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LaCh
LaCh Member Posts: 557

Domobro, aquaphor, 100% aloe vera, silver sulfadine, all sting and make it worse.  Just tried something OTC called Dibucane, which has knocked the pain down to a "10."  Has anyone ever tried Magic Mouthwash on perinium burns?  I'm  in agony. 

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  • RoseC
    RoseC Member Posts: 559
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    I used Aveeno colloidal

    I used Aveeno colloidal oatmeal, about 1 tablespoon mixed with warm water in a stiz bath. It was very soothing - didn't last too long, but as long as it did, it was soothing. My sympathies - I know that doesn't help much, but my sympathies are with you.

  • LaCh
    LaCh Member Posts: 557
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    RoseC said:

    I used Aveeno colloidal

    I used Aveeno colloidal oatmeal, about 1 tablespoon mixed with warm water in a stiz bath. It was very soothing - didn't last too long, but as long as it did, it was soothing. My sympathies - I know that doesn't help much, but my sympathies are with you.

    RoseC

    Thanks RoseC...   I appreciate it....  

  • RoseC
    RoseC Member Posts: 559
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    LaCh said:

    RoseC

    Thanks RoseC...   I appreciate it....  

    Hope you feel better real

    Hope you feel better real soon.

  • Marynb
    Marynb Member Posts: 1,118
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    Pain
    LaCh,

    You are at the tough part right now. I used Tylenol for the pain when it seemed unbearable. I cannot tolerate pain meds at all and I am glad I didn't complicate the situation by adding those side effects. I used sitz baths with a rather strange ingredient that I was advised to use by the hospital. I used the blue powdery substance that goes into aquariums. I got it at the pet store. I know it sounds totally bizarre and I had quite a few laughs about it, but it worked well to alleviate pain and promote fast healing. Apparently, it is evidence based. I bought a 5 pound bag of it.

    Other than that, I used the hand held shower to soothe. I also used a squirt bottle of room temperature water while I urinated to dilute. Pat dry and allow the air to get at it.

    Another way to manage pain is to distract your mind with something else. This is proven to be effective and pretty quickly mastered. You can use something as elementary as computer games. My daughter loaded the game Angry Birds on my ipad. Sounds silly, but it works. Funny, I haven't played it since I healed, but it totally distracted me during the most painful periods. There were other games that also worked,

    Hang in there. You are almost at the finish line!
  • AZANNIE
    AZANNIE Member Posts: 445 Member
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    LaCh

    Sooo sorry you're in agony and hope you find relief soon. The wound care nurse prescribed a prescription ointment - xenaderm and then I had to put Desitin on top of that. I was told that the xenaderm might sting at first but it didn't. The only thing is you would have to make sure to get it all off before radiation. I used the sitz bath a lot. Feel better soon!!!

    Ann

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
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    AZANNIE said:

    LaCh

    Sooo sorry you're in agony and hope you find relief soon. The wound care nurse prescribed a prescription ointment - xenaderm and then I had to put Desitin on top of that. I was told that the xenaderm might sting at first but it didn't. The only thing is you would have to make sure to get it all off before radiation. I used the sitz bath a lot. Feel better soon!!!

    Ann

    LaCh

    You are an amazing person.  The dog the walk up, getting yourself to tx.  Unbelievable how you are managing all of this.

     

    When I was burned and tx was over, I had a home nurse who would come and clean and dress the burns.  She would use SALINE to clean the area, wow did that feel good, then she would apply the acquafor.  The relief would last for hours.

     

    Good luck with the rest of tx.

  • LaCh
    LaCh Member Posts: 557
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    LaCh

    You are an amazing person.  The dog the walk up, getting yourself to tx.  Unbelievable how you are managing all of this.

     

    When I was burned and tx was over, I had a home nurse who would come and clean and dress the burns.  She would use SALINE to clean the area, wow did that feel good, then she would apply the acquafor.  The relief would last for hours.

     

    Good luck with the rest of tx.

    phoebesnow

    Thanks phoebesnow but I'm afraid I'm actually not managing all that well at all.  I'm losing my temper, becoming impatient and not handling things (or myself) well. I lost it yesterday when the hospital called to confirm my appt for Tuesday's port removel and couldn't find my records from a mere six weeks ago, (this after billing the wrong insurance company) and then proceeded to ask me the same questions they asked me back then, things they wouldn't have had to ask if they hadn't lost the chart.  So I finally said that unless all the questions about where I lived, how I lived, whether or not I have arthritis (yes arthitis) and a variety of other irrelevant things would preclude the port removal, then I wasn't going to answer them. So yes, I'm getting things done, but not in the best of ways.  And I find myself thinking more and more of simply saying, "Hey, you know what?  Yeah, I'm close to the end of this hellish, insane treatment but I'm done. No more.  That's it," and just walking away.  I'm getting very close to the point where I just don't care anymore. If the tumor's gone, great. If the tumor's not gone, that's fine too. I just don't care. So I'm getting things done but not handling them (myself) very well.

