Rectal cancer (Stage 3A) diagnosed late June 2017

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JJH
Posts: 290
Joined: Mon Apr 24, 2017 7:26 am

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

Postby JJH » Sun May 17, 2020 11:15 am

NHMike wrote:... I still have the todo list item to write a book on this stuff but I'm buried with other stuff to do.

So, how is your book coming along? Do you have the main outline sketched out by now? Any chapters already written? (Just curious...)

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun May 17, 2020 11:28 am

I just have some stuff in a LaTeX file. I started a new job in February and it's 9:30 AM to 12:30 AM. It's on my long todo list.
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: 2498
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 27, 2020 3:39 pm

A coworker died yesterday of lung cancer. He was diagnosed a few months before I was and we talked about the kind of cancer stuff that people with cancer talk about (stuff that's discussed here). His was inoperable but he was kept alive with targeted therapies. He wasn't able to go to the hospital for treatment in April because of COVID and it looks like his cancer progressed to where it took his life. It's something that I'm sure that many of us worried about or still worry about.

We've been sending our thoughts around to each other via email. His family plans a ceremony in August when things will be more open for people to get together.
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: 387
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Thu May 28, 2020 4:28 am

I am really sorry for your loss. These things make also feel us more vulnerable and lonely.

A big hug

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , 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
18.03.20 CAT, eco, scope, NED

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Jun 01, 2020 7:47 am

Atoq wrote:I am really sorry for your loss. These things make also feel us more vulnerable and lonely.

A big hug

Claudia


Thanks. The pandemic is tough on people all over with a lot of frustration and difficult getting access to things that we normally take for granted. There are deaths due to people not being able to get services (psychological in particular). I have been receiving emails from my hospital (same hospital as my coworker) and they are in some stage of opening up. The numbers in Boston are trending down - they're just not to the point I consider comfortable. They're seeing about 40-70 deaths per day in Massachusetts. I'll see what hospital appointments are like in August.
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

Adele
Posts: 1
Joined: Fri Jun 05, 2020 3:18 pm
Facebook Username: Adele morgan

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

Postby Adele » Fri Jun 05, 2020 3:23 pm

Sorry to hyjack ur post Mike but I've have to set up a new account aver nemours attempts to re log in failed, so new e mail and loc I'm, so my new user name from ELEDA
is Adele so sorry if I don't reply to any messages
Thanks adele

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 10, 2020 6:32 am

Adele wrote:Sorry to hyjack ur post Mike but I've have to set up a new account aver nemours attempts to re log in failed, so new e mail and loc I'm, so my new user name from ELEDA
is Adele so sorry if I don't reply to any messages
Thanks adele


Hello Adele,

I see that you only have one post so maybe you're still having problems. It took a while for me to be able to post reliably as well.
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: 2498
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 10, 2020 6:39 am

I haven't been around much as I was working a lot and dealing with stressful stuff. I haven't been working out that much either and have put on weight as a result. My home gym is better and I am using it but I'm not working out to the degree that I used to.

Neuropathy has increased somewhat and I suspect that this is due to my cardiovascular system not being as strong as it used to be. I have some cognitive decline as well - being more forgetful and not being able to pull up a word that I know that seems just a bit away. I do chess puzzles daily for a mental challenge and keep note of my typical score and it is down a little.

So maybe it's time to retire or go on disability. The GI stuff still causes problems for me though things are generally better when I'm taking my supplements regularly. I have found it harder to fast a lot but the fasting probably helps considerably.

I have a six-month visit for bloodwork and it worries me a little as my GI system has been somewhat more unsettled lately. That could be due to less abdominal strength or it could be a problem. I think that it's normal anxiety. I have had respiratory issues the past couple of months and I sometimes worry that it's mets to the lungs or COVID. It is likely due to pollen and allergies and not enough sleep.

Our COVID infection numbers are pretty low and they are falling so I shouldn't worry but I'll be happier when our infection counts are under 100 for the state.

I've noticed that people are reporting scan and bloodwork results and I guess that's due to hospitals and labs opening back up to do routine testing. That's a good thing on medical services opening back up.
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: 327
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

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

Postby Eleda » Fri Jul 10, 2020 8:11 am

NHMike wrote:
Adele wrote:Sorry to hyjack ur post Mike but I've have to set up a new account aver nemours attempts to re log in failed, so new e mail and loc I'm, so my new user name from ELEDA
is Adele so sorry if I don't reply to any messages
Thanks adele


Hello Adele,

I see that you only have one post so maybe you're still having problems. It took a while for me to be able to post reliably as well.


Hi Mike, I think I'm sorted, tbh, nothing to report, I'm just reading posts ATM,

I'm after my 1 year colonoscopy in April under Anastasia because of the fact I had a fisture, he was happy with everything but never got to see him for a follow up appointment or scan because of covid, but had bloods done throughout, ( all good)

I'm still taking bicarbonate every day, because without it I don't think my QOL would b any good,
So I'm pretty much "back to normal"

Maybe it's time to quit because life is to be enjoyed, and if u can afford it
DO IT....
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

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 10, 2020 9:24 am

Eleda wrote:Hi Mike, I think I'm sorted, tbh, nothing to report, I'm just reading posts ATM,

I'm after my 1 year colonoscopy in April under Anastasia because of the fact I had a fisture, he was happy with everything but never got to see him for a follow up appointment or scan because of covid, but had bloods done throughout, ( all good)

I'm still taking bicarbonate every day, because without it I don't think my QOL would b any good,
So I'm pretty much "back to normal"

Maybe it's time to quit because life is to be enjoyed, and if u can afford it
DO IT....
ADELE


It sounds like you're doing great.

Retirement is scary stuff if you've worked all your life.

