Skin Pain after radiation/Xeloda

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Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Skin Pain after radiation/Xeloda

Postby Caat55 » Thu Dec 28, 2017 6:21 pm

I finished by 33 treatments of radiation with Xeloda on December 8th. The raw, painful skin on my inner thighs has finally healed but the rest of my skin is still very painful, feels like it weeps. Does anyone have a similar experience, advice, how long till I feel normal again? It hurts to walk, pee, etc.

DX Sept 26, Stage 3
Began radiation 10/23
Surgery scheduled 1/31/18
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: 1796
Joined: Fri Jul 21, 2017 3:43 am

Re: Skin Pain after radiation/Xeloda

Postby NHMike » Thu Dec 28, 2017 10:44 pm

I was back to normal about ten days after finishing chemo and radiation. I had leakage, sores and pain (which are quite common). I did not have any issues with my inner thighs.

My radiation team was quite responsive to issues offering products to help with the skin issues though I don't think that I ever tried them.

I know some people that had far worse problems long-term like paper-thin skin, and intercourse problems. I think that radiation is generally tougher on women than it is on men.
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

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Skin Pain after radiation/Xeloda

Postby Atoq » Fri Dec 29, 2017 2:40 am

I had only 25 radiation and Xeloda days, do you know how many Gray you had in total? My skin was also recovered after 10 days and looks normal now, my last session was on the 24th of November.
My urine bladder feels a bit sore but it may be also the cateter after surgery.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Skin Pain after radiation/Xeloda

Postby Aqx99 » Fri Dec 29, 2017 1:08 pm

I never had skin problems with chemoradiation, but to this day I have pain and tenderness in my tailbone region.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Skin Pain after radiation/Xeloda

Postby Caat55 » Fri Dec 29, 2017 2:48 pm

Thanks for the responses. I can't get over how sensitive my skin has become, shampoo bubbles caused a flare up yesterday. Don't know about "Gray", what is it?
Yes, tailbone is sore.
The radiologist finally gave me Miaderm, which has helped some. Initially offered Percocet, I would have preferred cream that's supposed to be used throughout radiation.
How long does leakage last? Weak muscles, or lose of elasticity? Would love to go commando but scared of dribbles.
It is so good to share.
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: 1796
Joined: Fri Jul 21, 2017 3:43 am

Re: Skin Pain after radiation/Xeloda

Postby NHMike » Fri Dec 29, 2017 4:39 pm

Caat55 wrote:Thanks for the responses. I can't get over how sensitive my skin has become, shampoo bubbles caused a flare up yesterday. Don't know about "Gray", what is it?
Yes, tailbone is sore.
The radiologist finally gave me Miaderm, which has helped some. Initially offered Percocet, I would have preferred cream that's supposed to be used throughout radiation.
How long does leakage last? Weak muscles, or lose of elasticity? Would love to go commando but scared of dribbles.
It is so good to share.


I had them from about midway through the radiation treatment to about ten days after treatment ended. I used Depends Shields. I think that the leaks were do to hole or tears in the skin.
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

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Skin Pain after radiation/Xeloda

Postby Aqx99 » Fri Dec 29, 2017 8:58 pm

Caat55 wrote:Thanks for the responses. I can't get over how sensitive my skin has become, shampoo bubbles caused a flare up yesterday. Don't know about "Gray", what is it?
Yes, tailbone is sore.
The radiologist finally gave me Miaderm, which has helped some. Initially offered Percocet, I would have preferred cream that's supposed to be used throughout radiation.
How long does leakage last? Weak muscles, or lose of elasticity? Would love to go commando but scared of dribbles.
It is so good to share.


I have had urinary leakage since my LAR, despite all attempts at strengthening my pelvic floor muscles. I think it is a combination of the radiation and surgical damage.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Skin Pain after radiation/Xeloda

Postby Caat55 » Sat Dec 30, 2017 12:13 am

Aqx99 wrote:
Caat55 wrote:Thanks for the responses. I can't get over how sensitive my skin has become, shampoo bubbles caused a flare up yesterday. Don't know about "Gray", what is it?
Yes, tailbone is sore.
The radiologist finally gave me Miaderm, which has helped some. Initially offered Percocet, I would have preferred cream that's supposed to be used throughout radiation.
How long does leakage last? Weak muscles, or lose of elasticity? Would love to go commando but scared of dribbles.
It is so good to share.


