Radiation burns

Kim Gaia

I am starting treatment in 9 days on July 16th. What part of my outer skin will burn? Just my butt cheeks? Or inside of thighs too? What about front of abdomen in pelvic area? I don't quite understand where the machine will be, but I know I will be lying on my back with my legs slightly separated and my ankles positioned in a couple of moulded blocks tohold the position.

Has anyone use Miaderm cream/lotion for radiation relief? It is designed rad-oncs for that purpose. Supposed to be very effective but quite expensive. Am wondering if 2 tubes would be sufficient for this. That's why I am wondering how big of a skin area will be affected and will burn.

Thanks all, and please wish me luck and strength!

kim

ACinNC

Radiation burns

Kim,

I did use Miaderm. I alternated it with aloe and aquaphor and used just one tube.  This was  until week 4 when the burns got to the point of needing silvadene. I didn't like how silvadene made the burns feel.  It seems like it made the burning pain worse. I think I was allergic to it.  So I ended up using aquaphor and aloe the final 2 weeks. I stopped using Miaderm near the end because its smell made my nausea worse.

There is probably some degree of variability as to skin affected. But for sure  the anal area will be the worst.  My inner thighs were moderately affected but my labia were almost as bad as the anal area.  Since my cancer involved the  vagina as well as anus  the field of radiation was wider than those whose vagina is not involved. You will get a sense of how much and how often to use Miaderm or other product as your discomfort increases. I got pink and tender after 2 sessions but some don't  until about a week.  So I started using product right away.  The recommendation is to clean off product before your sessions and there is some variability as to how far in advance according to different facilities. But about 2 hours before is common.

I hope you have a good support system. Having friends and family to help out when you feel crummy makes a huge difference.  My husband did all the shopping and he and a neighbor took turns driving me to treatments which were a half hour away. I couldn't drive myself.

I do wish you strength and the resolve to get through this. 

 

Nidus

ACinNC said:

Radiation burns

Kim,

I did use Miaderm. I alternated it with aloe and aquaphor and used just one tube.  This was  until week 4 when the burns got to the point of needing silvadene. I didn't like how silvadene made the burns feel.  It seems like it made the burning pain worse. I think I was allergic to it.  So I ended up using aquaphor and aloe the final 2 weeks. I stopped using Miaderm near the end because its smell made my nausea worse.

There is probably some degree of variability as to skin affected. But for sure  the anal area will be the worst.  My inner thighs were moderately affected but my labia were almost as bad as the anal area.  Since my cancer involved the  vagina as well as anus  the field of radiation was wider than those whose vagina is not involved. You will get a sense of how much and how often to use Miaderm or other product as your discomfort increases. I got pink and tender after 2 sessions but some don't  until about a week.  So I started using product right away.  The recommendation is to clean off product before your sessions and there is some variability as to how far in advance according to different facilities. But about 2 hours before is common.

I hope you have a good support system. Having friends and family to help out when you feel crummy makes a huge difference.  My husband did all the shopping and he and a neighbor took turns driving me to treatments which were a half hour away. I couldn't drive myself.

I do wish you strength and the resolve to get through this. 

 

Aquaphor and aleve

I have two more weeks of radiation, also covering a wide area (I have stage 3a). So far soreness has been manageable. I really slather on the Aquafor several times a day after treatment, even though very greasy, and I take two Aleve tablets twice a day.  I expect everything will get much worse but at least so far this approach has worked.

Kim Gaia

ACinNC said:

Radiation burns

Kim,

I did use Miaderm. I alternated it with aloe and aquaphor and used just one tube.  This was  until week 4 when the burns got to the point of needing silvadene. I didn't like how silvadene made the burns feel.  It seems like it made the burning pain worse. I think I was allergic to it.  So I ended up using aquaphor and aloe the final 2 weeks. I stopped using Miaderm near the end because its smell made my nausea worse.

There is probably some degree of variability as to skin affected. But for sure  the anal area will be the worst.  My inner thighs were moderately affected but my labia were almost as bad as the anal area.  Since my cancer involved the  vagina as well as anus  the field of radiation was wider than those whose vagina is not involved. You will get a sense of how much and how often to use Miaderm or other product as your discomfort increases. I got pink and tender after 2 sessions but some don't  until about a week.  So I started using product right away.  The recommendation is to clean off product before your sessions and there is some variability as to how far in advance according to different facilities. But about 2 hours before is common.

