Pain from radiation burns - any recommendations?

mp327

Shannon D said:

I can only take Tylenol

I can only take Tylenol because I have a port in my chest .the pain between my legs is so bad sometimes. My lady parts are so chap an I can't use nothing. An I don't really have feeling down there.did this happen to you. What is your advice if any?

Shannon D

I'm sorry you are in such pain.  You might try Domeboro soaks, which are pads that can be soaked and laid upon your burned areas.  I also found soaking in a tub of warm water soothing.  Have you talked to your doctors about getting something stronger for your pain?  I wish you all the very best.

Martha

Cupcake053

Cream for radiation treatment

I have been using an After sun aloe and vitamin e cream which has helped to keep my skin from peeling and blistering during radiation treatments and also helped to manage dryness Healing my skin faster.   Since it has both aloe and vit e in the cream it helps to heal my skin after radiation treatments.  I'm very fair skin, and it has helped with keeping my skin soft And itch free.    I had a serious burn in the armpit area on one of my incisions in the fold and this cream helped heal it faster than any other cream or ointment.  I was not able to use other creams due to allergies so this cream is a godsend.  It's considered an after tanning cream, or after sun cream to help keep your tan but it has really managed to heal my skin faster than expected.  I purchased at Walmart and cvs, they even have a store brand with same ingredients.  Highly recommend to anyone going thru radiation trying to keep your skin from dryness and irritation.  I also used a cool pack on my skin daily to eliminate pain  and cool my skin after treatment which helped a lot.

Lorikat

lizdeli said:

Burns
I used Silverdane cream which helped a lot. One thing I do remember is how quickly the burns healed after I finished radiation. Everyone heals differently of course. I would say that two weeks after radiation I wasn't in pain from the burns. My skin was burnt and looked like charcol, but it really did start getting much much better.
Liz

Two or three weeks healing

Two or three weeks healing for me as well Liz.  (Hello!). Still love long dress and commando at home though!

marilynndrake

BBrat said:

I have heard of Dermoplast
I have heard of Dermoplast and will check it out - thanks!

dermoplast?

did you ever try dermoplast?

Ouch_Ouch_Ouch

Shannon D said:

I can only take Tylenol

I can only take Tylenol because I have a port in my chest .the pain between my legs is so bad sometimes. My lady parts are so chap an I can't use nothing. An I don't really have feeling down there.did this happen to you. What is your advice if any?

Tylenol?

I do not understand why you can have only Tylenol for pain. That's crazy talk! I think you are being way undermedicated. When the radiation damage was at it's worse, I went from Fentanyl 20 mcg patches to 50 mcg patches and from Oxycodone for break-through pain to morphine (don't remember the dose). My mediport wasn't removed for another 6 months afterwards. Maybe you can have your radiation oncologist speak to your medical oncologist about treating you adequately?

Ooops! I only just noted the date of your post. Sorry. I hope you got the pain relief you deserved.

bridgeharg

Pain and severe burns

My dear sister just completed 28 radiation treatments and chemotherapy for anal cancer, Stage 2.   She is burned horrible in her vaginal, anal area and buttocks.  She's using silvadene liberally, frequent baths and showers.   She's on fentanyl patches and OxyContin for pain.   She has awful bleeding blisters in her Vagina.   The pain when she voids and defacates in unbearable.   Any advice would be veru much appreciated.    Thanks

eihtak

bridgeharg said:

Pain and severe burns

My dear sister just completed 28 radiation treatments and chemotherapy for anal cancer, Stage 2.   She is burned horrible in her vaginal, anal area and buttocks.  She's using silvadene liberally, frequent baths and showers.   She's on fentanyl patches and OxyContin for pain.   She has awful bleeding blisters in her Vagina.   The pain when she voids and defacates in unbearable.   Any advice would be veru much appreciated.    Thanks

bridgeharg.....