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
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    LaCh said:

    phoebesnow

    Thanks phoebesnow but I'm afraid I'm actually not managing all that well at all.  I'm losing my temper, becoming impatient and not handling things (or myself) well. I lost it yesterday when the hospital called to confirm my appt for Tuesday's port removel and couldn't find my records from a mere six weeks ago, (this after billing the wrong insurance company) and then proceeded to ask me the same questions they asked me back then, things they wouldn't have had to ask if they hadn't lost the chart.  So I finally said that unless all the questions about where I lived, how I lived, whether or not I have arthritis (yes arthitis) and a variety of other irrelevant things would preclude the port removal, then I wasn't going to answer them. So yes, I'm getting things done, but not in the best of ways.  And I find myself thinking more and more of simply saying, "Hey, you know what?  Yeah, I'm close to the end of this hellish, insane treatment but I'm done. No more.  That's it," and just walking away.  I'm getting very close to the point where I just don't care anymore. If the tumor's gone, great. If the tumor's not gone, that's fine too. I just don't care. So I'm getting things done but not handling them (myself) very well.

    Lach

    U r a little spicy and I like that.  U r a fighter and that's how u r going to get thru this.    I know these last tx r the hardest to get thru.  My husband drove me to the last 3 tx.  I needed him then.  U might need ur sister now.  Please think abouit it.  

  • LaCh
    LaCh Member Posts: 557
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    Lach

    U r a little spicy and I like that.  U r a fighter and that's how u r going to get thru this.    I know these last tx r the hardest to get thru.  My husband drove me to the last 3 tx.  I needed him then.  U might need ur sister now.  Please think abouit it.  

    phobesnow

    "Spicy" is putting it nicely.  Bit of a dic*head is more like it.  My sister coming isn't an option and isn't even on the table or being discussed/offered.  In any case, I can get myself to and from wherever I have to be and the truth is, there's not anything anyone can do for me so having someone here wouldn't really serve any purpose.  I need two things; relief from this pain and "space," so someone here wouldn't really be the best thing for me anyway.  The thing is, I've been deferring to other people to decide when I've reached my limit and it occured to me that that's kind of silly. I have 6 more treatments to go. If I reach a point where I feel that I simply can't go on, I'll give myself a break. 

  • Marynb
    Marynb Member Posts: 1,118
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    LaCh said:

    phobesnow

    "Spicy" is putting it nicely.  Bit of a dic*head is more like it.  My sister coming isn't an option and isn't even on the table or being discussed/offered.  In any case, I can get myself to and from wherever I have to be and the truth is, there's not anything anyone can do for me so having someone here wouldn't really serve any purpose.  I need two things; relief from this pain and "space," so someone here wouldn't really be the best thing for me anyway.  The thing is, I've been deferring to other people to decide when I've reached my limit and it occured to me that that's kind of silly. I have 6 more treatments to go. If I reach a point where I feel that I simply can't go on, I'll give myself a break. 

    Lach
    You are strong. Do what you have to to get through this. Kick the wall, kick the dog, curse the night, but you will NOT give up this fight! You can really do this! I know you are not a believer, but I am praying for you. Hang in there. Cancer sucks, it really, really does. You don't want all this suffering to be for nothing! You will beat this.
  • LaCh
    LaCh Member Posts: 557
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    Marynb said:

    Lach
    You are strong. Do what you have to to get through this. Kick the wall, kick the dog, curse the night, but you will NOT give up this fight! You can really do this! I know you are not a believer, but I am praying for you. Hang in there. Cancer sucks, it really, really does. You don't want all this suffering to be for nothing! You will beat this.