I hope you have a good support system. Having friends and family to help out when you feel crummy makes a huge difference.  My husband did all the shopping and he and a neighbor took turns driving me to treatments which were a half hour away. I couldn't drive myself.

I do wish you strength and the resolve to get through this. 

 

Thanks for the info!

Thanks for the info! Unfortunately, I don't really have a good support system for this since I have to stay/live out of town for my 6 weeks of treatment. That is what is really stressing me out. All of this would be so much more tolerable if I could stay/live/eat in my own home where I do have a good support network of friends locally who can help me and run errands for me etc. But no radiaton machine in my town. Will be staying in a city 2 hours away. and without a vehicle since my butt is too sore for me to drive right now.

kim

feckcancer

my doctors recomended O/W

my doctors recomended O/W fatty emulsion cream on skin (not on genital/anal area). make sure it is washed off before radiation then slathered on after. on gentital/anal area (or pink bits as i like to call them) they recomended duoderm hydroactive gel, solosite wound gel & lignocaine 2% gel. there was another gel but it stung so i didn't use it. the gels can also be applied to burns or if the skin starts to break. also salt baths. i didn't use the gels until i needed them. but please check with your doctors first. for myself i found doing the above my burns weren't to bad. i only had one day off radiation because i was dyhydrated from pooing so much. my doctors also gave me a diet sheets recomending what foods i should and shouldn't eat & advised me about vaginal dilation. when you get to that bit trying doing it in shower with lubercating gel . every one is different but for me i burnt worst in the creases between my inner thighs and girl bits ,the entrance to my vagina, bum crack and anus. minor burns/skin colour changes to inner thighs and around anal area. butt cheeks fine. my nurse told me to put gels on pads (the ones the gave me looked liked sterlie period pads) and place in thigh creases and lie down and rest. told me to use the lidocaine gel before and after pooing. when the pooing got to bad they told me to take 2 imodine every morning before i got up then 1 after every runny poo. up to 8 a day i think. please check with your doctor. it's very impotant to keep area clean. for radiation you will lie on your back on a bed that moves you into position, everyone will leave then  the machine will move around you. it is not an enclosed machine. it will not take long and you will feel nothing. the side effects come on over time so you have time for prevention of burns and if certain bits start getting sore you can tell your doctor so he can tell you what to do to stop it getting worse. 

i feel for you being away from home for this, don't forget we are here . be brave , grit ya teeth and try not to think about it to much, hard to i know but that just leads to what ifs. concentrate on being in the moment and dealing with stuff when and IF it happens. this will be hard . you will have to be very tough but you can do it. sending love to you. 

 

 

 

Kim Gaia

feckcancer said:

my doctors recomended O/W

my doctors recomended O/W fatty emulsion cream on skin (not on genital/anal area). make sure it is washed off before radiation then slathered on after. on gentital/anal area (or pink bits as i like to call them) they recomended duoderm hydroactive gel, solosite wound gel & lignocaine 2% gel. there was another gel but it stung so i didn't use it. the gels can also be applied to burns or if the skin starts to break. also salt baths. i didn't use the gels until i needed them. but please check with your doctors first. for myself i found doing the above my burns weren't to bad. i only had one day off radiation because i was dyhydrated from pooing so much. my doctors also gave me a diet sheets recomending what foods i should and shouldn't eat & advised me about vaginal dilation. when you get to that bit trying doing it in shower with lubercating gel . every one is different but for me i burnt worst in the creases between my inner thighs and girl bits ,the entrance to my vagina, bum crack and anus. minor burns/skin colour changes to inner thighs and around anal area. butt cheeks fine. my nurse told me to put gels on pads (the ones the gave me looked liked sterlie period pads) and place in thigh creases and lie down and rest. told me to use the lidocaine gel before and after pooing. when the pooing got to bad they told me to take 2 imodine every morning before i got up then 1 after every runny poo. up to 8 a day i think. please check with your doctor. it's very impotant to keep area clean. for radiation you will lie on your back on a bed that moves you into position, everyone will leave then  the machine will move around you. it is not an enclosed machine. it will not take long and you will feel nothing. the side effects come on over time so you have time for prevention of burns and if certain bits start getting sore you can tell your doctor so he can tell you what to do to stop it getting worse. 

i feel for you being away from home for this, don't forget we are here . be brave , grit ya teeth and try not to think about it to much, hard to i know but that just leads to what ifs. concentrate on being in the moment and dealing with stuff when and IF it happens. this will be hard . you will have to be very tough but you can do it. sending love to you. 