What a kind sister you are to seek out help for your sister.....as you have probably read by now (if not just browse through some old posts) the unbearable pain is unfortunately common for almost all. There are several ointments out there and some prefer one over another. I was initially treated 6 years ago and mostly used Aquaphor cream or Dermoplast spray, both available over the counter. It is important no matter what she uses to wash off before each radiation treatment or it may increase burning. I also believe that some of us just plain burn more than others. I too had blisters and actual darkened cracked dry peeling skin by the end. Know that healing comes fairly soon once treatment ends. 

I too was taking some strong pain meds at the time and was sure to stay on a regular schedule in an effort to stay ahead of the pain rather than to try and relieve it once it had reached an all time high.....I don't know if I ever actually relieved it all, but it did at least take the edge off. Can your sisters dose be increased?

It seemed that I spent a lot of time in the shower (using a hand held shower head set on a soft spray, and then often just wore a loose long pj top or robe and left my bottom naked when not going anywhere (probably doesn't work in all situations though) Always I used a spray bottle to squirt on myself while going to the bathroom as it seemed to help in the moment.

I wish I had some magic answer for you to pass on, but it is a tough road. If it helps, know that we have all been there or are there now too and your sister will make it through this also. I will keep you both in my thoughts and prayers as she continues moving forward.

katheryn

mp327

bridgeharg

I can relate to your sister's situation, as I was horribly burned and in such misery.  Going to the bathroom was, to use your word, unbearable.  Unfortunately, I did not have the benefit of this site at that time and really didn't know what to do, so I just suffered.  However, I have learned a lot from others here, which helps when someone comes here asking for advice.

One thing your sister might want to try is the Aquaphor vaginally.  My radiation oncologist told me it was safe to apply it to the inside of my vagina.  As for the anal canal, many find that Lidocaine applied just prior to a bowel movement can give some relief.

Some people have mentioned buying something that can be put on top of the toilet seat and filled with water, which you sit down in when urinating or having a bowel movement.  I do not know what something like this is called though.  I'm sorry.

Lastly, ask her doctors if her pain medication can be increased or changed to something more effective.  As katheryn said, keeping on schedule with pain medication is very important to get the most relief.  Your sister may even need something for breakthrough pain between doses. 

Bless you for being your sister's support during this time.  I've been the one in pain, but not the one seeing a loved one go through the pain.  I can only imagine how difficult it must be.  I wish the best for you both and hope that once she completes her treatment, she will have a quick recovery.

Martha

 

jajmom

6 weeks radiation

I've just finished 6 wks radiation for anal cancer. What a blessing to read other's stories and know there really is someone out there who truly understands the pain experienced. As some other's have noted, just applying cream (any) became a nightmare. I bawled for days. Am interested in trying the dermaplast, has anyone had a negative experience? Already using soaks, silvadene, aquaphor, anal steroids and zeroform. Most of my discomfort is now in my labial/vaginal area. I've been taking tramadol but doc says I need something stronger. Prescribed oxycodone....haven't taken it because it makes me sick. Last thing I want is to be throwing up in addition to everything else. Any suggestions for tolerating oxycodone would be appreciated. Thank you all so much for taking the time to post your experiences.

mp327

jajmom

I'm glad you've found this site--lots of good information and support.  The pain, as you know, is through the roof and I'm sorry you've had to experience that.  I did too.  I am probably not much help as far as what will help you tolerate the oxycodone.  I was given the same, but took very little of it.  I'm happy to hear you are done with treatment.  Healing will take a little time, but it will happen!  I hope someone else can give you some good advice about how to make the oxy more tolerable.  I wish you the best in your recovery!

Martha

Mollymaude

Oxycodone

try not to take it on an empty stomach and if you have anti-naseau meds leftover from chemo you could try to take them at the same time as the oxy. I took pain meds for a couple months after treatment while things were healing up. I never used dermoplast. Your body will heal pretty quickly but at the time it's happening to you it can't be fast enough! There are a couple other current threads on radiation burns and skin care that might help you. Hang in there!

