 2017 3:43 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Wed Jul 10, 2019 7:59 am

I'm planning to experiment more with Miralax. I've been doing more experiments but progress is slow. I will add Baking Soda to my list of things to consider.

I threw out a bunch of Imodium after the disaster on my trip to Orlando. I will throw out the rest this week.

I can't live without beans.
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: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Fri Jul 12, 2019 12:09 pm

Mike if I'm stressed it won't work eg , yesterday had to catch a flight to Spain. Had to b at the airport at about 9 am ....
Awake all night worried,
Then got up at 7 am took my bicarbonate ( :twisted: :twisted: :twisted: :twisted: :twisted: still waiting at 8!45 !!!!!)
It always happens when I have something important,,,
Body not cooperating with mind
Please let me know if it helps u.....its my lifeline

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

Eleda
Posts: 325
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Eleda » Fri Jul 12, 2019 12:13 pm

sadysue wrote:Clustering is miserable, painful and time consuming. My radiation onc told me to never wipe my bottom clean. He said always "pat, pat, pat" and get the same results without hurting yourself. He also gave me several peri-anal bottles (I think that is what they are called) to squirt myself clean and then "pat, pat, pat" myself again. Warm water is better than cold water! If you have hemorrhoids, cold water hitting them will be painful. The bottles I use are purchased on Amazon and they have helped me deal with this pain-in-the-ass issue.

https://www.amazon.com/Portable-Handhel ... pons&psc=1

I'm one month short of 9 years since my resection and still regularly have bouts of clustering. I have tried everything under the sun but guess that after nine years, it is what it is! :-)

Sue it's very hard to pat when the shit I'd everywhere lol
I get what ur saying but practally it doesn't work all the time
As for the bottles I'm deffo getting them thanks

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

teachpdx
Posts: 629
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby teachpdx » Fri Jul 12, 2019 9:09 pm

The "pat pat" happens a lot easier if you have a bidet (the kind that attach to your toilet). I swear by my biffy and you have no bottle waste. It's: gently wipe, water, pat/wipe, rinse and repeat if necessary.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Rikimaroo
Posts: 257
Joined: Tue Dec 20, 2016 8:48 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Rikimaroo » Fri Jul 12, 2019 9:16 pm

Yesterday was worse then normal. I clustered and I don't know what caused it maybe it was the Jambalaya I made, My wife was craving it. I use the Zatarain's® Jambalaya Rice Mix - 8oz. Either way I hate Clustering, its burns the butt and It's annoying. Your day is pretty much shot. I miss my Ileostomy bag LOL...But It's so hard to turn back to it because who wants a bag/appliance on your body :(.....But I know I could do everything with it and never worry about the shits. Today however I didn't poop yet. That's because yesterday I took like 4 lomotil at least that's what I think. But I have been farting, and it stinks like hell LOL...usually my farts don't stink.

I don't know Mike but whenever I have beans I fart a lot the next day and cluster. And this has happen several times now :(. Do you notice any issues after eating beans? I love beans when I have Spanish food and my wife is Spanish....

Anyways, let's hope things get better for all of us.
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22


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