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Ideas for Pain???

lperry01
Posts: 10
Joined: Jul 2011

Im looking for someone to please tell me how to help with the pain from radiation. My mother has Stage III rectal cancer and the site where she is receiving radiation is so badly burned. I just feel so helpless when I see her crying from all the pain. She is taking oral pain medicine around the clock and putting Silvadene cream twice a day, as per her doctor. However, the pain is unbearable. I don't even know if the pain is from the cancer or from the massive skin breakdown or what. She has completed 7 1/2 weeks already of radiation and has 3 treatments left but the docs said the pain and side effects can last up to months. I can't bear to see her in pain anymore. Having only 3 treatments left, I would have expected her to be in a much better state. Somebody please tell me what I can give her or do for this pain and is the skin breakdown really supposed to look that bad. The best way to describe her skin around her anus and even vaginal area is raw and reddened. Im a helpless daughter trying to do the best for my mom. Thanks for any ideas.

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

I'm so sorry to hear that your mom is suffering from such extensive burns. I had pretty bad burns myself, so I have a pretty good idea of how much pain she's in. I found sitting in the tub in warm water the most soothing. Also, she might try putting wet washclothes on her burns like a compress. Pure aloe from the plant or the liquid from Vitamin E capsules may be soothing. Any creams that contain traces of metal have to be removed completely from the skin prior to getting radiation. Perhaps traces of the Silvadene left on her skin have contributed to the extent of her burns. Creams containing zinc oxide (such as diaper rash creams like A&D) can also have the same effect, so please make sure there is none left on the skin.

I know the last 3 treatments were really rough for me, but I only had 30 treatments. I can't imagine having 8 weeks of it. My doctor considered having me take a break before those last 3 treatments, but I begged him to just let me go ahead and get them over with. Has your mom's doctor discussed taking a break with her? Even if it's for a few days, it may allow her skin some healing time. It would be worth asking about and hearing what he has to say about the pros and cons of doing this.

My heart goes out to you and your mother and I hope that once her treatment is done, she will heal quickly. I wish her all the best.

z's picture
z
Posts: 1261
Joined: May 2009

I'm so sorry about your moms pain. I used the bath tub alot and bag balm, used on cow udders. I would take a bath go get zapped, come home apply bag balm and take the pain meds. I also used the water bottle whenever using the bathroom, as that was the most painful part for me. I would rather me have gone through this than my mom, and because you posted it made me think about that. i wouldn't want my mom to have to deal with this.
Your mom has 3 more zaps and then the healing will begin. I wish you and your mom well.

lperry01
Posts: 10
Joined: Jul 2011

Thank you for you feedback.

Angela_K
Posts: 374
Joined: Jan 2011

I can only imagine what she is going through with seven and 1/2 weeks of radiation. I only had 30 treatments and was in agony in the final day and the week following. Warning: It may get worse for her after treatment. I wouldn't think that the pain is from the cancer at this point, probably the burns. I took morphine orally for breakthrough pain and wore Fentanyl patch for about 3 weeks at the end and one week following treatment.

Be very assertive when letting her doctor know what kind of pain she is having and ask them how they plan to help alleviate it.

Blessings to you as the caregiver and to your mom. The both of you and her doctors are in my prayers.

Angela

sandysp's picture
sandysp
Posts: 846
Joined: May 2011

Everyone is really telling you the truth here. I am at the half way mark of 30 treatments, or my 16th treatment was today. I too would rather be in this position than have anyone else I know and love in it. I can't stand to watch people I love suffer.

The sitz bath is a wondrous simple treatment, both using the hose and sitting in the bath. Plus I learned from this site the following strategy: Last night I propped a fan up just right, aimed it right at my very sore bottom and propped pillows up underneath me and struggled to get the covers around me while leaving my bottom open to the wind and fell right to sleep.

I cannot role pain back once it sets in. Break through pain meds should be taken as soon as the first wince. I am having a hard time learning this lesson. It means having to have a driver all the time pretty much. I hate being stoned but it's only for a few more weeks and I'll be done and so will your mom, or much sooner.

That's why I'm backing up what Angela says. Be firm with your doctor's mom and your mom. She may feel guilty taking pain medication but it is so necessary. It may take a while to role her pain back but they can do it and they should right away. Then your mom needs to stay on top of taking her pain meds like a wimp would because this isn't a normal problem. This is cancer pain and treatment pain and it has to be pushed back forcefully with good medications taken as prescribed. The "as needed" thing seems blurry - let's look at it like this - "it is needed". Try to get her to take it on time for a while, especially since she is so acute. She won't get addicted or need them forever. When she gets better she will enjoy being her old self and not want a pain pill any more than she does now that she's hurting. It's medicine and that's what it will stay. I'd bet money I haven't earned yet on it.

I am also shocked she has to go through so many treatments. So sorry. I know everyone here really feels for her. And she is in our heart and prayers.

