Surviving radiation for rectal cancer

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lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Tue Feb 12, 2019 4:16 pm

sinewaves wrote:Sorry to ask a new question, but how long after radiation ended with the diaherra (for those who got it) go away? I have 3 more days (the boosts) and I am ready for this particular side effect to end.


My diarrhea stopped as soon as I stopped Xeloda, which was early (day 22 of 28 days of chemorad) due to severe side effects - so I assume that's what gave me diarrhea. That Xeloda is nasty stuff. In some ways, Xeloda was worse than FOLFOX (which I did first). At least I had a rest week between infusion rounds. But Xeloda is daily. Ugh. I ate as little as I could and only binding foods for most of my chemorad to control output.

I felt great nearly immediately after radiation ended (I had migraine a few days after stopping Xeloda though). It's now - 10-12 weeks post chemorad - that things are hard again. I think the radiation is peaking and I now have my first UTI (probably from urethral stenosis), pelvic (hip/back) aches, bowel changes (more stenosis?) and staying on top of vaginal dilation.

I hope it gets better for you soon (the diarrhea is terrible - halts your life!).
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

Caat55
Posts: 590
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Tue Feb 12, 2019 11:12 pm

The joint pain I am blaming on radiation. I am doing a lot of walking lately. Uphill, which is my daily routine, my hips are sore. Walked 6 miles on trails without problem. I wonder what radiation does to bones in pelvis?
I am also trying to do yoga every day, build some core strength prior to my reversal on the 18 of April. Terrified. I have a colonoscopy scheduled before the reversal, no prep except a liquid diet.
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

Eleda
Posts: 245
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed Feb 13, 2019 5:38 am

Me too Susan,
struggling with the joints ATM, also manopause isint helping it.
Im completely post manopausal now,, ( thanks to radiation) , so should probably take a calcium and magnesium supplement,,,,,
I'm weigh training 3 times a week
But don't do much core /abs because I'm afraid I'll gather a hernia,,,,
I was also wondering about pre surgery, is it fasting or prep :twisted:
Is imagine we will be around the same time
My bloods all good yesterday
CEA 4.4
CA19/9 8
CHOLESTEROL 6.1
all others normal so that's a comfort ATM as I haven't had a scan or MRI since mid OCTOBER

ADELE X
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

Deep
Posts: 20
Joined: Thu Nov 01, 2018 6:10 pm

Re: Surviving radiation for rectal cancer

Postby Deep » Wed Feb 13, 2019 7:21 pm

sinewaves wrote:Sorry to ask a new question, but how long after radiation ended with the diaherra (for those who got it) go away? I have 3 more days (the boosts) and I am ready for this particular side effect to end.


I never experienced the diarhea too much, but do notice that you are doing 28 sessions. Just wondering how the Doctors determine how many radiation treatments to do? I only did 25 and my diagnosis is T3N1M0... I feel like I got cheated for my chances with the watch and wait, no surgery option.
11/29/18 Diagnosed T3N1 Rectal Cancer (Age 39, Male, no family history)
01/02/2019- 25 rounds radiation/chemo (Capecitabine)

lakeswim
Posts: 192
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Wed Feb 13, 2019 8:49 pm

Caat55 wrote:The joint pain I am blaming on radiation. I am doing a lot of walking lately. Uphill, which is my daily routine, my hips are sore. Walked 6 miles on trails without problem. I wonder what radiation does to bones in pelvis?
I am also trying to do yoga every day, build some core strength prior to my reversal on the 18 of April. Terrified. I have a colonoscopy scheduled before the reversal, no prep except a liquid diet.
Susan



I find uphill walking aggravates my hips and thighs as well.

As for the question of 28 sessions. I don’t know. I noticed that someone here did 33 sessions. My tumor was “bulky” - but not sure that mattered. I tried to google the protocol info but can’t find it at this moment.
50 - F
Mom to 2 teens
RC - dgns 3/18 at age 49
Adenocarcinoma
10-11 cm frm anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept '18
Capecetabine + Radiation - 28 sessions - Oct - Nov 2018
Jan 19 - Tumor gone but determining next steps

MissMolly
Posts: 614
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Surviving radiation for rectal cancer

Postby MissMolly » Wed Feb 13, 2019 9:39 pm

Lake swim:
You are commenting about newfound hip/pelvis pain following chemo radiation and wondering “What’s up?”

