Surviving radiation for rectal cancer

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Annie50
Posts: 80
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun Apr 21, 2019 6:47 am

lakeswim wrote:
MissMolly wrote: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.”

Hi Lakeswim
How are you doing on W &W ? Have you had first scans since ? Hope your flu pains / radio feeling better now xxx Annie xx

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


Hi Karen.
I never saw this in February but seeing it now and it’s very timely! But I am probably reading it too late. My hip pain back in Feb resolved and I had been good/great achiness-wise since then. I even started Livestrong at the Y and was really coming along and feeling great! But then I came down with the flu 2.5 weeks ago. As soon as the flu hit, I started having weird sensations in my rectum and tailbone area. My Onc and Surgeon seemed to blame it on the flu (they don’t seem concerned enough to check it out — even though I’m on W&W). It got better for a day or so — but now it’s back and worse and near constant. I assume the flu inflamed something already on the edge from radiation? Also, in the days before the flu hit, I had started exercising on an erg (so maybe that aggravated that area bc you sit on your butt bones). Anyway, it’s pretty bad and I need to find someone who will take it seriously. Your post was very informative. Thank you!!

Eleda
Posts: 286
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Apr 22, 2019 9:53 am

Annie50 wrote:
Eleda wrote:HI SUSAN
I'm not Gona lie ,, ITS ROUGH!!!!!
I may have turned a corner today??? Lol
Slept for 5hours last night and only 5 times to the toilet this morning ( from 7/11am) clean up is less today which makes all the difference ( skin is in bits)
It's like radiation all over again :( :( :(
Accept for me ( very little bowel control this time ) " no fun"!!!!!!!!!!

I'm waiting to see a continance nurse so that might help,
When u have hemies,( inside and out) it's very painful to try hold poo in.......
But today it was the first day that there was very little clean up after a poo( firmer)
Today slightly thicker than a jelly snake lol( not sure u have them in the US) usually ( since surgery) the with of my baby finger.......
But I'll keep up the good fight lol
Stock up on all Ur previous meds from radiation, and add adult pull ups or pads( not much help but a catcher net for poo) poo doesn't absorb into a pad so try get it off immediately because for me it's very acidy and that's burning the skin!!!!
I've added psyllium husk 2 days ago 1x teaspoon
Then 2x teaspoons yesterday and today at breakfast time with half a banana
That might b helping???????
I've tried the fasting I was so desperate for relief, and it worked the opposite for me ( clustering and soft poo)
But as you know everyone is so different, I hope u will do better ,,
Anything I can help with just ask
ADELE X


OMG Adele I've just seen this I couldn't get on site for a while as it kept rejecting password ! What the heck is happening? Hope you are turning the corner now ? How are you ? What an ordeal !!! Xxx All my love Annie xxxxx


Hi. ANNE
I've done that before lol
I sent u a pm because u were MIA :D
Ya I'm having a tough time ATM,,
But it's getting a little better I suppose,,,
How r u???have u decided on the W&W???
Susan is flying so if u choose surgery she's a shining example of how it can go......

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

Caat55
Posts: 648
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Mon Apr 22, 2019 11:12 am

Well, I am doing okay between 4 a.m. and 11 p.m. For some reason I spend all night running to toilet. In and out of bed, thought about bringing pillow and blanket in with me so I won’t have to climb into bed, worry I keep my husband up. Did wear a Depends to sleep to protect me from an accident, can’t tell gas from the real thing. Burning is inside, not outside. I am avoiding toilet paper, using bidet to rinse. My belly is puffy but it beats the bag.
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
PET NED 12/18
Clear Colonoscopy 2/19

Eleda
Posts: 286
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Apr 22, 2019 11:23 am