I have had urinary leakage since my LAR, despite all attempts at strengthening my pelvic floor muscles. I think it is a combination of the radiation and surgical damage.


I have started pelic floor exercises. Sorry to hear you still have problems. Wow, there was so much the radiation oncologist didn't share with me.
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

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Skin Pain after radiation/Xeloda

Postby Atoq » Sat Dec 30, 2017 6:16 am

Caat55 wrote:Thanks for the responses. I can't get over how sensitive my skin has become, shampoo bubbles caused a flare up yesterday. Don't know about "Gray", what is it?


It is a measure of radiation, I had two each day for a total of 50.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

Re: Skin Pain after radiation/Xeloda

Postby Caat55 » Wed Jan 03, 2018 9:31 pm

NHMike wrote:
Caat55 wrote:Thanks for the responses. I can't get over how sensitive my skin has become, shampoo bubbles caused a flare up yesterday. Don't know about "Gray", what is it?
Yes, tailbone is sore.
The radiologist finally gave me Miaderm, which has helped some. Initially offered Percocet, I would have preferred cream that's supposed to be used throughout radiation.
How long does leakage last? Weak muscles, or lose of elasticity? Would love to go commando but scared of dribbles.
It is so good to share.


I had them from about midway through the radiation treatment to about ten days after treatment ended. I used Depends Shields. I think that the leaks were do to hole or tears in the skin.



I have been following your posts. I am seeing surgeon tomorrow after an MRI in am. Hope to get some good news. Get a pain for the next phase.

I read about Calmoseptine on another page, got it today and finally no pain. I typically walk about 2 miles a day with my dog in addition to being pretty active at work as a therapist in the schools. Hate how this has slowed me down. On to better times.
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: 1796
Joined: Fri Jul 21, 2017 3:43 am

Re: Skin Pain after radiation/Xeloda

Postby NHMike » Wed Jan 03, 2018 10:08 pm

Caat55 wrote:
I have been following your posts. I am seeing surgeon tomorrow after an MRI in am. Hope to get some good news. Get a pain for the next phase.

I read about Calmoseptine on another page, got it today and finally no pain. I typically walk about 2 miles a day with my dog in addition to being pretty active at work as a therapist in the schools. Hate how this has slowed me down. On to better times.


Everything I’ve read and heard says that being active is a positive in getting through treatment, recovery and preventing recurrence.

I also hate being slowed down and not being able to do what I did before. But I hope to be back.
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

BethD
Posts: 13
Joined: Sun Dec 17, 2017 8:58 pm

Re: Skin Pain after radiation/Xeloda

Postby BethD » Thu Jan 04, 2018 12:06 am

I hope you're feeling better Caat
I had 25 treatments of radiation + Xeloda and my pain was at its worst 5-7 days after the last radiation treatment, and pretty healed up by day 14.
I used a lot of Aquaphor, calendula, coconut oil, Rick Simpson oil and Vitamin A & E. cream and tried to air out as much as possible.

talk to you soon
Beth
42
Dx: Feb 2017 RC 2 cm from AV
Stage 3a
Laparascopic with colostomy
Radiation Oct/Nov 2017
Chemotherapy

BethD
Posts: 13
Joined: Sun Dec 17, 2017 8:58 pm

Re: Skin Pain after radiation/Xeloda

Postby BethD » Thu Jan 04, 2018 12:09 am

& my nurse suggested pyridium for the urination pain
42
Dx: Feb 2017 RC 2 cm from AV
Stage 3a
Laparascopic with colostomy
Radiation Oct/Nov 2017
Chemotherapy

Caat55
Posts: 539
Joined: Sat Dec 23, 2017 6:01 pm

New MRI and met my surgeon, Skin Pain after radiation/Xeloda

Postby Caat55 » Sat Jan 06, 2018 2:15 pm

Meet my surgeon on Thursday for first time. He said he could barely find tumor, previous 9.2 cm. MRI showed similar results, only thickening of the rectal wall. Oncologist said that is results of tissue under microscope is similar we are 99.9 %, total remission. Is that same as NED? Happy, excited going forward. Still going to do surgery and chemo for whatever is there.
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

User avatar
Atoq
Posts: 318
Joined: Wed Oct 25, 2017 9:31 am

Re: Skin Pain after radiation/Xeloda

Postby Atoq » Sat Jan 06, 2018 2:41 pm

This was really good news! I got excited for you! :D

I am scheduled MR in two weeks to check how much the tumor have shrinked :)

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6


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