I was a physical therapist before chronic ill-health found me and treated many individuals following radiation therapy. Radiation has known effects on the connective tissue that comprises ligaments (anchor soft tissue to bone) and tendons (anchor one bone to another bone). Ligaments and tendons become hardened, less elastic, less pliable, sticky and tacky, and sometimes “frozen.”

Think of a normal elastic rubber band that is dynamic and easily elongates (pre-radiation) that becomes a aged remnant of parched, dry elastic pocketed with surface cracks, with little ability to elongate and that actually breaks as tension is applied.

The hip joint capsule and sacro-iliac joints are particularly vulnerable to radiation. The hip joint capsule thickens and constricts and becomes tacky, manifested as restricted joint movement for external rotation and abduction (movement away from body midline). Crossing one leg over the other will feel tightened or restricted as will sitting cross-legged. Putting on a pair of shoes can be difficult. Assuming a lunge position will feel acutely tight or restricted in the buttocks muscle.

Small micro-movements of the sacro-Iliac joints allow for ease of cloning up and down stairs, as an example. Going up an incline or climbing a series of stairs will be more discomfiting due to radiation effects on the SI joints. SI joint pain is not well localized and is oft felt as referred pain to the hip.

Gentle stretching for the hip, hip joint capsule, and SI joints can be helpful. Slow, slow and gentle stretching. You want to avoid further trauma and micro-years to the ligaments and tendons. Avoid quick, bouncy or ballistic nor movements/stretching. Consult with a personal trainer or physical therapist to help devise a home program of gentle stretches tailored to you. It can be time well invested.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Thu Feb 14, 2019 12:31 pm

Deep wrote:
sinewaves wrote:Sorry to ask a new question, but how long after radiation ended with the diaherra (for those who got it) go away? I have 3 more days (the boosts) and I am ready for this particular side effect to end.


I never experienced the diarhea too much, but do notice that you are doing 28 sessions. Just wondering how the Doctors determine how many radiation treatments to do? I only did 25 and my diagnosis is T3N1M0... I feel like I got cheated for my chances with the watch and wait, no surgery option.


Yes I don't know either I had 28 but the onco changed it half way through to add the 3 extra boosts but never explained why !

Annie50
Posts: 72
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sat Feb 16, 2019 4:06 am

Eleda wrote:Me too Susan,
struggling with the joints ATM, also manopause isint helping it.
Im completely post manopausal now,, ( thanks to radiation) , so should probably take a calcium and magnesium supplement,,,,,
I'm weigh training 3 times a week
But don't do much core /abs because I'm afraid I'll gather a hernia,,,,
I was also wondering about pre surgery, is it fasting or prep :twisted:
Is imagine we will be around the same time
My bloods all good yesterday
CEA 4.4
CA19/9 8
CHOLESTEROL 6.1
all others normal so that's a comfort ATM as I haven't had a scan or MRI since mid OCTOBER

ADELE X


Hey Adele that's great isn't it !! All good ? Xxx Annie xxx

sinewaves
Posts: 9
Joined: Tue Dec 18, 2018 9:44 am

Re: Surviving radiation for rectal cancer

Postby sinewaves » Sat Feb 16, 2019 11:03 am

Deep wrote:
sinewaves wrote:Sorry to ask a new question, but how long after radiation ended with the diaherra (for those who got it) go away? I have 3 more days (the boosts) and I am ready for this particular side effect to end.


I never experienced the diarhea too much, but do notice that you are doing 28 sessions. Just wondering how the Doctors determine how many radiation treatments to do? I only did 25 and my diagnosis is T3N1M0... I feel like I got cheated for my chances with the watch and wait, no surgery option.


I asked how many they chose and they just said it was the same for everyone - 25 normal sessions and then 3 boosts (where they did 30 seconds on each side and nothing from the top.) They did explain that the boosts were focused exclusively on the tumor area, and the other were wider.