    marynb

    Thanks Marynb,

    Part of the problem is that I entered this having zero respect and confidence in western medicine and its practitioners and nothing so far has given me reason to change my mind.  My radio oncologist has steadfastly refused to answer any and all questions put to him so I can't ask him this either: How can it be that  two rounds of chemo and 29 radiation treatments will cure this tumor but two rounds of chemo and 25 or 26 radiation treatments won't?  Because I look like someone took a blowtorch to my lower half and everything on it and I'm not clear about what the difference is between a "magic" 29 treatments and 27 or whatever.  As for cancer sucking, well, yes, I suppose it does, but all illnesses suck, all injuries, all things that are unwelcome, unpleasant, unwanted or painful. They all suck and yet we all experience these things at some point and we all have to die some time of something. I'm not quite ready yet but if my time is up, my time is up.  I have my own set of beliefs, and while they don't include god, they do include the cycle of reincarnation.  But that's just me and not important right now.  I'm not quite ready to die but assume, as I have from the outset, that the treatments will cure the tumor and I'm not worried about it. I'm more concerned about what scars I'll carry from the cure and what short term and long term affects it'll have my quality of life. But if I'm wrong and the tumor isn't cured, well, I gave it my best shot and I'm ok with whatever happens. As for kicking the wall, the dog or anything else, I don't really feel like kicking anything (except the doctors, maybe).  I never saw the cancer as a bad thing, as a good thing or as anything more than A Thing.  Things happen and anger at the disease never entered my mind. Anger at the doctors, yes, I've felt anger at them, but to me, disease is simply a part of life, and it happens.  But in one thing, you're wrong. Although I'm not a believer (in god) my response to someone saying that they're praying for me is always very appreciated and touches me deeply because I recognize it for what it is; a comment on faith placed in something that person believes in for a good outcome for me.  It's a kind gesture, a generous gesture and a caring gesture and that's the only way that I take it, and whether I share the same beliefs or not, I deeply apprecitate the feeling behind it and I do thank you. 

  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
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    LaCh said:

    marynb

    Thanks Marynb,

    Part of the problem is that I entered this having zero respect and confidence in western medicine and its practitioners and nothing so far has given me reason to change my mind.  My radio oncologist has steadfastly refused to answer any and all questions put to him so I can't ask him this either: How can it be that  two rounds of chemo and 29 radiation treatments will cure this tumor but two rounds of chemo and 25 or 26 radiation treatments won't?  Because I look like someone took a blowtorch to my lower half and everything on it and I'm not clear about what the difference is between a "magic" 29 treatments and 27 or whatever.  As for cancer sucking, well, yes, I suppose it does, but all illnesses suck, all injuries, all things that are unwelcome, unpleasant, unwanted or painful. They all suck and yet we all experience these things at some point and we all have to die some time of something. I'm not quite ready yet but if my time is up, my time is up.  I have my own set of beliefs, and while they don't include god, they do include the cycle of reincarnation.  But that's just me and not important right now.  I'm not quite ready to die but assume, as I have from the outset, that the treatments will cure the tumor and I'm not worried about it. I'm more concerned about what scars I'll carry from the cure and what short term and long term affects it'll have my quality of life. But if I'm wrong and the tumor isn't cured, well, I gave it my best shot and I'm ok with whatever happens. As for kicking the wall, the dog or anything else, I don't really feel like kicking anything (except the doctors, maybe).  I never saw the cancer as a bad thing, as a good thing or as anything more than A Thing.  Things happen and anger at the disease never entered my mind. Anger at the doctors, yes, I've felt anger at them, but to me, disease is simply a part of life, and it happens.  But in one thing, you're wrong. Although I'm not a believer (in god) my response to someone saying that they're praying for me is always very appreciated and touches me deeply because I recognize it for what it is; a comment on faith placed in something that person believes in for a good outcome for me.  It's a kind gesture, a generous gesture and a caring gesture and that's the only way that I take it, and whether I share the same beliefs or not, I deeply apprecitate the feeling behind it and I do thank you. 