Kacsalley

Burning in vaginal and rectal areas from vulva cancer treatments

I am burnt so bad I can barely walk. Sleeping is not an option. Did 25 of 28 treatments as I have to drive myself to treatment and not allowed pain pills while driving. Two days after 25th treatment and burns still getting worse. So glad I stopped as would be even worse the rad oncologist said. I am praying it got anything that might have been left after my surgery, lymph nodes were clear! Was told this was preventative. 

Hoping I did right by stopping. Did anyone else stop because of oozing, blisters popped? I just got pain med after the 24th treatment. Did not seem to do anything, only 3 hours sleep a night. Can not use silver sulfadiazine because of allergy. Aquaphor quit helping after 20th treatment. Sitz baths or any water on the raw skin makes me scream. Learned to pee with gauze pads held against urethra while over sitz bath. Most burn creams not for use in genital area! Use gauze pads soaked in cool water while lounging in chair. 

Questioning my stopping after hearing how others finished theirs. BUT so glad not to be getting even worse. Doc said 25 was full dosage so should be okay. 

Did anyone else stop before? 

Karen

mp327

Kacsalley said:

Burning in vaginal and rectal areas from vulva cancer treatments

I am burnt so bad I can barely walk. Sleeping is not an option. Did 25 of 28 treatments as I have to drive myself to treatment and not allowed pain pills while driving. Two days after 25th treatment and burns still getting worse. So glad I stopped as would be even worse the rad oncologist said. I am praying it got anything that might have been left after my surgery, lymph nodes were clear! Was told this was preventative. 

Hoping I did right by stopping. Did anyone else stop because of oozing, blisters popped? I just got pain med after the 24th treatment. Did not seem to do anything, only 3 hours sleep a night. Can not use silver sulfadiazine because of allergy. Aquaphor quit helping after 20th treatment. Sitz baths or any water on the raw skin makes me scream. Learned to pee with gauze pads held against urethra while over sitz bath. Most burn creams not for use in genital area! Use gauze pads soaked in cool water while lounging in chair. 

Questioning my stopping after hearing how others finished theirs. BUT so glad not to be getting even worse. Doc said 25 was full dosage so should be okay. 

Did anyone else stop before? 

Karen

Kacsalley

I had a very rough time during the last couple of weeks of treatment.  While I wanted to quit, I did not, thanks to a well-timed phone call from a dear friend who encouraged me to keep going.  I know the end of treatment is horrific and I feel your pain.  However, it would be a good idea to talk to your rad onc again and see if you can get in those last few treatments after you take a short break.  If your treatment was done like mine, the last few treatments are the ones that target the tumor only--it's called coning down and is when the treatment field is reduced.  How long has it been since you stopped treatment?

jajmom

Kacsalley said:

Burning in vaginal and rectal areas from vulva cancer treatments

I am burnt so bad I can barely walk. Sleeping is not an option. Did 25 of 28 treatments as I have to drive myself to treatment and not allowed pain pills while driving. Two days after 25th treatment and burns still getting worse. So glad I stopped as would be even worse the rad oncologist said. I am praying it got anything that might have been left after my surgery, lymph nodes were clear! Was told this was preventative. 

Hoping I did right by stopping. Did anyone else stop because of oozing, blisters popped? I just got pain med after the 24th treatment. Did not seem to do anything, only 3 hours sleep a night. Can not use silver sulfadiazine because of allergy. Aquaphor quit helping after 20th treatment. Sitz baths or any water on the raw skin makes me scream. Learned to pee with gauze pads held against urethra while over sitz bath. Most burn creams not for use in genital area! Use gauze pads soaked in cool water while lounging in chair. 

Questioning my stopping after hearing how others finished theirs. BUT so glad not to be getting even worse. Doc said 25 was full dosage so should be okay. 

Did anyone else stop before? 