 

 

 

Thank you for all this

Thank you for all this information and advice. I have not hear of O/W fatty emulsion cream. WIll look into that.

kim

Msmoxie

colloidal silver wound spray

Hi Kim,

     I pray that you won't burn badly.  I know colloidal silver is used on burn patients and maybe we have already discussed that... I wanted to mention it.  My niece sent me an entire care package of Sovereign Silver products:  gel, spray, liquid to take orally for my immune system and more...the good thing is they are relatively inexpensive.

I am still in the midst of my consults and pretty much we have all decided on a go for the colostomy... still not in a rush to go for surgery but looking for quality of life (as you know).

I send you positive energies, and prayers for healing.

I sure wish you did not have to be away from your home... did the American Cancer Society have any assistance for you on the lengthy stay away from home?  I know here they have what they call hope house and can even provide rides ... I would use it if I had to go to MSK in Manhattan. 

Thinking of you daily while you go through treatment.  

Moxie

csalek

radiation burns

I am 2 and a half years NED and remeber the radiation burns very well. Someone had said to get (and I got) a she pee..because the urine was so painful and the peri bottle was painful as well. This way it did not go over my worst burns. Good luck...you will get through it.

Msmoxie

checking on YOU Kim

Hello Kim,     I think of you every day and send you positive energies and strength to deal with all that you must be going through with the treatment and what goes with it.  I know you might not be up to being on the chats here so feel free to email me as well.

On my end ... the doctors at MSK had NOTHING... ABSOLUTELY NOTHING to suggest for me so I am totally on alternatives now with just using my doctors for palliative care needs.

Using my own beliefs and inner strength and the amazing show of Love that I receive from my family.  Don't really have friends ... just acquaintances and so family is my support and of course my partner in life is beside me and is with me through it all.

Sending you extra strength prayers and know that I care,      Moxie

Kim Gaia

Msmoxie said:

checking on YOU Kim

Hello Kim,     I think of you every day and send you positive energies and strength to deal with all that you must be going through with the treatment and what goes with it.  I know you might not be up to being on the chats here so feel free to email me as well.

On my end ... the doctors at MSK had NOTHING... ABSOLUTELY NOTHING to suggest for me so I am totally on alternatives now with just using my doctors for palliative care needs.

Using my own beliefs and inner strength and the amazing show of Love that I receive from my family.  Don't really have friends ... just acquaintances and so family is my support and of course my partner in life is beside me and is with me through it all.

Sending you extra strength prayers and know that I care,      Moxie

Thanks for your good thoughts

Thanks for your good thoughts Moxie! I am now half-way through the treatment (3 weeks in). The second half will be the truly hard part I'm sure. So far, diarrhea has been the main treatment-related problem. But tumor is noticeably shrinking. So that's something!

I am surprised and disappointed to hear that MSK had nothing to suggest for you. I was hoping they would be able to think outside the box. I do believe alternative treatments hold much promise for us. If I hadn't run out of time I would still be going down that path. But I couldn't poo (hardly). Got scared.

I also looked seriously at self-funded immunotherapy. Decided it was not my best option at this time. But may go that route in future if I need to (despite debt-load I would incur).

Sending healing thoughts your way too!

kim

 

 

Kim Gaia

csalek said:

radiation burns

I am 2 and a half years NED and remeber the radiation burns very well. Someone had said to get (and I got) a she pee..because the urine was so painful and the peri bottle was painful as well. This way it did not go over my worst burns. Good luck...you will get through it.