Jesus :cry:
I feel Ur pain
I seem to have a pattern now from 5pm to 11 pm past few days!!!!
I CAN DEAL WITH THAT!!!
Ya sore in and out I can understand
I use water wipes,,, not sure if u have them in the us
But they saved me,,,
I only have a sitz bath or the shower head,
Lots of vas/aquafore daytime
And a healing cream night time ( eg, Zinc)
Or the opposite for u ATM,,,,
Hopefully will will b shitting on que for summer lol

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

Caat55
Posts: 648
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Mon Apr 22, 2019 11:29 am

I dug out the Calmoseptine lotion I used during radiation. Hopefully using bidet with protect bum. Belly is tender, was yours? Lots for pollen in the air and sneezing is acutely uncomfortable.
Need to have a friend come over and walk with me as I shouldn’t hold dogs leash, he tugs me up to end of street where he can go off leash. I think walking is important.
A toast to summer?
S
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
PET NED 12/18
Clear Colonoscopy 2/19

Eleda
Posts: 286
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Mon Apr 22, 2019 11:37 am

Not a problem ATM but I don't remember swelling but in saying that I was in hospital for 2 weeks in a pajamas so might not have noticed it's as much
I've a nice belly ( I love wine and cheese and and and lol)! so my opening looks like an elephants ass lol very fetching lol lol
I'll tattoo around it for my 50th lol

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

Annie50
Posts: 80
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Mon Apr 29, 2019 12:13 am

Eleda wrote:Not a problem ATM but I don't remember swelling but in saying that I was in hospital for 2 weeks in a pajamas so might not have noticed it's as much
I've a nice belly ( I love wine and cheese and and and lol)! so my opening looks like an elephants ass lol very fetching lol lol
I'll tattoo around it for my 50th lol

ADELE X

Lol xx How you doing Adele now? Hope feeling better ? Xxx Annie xx

Eleda
Posts: 286
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed May 01, 2019 4:52 pm

Hi Anne
I'm n a heap agian today
Jesus Christ it's tough/rough/exausting!!!
So unpredictable :mrgreen: :mrgreen: :mrgreen:

An ass like a baboon ATM,,, I've to work the next 3 days I don't know how I'll cope,!!!!

How r u?? Have u decided on W&W
I'm no encouragement for surgery lol, but I'm living in the hope it will improve :o :o :o

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

Caat55
Posts: 648
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Wed May 01, 2019 7:15 pm

Eleda wrote:Hi Anne
I'm n a heap agian today
Jesus Christ it's tough/rough/exausting!!!
So unpredictable :mrgreen: :mrgreen: :mrgreen:

An ass like a baboon ATM,,, I've to work the next 3 days I don't know how I'll cope,!!!!

How r u?? Have u decided on W&W
I'm no encouragement for surgery lol, but I'm living in the hope it will improve :o :o :o

Adele X

Oh Adele I am sorry to hear about baboon butt. I find I have to stick to very basic foods, no fresh anything unless cooked like crazy. It is hard when lovely produce is out there. I am walking a ton which is good for my legs but what a tubby tummy. I did wear jeans last night for a bit, first time really since radiation. I hate the “is it a fart or poop thing.” Have started wearing a adult diaper thing at night just in case. Yuck.
S
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
PET NED 12/18
Clear Colonoscopy 2/19

Eleda
Posts: 286
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Fri May 03, 2019 7:34 am

Hi Susan,
I've started taking bicarbonate soda (soup spoon on an empty stomach n the morning in small amount of wate, ) and within an hour I'm emptied for the day, I'll try too take less at the weekend and see if it's as effective,,, I'm working this week so can't chance taking a lesser amount,,,

I haven't run this by any of my medical team , just know it's literally made me normal again so I'm hoping I can continue it daily,,,,( I take an electrolyte to compensate) Can't see why not???

I'm so happy ATM, it's Like IM NORMAL!!!!!!!
ILL TRY LESS AND POST RESULT'S.
JUST HAD A CURRY FOR LUNCH .............

Cancer has taken enough of my life ,,,, but I think I may have it back now......

