Rectal cancer (Stage 3A) diagnosed late June 2017

Please feel free to read, share your thoughts, your stories and connect with others!
NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Oct 11, 2018 6:52 am

Caat55 wrote:Thanks for the update, supplying a timeline. I am trying to decide on my reconnect time. Do I waste the holidays with my family by spending time in bathroom or wait till they go back home? I am inclined to wait, do it in January and hopefully get a handle on things enough to do things again in the spring. Realistic who knows, seems every body is different.
S


I prefer to get stuff out of the way so that you can enjoy more life later on. I've been a delayed gratification-type person for most of my life but there are benefits to taking care of things or fixing things sooner as you'll have more time to enjoy them. But I understand putting things off to enjoy traditions.

I do think that it is really different for each person as there is so much variety to the pieces in our bodies. You have the advantages of being active and young and those are big advantages.
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; 9/8: 1.8; 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
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

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Oct 11, 2018 6:54 am

Eleda wrote:I'm in same predicament Susan, but I think I'll wait till after, don't want to be housebound with Xmas and small kids on holiday and no aupair,,,, My surgeon did when I asked give me an inclination as to the problems I'm due to encounter, which will be more evecuation problems as apposed to incontinence,,, because he said he tried to make the reconnect perfect size but obviously u need to veer one way or the other so he went on the smaller, which I hope will be effective
Mike I seem to be having a long ought road since chemo
And thanks for Ur continuous updates,,, hope I'll be sorted soon
ADELE X


I think that recovery times for chemo varies widely too along with what kinds of reductions you got from your oncologist through chemo. I think that some things fade with a lot of time and some may be permanent.

I didn't realize that the reconnect size was variable by the surgeon and I'll ask about it when I see her next month. I will be using Dana Farber for surveillance and I have appointments with the oncologist and surgeon on the same day.
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; 9/8: 1.8; 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
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

heiders33
Posts: 314
Joined: Sat Nov 04, 2017 11:08 am

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

Postby heiders33 » Thu Oct 11, 2018 6:59 am

I've definitely noticed that the neuropathy in my feet has faded over time. I used to get major pins and needles when I took my shoes off at the end of the day, but now it's very faint. We'll see how winter goes when I wear socks and boots again. Just want to encourage anyone else who may be dealing with the same thing.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Oct 11, 2018 9:11 am

I think that Neuropathy can fade with time but it's compounded by temperature, at least for me. I'm noticing it more in my toes as the temperatures fall. I don't really think about it in my fingers. There is a little there but it's only noticeable if I look for it. I'm already wearing wool socks and it gets down to the 30s here this weekend.
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; 9/8: 1.8; 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
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

Caat55
Posts: 545
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu Oct 11, 2018 8:57 pm

Eleda wrote:I'm in same predicament Susan, but I think I'll wait till after, don't want to be housebound with Xmas and small kids on holiday and no aupair,,,, My surgeon did when I asked give me an inclination as to the problems I'm due to encounter, which will be more evecuation problems as apposed to incontinence,,, because he said he tried to make the reconnect perfect size but obviously u need to veer one way or the other so he went on the smaller, which I hope will be effective
Mike I seem to be having a long ought road since chemo
And thanks for Ur continuous updates,,, hope I'll be sorted soon
ADELE X

Decisions, decisions, never the right time but the best time? Another consideration is my fragile skin, so trashed after radiation, chemo messed it up again. It seems like anything, everything makes it tear, sore again.
Keep on going forward.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Caat55
Posts: 545
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Thu Oct 11, 2018 8:59 pm

Mike,
How are your feet? Mine hurt, a lot, especially whenI first get them on the floor, after long walks
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Oct 12, 2018 7:07 am

Caat55 wrote:Mike,
How are your feet? Mine hurt, a lot, especially whenI first get them on the floor, after long walks


I wear socks most of the time (except for going to the shower, sometimes in bed). I would not say that they hurt but they are more sensitive on tile floors as opposed to vinyl as tile seems to be cooler and harder than vinyl. So it's something that I notice a bit but I will probably notice it less over time.

Where and how are your feet hurting? I've had several foot injuries in the past related to tennis and running as it might be unrelated to cancer treatment unless it's pain in the toes.
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; 9/8: 1.8; 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
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

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Oct 12, 2018 7:08 am

Caat55 wrote:Decisions, decisions, never the right time but the best time? Another consideration is my fragile skin, so trashed after radiation, chemo messed it up again. It seems like anything, everything makes it tear, sore again.
Keep on going forward.


Would it be worthwhile talking to a dermatologist?
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; 9/8: 1.8; 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
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

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Oct 12, 2018 7:11 am

It seems like I all of a sudden have control. Or at least a lot more of it. I'm not sure why it is now - it could be time or it could be the running or it could be the barbell exercises (squats and deadlifts) that worked on some muscles that had been weak. But I'm cautiously optimistic as I have been going longer and longer without Depends and pads during the day. I still wear something when I drive as the car is a much more uncontrolled environment, and I also wear something to sleep - but maybe one day I won't have to.
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; 9/8: 1.8; 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
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

Caat55
Posts: 545
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Oct 12, 2018 9:54 am

NHMike wrote:
Caat55 wrote:Mike,
How are your feet? Mine hurt, a lot, especially whenI first get them on the floor, after long walks


I wear socks most of the time (except for going to the shower, sometimes in bed). I would not say that they hurt but they are more sensitive on tile floors as opposed to vinyl as tile seems to be cooler and harder than vinyl. So it's something that I notice a bit but I will probably notice it less over time.