Thanks for this suggestion of

Thanks for this suggestion of the she-pee. I have seen it in a drugstore.

kim

tanda

Msmoxie

Sorry to hear that the drs at MSK were not able to offer you anything or any one of the new immunotherapies.  I don't know if MDAnderson would take a different approach or not..Dr Eng is running a number of trials, but I think (although I am not sure) those trails may be for recurrences NOT on the site, but in other organs.

In addition to your family, youi are most fortunate that you have doctors that will work with you and respect your wishes.

The thought of dealing with 2 cancers simultaneously is daunting.  Do I understand correctly that you had a lumpectomy for the breast cancer and "may" have a colostomy for the anal cancer...so basically surgery for the sites and no adjuvant (chemo or rads) to theoretically target any cells that may have escaped.

I hope your situation continues to remain stable and you can continue to have some QOL

Msmoxie

tanda said:

Msmoxie

Sorry to hear that the drs at MSK were not able to offer you anything or any one of the new immunotherapies.  I don't know if MDAnderson would take a different approach or not..Dr Eng is running a number of trials, but I think (although I am not sure) those trails may be for recurrences NOT on the site, but in other organs.

In addition to your family, youi are most fortunate that you have doctors that will work with you and respect your wishes.

The thought of dealing with 2 cancers simultaneously is daunting.  Do I understand correctly that you had a lumpectomy for the breast cancer and "may" have a colostomy for the anal cancer...so basically surgery for the sites and no adjuvant (chemo or rads) to theoretically target any cells that may have escaped.

I hope your situation continues to remain stable and you can continue to have some QOL

NOTHING offered by MSK

Yes, it is true.  It took six months to get approval for out of network so that I could even go to MSK and then another month for MSK to approve of my out of network insurance approval and then another month to get in with the Dr. at MSK for a consultation!  With what we now know is a very aggressive SCC anal cancer... and now also knowing that they were fudging the numbers to try to keep me a 3a in order to encourage an immediate start up of treatment with two strong chemos and high dose radiation... I am pretty thoroughly disgusted with the health care system... and MSK is supposed to be #2 in the country!!!  

Anyway, because within six months of my inital diagnosis ... my second PET/CT went from 6cm tumor and maybe a lymph node involved... to 13cm tumor and lymph node involvment in my groin and METS in both lobes of my liver with one being 2.5" alone (yes... 2.5 inches!)... So with that and the breast cancer (which is slow growing and not attached to my ribs and close to the surface would allow a lumpectomy) and calcifications in my thyroid and possibly two spots in my right lung... all of the doctors and hospitals have declared me "uncurable"... so I am truly and I must say HAPPILY... on my own.  My prognosis is poor and so I don't even want to spend ten weeks in recovery from surgery... I don't want radiation burns on top of everything else... I don't want chemo brain and problems with balance issues and falling, hearing loss, and on and on... so while I have escped the ravages of their current method of treatment for the cancers with radiation/chemo... I still have the option of having a colostomy if I want to spend ten weeks in recovery after the surgery.  

I spent more than an hour in the consult with the doctor from MSK and they basically want to start with someone that is only at stage 2... anything past that and if you have multiple cancers ... the trials are not going to accept you as a patient.  So ... they found my tumor late to begin with.  It is a very aggressive (likely small cell) SCC of the anus and rectum and so there you have it.

My medications are primarily lomotil and immodium.  I take iron because I do have intermittent bleeding that causes anemia.  I am on a variety of supplements and supportive therapies to try to save my liver.  When asked point blank the doctors all said it is my liver that is going to kill me so I am doing everything in my power to assist my liver.  

My family and my partner in life provide loving support like I have never experienced before.  I am open minded to other possibilities to shrink the tumors but don't have the money to pay for many of the alternative therapies that I read about and hear about.  Too many of them cost more than five thousand dollars and would require travel and related expenses that I just don't have.  So we are doing the best we can with what we have and can afford.

When you are strong and healthy for your entire life and asymptomatic ... you just don't get the opportunity to find these things early enough for current medical protocols or knowledge.  I still work closely with my original radiation oncologist who helps me with any palliative care needs that I have.  I am approaching one year since my initial diagnosis (end of August).  I am praying that my support system and my immune system work together in helping me to heal and somehow get past all of this to prove the doctors wrong.  I hold very strong beliefs and have a positive outlook on life.  All of this helps with healing.  

