Radiation burns....agony

Missy3

I finished my chemo and still have seven rounds of radiation.    I am in so much agony please tell me what worked for you at this point.   I take Norco three times a day And use aquaphor and aloe.  Of course going clean and dry to radiation.    I just want to roll up in a ball and sleep but it burns too bad. I won't even tell you the agony when I go to the bathroom.    How did you make it and how much worse do I need to prepare for ?

judyv3

Missy3

The last week is rough.  But you've made it this far, you can finish.  You are stronger than you think.  For many (including myself a couple of times), going to the bathroom in the sitz bath was the only way.  I don't know if you lean toward constipation or diarrhea.  I lean toward constipation, so I took Miralax and 6 stool softeners per day, kept everything soft.  I coated with Aquaphor (and still do - 8 months after finishing treatment.  Are they examining your skin?  My radiation oncologist really didn't and the last week, it was one of the techs that told me things were bad.  I surely wasn't looking, but I could feel it.  I wore baggy sweat pants and no underwear.  I just couldn't at the end.  Hydrate, hydrate, hydrate.  Eat protein (eggs, greek yogurt were my staples).  

People will chime in here with great wisdom.  Use what works for you and know that there are many of us pulling for you.

I will keep you in my prayers.

Judy

lp1964

Dear Friend,

Even though I haven't had the complications you do, but I tell you what I know. Do everything you can to make your stool soft: pruns, stool softeners, lot of liquids. As far as local treatment

I used Bio-oil from Costco or target. Instead of toilet paper use baby wipes and go really gentle. other people will have more tips.

I wish you the strength to get through this and a speedy recovery.

Laz

pializ

Missy

Firstly, speak to them about your pain relief. I am not familiar with what you are taking, but get them to review it. I found that using a portable bidet and salt water was the most help for me with toilet needs. Use a hairdryer on a low setting to dry yourself. Do not use toilet tissue, but soft cloths dipped in water.  Go commando whenever possible. Drink plenty. Use destraction......crossword (I used candy crush lol). You're on the countdown now. Hold on to that. You'll soon be at the finish line.

Kind regards

Liz

sandysp

You are almost there

These next few weeks are hard but you can get through it. 

Besides keeping doped up, a small fan helped me. 

No matter what, make sure you stay with the program the doctors give you and rest, rest, rest.

All the best,

Sandy

mp327

Missy

I found my greatest relief by lying in a tub of lukewarm water several times a day.  My BM's were excruciatingly painful and so was urination towards the end, so I can feel your pain.   I go along with the other suggestions--call and get a stronger pain med.  Also, I have heard other say that Radiaplex gel is good stuff.  I believe it's available by prescription only.  Here's their website.

http://www.mpmmedicalinc.com/productdetails.aspx?pin=c.OC.3.p.7

Hang in there.  We all know it's really rough right now, but you can do this.

Martha

Ouch_Ouch_Ouch

Triple Anesthetic Cream?

I hope you got your pain meds addressed and are now finding relief.

I was in pain last night from a bowel movement and finally remembered the "Triple Anesthetic Cream" that the colo-rectal surgeon prescribed back in March for my supposed thrombosed hemorrhoid and fissue [*], but it hurt and burned my tissues too much to use back then. I used it last night with relief (as well as taking a Percoset).

This is only available through a compounding pharmacy by prescription, traditionally made up of 20% benzocaine, 6% lidocaine, and 4% tetracaine in various bases. Like every other med, it has contraindications. In this case, they include: heart arrythmias, liver disease, allergy to an ingredient (I read that some pharmacies use a PABA base, for example). Body size and the amount absorbed can influence reactions. Toxicity is possible if too much is used too often, on tissues that absorb more readily (like mucous membranes of the rectum or broken skin). If you get a prescription for TAC, ask the pharmacy all about it before you decide to fill it.

This blog is by a retired plastic surgeon and, as odd as it seems, provides the best summary of information for this product: "Review of Topical Anesthetic Creams", Sutured for a Living - http://rlbatesmd.blogspot.com/2008/07/review-of-topical-anesthetic-creams.html

 

[*] To be fair to the colo-rectal doctor, due to pain, the misdiagnosis was made because I was unable to cooperate with the digital rectal exam (DRE), let alone an anoscoping. And although the incidence of anal cancer is increasing 20%-ish a year in the USA and UK, it's still rare. Therefore, the odds that I had it were very low. As soon as he was able to get a look in the OR, the true problem was readily discovered. He immediately took a frozen section to pathology personally so that I had the (alarming) diagnosis when I awoke in recovery.

