Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Tue Sep 24, 2019 8:37 am

I had a clustering day on Saturday but it turned out to be a cleanout. I took Miralax and that helped. Then nothing until this morning - nice to have two days off. So kind of back to the old routine. Bathroom is better with bulk. I was tempted to buy Bioclense as there was a seller for $32 (normal price is $51) but I wasn't sure of the seller.

I will take Miralax today and maybe for a few days to see if it overall improves things.

Car went to the body shop yesterday. I hope to get it back in two 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

MeAndMine
Posts: 149
Joined: Mon Aug 05, 2019 2:40 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby MeAndMine » Tue Sep 24, 2019 10:23 am

Hope things go more smoothly after the clean out and hope you get your car back good as new!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Tue Sep 24, 2019 11:13 am

I can't read private messages. Something's been wrong with my mailbox. It might be full but I haven't figured out how to delete things.
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: 260
Joined: Thu Jul 05, 2018 6:03 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Gravelyguy » Tue Sep 24, 2019 11:50 am

NHMike wrote:I can't read private messages. Something's been wrong with my mailbox. It might be full but I haven't figured out how to delete things.


Mike that was me. If you go into settings there is a box to check that allows old posts to be deleted and new ones to take their place.

I sent you some info on BioCleanse. If you can't open it let me know.

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

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Sep 27, 2019 7:23 am

This was not so good a week as clustering returned. It was manageable but annoying. Today was a pretty good morning. I went several times early this morning and am cleaned out or near cleaned out. But I was trying to get work done and going to the bathroom got in the way. Sometimes I have a fairly clear idea as to what I need to get done and like to just go ahead and work on it. Many other times, work requires considerable thought and experimentation and thinking and going to the bathroom is more conducive for that kind of work. So it's clear that doing daily Miralax has things moving better than without it. I took some yesterday afternoon which is likely why this morning was better than most this week.

I get my car back early next week. So it took two weeks to repair and the cost is $3,000. I'm actually impressed with how quickly they fixed it and the lower cost of the parts. My last at-fault accident was in 1982 and my only traffic ticket was back in 1980. Someone has to be incredibly careless to get into an accident with me. In this case, someone drove into me. I didn't see them or I would have taken evasive action. The driver took off after the accident but I got the plate. The driver admitted fault but gave a lame excuse which the State Trooper doesn't believe.

Drinking more fluids definitely helps keep things moving. The fluids generate gas which helps to break things up, even if the fluids do get diverted to the bladder. So I'm still experimenting.

Once I get to a steady state with the Nopalina, Slippery Elm and Miralax; I can experiment with other things.

I think that diet and exercise matter a lot. I have been mostly doing weights and yoga lately - very little running. I think that running helps a lot with digestion. I'm sure that diet matters a lot but I don't really have a clue as to how to get started with figuring it out. We're in the middle of a big move at the office so I've been moving stuff from my office to home and throwing things out as has everyone else in the building. I also have a trip coming up so busy, busy, busy.
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

User avatar
Atoq
Posts: 350
Joined: Wed Oct 25, 2017 9:31 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Atoq » Fri Sep 27, 2019 10:13 am

I experience also that running and strength with abdominals helps a lot with making things progress through the intestine.

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, stage IV
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2

Gravelyguy
Posts: 260
Joined: Thu Jul 05, 2018 6:03 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Gravelyguy » Fri Sep 27, 2019 10:39 am

Atoq wrote:I experience also that running and strength with abdominals helps a lot with making things progress through the intestine.

Claudia



Claudia, You may be on to something. I have been doing a pretty regular core regime and I would agree that that seems to help. I am up to 125 push ups and 200 of different ab and lower back exercises. It is nice getting my strength back after not feeling up to working out during treatment. I think the endorphins help too!

Dae
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

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Sep 27, 2019 5:41 pm

I've always had abs strength (I used to be able to max the abs machine at the YMCA) and I know that abs strength does help in pushing through the GI system. Abs strength helps out a lot in a bunch of other ways too. I highly recommend core work.

https://www.youtube.com/watch?v=abCh7XyZXOw
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

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sun Sep 29, 2019 9:42 am

I bought a Wild Maine Blueberry pie this morning so I'll get some Wild Blueberries. I don't think that there's any chance in actually getting Wild Maine Blueberries short of driving to Maine.

