New (sorta) to site too

Vicki K
Vicki K Member Posts: 14

I say I'm new, but have been lurking for a while!  My husband has been undergoing treatment for a while.  We are finished with the chemo, and the picc line was removed on Monday.  Thank God for small victories!  We are, however, really struggling with the side effects of the radiation (7 more to go).  And although I have read a lot about other's having severe burns as well, I am still looking for some relief for him.  He did finally give in and start taking the hydrocodone, and we have tried the silver sulfadiazine, sitz baths and domeboro several times a day.  Any other suggestions would be welcome, if it will make him more comfortable.  The burns bother him the most in the genital area, he said he can tolerate the burns better in the rear, but the front is awful and weeping, which makes the silversulfadiazine drip off.  Gross I know, and sorry to be so graphic, but again, I am open for suggestions here!  Thank you all for the wonderful support!

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    Vicki K

    I'm sorry your husband is having to go through this.  It can be miserable towards the end of treatment and my heart goes out to him.  I got very little relief from my burns, which were severe, from silver sulfadiazine, as I had diarrhea so bad that I couldn't keep the stuff on.  I also didn't take as much pain medication as I should have because I was driving myself to treatment all but one day per week.  That was a mistake!  I spent a lot of time in the bathtub in lukewarm water, which did give me a little relief.  I'm not sure I can offer any suggestions that your husband hasn't already tried.  My rad nurse told me to try the liquid out of Vitamin E capsules, but I never did.  Also, I know some people get relief with pure aloe. 

    Don't worry about being grahic here--we have talked about it all.  Hopefully, someone else will chime in and make a suggestion that will be helpful.  I will keep both your husband and you in my thoughts and prayers.

  • Vicki K
    Vicki K Member Posts: 14
    mp327 said:

    Vicki K

    I'm sorry your husband is having to go through this.  It can be miserable towards the end of treatment and my heart goes out to him.  I got very little relief from my burns, which were severe, from silver sulfadiazine, as I had diarrhea so bad that I couldn't keep the stuff on.  I also didn't take as much pain medication as I should have because I was driving myself to treatment all but one day per week.  That was a mistake!  I spent a lot of time in the bathtub in lukewarm water, which did give me a little relief.  I'm not sure I can offer any suggestions that your husband hasn't already tried.  My rad nurse told me to try the liquid out of Vitamin E capsules, but I never did.  Also, I know some people get relief with pure aloe. 

    Don't worry about being grahic here--we have talked about it all.  Hopefully, someone else will chime in and make a suggestion that will be helpful.  I will keep both your husband and you in my thoughts and prayers.

    thank you MP

    Thank you MP for your reply!  We do have aloe plants and tried the aloe at the beginning, but it also had a drying effect, wondering if that would be a good or bad thing with the oozing going on.  Better to let it ooze or dry it up??

    I'll let him know about soaking in warm water.  I am driving him to treatments now, since he can hardly sit straight up at this point.

    Will run the vitamin E thing by him too, he's gotten to the point where he is willing to try anything if it will help!

  • Marynb
    Marynb Member Posts: 1,118
    Vicki K said:

    thank you MP

    Thank you MP for your reply!  We do have aloe plants and tried the aloe at the beginning, but it also had a drying effect, wondering if that would be a good or bad thing with the oozing going on.  Better to let it ooze or dry it up??

    I'll let him know about soaking in warm water.  I am driving him to treatments now, since he can hardly sit straight up at this point.

    Will run the vitamin E thing by him too, he's gotten to the point where he is willing to try anything if it will help!

    Vicki
    Hi. Your husband is lucky to have your help with all this! I had much better luck not using any lotions at all. I kept it dry and lean. I used thr handheld shower at room temp, sitz baths. Letting the air get at e burned area is the best. Some here used Benedryl for the itch. I did not. I hope your husband heals very quickly.
  • eihtak
    eihtak Member Posts: 1,473 Member
    Hi.....

    It saddens me all the new people we have on here in the last few months and makes me wonder how many, many more there must be out there! This is a safe, helpful place to come for help though, so for that I am glad.

