Burns

The burned tissue was
The burned tissue was "weepy", but it stopped about 2 weeks out of treatment. It might not have been that long. I was always sitting on a towel at home and/or using panti liners. I slept with a towel under my bum because the burns were oozing.

I bought some boy short panties at Target that were real soft. I wear a size 6 and bought XXL so they would be nice and loose. My radiation tech recommended cotton, but they were too tight in the legs. At home I tried to get as much air as possible to the burns. I usually was in my sleep shirt and sitting on towels, so I wouldn't ruin the upholstery.

The only time I broke down during the treatment was when I used a Fentanyl patch. I drove myself that day to radiation. Before I left, I urinated. It was about week 5. At this point, I had to stand in the shower with a hand-held showerhead and run water over me because it was so painful for my urine to touch all of the burned tissue. Well, I was in a hurry, and I didn't get in the shower and was in a lot of pain. I only live about 10 minutes from the medical center in Houston. I barely made it there. I kept getting dizzy in the car. By the time I made it to the hospital, they put me in a wheelchair. And then I broke down in the middle of the hospital lobby. I boo hooed all the way to radiation. I ripped off that patch after 2 days. I hated that patch, too. I think it was worse than the pain.

On the leakage - I had a monarc sling surgical procedure a couple of years ago for bladder leakage. I had a slight problem with it when I laughed or sneezed. I have been wearing panty liners for years. I am 52. Apparently the monarc sling isn't working very well anymore. I am currently wearing a long panti liner plus another long one cut in half. I was in Target the other day and "sharted". As Jack Nicholson said in the "Bucket List" (movie) - never trust a fart. Also, my gynecologist said it could be some vaginal discharge instead of the bladder. I just put on my 1 1/2 panti liners and I am good to go.

Here's some more fun stuff to watch out for. I was Stage IIIB and I finished treatment October 2009. I just started physical therapy for my hips this month. They hurt all the time. The muscles shortened in the pelvic area. This started mid January where I could hardly get out of a chair without holding on to something. I wish I hadn't waited so long to start, but I didn't know. My radiation oncologist was just concerned about getting his treatment completed, and not so much about the side effects. My radiation techs said I was getting a pretty high dose, so everybody is different. My vagina also shrunk up and shortened. I have had to use a dilator on that and hormone cream.

Just because you are finished with the treatment, doesn't mean there aren't other things to deal with. My friends, especially, don't really understand the major changes and after effects of the chemo and radiation.

Just take it a day at a time, but I wanted to give you a heads up about the physical therapy if your hips hurt. I'm sure it depends on how much radiation you received.

Barbara

"Boy Shorts" definitely helped
First I tried mens boxer shorts, but the "butt" was too small and the leg area too loose. The leg holes would get all bunched up under my pants. I found some "boy shorts" in the womens section (Lucky Brand). They fit snuggly, but not too tightly. I wish I had found them earlier in my radiation treatment. I think the leg elastic from my regular panties really aggravated my burns and caused my skin to breakdown even sooner. I ended up in the hospital for 12 days with Stage 3 Radiation Burns. When the Burn Treatment Nurse was dressing my wounds, she had used some gauze "boy shorts." I knew as soon as I got out of the hospital, I needed to find some soft, all cotton boy shorts. I strongly suggest them.

sissy310 said:

Question
I'm starting week 4 of radiation treatment tomorrow. Right now I have a lot of itching (probably the skin drying out?) and a slight slight burning but nothing more. Does this intense burning just start one day or does it gradually build? I'm wearing boxer shorts to bed now but find that it is somewhat uncomfortable as they do bunch up...maybe I will try the towel only...the part I guess that scares me the most is the burning. My rad doc said she has morphine cream...has anyone heard of that? I also have pain pills to take just in case (which i'm beginning to think is a given to take from hearing everyone's stories).

Chris, did you have all around radiation or the IMRT I think it is called. Just curious. Be well, Marilyne

Marilyne
Hi Marilyne,

I remember the intense burning and I found that my daily bath was very soothing, I also would go get zapped come home home and apply bag balm (used on cow utters), and also given to me by my radiologist, and take a pain pill. I tried not taking the pain meds until I absolutley had to, and at about the start of the 3rd rad week I absolutley had too. These 3 things really helped me. That morphine cream sounds good. I think I would have liked to have tried something like that. I had some itching, but it lasted a couple days and that was it. My cancer was at the anal verge, which is right at the exit point. Now if my itch was higher up, I think that would have been worse. I know other posters have experienced the severe itchiness, and I can't remember what they did, but maybe they will post some info for you. Have a good Monday. Lori

Chris3 said:

Radiation Burns
I certainly don't want to scare you because everyone's situation is different. I thought I was doing pretty well through Week 4. It was during Week 5 that the wheels seemed to fall off the bus. I bought boxer shorts and started wearing sweat pants because regular pants rubbed too much. Skirts or dresses would have worked, but I didn't have those in my wardrobe. My skin just got really red and raw, especially where the elastic on my panties had rubbed. (I suggest finding "boy short" underwear.) My rad onc wrote me a script for Desoximetasone Cream (corticosteroid) - maybe if I had had the script earlier it would have helped.