All the best,
Sandy

lperry01
Posts: 10
Joined: Jul 2011

Sandy:

Thank you for answering my post. I see you mention when she gets back to her old self she'll feel better. So there is hope then that she can get back to her old self. Right now I see her always tired, very weak and in pain so many times throughout the day. And as you can see what I replied back to Angela, she is on pain medicine daily. And radiation is done! Ended last week. We are going to see her oncologist tomorrow August 4th and I'm curious to see what the next step is. He said at the beginning of treatment that he will need to repeat scans after radiation is done to see if tumor shrank or went away hopefully. I plan on asking him about pain management at this point. What scares me most is the amount of pain she is in despite doing all the recommendations i.e. sitz baths, pain meds, creams. We do this daily faithfully and from day one. We have used aloe creams, vitamin e ones and in the last few weeks the Silvadene because the radiation oncologist said she needed it for the extent of burn to her skin. Funny however, the oncologist said no to the Silvadene but the radiation doc said absolutely yes. Oh and we've even used Lidocaine cream per docs' orders. I also asked Angela, but how long does pain linger on once treatment is done?

Thanks,
Lorraine

sandysp's picture
sandysp
Posts: 846
Joined: May 2011

I have a sensitivity or allergy to sulfa medications. Silvadene is a sulva based medication and I can't take that either so they are giving me Radiadress gel sheets which work very well except I have a hard time keeping them. Somewhere in your file it may say that your mother has a sensitivity or problem with Sulfa medication and if so this is not a good time to flirt with the danger in a reaction.

Your mom, even with her extra weeks is ahead of me in treatments. God bless her heart for getting through all this and you! Oh I can't imagine what it has been like for you. My heart aches thinking of this being my mom. I would far rather it be me.

I finish radiation and chemo, God willing, this week. Please keep us posted on how your mom and you are doing. You are in my prayers.

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

I must have completed treatment about the same time as your mom. July 26 was my last treatment. I can absolutely vouch for the Fentanyl patch if she still needs it. Beginning dose is 25 micrograms/hour and goes up in 25 mcg increments. I also used lortab (hydrocodone) and vicodin (oxydone) for break-through pain. But the narcotics and radiation together gave me alot of nausea and vomiting. I used a new version of Zofran that is an oral/sublingual disolving slip of (something like) paper.

I've been blessed to be able to talk to a friend of a friend who completed treatment 18 months ago. She recommended Balenol (available at Walgreens and CVS) to clean and sooth. If you look it up on line, there are lots of testimonials and $2 coupon also. I am going to get some TODAY!! I used the silvadene cream too until my skin healed, and the lidocaine too. My friend who was treated said that she will be tender for quite some time. She felt significantly better at 6 months and almost normal at one year. She is in her 50's and had a stage I. I have a stage II.

lperry01
Posts: 10
Joined: Jul 2011

Hi Angela:
Thank you for your feedback and kind words. Can you tell me how long after treatment shoudl I expect her to continue in pain. She finished radiation last Thursday. Yesterday she was crying in pain telling me that she is done trying. She is taking Morphine ER in am and pm and in between Percocet for breakthrough pain. She is doing Sitz baths twice a day also and using Silvadene cream to help with burned skin. With all this, and radiation being done, I'm just wondering how long this pain lingers.

Thanks for your help,
Lorraine

melbas2
Posts: 108
Joined: Aug 2010

Hey Lorraine, it sounds like your mom is going thru hell. My radiation treatments ended Sept 2010, and I'm ready to go to Texas or Arizona because the pain is still with me. I've tried pain pills, the Lidocane, the Lidocane and the meds they give you for heart attacks, all in one cream, the Desitin, the sitz baths, yada yada yada. I bleed from my anus, I have constant diarreha, I can't do the things I used to do before this cancer took ahold of me, and I'm tired of weekly blood and platelet transfusions. I'm 50 years old and my husband is afraid of losing me. More important...I'm afraid of losing me. So my hubby and talked and after a year and a half of treatments, we're gonna go to one of theCancer Treatment Centers. I don't wish this pain on anyone. If it seems like your docs are telling you the same same thing week after week...go to someone else. Good luck to your and your Mom. Melodie

sandysp's picture
sandysp
Posts: 846
Joined: May 2011

There is such a difference in being at a cancer treatment center. I vote yes, yes, yes! I just had treatment at a local hospital and what a world of difference. Ugh! At least when you are in a cancer treatment center, everyone is being treated for cancer. And there is protocol. Also the people who treat me at MSK, with no exceptions, are terrific human beings who really work hard taking care of the patients and stay up beat. I get treated at a MSK sattelite treatment center in Westchester but they are not a hospital like the one in NYC. They can do the radiology and chemo, blood tests, ets, but not a blood transfusion. The hospital adjacent is not run by them and it's like going through the looking glass going there. But that's what was the most practical thing to do for my first and hopefully last blood transfusion. I am so worried about you having to have multiple transfusions. I believe this outcome is very unusual. I am really praying it doesn't happen to me. I am praying for you and your husband Melodie. What part of the country are you in?