GoodDog2

Agony

Domeboros soaks helped me better than any other topical. I also had to take a painkiller to sleep a couple of hours at night. I don't like taking meds.  Although radiation was from the back most of my damage seemed to be in front. Peeling weeping groin and genital pain. I also had mucusitis at the same time which was incredibly painful.

Agony is the right description.

On the bright side, as soon as my treatment was over, each day it eased off. I think it was a little over a week when that particular type of pain ceased and my sores healed. It is true what they say about unbearable  pain. As soon as it is gone it's hard to even remember how bad it was.

You are near the end. It will get better.!

qv62

Missy3

Oh dear I feel so bad for you, I remember those days quite vividly since my treatment ended at the end of June it's all too fresh in my head. Everyone here has given you such great advice and you need to try it all till you find what works for you. I would scream into a towel while having a bm to muffle the sound of the screams. I took 45 mg of oxycodone every 4 hours and 10 mg of oxymorphone (opana) every 12 hours, stool softeners, lots of waters I was nearly drinking 3 liters a day. Warm baths, one day I was in the tub 3 hours, Silverdene, fresh aloe (there is a video on you-tube a friend did it for me) The gel packs that you keep in the fridge I got from the radiologist was very soothing, mens knit boxers when going out and commando whenever possible wearing loose skirts and sundresses. Peri bottle was a must and the CVS brand disposable cloth wipes, and Tucks were also helpful. Mostly used the handheld shower and patted dry with white washcloths which I bought specifically for treatment using the wipes and Tucks while out. Sitz baths were a staple as well as Aquaphor. If you believe in the power of prayer ask your friends and family to send those prayers your way, I just said a special one for you, St Peregrine is the patron saint for cancer. Hope you find some of this helpful and start to get some relief soon.

Ouch_Ouch_Ouch

Empathy, empathy, empathy...

I agree 100% with pializ - you are undermedicated. Call NOW to get an adjustment made. I know it's Friday evening, but there will be an answering service and an on-call doctor. Insist that they up your dose or change the med!!! Cry if you must to get your point across.

Also, consider taking 4-7 days off from radiation to heal some and thereby reduce the pain. It will not effect the outcome as what matters is the total dose of radiation, not how fast the doses are taken. At this point, it's not a race. Your rad-onc will confirm this. It sounds so bad that your rad. oncologist probably won't let you continue anyway until you heal some. That's why they do all the checks, to make sure that your tissues can handle it. My red-onc had me on Annusol suppositores 4 x day and Annusol cream. He wanted to put me on Silvadene in the worst way, but I'm supposedly allergic to sulfa.

When I was in the hospital, the nurses gave me "Shield Barrier Cream Cloths", by Sage Products, to wipe with. They are extremely soft and squishy, like rectangular clouds. They clean you, coat your skin with a barrier, and supposedly aid in healing. They can be microwaved for a few seconds if you wish, but I preferred them to be cool. 8-1/2" x 5-1/2" They are available retail at shopsageproducts.com , other online sites https://www.google.com/?gws_rd=ssl#q=comfort+shield+barrier+cream+cloths , and maybe other medical supply stores near you. I don't know if there are similar products.

[At this same point, I was in the hospital for 9 days with a plummeting WBC (to 0.2) and all the other values as well. I screamed out loud with every BM and tightly clutched all the nearby objects in the bathroom. When I couldn't take it any longer, I insisted on greater pain relief and was put on morphine until the worst subsided. My problem was enteritis with painful watery stools. I also insisted that the nurses give me the pain meds BEFORE I had the BMs, not after.]

All the best

 

ADDENDUM 9/27: Those "Shield Barrier Cream Cloths" are a generous size. If you wish to use 1/2 a sheet, as I do, they are too heavy to tear. You'll have to use scissors.

Ouch_Ouch_Ouch

Ouch_Ouch_Ouch said:

Empathy, empathy, empathy...