I send positive healing energies to everyone out there suffering the ravages of the cancers and the treatments/side effects.  

Take care of YOU!

... and get plenty of rest and REM sleep that is so important to healing!

Moxie

mp327

Msmoxie

I am so sorry that your consult at MSK was such a hassle to secure to begin with and then turned out to be such a disappointment.  I hope you will continue to look for any other options that might be out there.  I send good thoughts and prayers.

ACinNC

Msmoxie said:

NOTHING offered by MSK

Yes, it is true.  It took six months to get approval for out of network so that I could even go to MSK and then another month for MSK to approve of my out of network insurance approval and then another month to get in with the Dr. at MSK for a consultation!  With what we now know is a very aggressive SCC anal cancer... and now also knowing that they were fudging the numbers to try to keep me a 3a in order to encourage an immediate start up of treatment with two strong chemos and high dose radiation... I am pretty thoroughly disgusted with the health care system... and MSK is supposed to be #2 in the country!!!  

Anyway, because within six months of my inital diagnosis ... my second PET/CT went from 6cm tumor and maybe a lymph node involved... to 13cm tumor and lymph node involvment in my groin and METS in both lobes of my liver with one being 2.5" alone (yes... 2.5 inches!)... So with that and the breast cancer (which is slow growing and not attached to my ribs and close to the surface would allow a lumpectomy) and calcifications in my thyroid and possibly two spots in my right lung... all of the doctors and hospitals have declared me "uncurable"... so I am truly and I must say HAPPILY... on my own.  My prognosis is poor and so I don't even want to spend ten weeks in recovery from surgery... I don't want radiation burns on top of everything else... I don't want chemo brain and problems with balance issues and falling, hearing loss, and on and on... so while I have escped the ravages of their current method of treatment for the cancers with radiation/chemo... I still have the option of having a colostomy if I want to spend ten weeks in recovery after the surgery.  

I spent more than an hour in the consult with the doctor from MSK and they basically want to start with someone that is only at stage 2... anything past that and if you have multiple cancers ... the trials are not going to accept you as a patient.  So ... they found my tumor late to begin with.  It is a very aggressive (likely small cell) SCC of the anus and rectum and so there you have it.

My medications are primarily lomotil and immodium.  I take iron because I do have intermittent bleeding that causes anemia.  I am on a variety of supplements and supportive therapies to try to save my liver.  When asked point blank the doctors all said it is my liver that is going to kill me so I am doing everything in my power to assist my liver.  

My family and my partner in life provide loving support like I have never experienced before.  I am open minded to other possibilities to shrink the tumors but don't have the money to pay for many of the alternative therapies that I read about and hear about.  Too many of them cost more than five thousand dollars and would require travel and related expenses that I just don't have.  So we are doing the best we can with what we have and can afford.

When you are strong and healthy for your entire life and asymptomatic ... you just don't get the opportunity to find these things early enough for current medical protocols or knowledge.  I still work closely with my original radiation oncologist who helps me with any palliative care needs that I have.  I am approaching one year since my initial diagnosis (end of August).  I am praying that my support system and my immune system work together in helping me to heal and somehow get past all of this to prove the doctors wrong.  I hold very strong beliefs and have a positive outlook on life.  All of this helps with healing.  

I send positive healing energies to everyone out there suffering the ravages of the cancers and the treatments/side effects.  

Take care of YOU!

... and get plenty of rest and REM sleep that is so important to healing!

Moxie

Moxie,

Moxie,

It sounds like you have come to terms with your options and are at peace in your decision to not pursue chemo/radiation. I admire your strong belief system and positive outlook.

You mention that you still have the option of a colostomy if you want to spend 10 weeks in recovery.  Unless there were complications, I can't see how it would take 10 weeks to recover.  I had mine done and started treatment the next week and was glad to have it.  I went home from the hospital the same day of colostomy surgery and had to go back the next day to see the ostomy nurse.  Yes, I was moving slow and there was some expected surgical pain but that part of recovery went by quickly.