    Radiation

    I had terrible burns from the radiation also.   Early on I used Lidocaine Hydrochloride Jelly USP, 2%, which helped because it numbed and cooled the burn.  I ended up in the hospital after my second chemo, and the nurses used a cream - Cavilon Durable Barrier Cream, which was very soothing; I continued using it for quite a while after I got out of the hospital. I took Oxycodene during and after treatments,  and even was on morphine when I was in the hospital due to the burn pains. I know you don't like drugs but you might want to try the Oxycodene. I was given a very low dose in tablet form - as long as you take it every 4-6 hours it will keep your pain to a tolerable level.  I could not have gotten through everything without pain meds.  I had no addiction or withdrawal problems afterwards. The other thing I did was an ice pack and put it between my legs to cool the burn. And the sitz bath was amazing; I would never had thought just soaking in warm water for 15 minutes would be so soothing..... I wouldn't want to say anything to encourage you to stop treatment, but I can tell you that I only had 25 treatments out of a planned 31; they had to stop because my blood counts crashed and then I got c-diff and was in the hospital for two weeks. The Dr.s thought I would still have some of the tumor and would have to have the surgery; the surgeon was shocked three months later when his exam showed only scar tissue and the PET scan was clear. So I think like you do, how do they know what the "magic" number is for each person........  My suggestion is that if you aren't taking pain meds, try getting some; it might enable you to finish the treatments. I understand your anger at some Doctors - I came close to telling one who was asking STUPID questions to get the H out of my hospital room; this pain makes you feel like an animal who has retreated to a dark cave and you have no patience for nonsense or stupidity and just want to be left alone......I do think you have been very strong during your treatments - I could hardly walk to my car to go to the radiation treatments, much less up and down 5 flights of stairs or taking a dog for a walk.........This is a rough treatment, like going to H and back if you ask me.  When I was going through it, I wondered like you if it was worth it. But when I got the results from the PET scan three months later, I DID feel like it was worth it, that the horrendous treatments had gotten rid of the cancer and I had a second chance to LIVE.  I'm sorry I have rambled on so long......... I remember one of the chemo nurses gave me a card with a candy bar in it, and she wrote "This will get better - I promise". It was impossible to see at that time, but she was right; it does get better. You are in my thoughts and I am also praying for you.

  • Marynb
    Marynb Member Posts: 1,118
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    LaCh said:

    marynb

    Thanks Marynb,

    Part of the problem is that I entered this having zero respect and confidence in western medicine and its practitioners and nothing so far has given me reason to change my mind.  My radio oncologist has steadfastly refused to answer any and all questions put to him so I can't ask him this either: How can it be that  two rounds of chemo and 29 radiation treatments will cure this tumor but two rounds of chemo and 25 or 26 radiation treatments won't?  Because I look like someone took a blowtorch to my lower half and everything on it and I'm not clear about what the difference is between a "magic" 29 treatments and 27 or whatever.  As for cancer sucking, well, yes, I suppose it does, but all illnesses suck, all injuries, all things that are unwelcome, unpleasant, unwanted or painful. They all suck and yet we all experience these things at some point and we all have to die some time of something. I'm not quite ready yet but if my time is up, my time is up.  I have my own set of beliefs, and while they don't include god, they do include the cycle of reincarnation.  But that's just me and not important right now.  I'm not quite ready to die but assume, as I have from the outset, that the treatments will cure the tumor and I'm not worried about it. I'm more concerned about what scars I'll carry from the cure and what short term and long term affects it'll have my quality of life. But if I'm wrong and the tumor isn't cured, well, I gave it my best shot and I'm ok with whatever happens. As for kicking the wall, the dog or anything else, I don't really feel like kicking anything (except the doctors, maybe).  I never saw the cancer as a bad thing, as a good thing or as anything more than A Thing.  Things happen and anger at the disease never entered my mind. Anger at the doctors, yes, I've felt anger at them, but to me, disease is simply a part of life, and it happens.  But in one thing, you're wrong. Although I'm not a believer (in god) my response to someone saying that they're praying for me is always very appreciated and touches me deeply because I recognize it for what it is; a comment on faith placed in something that person believes in for a good outcome for me.  It's a kind gesture, a generous gesture and a caring gesture and that's the only way that I take it, and whether I share the same beliefs or not, I deeply apprecitate the feeling behind it and I do thank you. 

    LaCh
    I believe that the protocol was developed over time, based on effectiveness of various treatments and statistical rates of survival. As anal cancer patients, we are lucky that there is a protocol with a high survivor rate. I also have another cancer, which is so rare that there is no known cure,and so no protocol. I can tell you that patients with this rare cancer literally travel all over the world searching for a cure or any treatment that may prolong life. There is no evidence based protocol at all. I do understand the need to accept the eventuality of death from cancer. Luckily for you, if you complete the treatments, the probability is that you will not die from anal cancer .With the anal cancer, when the doctors tell you that there is an 85% chance of survival using the protocol, it is based on the a statistical analyis and it is so worth sticking to it.
    You are almost done and you will be well very soon!
  • z
    z Member Posts: 1,414 Member
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    Lach

    bag balm was given to me by my radioligist (used on cow utters).  If it could work on a cow it could work on my burns.   It seemed to halp me a lot.  I know it hurts, but it will get better.  Lori

  • LaCh
    LaCh Member Posts: 557
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    z said:

    Lach

    bag balm was given to me by my radioligist (used on cow utters).  If it could work on a cow it could work on my burns.   It seemed to halp me a lot.  I know it hurts, but it will get better.  Lori

    z

    Hi Z

    Thanks for your input. My concern with anything topical (I'm familiar with bag balm from my work with animals) is the ability to completly remove it prior to radiation...

