CLUSTERINGGGGGGGGG!!!!!!!

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NHMike
Posts: 2506
Joined: Fri Jul 21, 2017 3:43 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Sun Jul 21, 2019 7:42 am

Rikimaroo wrote:
NHMike wrote:
Rikimaroo wrote:I been slacking on Metamucil every night before I go to bed. Has anyone taking it and things are better? Sometimes I think it makes me cluster, but I have not consistently taking it every night. I am going to try to take it every night to see if it keeps everything together. Today is another day of clustering. Been to the bathroom like 5-6 times already. But with time lapse between each cluster movement which is not bad, but still I don't want to go this much. I am still nervous about the enema, because of some things I read online, but if Susie is doing it with no problem, then I really think I should try it, however she did mention there are days she still has problems. I just don't know I think people without a rectum should just keep the bag.

Life just sucks without a rectum.


I find that Nopalina is far more effective than Metamucil. I could see no visible difference with Metamucil or the CVS equivalent. Nopalina has different types of fiber and I suspect that some kinds of fiber work for some people and not for others.

BTW, I consider 5-6 times normal. Clustering for me is more like 10-30 times a day and more than two hours of time.


Mike I found that I got diarrhea from the nopalina when I tried it. My wife had a bag of it here.


I bought the bag and the capsules. The loose form in the bag didn't work for me. The capsules work a lot better for me.
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

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby TinaFish » Thu Jul 25, 2019 11:23 pm

What does clustering mean?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

NHMike
Posts: 2506
Joined: Fri Jul 21, 2017 3:43 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Fri Jul 26, 2019 6:38 am

Clustering is where you go to the bathroom a lot. The rectum collects and stores waste for when you have the opportunity to go to the bathroom and it can release large amounts quickly. Waste normally comes into the rectum over a long period of time. If you don't have a rectum, then it wants to exit as it comes through. So, if waste comes through every ten minutes for five hours, then you can be going to the bathroom every ten minutes for five hours.
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

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susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby susie0915 » Fri Jul 26, 2019 11:01 am

NHMike wrote:Clustering is where you go to the bathroom a lot. The rectum collects and stores waste for when you have the opportunity to go to the bathroom and it can release large amounts quickly. Waste normally comes into the rectum over a long period of time. If you don't have a rectum, then it wants to exit as it comes through. So, if waste comes through every ten minutes for five hours, then you can be going to the bathroom every ten minutes for five hours.


Perfect explanation Mike.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby TinaFish » Fri Jul 26, 2019 6:28 pm

NHMike wrote:Clustering is where you go to the bathroom a lot. The rectum collects and stores waste for when you have the opportunity to go to the bathroom and it can release large amounts quickly. Waste normally comes into the rectum over a long period of time. If you don't have a rectum, then it wants to exit as it comes through. So, if waste comes through every ten minutes for five hours, then you can be going to the bathroom every ten minutes for five hours.


Wow, because I DO have a rectum, and this has been happening to me ever since my first round of chemo. It's like if there's the tiniest bit of poop in my rectum, my body wants to get it out. I feel the urge to poop, sit on the toilet, and a tiny bit of poop comes out. This happens 10-15 times a day. I *think* it's worsened by diarrhea, so I try to take Imodium to combat it, but I'm worried about constipating myself with too much Imodium.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

NHMike
Posts: 2506
Joined: Fri Jul 21, 2017 3:43 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Fri Jul 26, 2019 7:11 pm

TinaFish wrote:
NHMike wrote:Clustering is where you go to the bathroom a lot. The rectum collects and stores waste for when you have the opportunity to go to the bathroom and it can release large amounts quickly. Waste normally comes into the rectum over a long period of time. If you don't have a rectum, then it wants to exit as it comes through. So, if waste comes through every ten minutes for five hours, then you can be going to the bathroom every ten minutes for five hours.


Wow, because I DO have a rectum, and this has been happening to me ever since my first round of chemo. It's like if there's the tiniest bit of poop in my rectum, my body wants to get it out. I feel the urge to poop, sit on the toilet, and a tiny bit of poop comes out. This happens 10-15 times a day. I *think* it's worsened by diarrhea, so I try to take Imodium to combat it, but I'm worried about constipating myself with too much Imodium.


I had this too on and off but the urge was from the tumor in the rectum. There might have been waste or not but the urge was there. The radiation really reduced that urge is it really burned the tumor away.

BTW, pushing too much can put strain on your floor and cause some bleeding as you're pushing but there's nothing really to push.
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

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby TinaFish » Sat Jul 27, 2019 1:08 am

NHMike wrote:
TinaFish wrote:
NHMike wrote:Clustering is where you go to the bathroom a lot. The rectum collects and stores waste for when you have the opportunity to go to the bathroom and it can release large amounts quickly. Waste normally comes into the rectum over a long period of time. If you don't have a rectum, then it wants to exit as it comes through. So, if waste comes through every ten minutes for five hours, then you can be going to the bathroom every ten minutes for five hours.


Wow, because I DO have a rectum, and this has been happening to me ever since my first round of chemo. It's like if there's the tiniest bit of poop in my rectum, my body wants to get it out. I feel the urge to poop, sit on the toilet, and a tiny bit of poop comes out. This happens 10-15 times a day. I *think* it's worsened by diarrhea, so I try to take Imodium to combat it, but I'm worried about constipating myself with too much Imodium.