I fasted two days, had dinner, then had a cleanout seven hours later. I think that it was the Slippery Elm. So I went running and to the gym this morning and it's nice not having to worry. I don't plan to eat until tonight or tomorrow night - probably a light dinner. I think that some schedule of fasting will get me regular - that is go one, two or three times in the morning and that's it for the day. If I eat every day, then the clustering is definitely worse.
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

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Sep 30, 2019 9:07 am

My son sent me an article on Liquid Biopsies for cancer detection. These are blood tests for tumor cells circulating in the bloodstream - at least that's what the article says. They might look for metabolites too. I asked my son about these recently and he said that they've been doing them for a few years I think.

I ran across a paper on platinum-based drugs (Oxaliplatin wasn't specifically mentioned) and one of the potential long-term side-effects is leukemia. There are other drugs without platinum that have had this effect. This, combined with reading papers on how long Oxaliplatin stays in the bloodstream, has me wondering if blood-letting would be a good idea. Our modern version of this is donating blood though I don't know if they would take my blood at this time. I don't recall what the waiting period is.

We get a fair amount of blood taken in our quarterly surveillance tests.

I may ask the oncologist about this at the next appointment.

I'd be curious if donating blood or otherwise replacing it drops oxaliplatin levels over time. And if it would solve the neuropathy issue.

I had a bit of the Wild Maine Blueberry Pie - very nice. The blueberries were on the small side - that's not a bad thing. Not too much sugar which is a bonus too. I doubt that I'll see any more of these at the supermarket as it looks like temperatures are dipping and will stay that way.
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

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Oct 03, 2019 4:24 am

I'm losing my private office and am getting a cubicle on Friday and I just realized how useful the private office is for dealing with LARS. I was going to try to figure out how to make the cubicle more private but there are some limitations as to what I can do to the cubicle. It's something that has kept me up all night so I came into the office to work but I wound up doing some research instead on Small Bowel Obstructions and LARS.

A factoid that I found is that SBOs happen in 7.2% of ileostomy reversals: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5498167/

I was actually looking for a paper describing SBOs as a result of ileostomy but I haven't found one yet.

I plan to ask my manager or the building manager as to how to request an accommodation, either an office with a lockable door or a private area where I can cleanup if I have to. I had taken this for granted in my current office. I have not asked for accommodations in the past but office changes have me at least asking.
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

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Oct 03, 2019 5:07 am

The stats on LARS for those with Radiation and Chemo are around 80%. It's a lot lower for those with surgery only but I don't think that option is offered today. I would guess that recurrence rates are a lot lower with Radiation and Chemo. I think that some portion of that 80% improves a lot though.
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

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby mpbser » Thu Oct 03, 2019 9:11 am

My husband just had his first liquid biopsy (guardant360) on Monday. We get the results in a couple weeks. We are pretty ecstatic about his care these days now that he has a second-opinion oncologist at Weill-Cornell. She is the one who ordered the liquid biopsy.

Good to see you are doing well!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

NHMike
Posts: 2335
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Thu Oct 03, 2019 9:36 am

mpbser wrote:My husband just had his first liquid biopsy (guardant360) on Monday. We get the results in a couple weeks. We are pretty ecstatic about his care these days now that he has a second-opinion oncologist at Weill-Cornell. She is the one who ordered the liquid biopsy.

Good to see you are doing well!


I hope his results are good.

I'm wondering if this test should be standard of care - though I don't know if it tests for my mutation.

If you've sent me PMs, I haven't been able to read them. You guys have both been through the wringer and I do miss your updates.
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

mpbser
Posts: 935
Joined: Wed Apr 19, 2017 11:52 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby mpbser » Thu Oct 03, 2019 9:56 am

What's going on with the PMs? Is it a website glitch?

I haven't sent any as I haven't been on this site for a while. The derision from the peanut gallery had gotten to be just too much during the spring when my husband and I were going through that hellish life-threatening experience. I definitely needed a break.

There has been a lot going on in our personal and work lives. Thankfully, not so much on the health front. No news is good news!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED


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