    I found it more difficult to wash off the creams before radiation treatment each day than it was worth for the small amount of relief I got. It is important to have ALL off or burns may get worse. I did though, as soon as completed with radiation use both aquaphor and a spray called Dermoplast which is available OTC and often prescribed for  relief after childbirth. It was helpful also being a spray and easier to apply.

    My pain level was "through the roof" and I did take both oxycontin and oxycodone during treatment and then for a short time after.  Just remember that pain meds cause constipation so lots of fluid and maybe stool softeners. I was advised to wean off the pain med and not just stop.....which was not hard to do as healing came sooner than I thought.

    I will keep both your husband and yourself in my thoughts and prayers.

  • Vicki K
    Vicki K Member Posts: 14
    Thank you all

    Yes, it is concerning that there are so many in here, but that can also be a good thing, that they are catching it earlier!

    The front area is difficult to apply the cream, as it stays moist all the time.  I am going to ask the Dr tomorrow about the aloe as it does have a drying effect, but then again, is it better to ooze or dry?  (Dr question I'm thinking.)  Sorry, I tend to type what I'm thinking!

    We are discussing the cream or no cream thing now.

    Hey, I feel as if we are in this together, we have been together for 30 years and it's my honor to help him, since he's truly my hero!  

    We did come up with a way to keep him kinda comfy in the recliner, he sits bare, and we use a wire rack that has legs and fits on either side of him, so it's like a tray and he can cover himself and stay warm and not have anything stick to him.  Handy to have a tray in your lap that doesn't touch anything!  LOL!

     

  • torrance
    torrance Member Posts: 118
    Vicki K said:

    Thank you all

    Yes, it is concerning that there are so many in here, but that can also be a good thing, that they are catching it earlier!

    The front area is difficult to apply the cream, as it stays moist all the time.  I am going to ask the Dr tomorrow about the aloe as it does have a drying effect, but then again, is it better to ooze or dry?  (Dr question I'm thinking.)  Sorry, I tend to type what I'm thinking!

    We are discussing the cream or no cream thing now.

    Hey, I feel as if we are in this together, we have been together for 30 years and it's my honor to help him, since he's truly my hero!  

    We did come up with a way to keep him kinda comfy in the recliner, he sits bare, and we use a wire rack that has legs and fits on either side of him, so it's like a tray and he can cover himself and stay warm and not have anything stick to him.  Handy to have a tray in your lap that doesn't touch anything!  LOL!

     

    Air all his concerns!

    Vicki,

    Like many here, nothing gave me relief.  Creams, lotions, pain killers, baths, etc.  I ended up in the hospital for pain management, even they couldn't help.  One of the ointments they tried led to an infection, so even the pros are at odds in helping.  The final thing I tried and it offered some relief from the skin on skin type chaffing was a bandage called Mepilex.  I stuck without sticking and absorbed the oozzing and still aloud breathing of the skin.  For me it was the only thing that offered a little relief.  Please know that while this is absolutely miserable, it is normal, and take it one day at a time.

    Joanne

  • pializ
    pializ Member Posts: 508 Member
    torrance said:

    Air all his concerns!

    Vicki,

    Like many here, nothing gave me relief.  Creams, lotions, pain killers, baths, etc.  I ended up in the hospital for pain management, even they couldn't help.  One of the ointments they tried led to an infection, so even the pros are at odds in helping.  The final thing I tried and it offered some relief from the skin on skin type chaffing was a bandage called Mepilex.  I stuck without sticking and absorbed the oozzing and still aloud breathing of the skin.  For me it was the only thing that offered a little relief.  Please know that while this is absolutely miserable, it is normal, and take it one day at a time.

    Joanne

    Vicki

    Well I am from over the pond and am so glad that I too was able to find this site. Sad, but true. I fin7shed treatment in January. Stage . I coped basically 5he same as Marynb. No creams. Would have been too difficult to remove before RT &/or increased burns. I did use pain relief as required. Going commando helped. A dressing gown or kaftan for hubby? I used my long summer dresses. Also sitting on a sheepskin or folded duvet. To get in and out of car, q satin pillow case (I didn't discover that gem until too late, but it would be timely for your husband). He is lucky to have you for sure!