Note - I will warn you against one ointment: I was given a sample of Calmoseptine by the rad onc nurse. It felt really good because it is cooling (due to Menthol) but it was next to impossible to get off (due to Zinc Oxide) before my next radiation session. My skin was already raw and I had to rub to get the ointment off so I believe that made matters much worse. So make sure you avoid anything that is moisture barrier ointment because they are the dickens to remove and you don't want anything remaining for your rad treatments.

By the end of Week 5 I was miserable. As disgusting as this sounds, I could only pee while kneeling in a bathtub full of water. They increased my pain meds twice over the weekend but nothing seemed to help. Monday of Week 6 my rad onc decided we needed to stop the treatments in hopes that a break would help. But, late Tuesday evening I started bleeding from the vulva area, so off to the emergency room we went. They said I had Stage 3 Radiation Burns (out of 4). The put me on Dilaudid for the pain. I was in the hospital for 12 days getting wound treatment - they used an oinment called Biafine covered with vaseline gauze. Plus, I couldn't control my bowels or my bladder because they were inflammed and irritated from the radiation. I was a hot mess.

As far as the type of radiation, I'm not sure what kind I had (how can I not know that???) - I will need to ask. I had a pelvic lymph node involved, so I may have had full pelvic radiation.

The good news from all of this is that all that radiation that caused all that trouble blasted the crap out of my anal tumor and shrunk the lymph node tumor down from the size of a lime to residual scar tissue. So, as of my first post-treatment scans, the cancer is gone.

Sorry my story is so scary. I would just do anything possible to avoid irritation in that area. For daytime, I would suggest finding some soft cotton womens "boy shorts" since they do not have any elastic around the legs - I wish I had gotten some from the beginning of my treatment. I slept in a TShirt with no panties to give my skin a break, and slept on a towel or a quilted pad to protect the bed from any leakage.

I wish you the best for your treatments and for a successful outcome.

Chris

now I'm scared
I thought I was doing good with just the misery of going to the bathroom very bloody and feels like pooping glass. I have had 18 treatments and have 10 to go. I thought maybe I would get to skip the burn part I guess was just kidding myself.Sorry but this sucks..Laura

462lt said:

now I'm scared
I thought I was doing good with just the misery of going to the bathroom very bloody and feels like pooping glass. I have had 18 treatments and have 10 to go. I thought maybe I would get to skip the burn part I guess was just kidding myself.Sorry but this sucks..Laura

Hi Laura!
The pooping glass feeling--oh, how I remember that! I'm sorry you are having to experience all of this. What helped me get through it was just constantly reminding myself that it was not forever, but actually only a short snippet of time in my life. However, I do admit that time passes slower when in pain. I know some people have gotten prescriptions for lidocaine cream which can be applied to the anal area prior to a BM. I don't know if this will ease the pain for you, but it might be worth a try. I wish you the very best and will keep you in my thoughts and prayers. You can get to that finish line!

462lt said:

now I'm scared
I thought I was doing good with just the misery of going to the bathroom very bloody and feels like pooping glass. I have had 18 treatments and have 10 to go. I thought maybe I would get to skip the burn part I guess was just kidding myself.Sorry but this sucks..Laura

18 treatments sound like a
18 treatments sound like a lot before all this happened no? Or is that pretty common to start feeling this around week four or so? Did you have all around radiation treatment or IMRT? My rad onc said that the all around is not as intense as IMRT but I'm thinking wait, more of my body is being zapped, wouldn't that expose more to the radiation damage? Oh boy. I have a feeling Laura I'm not too far behind you with pooping glass. Great. I thought the bleeding hemi's and Harvey the tumor were bad enough. I guess the upside to this is we might be in pain for awhile but think about the tumor and what he is going through...that should give us some consolation. It does me anyway. I hope that this goes quickly for you, Laura and things will get better. Marilyne

mp327 said:

Laura and Marilyne
As for the radiation, IMRT vs. another kind, the IMRT, if given like mine was, will cover the entire pelvic area to start. Then at some point, the rad onc will shrink the treatment field, perhaps a couple of times, with the last zaps being directed only at the tumor. This way of delivering the treatment insures that any rogue cells that may have migrated away from the tumor will be zapped. My treatment field was reduced twice during my 30 total treatments. The tumor was getting zapped the whole time and received the most radiation, which makes sense since that's the source of the cancer. As for how another type of radiation treatment differs from this, I'm not sure. I hope this makes sense.