Both my radiation oncologist and my medical oncologist dismissed W&W and said they're both certain I'll have surgery because that's the standard of care and best chance for a younger person. My surgeon is a little more inclined to W&W but he also said the best course is likely to be surgery and permanent colostomy due to margins of the tumor. While I'd love to avoid surgery, I'm at peace with having it since it means I get more time to pursue life.
DX @ 37, married, no children
11/2018 - Dx "MALIGNANT NEOPLASM of DISTAL RECTUM", greater than 3cm at the dentate line Rectal Cancer (Stage 3a, T3N1M0)
1/7/ - 2/14/2019 - Radiation + Xeloda (4,000 mg per day - 4 pills in morning and evening) - 28 days

Caat55
Posts: 590
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Mon Feb 18, 2019 10:31 pm

MissMolly wrote:Lake swim:
You are commenting about newfound hip/pelvis pain following chemo radiation and wondering “What’s up?”

Gentle stretching for the hip, hip joint capsule, and SI joints can be helpful. Slow, slow and gentle stretching. You want to avoid further trauma and micro-years to the ligaments and tendons. Avoid quick, bouncy or ballistic nor movements/stretching. Consult with a personal trainer or physical therapist to help devise a home program of gentle stretches tailored to you. It can be time well invested.
Karen


Once again Miss Molly thank you. That makes complete sense, speaks to the importance of a careful recovery regime. I will stick with my yoga and walking program, let my husband and the dog do the running. Just happy to be alive and moving.
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

Caat55
Posts: 590
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Mon Feb 18, 2019 10:33 pm

Eleda wrote:Me too Susan,
struggling with the joints ATM, also manopause isint helping it.
Im completely post manopausal now,, ( thanks to radiation) , so should probably take a calcium and magnesium supplement,,,,,
I'm weigh training 3 times a week
But don't do much core /abs because I'm afraid I'll gather a hernia,,,,
I was also wondering about pre surgery, is it fasting or prep :twisted:
Is imagine we will be around the same time
My bloods all good yesterday
CEA 4.4
CA19/9 8
CHOLESTEROL 6.1
all others normal so that's a comfort ATM as I haven't had a scan or MRI since mid OCTOBER

ADELE X


Do you have a surgery date? Were you ever anemic? Apparently my levels are still low, creeping up but not what my oncologist likes. Not looking forward to the colonoscopy but loving having no prep!
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

Eleda
Posts: 245
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Tue Feb 19, 2019 5:36 pm

Hi Susan,
Only a date to see my surgeon on march 4th to check all is ok to go ahead with reversal, I'd imagine end march beginning of April.
No......bloods only hit below safe leavel on second last chemo but skipped chemo for 2 weeks and bounced back again,,
Sigmoid colo is easy,
And yes especially without the prep :D
ADELE X
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

sinewaves
Posts: 9
Joined: Tue Dec 18, 2018 9:44 am

Re: Surviving radiation for rectal cancer

Postby sinewaves » Wed Feb 20, 2019 9:27 am

So another noob question -

When do the razor/lava poops go away? It's been 6 days since my last radiation and it's still quite painful to pass, even though the diarrhea is gone. I guess its always be careful what you wish for - trade one inconvenience for another more painful one.
DX @ 37, married, no children
11/2018 - Dx "MALIGNANT NEOPLASM of DISTAL RECTUM", greater than 3cm at the dentate line Rectal Cancer (Stage 3a, T3N1M0)
1/7/ - 2/14/2019 - Radiation + Xeloda (4,000 mg per day - 4 pills in morning and evening) - 28 days

NHMike
Posts: 1907
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Wed Feb 20, 2019 9:29 am

sinewaves wrote:So another noob question -

When do the razor/lava poops go away? It's been 6 days since my last radiation and it's still quite painful to pass, even though the diarrhea is gone. I guess its always be careful what you wish for - trade one inconvenience for another more painful one.


It was two weeks from last chemo/rad 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

Eleda
Posts: 245
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Tue Feb 26, 2019 5:51 am

Same here every day got a bit better, but I know when Ur in the throws of it a day to day evaluation is what u want,,,, I'm sure ull find it on mike's thread..... He documented everything firm day one,,,,practly by the hour


viewtopic.php?f=1&t=58447#p460012
ADELE X
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


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