Skin Pain after radiation/Xeloda

[Caat55]

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

[NHMike]

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.

[Atoq]

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

[Aqx99]

I never had skin problems with chemoradiation, but to this day I have pain and tenderness in my tailbone region.

[Caat55]

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.

[NHMike]

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.

[Aqx99]

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.

[Caat55]

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.

[Atoq]

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

[Caat55]

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.

[NHMike]

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.

[BethD]

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

[BethD]

& my nurse suggested pyridium for the urination pain

[Caat55]

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.

[Atoq]

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

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

Claudia