Karen

Kacsalley

Hi Karen,

I am sorry to hear how difficult your treatment had become. I can sympathize with you in that. I bawled like a baby when the Rad Dr. rescheduled a treatment for a cancelled appt (dept was closed due to blizzard) at the very end of my 6 weeks! At that point I thought I was done....I dreaded that one appointment more than anything. I did want to stop early but was convinced by Onc. and Rad drs. to continue as I was already not getting a vital part of my chemo. Due to a bad reaction to 5FU, I was unable to take my second round. I did have lymph node involvement both in the mesorectal and extra-mesorectal areas. I did not have surgery so radiation's job was to eliminate the tumor and reach the effected lymph nodes. In your situation I very well may have made the same decision.

I went through my treatments in the beginning of this year (2017) and I remember standing, sobbing uncontrollably, as I tried to apply some suggested remedy for my burns. It was absolutely awful! What I did find to help was domboro soaks and xeroform dressings (which the nurse in radiology kindly provided me with). I found that using a hair dryer on "cool" setting was the best way to completely dry that area. I left my bottom completely uncovered at night and slept in a recliner that allowed me to keep my legs apart and air circulating. After treatments were through, I found Triple Paste ointment coated the best. I continue to use it as there are frequent episodes of open skin as the treated area is very fragile. I also still use the aquaphor in and on the anal area as too frequent BM's cause that area to be very sore sometimes.

I hope you are soon mending,

Chris

 

Wisteria83

jajmom said:

6 weeks radiation

I've just finished 6 wks radiation for anal cancer. What a blessing to read other's stories and know there really is someone out there who truly understands the pain experienced. As some other's have noted, just applying cream (any) became a nightmare. I bawled for days. Am interested in trying the dermaplast, has anyone had a negative experience? Already using soaks, silvadene, aquaphor, anal steroids and zeroform. Most of my discomfort is now in my labial/vaginal area. I've been taking tramadol but doc says I need something stronger. Prescribed oxycodone....haven't taken it because it makes me sick. Last thing I want is to be throwing up in addition to everything else. Any suggestions for tolerating oxycodone would be appreciated. Thank you all so much for taking the time to post your experiences.

Oxycodone

Listen to your doctor about the pain meds.  Fill your prescription and use it as needed/prescribed.  There really is no need to suffer if you can avoid it.  Molly Maude has given you great advice, I'm sorry that I don't have any to offer as far as tolerating the nausea from it goes.

When you take the Oxycodone, I would add that you should drink lots of water to stay hydrated too.  Narcotics can be really constipating, and you don't need that on top of everything else.  Water and juices will help as far as that goes, as well as avoiding any foods that are constipating...peanut butter, cheese, etc. I've been taking narcotics for years and never got constipated until my dr. increased them so much during treatment and after.  I had such a tolerance to them, that he needed a big increase so that it would actually make a difference and help my pain.  Prune Juice mixed with apple juice in equal parts and warmed in the microwave is a great drink to have if you get constipated, (I guess having it warm makes a difference) and it doesn't taste half bad.  A nurse in the hospital just this morning told me about that "cure," and I drank it as soon as I came home today.  I'm waiting for the action to take place, and will update the results.

Best of luck with this problem,

Wis

Mollymaude

Karen

So you had radiation after surgery for cancer of vulva? I just wanted to be sure autocorrect didn't change anal to vulva. If you really had vulvar cancer and radiation was after surgery as precaution then I would go with what your doctors told you about it being ok to stop after the 25 treatments. The cancer might be different but the burns are the same and I'm sorry you are so miserable. At the stage you are at I could not have tolerated it without heavy narcotics. Not sure how you made it to 25 treatments without pain meds!! The radiation continues to work awhile after you stop so that's why you don't start healing as soon as you stop radiation. I hope now that you are not having to drive you take pain meds. I found not wearing anything on my bottom half, fans blowing on my burned parts and domeboro soaks gave some relief. You can get thru this, you will start healing soon and the open raw sores will be a thing of the past.