Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 15, 2020 9:25 pm

Atoq wrote: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


Well, that's an overuse injury and it means that you're working out if you develop one of those. I've never had an Achilles injury but I've had two of the other big five (Chondromalacia, Plantars Fasciitis). I could tell you the usual recommendations but my guess is that runners know what they are.

Playing music is great for the brain as you have to multiask, sometimes in multiple rhythms (I can't figure out how people do one rhythm with one hand and another with the other).
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: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sat Jul 18, 2020 8:52 pm

I found a bunch of other standing balance Yoga Poses at https://www.youtube.com/watch?v=PyHTlmO5dp4 and I've given them a try. I found them doable with a bit of effort. This video is done by Silver Sneakers, and I think that they are geared towards physical health via exercise for seniors.
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
CRguy
Posts: 10231
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Sat Jul 18, 2020 10:48 pm

NHMike wrote:Playing music is great for the brain as you have to multiask, sometimes in multiple rhythms (I can't figure out how people do one rhythm with one hand and another with the other).

Learning the drums way back, was what worked for me :shock:
Being a marginal guitarist and not too bad piano/keyboardist set the stage
BUTT ... drums kicked it for me

BESIDES if you play like Keith Moon, Ginger Baker or Neil Peart ...
you get to work out some serious pent up aggressive energy as well :shock: :mrgreen:

as for the balance yoga ===>>>>> YES !!!
simple balance / strength exercises are great for anyone BUTT as we age, or have/have had issues which affect our bodies,
doing anything to retain / retrain / attain ... a new level of fitness IS essential IMO.

My karate club was very proactive in implementing general "wellness" training into anything we did.
Example : all of the exercises in the video NHMike linked :
with a stabilizing handrail close by .. try them all with both eyes CLOSED and balance on one foot then change to another :shock:
Most of us will find a huge dissonance with what we normally experience because we are so heavily reliant on visual "clues"

just sayin' we all have lots of things we can and should do to keep us REAL
AND....
keep ON ... keepin' ON !!!

Cheers all
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

lindylou
Posts: 1
Joined: Sun Jul 19, 2020 7:18 am

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

Postby lindylou » Sun Jul 19, 2020 7:51 am

NHMike wrote:My experiments without dairy for the past week or more show fewer problems without dairy. Unfortunately I like cream in my coffee but it looks like I will have to do without it. I've played around with plant-based substitutes in the past and I don't find them helpful.

Have you tried the newest Ripple products? A bit more expensive but wonderful as they are now making a Barrista creamer, half & half and also ice cream. High protein (pea) and no saturated fat. We went through stage 3 rectal cancer 20 years ago and finally became whole-food-plant based (WFPB) 4 years ago (Dr. Michael Greger, "How Not to Die". It's the best thing we've ever done because of its focus on high nutrition which strengthens the immune system and consuming anti-inflammatory foods. Changing lifestyle gives a mental confidence that
is priceless.

NHMike
Posts: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Jul 20, 2020 5:37 pm

lindylou wrote:
NHMike wrote:My experiments without dairy for the past week or more show fewer problems without dairy. Unfortunately I like cream in my coffee but it looks like I will have to do without it. I've played around with plant-based substitutes in the past and I don't find them helpful.

Have you tried the newest Ripple products? A bit more expensive but wonderful as they are now making a Barrista creamer, half & half and also ice cream. High protein (pea) and no saturated fat. We went through stage 3 rectal cancer 20 years ago and finally became whole-food-plant based (WFPB) 4 years ago (Dr. Michael Greger, "How Not to Die". It's the best thing we've ever done because of its focus on high nutrition which strengthens the immune system and consuming anti-inflammatory foods. Changing lifestyle gives a mental confidence that
is priceless.


I haven't tried dairy alternatives. I just went back to drinking coffee black. I did this for many years starting from 2008 and then added it back many years later. But cleaning and care are easier without dairy.
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: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Jul 20, 2020 5:42 pm

CRguy wrote:
NHMike wrote:Playing music is great for the brain as you have to multiask, sometimes in multiple rhythms (I can't figure out how people do one rhythm with one hand and another with the other).

Learning the drums way back, was what worked for me :shock:
Being a marginal guitarist and not too bad piano/keyboardist set the stage
BUTT ... drums kicked it for me

BESIDES if you play like Keith Moon, Ginger Baker or Neil Peart ...
you get to work out some serious pent up aggressive energy as well :shock: :mrgreen:

as for the balance yoga ===>>>>> YES !!!
simple balance / strength exercises are great for anyone BUTT as we age, or have/have had issues which affect our bodies,
doing anything to retain / retrain / attain ... a new level of fitness IS essential IMO.

My karate club was very proactive in implementing general "wellness" training into anything we did.
Example : all of the exercises in the video NHMike linked :
with a stabilizing handrail close by .. try them all with both eyes CLOSED and balance on one foot then change to another :shock:
Most of us will find a huge dissonance with what we normally experience because we are so heavily reliant on visual "clues"

just sayin' we all have lots of things we can and should do to keep us REAL
AND....
keep ON ... keepin' ON !!!

Cheers all
CRguy


You can't do everything and there's always pressure for your time.