I wish the best for you.

cbviau

Silver sulfadiazine (Silvadene) Medicinal

Silver sulfadiazine (Silvadene) Medicinal

 

My radiologist prescribed this cream to me for burning anal sores I suffered with during treatment.  It worked!  It worked fast.

Ouch_Ouch_Ouch

cbviau said:

Silver sulfadiazine (Silvadene) Medicinal

Silver sulfadiazine (Silvadene) Medicinal

 

My radiologist prescribed this cream to me for burning anal sores I suffered with during treatment.  It worked!  It worked fast.

Spreading it on.

* Interior - The anal numbing cream I got from a compounding pharmacy did work - eventually, but it stung like blazes until then, so I stopped it after only a few doses. Annusol suppositories helped a lot, especially when the wax melted - it was very soothing. The Annusol cream that is squirted in hurt too much. I finally used a cream they gave me in the hospital - I can't remember the name, but it was mostly zinc oxide with menthol added - very soothing, but they don't make it anymore -- >_< -- I use cocoa butter now.

* Exterior - I wiped with Comfort Shield Barrier Cream Cloths by Sage Products instead of the sandpaper finish of even the softest toilet papers. Those cloths are so very soothing, like a cool cloud. I cut them into quarters (= toilet paper sized pieces). The hospital gave them to me to use from obstetrics. The VA uses them in their nursing home wing. I still keep them handy in case the radiation-induced fissures reopen. You can buy them from medical supply places or their website (cheaper there).

My skin dislikes lanolin, so I don't use Aquaphor. I can't use Silvadene, either because I'm also allegic to sulfa drugs. Instead, I use Albolene and/or cocoa butter. 

My current radiation therapist said to use the last creams the night before the irradiation, then start again after the treatment. But my skin isn't even red this time and I'm in week 4!

knitsandthings

https://csn.cancer.org/discussion/comment/1634021#Comment_1634021

Hey,

I am currently 8 days post treatment (6 weeks radiation) and I’m experiencing similar burns on my lady parts. More than a week finished and very little signs of healing. And it feels like my skin wants to stick together in all the wrong places. I spent an hour with my child and afterward had to tear apart the folds that started sticking together and then just bled a ton from that. I cannot imagine how this area is going to heal. Did you experience this in your vaginal area? I’m so scared, especially since this is a wet area that isn’t bandaged. Does it actually heal?? I am applying aquaphor with lidocaine. My labial folds seal my vaginal shut very quickly and I am often separating them. Can anyone relate? I can’t find much information anywhere. Thank you in advance.

i have 2 young children and I cannot imagine doing this much longer (finding alone time to sit commando). I did not burn until my last week of treatment - all the worst happened afterward. They warned me about this, but this healing process is extremely unfamiliar to me and I don’t know how to handle it.

im looking into that she-pee as the burning is terrible.

thank you.

redgar

I had similar problems w/my labia for some time during and after the radiation treatments. I used Aquaphor extensively everywhere because I’m allergic to sulfa and couldn’t use the burn creams. I would slather the cream on, and then gently use my hair dryer on low/cool to blow it dry so it wouldn’t get all over everything (clothes). I wore kaftans (inexpensive ones available on Amazon) almost exclusively w/no underwear as I couldn’t stand to have anything touching my vaginal area, which seemed to suffer even more than my butt .

The worse does happen AFTER the treatment and it goes on for some time. It was weeks before I could think about wearing pants and then it had to be huge balloon pants. I got a padded toilet seat and a padded donut to carry w/me to sit on. Almost two years later and I’m still sitting on the padded donut at home…cause….well…that radiation comes back to haunt you. It’s the gift that just keeps on giving and giving YEARS later. You think you’re done and then BAM, the discomfort is back. Based on the research I’ve done and my own experience, the damage the radiation does to that area of your body is something you’ll most likely be dealing with for a long, long time.

one of the best things I did was get a bidet for my toilet. They’re available from Amazon relatively inexpensively, fit on any toilet and are easy to install. It’s the kindest thing you can do for your butt and vaginal area. Cleans w/out rubbing, soothes and cools. I still need it as the butt burning, diarrhea, vaginal burning is STILL a part of my life. It was a super worthwhile investment.