Surviving radiation for rectal cancer

Please feel free to read, share your thoughts, your stories and connect with others!
Eleda
Posts: 312
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sat Mar 16, 2019 12:32 pm

Hi Anne,,, yes thus Thursday :shock:
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: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Sat Mar 16, 2019 9:50 pm

macpudd wrote:Hope the procedue goes well and quick recovery Eleda, likewise for everyone hear. Just leavnig home now to start my Avastin this morning, onc says it should maintain quality of life but wont really prolong things. So sad to hear whats happening in New Zealand, ther aer so many evil people donig bad things.

The is a lot of evil but also so much good. Keep up your fight.
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

Annie50
Posts: 85
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sat Mar 30, 2019 7:59 pm

Eleda wrote:Hi Anne,,, yes thus Thursday :shock:

How did you get on Adele ?? Xxx

Eleda
Posts: 312
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Mar 31, 2019 5:53 am

Hi Anne, not so good, I'm still here, I have a tiny fistula between the rectum and the vaginal canal so as u can imagine it's a problem,
I went back to surgery last Thursday ( in floods of tears ) to have my reversal reversed and temp clostomy to allow for it to heal but apparently he decided to try let it heal itself, so didn't do it .... ( Relieved,, MUCH ) but it's not healing and still leeking so hoping if the poo thickens up it might bypass the hole and allow to heal,,,, if not back to reversal of takedown :| this week so fingers crossed,,, that it will work!!!!!
Thanks 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: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Sun Mar 31, 2019 11:23 am

Oh Adele,
I am so sorry to hear this, what a terrible pain. Hope it does hea. How, fistula is caused by what?
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: 312
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Mar 31, 2019 12:01 pm

The gift that keeps on giving Susan
!!!!!RADIATION!!!!
And he streached my rectum during surgery so this may have caused it,,,
It's not causing me extra pain
Just extra problems
And just a note for u, as I know u had it bad at radiation,,, my ass is burned to bits from shitting lol so BE PREPARED!!!! I think I was too sensitive to one wipe and completely burned already broken skin,,,
Tomorrow I will know what the next move will b,,, reverse the reversal
Or go home and see if the leak repairs
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: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Sun Mar 31, 2019 12:52 pm

That's my concern too, scares me to bits. Dr. Says 4 weeks recovery, doesn't sound right to me considering I still hurt from colonoscopy. My GI doctor suggested hyperbaric oxygen treatment to heal my skin. Also there is some wipes they have my to use with ileo, cavillon no sting barrier wipes and spray. Mike mentions it in his posts. Worth a look.
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: 312
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Sun Mar 31, 2019 2:54 pm

I have them in the hospital Susan, they help but nothing prepares u for the amount of pooping u do initially afterwards and it's the cleaning is the problem,,, I'm n hospital 11days later sharing a bathroom with no flexible shower in the room so it's harder,
If I were at home I'd go straight from toilet bowl to shower hose my bum lol , but can't do that here, so that's what started all this, it's like radiation all over again, but WORSE,,,, certainly for me anyway!!!!!!!!!
They had a specially made up cream for me from the pharmacy,, with suedocreme, oils and healing properties Luke zinc etc so I'm lashing that on ATM and it's HELPED, only due to the fact I've stopped pooing 89 times a day and yesterday X2 and today X1, I'm not afraid of a blockage but I'll worry about that when it happens

It's more important for me now to thicken the poo, so might start me on imodium tomorrow ( not generally the norm)

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: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Tue Apr 16, 2019 10:29 pm

Hi Adele,

I am missing you. Hope things are okay? I have reversal on Thursday and need to know you how you are coming along.
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: 312
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Surviving radiation for rectal cancer

Postby Eleda » Wed Apr 17, 2019 5:46 am

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
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

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Wed Apr 17, 2019 7:42 am

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.”

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!!
50 - F - Mom
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 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

lakeswim
Posts: 209
Joined: Sat Mar 31, 2018 9:37 am

Re: Surviving radiation for rectal cancer

Postby lakeswim » Wed Apr 17, 2019 7:48 am

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.”

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



Also, another thing, Karen ... in the days prior to the flu, they had us do a hip hop dance class (!) at Livestrong with lots of hopping and bouncing. Based on your post, that certainly didn’t help anything. Between the dancing, erging (rowing machine), and flu - it probably was the perfect storm for my sacrum (which is where I feel most of the discomfort.) Thanks again for your insight.
50 - F - Mom
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 - MRI & flex sig show tumor gone
Mid-Feb 19 - MRI & flex sig show tumor gone
W&W

Caat55
Posts: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Wed Apr 17, 2019 10:10 am

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"!!!!!!!!!!


But as you know everyone is so different, I hope u will do better ,,
Anything I can help with just ask
ADELE X


Good to know you are getting some control. I am a little freaked out. Will go shopping today and pick up some adult briefs. The folks at hospital continue to minimize the post op stuff. I can't imagine it's going to be a easy as they make it, more like your experience.
I will reach out when I can.
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

Annie50
Posts: 85
Joined: Mon Jul 16, 2018 3:44 pm

Re: Surviving radiation for rectal cancer

Postby Annie50 » Sat Apr 20, 2019 6:03 pm

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

Caat55
Posts: 661
Joined: Sat Dec 23, 2017 6:01 pm

Re: Surviving radiation for rectal cancer

Postby Caat55 » Sat Apr 20, 2019 9:11 pm

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

Adele,
we call them gummy worms, and yes that is a great description. I seem to have a since of something which sends me to bathroom. There is some blood, Dr. said it normal. I am really blotted, hope that gets better. Glad to be home in some ways but there are things to do here, in hospital there was nothing.
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


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



Who is online

Users browsing this forum: MetastaticEquilibria and 31 guests