I went to the dentist today. It made me feel normal.

I found out that my standard barbell bar should support between 150 to 250 pounds of weights and that I should get an Olympic Bar if I want to do more than 150 pounds. That is if it is possible to buy an Olympic Bar and Olympic weight plates. So do what you can and try to do a little more.

I had a weekend warrior weekend. Tennis, Yoga, Running, Spin, Stretching. Slept nine hours last night. Most I've slept in months. I've been getting 5-6 the past two months. My Garmin stress score was 22 this morning which is about as good as it gets (it's on a 100 scale).
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: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jul 22, 2020 3:52 pm

I did the electronic paperwork for a lump sum rollover into my 401k. I was going to try to do an IRA but there was additional paperwork to do. I need to get my wife to sign a form witnessed by a notary - which might be challenging. I'm hoping that my credit union offers this service and that we can get an appointment to get it witnessed.
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
CRguy
Posts: 10231
Joined: Sun Feb 10, 2008 6:00 pm

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

Postby CRguy » Wed Jul 22, 2020 6:54 pm

NHMike wrote:You can't do everything and there's always pressure for your time.

So do what you can and try to do a little more.

Heard a good quote the other day about " being the best version of yourself "
" The best version of yourself is the one which is always looking for the best version of yourself ! "

I kinda liked that ... a LOT !
and think it does fit with what we are talking about

Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

NHMike
Posts: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Aug 03, 2020 3:25 pm

I was RIF'd this morning. Basically my job went away. I could look around for another job in the company (there are lots of them) but I decided to leave as I really need a break of three months to rebuild my body. My last day is in two weeks and I'm continuing to work until then. It's probably the push I need to take a break. I don't know if I'll just retire or look for work afterwards. But it's actually a relief.
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: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Mon Aug 03, 2020 7:28 pm

I have my first appointment at Dana Farber since before the pandemic started tomorrow morning. They called today with a list of COVID questions. I'm planning on driving down around 5:15 AM to get there at 6:15 AM for bloodwork and a 7:30 AM appointment. I'll wear my own mask into the building and then get one of theirs at some point. This will be my first trip into Boston proper since February so I will be careful touching anything as MA is still seeing about 300 new cases per day. So I'll bring several extra gloves, hand sanitizer, etc.

I'd guess that people living in Boston are used to the routine of living there and may think that this is excessive but I'm trying to take as many precautions as I can.
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
beach sunrise
Posts: 225
Joined: Thu Mar 05, 2020 7:14 pm

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

Postby beach sunrise » Mon Aug 03, 2020 9:13 pm

Hey Mike, I'd be nervous too going into Boston. You could also wear some cool safety glasses and a hat.
As my grandpa used to say about unsure situations "You couldn't have gotten a 6 penny nail between my butt cheeks." Stay Safe!!!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1-21-20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
mFOLFOX6 CEA 7
8 rds 6-10 CEA 11.4 4 more no oxa
6-17 CEA 11.1
7-2 CEA 11.1
7-16 CEA 10.3
7-28 CEA 8.8
8-11 CEA 7.8
9-1 CEA 8.8
9-8 CEA 9
9-16 CEA 9
9-22 CEA 8.6
9-28 CEA 8.5
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

NHMike
Posts: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Aug 04, 2020 4:07 am

beach sunrise wrote:Hey Mike, I'd be nervous too going into Boston. You could also wear some cool safety glasses and a hat.
As my grandpa used to say about unsure situations "You couldn't have gotten a 6 penny nail between my butt cheeks." Stay Safe!!!


I've been wearing glasses for three decades and they do provide some protection.

I've got about a dozen gloves with me.

My concerns are surfaces that I have to touch - touch screens, etc. I would guess that I'm fine once inside the building. Leaving in five minutes.
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: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Aug 04, 2020 6:23 am

Far fewer people here so they may be spacing out appointments or maybe fewer patients coming in.

More security in tags with who signed you in and date. Also tracking device.

I went to the cafeteria to wait for the elevators to work and there was a guy sneezing and blowing his nose there so I went elsewhere. They seem to be taking a lot of precautions.
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: 2478
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Tue Aug 04, 2020 8:56 am

Everything's good. I asked why there were so few people around and she said that a lot of people are doing telehealth.
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

Basil
Posts: 270
Joined: Thu Mar 16, 2017 12:33 pm

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

Postby Basil » Wed Aug 05, 2020 8:11 pm

NHMike wrote:I have my first appointment at Dana Farber since before the pandemic started tomorrow morning. They called today with a list of COVID questions. I'm planning on driving down around 5:15 AM to get there at 6:15 AM for bloodwork and a 7:30 AM appointment. I'll wear my own mask into the building and then get one of theirs at some point. This will be my first trip into Boston proper since February so I will be careful touching anything as MA is still seeing about 300 new cases per day. So I'll bring several extra gloves, hand sanitizer, etc.

I'd guess that people living in Boston are used to the routine of living there and may think that this is excessive but I'm trying to take as many precautions as I can.


I delayed my 3 year scans from July to August to now September. MDA is in Houston’s medical center and things have been crazy there with the Covid patients. I figure I don’t need to be there and the patients don’t want me there given the circumstances.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear


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