  • eihtak
    eihtak Member Posts: 1,473 Member
    pializ said:

    Vicki

    Well I am from over the pond and am so glad that I too was able to find this site. Sad, but true. I fin7shed treatment in January. Stage . I coped basically 5he same as Marynb. No creams. Would have been too difficult to remove before RT &/or increased burns. I did use pain relief as required. Going commando helped. A dressing gown or kaftan for hubby? I used my long summer dresses. Also sitting on a sheepskin or folded duvet. To get in and out of car, q satin pillow case (I didn't discover that gem until too late, but it would be timely for your husband). He is lucky to have you for sure!

    Satin pillowcase....

    Glad you mentioned that! I always seem to forget that little bit of advice that was so helpful to me. It gets to a point where it is difficult to swivel or slide in the car, chair, bed, so I had two and was a great help!

  • mxperry220
    mxperry220 Member Posts: 493 Member
    Aquaphor

    I like your husband had the most pain in my groin and anus areas.  I found Aquaphor worked the best for me.  I got mine over the counter at Target.  I used several prescription topical ointments and found Aquaphor worked the best for me.  If you use topical oinments make certain your husband compeletly removes the ointment before radiation.  If this is not done the radiation may make his burns more severe.

    Hope this helps,

    Mike

  • Vicki K
    Vicki K Member Posts: 14
    Thanking y'all again!

    We just came back from another treatment and speaking to the rad nurse.  New plan of attack!

    Armed with the suggestions that everyone has posted so far, I made a list and spoke to her about each one.  So, we are mixing the aloe and Vitamin E together and putting it in the areas that are the worst.  The "sticking" problem has caused him to bleed in VERY sensitive areas.  He said that the combo felt more soothing than any of the script ointments he's used!  Whew!  We have a gazillion aloe plants around here, so that is a gift from God!

    She also provided us with a sheet of the mepelix (spelling is wrong I'm sure) We will try that on the backside, as the front it too raw at this point.

    I fear that the burns were so bad because he wasn't able to get everything off before, AND he was using corn starch and not even attempting to remove that prior to treatment. Cry

    We have also ordered silk boxers for him, as none were available in stores around here.  We paid extra to get them overnighted, but hubby says if they work, he doesn't care how much it costs at this point!  (Dillards salesperson said they quit making them.  Well, they didn't stop making them, Dillards just doesn't order them anymore, neither does Macy's.)

    Will keep y'all posted and THANK YOU so much, every tip has been so helpful!!!!!

    6 to go!

     

  • Marynb
    Marynb Member Posts: 1,118
    Vicki K said:

    thank you MP

    Thank you MP for your reply!  We do have aloe plants and tried the aloe at the beginning, but it also had a drying effect, wondering if that would be a good or bad thing with the oozing going on.  Better to let it ooze or dry it up??

    I'll let him know about soaking in warm water.  I am driving him to treatments now, since he can hardly sit straight up at this point.

    Will run the vitamin E thing by him too, he's gotten to the point where he is willing to try anything if it will help!

    Vicki
    Hi. Your husband is lucky to have your help with all this! I had much better luck not using any lotions at all. I kept it dry and clean. I used the handheld shower at room temp, sitz baths. Letting the air get at the burned area is the best. Some here used Benedryl for the itch. I did not. I hope your husband heals very quickly.
  • 7243
    7243 Member Posts: 249 Member
    Vicki K said:

    Thanking y'all again!

    We just came back from another treatment and speaking to the rad nurse.  New plan of attack!

    Armed with the suggestions that everyone has posted so far, I made a list and spoke to her about each one.  So, we are mixing the aloe and Vitamin E together and putting it in the areas that are the worst.  The "sticking" problem has caused him to bleed in VERY sensitive areas.  He said that the combo felt more soothing than any of the script ointments he's used!  Whew!  We have a gazillion aloe plants around here, so that is a gift from God!

    She also provided us with a sheet of the mepelix (spelling is wrong I'm sure) We will try that on the backside, as the front it too raw at this point.