I agree 100% with pializ - you are undermedicated. Call NOW to get an adjustment made. I know it's Friday evening, but there will be an answering service and an on-call doctor. Insist that they up your dose or change the med!!! Cry if you must to get your point across.

Also, consider taking 4-7 days off from radiation to heal some and thereby reduce the pain. It will not effect the outcome as what matters is the total dose of radiation, not how fast the doses are taken. At this point, it's not a race. Your rad-onc will confirm this. It sounds so bad that your rad. oncologist probably won't let you continue anyway until you heal some. That's why they do all the checks, to make sure that your tissues can handle it. My red-onc had me on Annusol suppositores 4 x day and Annusol cream. He wanted to put me on Silvadene in the worst way, but I'm supposedly allergic to sulfa.

When I was in the hospital, the nurses gave me "Shield Barrier Cream Cloths", by Sage Products, to wipe with. They are extremely soft and squishy, like rectangular clouds. They clean you, coat your skin with a barrier, and supposedly aid in healing. They can be microwaved for a few seconds if you wish, but I preferred them to be cool. 8-1/2" x 5-1/2" They are available retail at shopsageproducts.com , other online sites https://www.google.com/?gws_rd=ssl#q=comfort+shield+barrier+cream+cloths , and maybe other medical supply stores near you. I don't know if there are similar products.

[At this same point, I was in the hospital for 9 days with a plummeting WBC (to 0.2) and all the other values as well. I screamed out loud with every BM and tightly clutched all the nearby objects in the bathroom. When I couldn't take it any longer, I insisted on greater pain relief and was put on morphine until the worst subsided. My problem was enteritis with painful watery stools. I also insisted that the nurses give me the pain meds BEFORE I had the BMs, not after.]

All the best

 

ADDENDUM 9/27: Those "Shield Barrier Cream Cloths" are a generous size. If you wish to use 1/2 a sheet, as I do, they are too heavy to tear. You'll have to use scissors.

New supply of Shield Barrier Cream Cloths received

I ran out of the supply I had squirreled away while at the hospital and ordered more online. They are even bigger: 8-1/2 x 8-1/2! They can be cut into 4 squares, each the size of a toilet paper square, but much thicker and very, very, very soft. I even cut one of those squares up into a Tuck-like size for extra soothing as I move about. They are expensive, but currently indispensible to me and my painful bumper. Ahhhh!

[If you try them, do not flush them down the toilet - too thick and sturdy.]

Ouch_Ouch_Ouch

How are you?

Missy3, I hope things are starting to improve.

Cookie911

Radiation burns

I can more than relate to you. According to my medical oncologist I had with worst third degree burns she has ever seen and yes going to the bathroom was pure torture and to add to my pain I had a severe UTI infection.  I had to stop my radiation for 2 1/2 weeks because of the burns.  They actually gave me cream for burn victims.  It was very rough for at least a little more than a month.  It will get better.  Hang in there.  

Missy3

Cookie911 said:

Radiation burns

I can more than relate to you. According to my medical oncologist I had with worst third degree burns she has ever seen and yes going to the bathroom was pure torture and to add to my pain I had a severe UTI infection.  I had to stop my radiation for 2 1/2 weeks because of the burns.  They actually gave me cream for burn victims.  It was very rough for at least a little more than a month.  It will get better.  Hang in there.  

Best advice on this thread!!!!!!!!

I want to thank everyone who responded to my agony and plea.    There is absolutely volumes of wonderful advice here.  I wrote down all of the things mentioned and kept in a note pad.  I utilized many of the tips you guys gave me.   They were life savers.!!!!!!!!

I would advise anyone else who is reading this and just beginning thier journey to earmark this page.   I promise you will find it valuable.!!!!!!!!!

Ouch_Ouch_Ouch

Missy3 said:

Best advice on this thread!!!!!!!!

I want to thank everyone who responded to my agony and plea.    There is absolutely volumes of wonderful advice here.  I wrote down all of the things mentioned and kept in a note pad.  I utilized many of the tips you guys gave me.   They were life savers.!!!!!!!!

I would advise anyone else who is reading this and just beginning thier journey to earmark this page.   I promise you will find it valuable.!!!!!!!!!

Hey, there!

You seem to be feeling better, judging by all the exclamation marks!!! I'm glad!!!