  • LaCh
    LaCh Member Posts: 557
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    Marynb said:

    LaCh
    I believe that the protocol was developed over time, based on effectiveness of various treatments and statistical rates of survival. As anal cancer patients, we are lucky that there is a protocol with a high survivor rate. I also have another cancer, which is so rare that there is no known cure,and so no protocol. I can tell you that patients with this rare cancer literally travel all over the world searching for a cure or any treatment that may prolong life. There is no evidence based protocol at all. I do understand the need to accept the eventuality of death from cancer. Luckily for you, if you complete the treatments, the probability is that you will not die from anal cancer .With the anal cancer, when the doctors tell you that there is an 85% chance of survival using the protocol, it is based on the a statistical analyis and it is so worth sticking to it.
    You are almost done and you will be well very soon!

    marynb

    Hi Marynb,

    I'm sorry to hear about your second cancer. That's a lot to carry. The protocol for stage l/ll anal cancer seems to have some flexibility; some people receive 27, some people 28 or 29, some people 30 treatments. I think that the protocol is fixed in some ways and flexible in others, and the determining factor seems to be who your radio oncologist is.  I've got mixed feelings about statistics. They're useful to a point but basically, they're comments about other people, and the presumption is that I (or you or anyone) will respond like they did. That said, I expect the tumor to be cured if I complete the treatments.  I've been awake since 1:00 this morning, going to the bathroom every 30 minutes (not diarrhea, just frequent visits) and screaming into the towel each time). I can't think or function, speaking to anyone is impossible, I just can't carry on a conversation. I don't see how the next 6 treatments will be possible, since the closer you get to the end, the worse the burns and pain get.  The problem for me is inside; there's something going on in there that causes pain beyond description during each bathroom experience and the skin assessments to determine whether or not I need a break only look at the outside.  If I take a break or call it quits, I'm going to have to be the one to decide that since what can't be seen (the inside) carries little weight when deciding to take a break. 

  • cap630
    cap630 Member Posts: 151 Member
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    Smoothing to Burns

    So sorry that you are in pain. I was prescribed Biafine/PruTect topical emulsion for my burns.  Nothing else worked. 

  • Lorikat
    Lorikat Member Posts: 681 Member
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    cap630 said:

    Smoothing to Burns

    So sorry that you are in pain. I was prescribed Biafine/PruTect topical emulsion for my burns.  Nothing else worked. 

    Prescribed for me as well....
    Prescribed for me as well....
  • LaCh
    LaCh Member Posts: 557
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    Lorikat said:

    Prescribed for me as well....
    Prescribed for me as well....

    thanks all

    Thanks for all the info everyone...  I was using a topical analgesic over the weekend and I think it made it worse, weepy and wet, so I stopped. *and really, the main, primary problem isn't external burns although I certainly have them and they're certainly painful, but internal.  I have something internal going on and it's that, that's the cause of all the pain when I go to the bathroom). I'm in the process of getting a script filled for hydrocodone.  not happy about it but I can't tolerate the pain anymore and just hope that I'm not simply exchanging one problem for another. 

  • OMG 1012
    OMG 1012 Member Posts: 61
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    LaCh said:

    thanks all

    Thanks for all the info everyone...  I was using a topical analgesic over the weekend and I think it made it worse, weepy and wet, so I stopped. *and really, the main, primary problem isn't external burns although I certainly have them and they're certainly painful, but internal.  I have something internal going on and it's that, that's the cause of all the pain when I go to the bathroom). I'm in the process of getting a script filled for hydrocodone.  not happy about it but I can't tolerate the pain anymore and just hope that I'm not simply exchanging one problem for another. 

    Hi--

    Just to let you know, I  am 11 days done with my TX and it does get better--

    My Dr also prescribed hydrocodones.  I could not sleep because the pain was so bad--Just make sure to ask your Dr about taking  stool softeners as these pills will constipate you.

    I will tell you, with out the stool softeners i think I would have died!  I took 2 at night and 2 in the am they helped tremendously I am still taking them and they keep things moving along well when I do go, which has only been every few days as compared to myu usual 1x a day before TX