Where and how are your feet hurting? I've had several foot injuries in the past related to tennis and running as it might be unrelated to cancer treatment unless it's pain in the toes.


I spent about 10 hours on my feet on Saturday, our community hosts a huge Grape Stomp, Winery was slammed. My feet ached which is normal for anyone after so much but a tingly ache. I notice the painly is pins and needles like, especially when my feet first hit the floor at night when I go to empty bag or after sitting a while. Been doing my 10000 steps, will probably just need more cushion sneakers.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Caat55
Posts: 545
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Fri Oct 12, 2018 9:55 am

NHMike wrote:It seems like I all of a sudden have control. Or at least a lot more of it. I'm not sure why it is now - it could be time or it could be the running or it could be the barbell exercises (squats and deadlifts) that worked on some muscles that had been weak. But I'm cautiously optimistic as I have been going longer and longer without Depends and pads during the day. I still wear something when I drive as the car is a much more uncontrolled environment, and I also wear something to sleep - but maybe one day I won't have to.

That is truly good news.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Soccermom2boys
Posts: 196
Joined: Tue Nov 10, 2015 10:29 pm

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

Postby Soccermom2boys » Fri Oct 12, 2018 9:42 pm

NHMike and Caat—

I highly recommend an investment of a decent foot massager to help stimulate the nerves in your feet from the oxaliplatin induced neuropathy. I am almost two and a half years out from chemo and unfortunately have permanent neuropathy in my feet, but I at least have it down to a pain scale of 1-2 which absolutely beats where it was at it’s worst. Had I thought to purchase a foot massager back in the earlier days of my recovery, I feel like I might have been able to fully recover from the neuropathy. I have a homedics one I purchased through Kohl’s, I believe it was somewhere around $80 after discounts and I try to use it several times a day (have had it for about 9 months now). Initially it did hurt to use it and so I had to build up my tolerance, but now it is that kind of hurt that feels good as it is massaging my whole foot. I know I am too far out to fully eliminate the neuropathy at this point, but I have noticed a definite difference between now and when I first bought the massager. I can be on my feet for long stretches of time with no complaints—I find I notice the neuropathy the most when I lay down at night and want to stretch my legs and feet or the chill of the sheets or tile flooring as Mike noted. While I am bummed I will never be rid of the neuropathy, I had it bad enough that this is very tolerable if this is to be my lot in life. :)
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

AppleTree
Posts: 248
Joined: Fri Mar 18, 2016 8:16 am

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

Postby AppleTree » Fri Oct 12, 2018 11:48 pm

I did 12 rounds of Folfox. I was bald at Christmas and now have thick (but short) hair. My last chemo was in April. My biggest issue was the runs. So, I am 5'8" tall and down to 103 pounds, but finally, at almost 6 months out, I too am having more control!
Having said that, I still get a monthly Sandostatin shot. But 2 months ago I was also taking 6-8 Lomotol a day and running to the toilet constantly. Now I only take 1 on occasion now. I do take an Oxicodon every night before bed, and I know that helps too. It is really for radiation pain in my tailbone and hips. Just 1 at night gives me a much better sleep. I still wear Depends most days out, but usually not at night anymore. I also have issues with fecal incontinence- the surgeon did have to cut into my sphincter muscle. I try to eat 5-6 snack size meals a day instead of big meals that my body immediately wants to dump. I am going to physical therapy at the hospital 2x a week to help build up my strength. My head sure feels heavy by night! And my socks always feel wrinkled or wet, but when I check they are fine. So, the bottom of my feet for feel weird. I think Mike and I are pretty evenly matched on our timelines. Seems like we joined this group about the same time. I had a PET in June and my follow up PET is Monday. Bumping along from Stage 4 to NED. It did not happen overnight that my body got so weak, so I expect it will take time building it back up again. But it does seem like the pendulum is slowly starting to swing in the other direction.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Oct 14, 2018 5:23 pm

Caat55 wrote:I spent about 10 hours on my feet on Saturday, our community hosts a huge Grape Stomp, Winery was slammed. My feet ached which is normal for anyone after so much but a tingly ache. I notice the painly is pins and needles like, especially when my feet first hit the floor at night when I go to empty bag or after sitting a while. Been doing my 10000 steps, will probably just need more cushion sneakers.


Is the pain in the heel or elsewhere? If it's in the heel, then it's likely Plantars Fasciitis.

The classic case is where you feel pain when you put your feet on the floor first thing in the morning (or at night as the case may be). The causes are often worn shoes, too much heel impact, and not enough flexibility in the calf. What happens is that you sleep with your feet at an obtuse angle to your leg so there's a cord that contracts and it's anchored to your heel. When you step on the floor in the morning, it pulls the cord tight and can tear a little. Then it heals during the day and at night and then you do it over again the next day. If you have this, you could try slowly flexing the foot so that it's at a 90 degree angle to your leg before getting out of bed. My case was cured with a night splint which I made from parts from Home Depot - this was before medical supply places started carrying them.
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; 9/8: 1.8; 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
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

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Sun Oct 14, 2018 5:26 pm

I spoke too soon on control. I only have control when I'm aware of the flow and manage it and when I go to the bathroom when my body signals it. It also doesn't work as well when I'm dead tired.

I ran 15 miles last week and it was challenging to do and I was really tired some of the days. I've picked up the strength training too and can see and feel the gains there. Then biggest reason for running is cardio health and stress reduction and that is working.

But things are getting better with the control - just not perfect yet.
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; 9/8: 1.8; 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
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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: jep, Katiejane and 61 guests