    I fear that the burns were so bad because he wasn't able to get everything off before, AND he was using corn starch and not even attempting to remove that prior to treatment. Cry

    We have also ordered silk boxers for him, as none were available in stores around here.  We paid extra to get them overnighted, but hubby says if they work, he doesn't care how much it costs at this point!  (Dillards salesperson said they quit making them.  Well, they didn't stop making them, Dillards just doesn't order them anymore, neither does Macy's.)

    Will keep y'all posted and THANK YOU so much, every tip has been so helpful!!!!!

    6 to go!

     

    Telfa

    I used domboro and it created the best relief For me....and enhanced healing.   after the treatment with domboro I dried the area with a blow dryer and laid dry, fresh telfa on the oozy areas ... This helped protect clothing and kept me clean .... I place one between my tail cheeks too.  Just a few ideas to consider!  Bless you and your hubby!  Xo

  • Vicki K
    Vicki K Member Posts: 14
    5 to go!

    We are counting the days for sure.  He had a rough weekend, and he is sleeping only about an hour at a time.

    The aloe/vitamin E plan of attack didn't last long, as he still complained it dried out areas too much and it was more painful.  We went back to using Calendula a homeopathic medicine.

    The silk boxers we ordered and paid for overnight shipping STILL hasn't arrived.  Hopefully, today.  The only time he really needs them is for traveling to treatments, as it's the only time he's putting any clothing on his lower body.

    This course of treatment is truly barbaric, and can't help but think that Someday, they (Dr's) will look back and shake their heads at what they put these poor people through.  

    I am hoping the healing process begins quickly after treatment.  Any clues on when he will start to get some relief from the burns, once treatment stops??

  • mp327
    mp327 Member Posts: 4,440 Member
    Vicki K said:

    5 to go!

    We are counting the days for sure.  He had a rough weekend, and he is sleeping only about an hour at a time.

    The aloe/vitamin E plan of attack didn't last long, as he still complained it dried out areas too much and it was more painful.  We went back to using Calendula a homeopathic medicine.

    The silk boxers we ordered and paid for overnight shipping STILL hasn't arrived.  Hopefully, today.  The only time he really needs them is for traveling to treatments, as it's the only time he's putting any clothing on his lower body.

    This course of treatment is truly barbaric, and can't help but think that Someday, they (Dr's) will look back and shake their heads at what they put these poor people through.  

    I am hoping the healing process begins quickly after treatment.  Any clues on when he will start to get some relief from the burns, once treatment stops??

    Vicki

    Only 5 more to go is great, however, as you and your husband are finding out, this is the worst time.  I'm so sorry he has not found anything to give him good relief from the burns.  I did not either at this point in the treatment--I just had to stick it out.  You are right, this is a barbaric treatment--I can't think of a better word to describe it.  Unfortunately, at this point in time, it's all we've got. 

    My healing took place rather quickly.  I would say that after about a week, the burns were much better and 10 days after treatment, I was exercising again.  The body's ability to heal really is quite miraculous.  Both of you hang in there--better days are just around the corner!

  • Vicki K
    Vicki K Member Posts: 14
    mp327 said:

    Vicki

    Only 5 more to go is great, however, as you and your husband are finding out, this is the worst time.  I'm so sorry he has not found anything to give him good relief from the burns.  I did not either at this point in the treatment--I just had to stick it out.  You are right, this is a barbaric treatment--I can't think of a better word to describe it.  Unfortunately, at this point in time, it's all we've got. 

    My healing took place rather quickly.  I would say that after about a week, the burns were much better and 10 days after treatment, I was exercising again.  The body's ability to heal really is quite miraculous.  Both of you hang in there--better days are just around the corner!

    mp

    Thank you so much!  Your post was so encouraging for him!

    4 to go!

  • AZANNIE
    AZANNIE Member Posts: 445 Member
    Vicki

    A wound care nurse prescribed xenaderm ointment (prescription) for my burns. It seemed to help. Healing happens pretty fast - in about a week or so, but everyone is different. Your husband is approaching the finish line - hang in there.

    Ann