We can objectively swing it but it would just feel better to do it at the usual time (65).
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: 2498
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Jul 10, 2020 1:33 pm

Appointment Notes from Dana-Farber/Brigham and Women's:

Please do not arrive more than 20 minutes before your first scheduled appointment. This simple step can reduce the number of people in the building, which helps us ensure fewer people in waiting areas and safe physical distancing throughout the facility.

Face masks are required for everyone. When you arrive, we will give you a hospital-grade mask to wear throughout your visit. Please make sure your mask covers your mouth and nose, and avoid touching your mask while you wear it.

No visitors are allowed, to reduce the number of people on-site. We have a free cellphone waiting lot where the person who drives you to your appointment can park or wait. We know that loved ones are a vital part of the healing process, and we encourage you to use your smartphone or other mobile device to stay in touch with your support person during your visit.


I normally arrive between 5:15 - 5:30 AM for 6:45 AM labs and an 8:00 AM oncology visit. The reason is to avoid traffic and because it's 50 miles and there can be traffic delays. Fortunately, I think that traffic should be so light as to not make that an issue. I usually park in a parking garage as well at Brigham and Women's but I might park at Dana-Farber this time if I can figure out where it is. I think that they have some oddball parking requirements too.

I would normally wear my balaclava but it sounds like they're going to hand out N95s. You don't use your own when you're there. That's certainly different.
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: 323
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Sat Jul 11, 2020 8:45 am

Mike glad to see your posts!

Sorry you haven’t been able to work out as much as you had been. I have been staying active but a long stretch of 90’s and humid here in MN has meant more swimming in the lake than running and lifting.

It is interesting that you mention a possible relationship between working out and cognitive ability. I may have to keep an eye on that. Earlier in the summer when I was doing more strenuous activity, it seemed that I was sharper too.

I am looking at being able to retire in 18 months. I am not sure I am ready as I like to stay busy.

My GI stuff, even at this far out, seems to be continuing a slow positive trajectory. I am less gassy and good days only go once or twice. Bad days are 4-5 times. So doable for sure. I am down to taking a prebiotic in the evening, probiotics in the morning and evening, and a multi vitamin and low dose aspirin in the mornings. At least for now it seems to make things pretty predictable.


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!

User avatar
Atoq
Posts: 387
Joined: Wed Oct 25, 2017 9:31 am

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

Postby Atoq » Sun Jul 12, 2020 3:42 am

Hi Mike!
I have also been without running for two weeks because of an Achilles inflamation. Hope to start again this week.

Is it a possibility to work part time and have a less stressful routine?

I was also worried about the cognitive consequences of early menopause and I have increased my piano practising (with great satisfaction). Now I went a step further and bought a violin. I thought if I am so lucky to be alive in ten years I will be happy I startet it :D

All the best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (suspect met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy , 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
18.03.20 CAT, eco, scope, NED

benben
Posts: 323
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

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

Postby benben » Mon Jul 13, 2020 11:09 pm

Gravelyguy wrote:Mike glad to see your posts!

Sorry you haven’t been able to work out as much as you had been. I have been staying active but a long stretch of 90’s and humid here in MN has meant more swimming in the lake than running and lifting.

It is interesting that you mention a possible relationship between working out and cognitive ability. I may have to keep an eye on that. Earlier in the summer when I was doing more strenuous activity, it seemed that I was sharper too.

I am looking at being able to retire in 18 months. I am not sure I am ready as I like to stay busy.

My GI stuff, even at this far out, seems to be continuing a slow positive trajectory. I am less gassy and good days only go once or twice. Bad days are 4-5 times. So doable for sure. I am down to taking a prebiotic in the evening, probiotics in the morning and evening, and a multi vitamin and low dose aspirin in the mornings. At least for now it seems to make things pretty predictable.


Dave



I gotta say, when I start to slack off on my cardio routines, my energy levels decline quite a bit. I don't feel as well physically, don't get as good as sleep, and as a result I'd say have some (while by no means imperative) cognitive decline.

I really find 2 days minimum per week with 1.5 hours of cardio per session. My preferred method is cycling. Fair best with 2-3 of those per week along with 2-3 45 minute upper body weight routines. Maybe a couple 3 mile walks and a hike to boot.

Keep moving!
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/20 CT - NED (3 years!)

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 15, 2020 8:01 pm

Gravelyguy wrote:Mike glad to see your posts!

Sorry you haven’t been able to work out as much as you had been. I have been staying active but a long stretch of 90’s and humid here in MN has meant more swimming in the lake than running and lifting.

It is interesting that you mention a possible relationship between working out and cognitive ability. I may have to keep an eye on that. Earlier in the summer when I was doing more strenuous activity, it seemed that I was sharper too.

I am looking at being able to retire in 18 months. I am not sure I am ready as I like to stay busy.

My GI stuff, even at this far out, seems to be continuing a slow positive trajectory. I am less gassy and good days only go once or twice. Bad days are 4-5 times. So doable for sure. I am down to taking a prebiotic in the evening, probiotics in the morning and evening, and a multi vitamin and low dose aspirin in the mornings. At least for now it seems to make things pretty predictable.
Dave


I find that things are more predictable as things go out in time - I think that's learning what works and what doesn't.

Neuropathy/Raynaud's/Tingling due to poor circulation. My mother has this from narrowing arteries and a heart attack about five years ago. I have a niece with Raynauds and a couple of co-workers and former co-workers with it. I suspect that a stronger circulatory system helps with circulatory problems and maybe getting oxygen to the brain. So I need to work on that. I spent a good chunk of the day working on taxes as they are due today.

I could use some time off to get back in much better shape. Maybe we all could.

18 months is a short period of time at our age.
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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