How r u doing!?????

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

Caat55
Posts: 648
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Fri May 03, 2019 7:30 pm

I am happy to hear you found something that works. I went out to dinner last night, chicken Marsala. I ate some vegetables. No explosions. Today has been okay too. Not enough coming out which is scary, a little afraid to go to far . My husband took a long hike and I stayed back, didn’t want to go in the woods just yet. Tomorrow there is a big political party, barbecue, again staying home. Outhouses. Not ready for them yet either. I have 4 more weeks off. The risk of hernia is high and given I work with special needs kids, pretty unpredictable. So I garden, read books, relax. I wish I stay off forever.
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
PET NED 12/18
Clear Colonoscopy 2/19

NHMike
Posts: 1940
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Fri May 03, 2019 7:39 pm

Caat55 wrote:I am happy to hear you found something that works. I went out to dinner last night, chicken Marsala. I ate some vegetables. No explosions. Today has been okay too. Not enough coming out which is scary, a little afraid to go to far . My husband took a long hike and I stayed back, didn’t want to go in the woods just yet. Tomorrow there is a big political party, barbecue, again staying home. Outhouses. Not ready for them yet either. I have 4 more weeks off. The risk of hernia is high and given I work with special needs kids, pretty unpredictable. So I garden, read books, relax. I wish I stay off forever.
Susan


What has happened while I was gone? Hernia? 4 weeks off?
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

Caat55
Posts: 648
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Fri May 03, 2019 8:11 pm

Reversal two weeks ago. No hernia... being abundantly cautious with lifting and carrying things. Doctor said yesterday, adamant, nothing for 6 weeks so 4 to go. I love to walk and have a great hilly hike right out my door, so many wildflowers, good for me and my dog is loving it.
Adele is ahead of me, comparing symptoms and struggles. I got go ahead to add psyllium to diet yesterday to bulk up stool, help with nighttime control.
S
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
PET NED 12/18
Clear Colonoscopy 2/19

NHMike
Posts: 1940
Joined: Fri Jul 21, 2017 3:43 am

Re: Surviving radiation for rectal cancer

Postby NHMike » Fri May 03, 2019 8:22 pm

Caat55 wrote:Reversal two weeks ago. No hernia... being abundantly cautious with lifting and carrying things. Doctor said yesterday, adamant, nothing for 6 weeks so 4 to go. I love to walk and have a great hilly hike right out my door, so many wildflowers, good for me and my dog is loving it.
Adele is ahead of me, comparing symptoms and struggles. I got go ahead to add psyllium to diet yesterday to bulk up stool, help with nighttime control.
S


I think that caution is a good idea. The bowel problems kept me from doing too much too. I think that I did more after the original surgery.

There are a number of suggestions that I received a while ago and I have a bunch of products that I haven't tried yet and I'm just trying them now. I could really use some time off and am going to talk to a few doctors about STD. There is a project that I want to finish though. I started a new project on revenue generation (personal) and that's going reasonably 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

Annie50
Posts: 80
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sun May 12, 2019 8:44 am

Eleda wrote:Hi Susan,
I've started taking bicarbonate soda (soup spoon on an empty stomach n the morning in small amount of wate, ) and within an hour I'm emptied for the day, I'll try too take less at the weekend and see if it's as effective,,, I'm working this week so can't chance taking a lesser amount,,,

I haven't run this by any of my medical team , just know it's literally made me normal again so I'm hoping I can continue it daily,,,,( I take an electrolyte to compensate) Can't see why not???

I'm so happy ATM, it's Like IM NORMAL!!!!!!!
ILL TRY LESS AND POST RESULT'S.
JUST HAD A CURRY FOR LUNCH .............

Cancer has taken enough of my life ,,,, but I think I may have it back now......

Agreed ! How are you Adele ? Thinking of you ! Xx Annie xxx

How r u doing!?????

Adele X


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