I had this too on and off but the urge was from the tumor in the rectum. There might have been waste or not but the urge was there. The radiation really reduced that urge is it really burned the tumor away.

BTW, pushing too much can put strain on your floor and cause some bleeding as you're pushing but there's nothing really to push.


That's what my oncologist said - that the urge is from the rectal tumor. However, the weird thing is that I had no problem with this at all until two days after my first chemo treatment. Why was I able to go six months with blood in my poop every 3-4 weeks, but with no other symptoms and no pain or discomfort? I finally go to the hospital, get diagnosed, and twelve days later, my body won't stop trying to push poop out? Do you think it's related to the chemo diarrhea too? Because that was the only difference compared to pre-chemo.

BTW, I discovered that this urge to poop is called "tenesmus." My oncologist prescribed me a drug called Bentyl, and it's been a lifesaver. It basically relaxes all of the rectal/colon muscles so that they move more slowly.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby TinaFish » Sat Jul 27, 2019 1:15 am

Wait, I'm so sorry for being so naive, but I thought that if someone doesn't have a rectum, then they have to have a colostomy. If you don't have a rectum, then you have no ability to control your poop, right? So would you have to wear adult diapers all the time? I hate the thought of a colostomy, but it seems that it would be the lesser of the two evils.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Gravelyguy
Posts: 330
Joined: Thu Jul 05, 2018 6:03 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Gravelyguy » Sat Jul 27, 2019 7:11 am

TinaFish wrote:Wait, I'm so sorry for being so naive, but I thought that if someone doesn't have a rectum, then they have to have a colostomy. If you don't have a rectum, then you have no ability to control your poop, right? So would you have to wear adult diapers all the time? I hate the thought of a colostomy, but it seems that it would be the lesser of the two evils.



Tinafish,

Great question. Many people that have a very low tumor do end up with a colostomy. It isn’t so much the rectum as the sphincter muscles. If they can spare cutting into the sphincter muscles, there is the potential to avoid a colostomy.

This is also when the potential for more post surgery continence issues comes in. The rest of your colon is asked to do the job of the rectum which it isn’t real good at.

I don’t think anyone knows for sure why some have more issues and some don’t. The little I have read suggest that there can be an overgrowth of bad flora in the small intestine during the time of your ileostomy, nerve damage during the surgery, and something else that I can’t remember right now.

It is pretty frustrating as you don’t really know until you go through reversal what the outcome will be. We are all trying to get to a routine that works for us but what may work for one May not work for the next.

Hope this helps,

Dave
6/17 dx mRC 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
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

NHMike
Posts: 2506
Joined: Fri Jul 21, 2017 3:43 am

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby NHMike » Sat Jul 27, 2019 9:32 am

TinaFish wrote:Wait, I'm so sorry for being so naive, but I thought that if someone doesn't have a rectum, then they have to have a colostomy. If you don't have a rectum, then you have no ability to control your poop, right? So would you have to wear adult diapers all the time? I hate the thought of a colostomy, but it seems that it would be the lesser of the two evils.


I think that the doctors believe that you can control it with drugs (fiber, Imodium) and the muscles (levators or something) that remain. I don't think that the physics of it works because the muscles control from the sides and you have a strong flow pushing in on basically doors that close. I'm using adult diapers most of the time or pads in clothes. There are other approaches such as daily enemas. Fasting works too but it has its limits.

Yes, a colostomy would be a solution but many try to leave it as a last possibility.
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: 330
Joined: Thu Jul 05, 2018 6:03 pm

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby Gravelyguy » Sat Jul 27, 2019 10:36 am

Gravelyguy wrote:Hi Guys,

I have to share my success story and hope it can help someone else!

So I was doing pretty well. I was eating oatmeal for breakfast and taking 3x the maintenance dosage of the probiotics I took during chemo. With this regime I would usually go a couple times in the morning and then have some clustering in the evening. I was able to work and live pretty normally but had some reservations about being out in the evening. I did it but often spent some time going back and forth to the bathroom.

This summer I have been helping out at a summer camp with some long 12+ hour days with only port a potties.
So I started to do some experimenting. I stopped eating oatmeal in the morning. I think the fiber contributed to the clustering. I started really upping my water because am outside all day long. But the big thing, I think is I restarted taking a product called BioCleanse (a magnesium based supplement) at around 10 pm with my probiotics. I had taken this before and during chemo but stopped after reversal because I thought I wouldn’t have any control of my BM’s on it.

Guys for 3 weeks now. I get up go to the bathroom within 20 minutes of moving about and that is it, for the day!! No clustering, very little gas, it is awesome. I feel like the old me again!

I don’t think this would be the best if you are dealing with diarrhea but for those of us with lots of clustering it certainly has helped me!!!!

Back to the campers,

Dave


Just a quick update. I am done at camp and it was a great time doing what I love to do. This past week was another good week but I did have a couple of days where there was a little more clustering 3-5 times in the evening in a couple of hours. The days before this happened I didn’t get as much water in me as the other days otherwise everything was the same.

I don’t think those of us who cluster can get enough water. I am trying to drink 80-100 ounces a day.

Dave
6/17 dx mRC 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
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

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

Re: CLUSTERINGGGGGGGGG!!!!!!!

Postby ams5796 » Sat Jul 27, 2019 7:12 pm

That's really interesting and helpful, Dave. I especially need to up my water intake.

Thanks,
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


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