Nothing to add to
all the good advice given. Heed all the valuable suggestions, water bottles, boy shorts or VERY big granny panties, soaking baths, creams (but remove before radiation), stay hydrated to minimize the effects on your kidneys and bladder, stool softeners (I had relentless diarhea so I didn't need them), Benedryl will help you sleep (ask your Onc. first) and it really helped me with itching.

In my opinion the most important thing is to remind yourself that you can and will get through this. Once treatment is complete and the healing starts it will be amazingly swift.

Prayers for your strength and determination.

Joanne

pjjenkins said:

Radiation- going through it
One of the big differences I see in treatment in reading these posts is the way doctors handle pain alleviation. I actually started out before diagnosis with pain not fully controlled by over the counter meds though 5 mg. of oxycodone handled it easily.

My radiation oncologist at the outset told us (my husband and me) that pain control was a major factor in getting through this treatment. Both my oncologists encouraged me to use what I needed as I felt I needed it. I don't remember how fast I increased the dosage nor how high it actually got. I had both oxycodone and oxycontin in varying strengths. I know at the peak of things, I really needed quite a bit. But since about 5 weeks post treatment, I have not needed any prescription painkillers.

Laura, I think my doctors were right. Don't hold back on the painkillers.

My thoughts and prayers go out to all who are currently undergoing treatment!

Priscilla

Amen to painkillers
My doctors all said it was important to "get ahead of the pain" - don't wait until you are already hurting to take the meds because it is harding to get the pain under control.

Laura and Marilyne, we're all pulling for you!

Chris

Chris3 said:

Amen to painkillers
My doctors all said it was important to "get ahead of the pain" - don't wait until you are already hurting to take the meds because it is harding to get the pain under control.

Laura and Marilyne, we're all pulling for you!

Chris

But when do you know when
But when do you know when that point is? If I have to say I have pain it is so minimal right now (itching is worse) -- a few weeks ago I can say I had pain and took the pain pills and they helped a lot. Then I did not have pain anymore. that's when I had the fevers too. Both stopped at the same time. Perhaps I have not hit that point yet or maybe I should take a pain pill anyway and see if that makes a difference.

Laura, we will get through this - one step at a time. Thanks everyone for your thoughts and cheering on and knowledge. Be well, Mariyne

sissy310 said:

Question
I'm starting week 4 of radiation treatment tomorrow. Right now I have a lot of itching (probably the skin drying out?) and a slight slight burning but nothing more. Does this intense burning just start one day or does it gradually build? I'm wearing boxer shorts to bed now but find that it is somewhat uncomfortable as they do bunch up...maybe I will try the towel only...the part I guess that scares me the most is the burning. My rad doc said she has morphine cream...has anyone heard of that? I also have pain pills to take just in case (which i'm beginning to think is a given to take from hearing everyone's stories).

Chris, did you have all around radiation or the IMRT I think it is called. Just curious. Be well, Marilyne

BENADRYL (Diphenhydramine HCI, 25 mg/antihistamine)
You may not believe this, but when I had extreme itching...I mean itching so bad that I cried because it felt like I had ants crawling under my skin throughout my pelvic area. I felt like I was climbing the walls because I had never had this type of intense burning and itching before. I would be laying on the bed, watching TV, and then all of a sudden I would jump a mile out of bed and grab what I could of my pelvic area and I went into panic mode because the itching was on the inside, not the out. I went through this madness for a couple of weeks! Things had gotten so bad that the radiologist felt that the radiation may have damaged my nerves and she was crazy enough to prescribe anticonvulsant medication!! Luckily, once I picked up the medication and read the warnings and side effects, I had my husband immediately return the medication to the pharmacist who gave me a refund without question. My mother went to the Pharmacy at Target and spoke to the Pharmacist who suggested Benadryl. Guess what? No sooner than I swallowed the two pills, the itching stopped and since Benadryl causes drowsiness, I slept like a baby for the first time since my treatment started! It sounds simple, but sometimes it's the simple things that work for the most difficult problems. Please try it and let me know if it worked for you too.