Angela_K
Posts: 374
Joined: Jan 2011

For me, the pain peaked at 6 days post treatment. By the 9th day I was off of all pain medicine except for Ibuprofen, I did have some minor withdrawal symptoms that took about 3 days to shake. Please let me know how she, and you, are doing.

Dog Girl
Posts: 100
Joined: Sep 2010

Personally I had to be on round the clock morphine for about 10 days during the worst of it
and that was during the end of treatment and the next week. I took ER morphine 2x day and then IM morphine every 4 hours for breakthough pain, (and a couple of times I couldn't wait the entire 4 hours either.) My burns were really bad. My entire outside skin in my vaginal and anal area was blistered and they said I probably had internal blister as well, sort of like second degree burns.

I just stayed on the morphine because it would basically knock me out for a few hours, but the pain would wake me up and it would generally be about 4 hours later so I would take another pill. I had family and friends staying with me during that time. It was more to take care of my animals than me, because if I was eating anything at all it was maybe a milkshake a day. I mean I would be up probably a total of 2-3 hours/day, but most of the time I slept. My doc said that it was OK, because my body needed the rest in order to heal and recover. I did have to post a shedule to keep track of when I took my meds however because I would get very fuzzy. Usually I kept my meds by my bedside, but we moved them to the kitchen so I could have to physically get up and check the schedule and not OD on them which I was afraid I might do if they were bedside.

alis7910
Posts: 80
Joined: Jun 2010

Hi:
Sounds like your mom needs some specialists: wound care and pain management specialists. Everyone of us is different in terms of what works best and it sounds like you are already doing a lot for her. I am so sorry to hear that she is suffering so.

Hugs to you and your mother, and know that someday soon you will both be feeling better.

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

My doctor had me use this skin protectant called Aloe Vesta by ConvaTec. I also used compresses and hot baths. I pretty much lived in the bath tub. Best of luck.

7243
Posts: 223
Joined: Feb 2011

My pain actually didn't kick in until the end of week three and the beginning of week four. I had awful itching and awful perineal pain ... esp around my vagina and skin folds. I had a total of 28 treatments ... I took oral narcotics around the clock for the last two weeks of treatment and for about 10 - 12 days after. I hurt so much I couldn't wear underwear toward the end of treatment. I was raw on my perineum and buttock skin between cheeks, but didn't have blisters on my anus. I was so swollen I could not see my vaginal opening. I hurt inside my anus and rectum as though a round hair brush was inserted in my tail. I soaked in the tub with Aveno Colloidal Oatmeal quite a bit. No lotions helped. My radiation oncologist used domeboro's solution which helped ... I would use telfa or 4 x 4s soaked in it and placed on my skin. Sometimes I worry because I didn't have blisters on my anus ... anyone else out there not have burns on anus?

RoseC's picture
RoseC
Posts: 505
Joined: Jun 2011

I never noticed any blisters or burns on the anus, or on the vagina. On all the skin SURROUNDING them, yes, plenty of burns. Don't know why that was, maybe something to do with the type of skin on those private areas?

z's picture
z
Posts: 1261
Joined: May 2009

Hello I had burns and no blister, thank goodness. I am going to the gyno today for a perineum tear. The tear was small initially and would open then heal, this happened about 5 times since tx ended on 6-30-09. About a month ago it opened bigger, after a pabs smear, and I went to the gyno and he gave me a cream to apply and it has been healing. He wants to do a biopsy today to make sure due to my history, that it is not a cancer. After reading through the posts I found one that said the radiation makes healing difficult, and that makes sense to me. I know my anal area is discolored with a redder tint than the other tissue around it. I didn't have blisters. My perineum area was painful as well, and I think its because we are shrunk and burned via the treatment, and then everything has to be stretched back out. Don't be worried that you didn't have blisters, that would have not been good. I wish you well. Lori

mp327's picture
mp327
Posts: 3017
Joined: Jan 2010

I hope that your biopsy procedure will go well and that the results come back clean and clear for you. You are right about radiated skin not healing well. I hope you won't have any problems post-biopsy. Please let us know what you find out. Sending you some prayers!

BeaRose's picture
BeaRose
Posts: 45
Joined: Jul 2011

Hi, I am 9 months post tx. I received 33 radiation treatments ending in Oct.I returned to work as a welder in Feb. The burns were as bad as everyone says. I was given Darvon to control my pain. One week before the end I landed in the hospital for 9 days. WBC was 100 (should have been 4500-10,000. I had stopped making blood and had to have 4units of whole blood, 6 of plasma, and twelve of platelets. They had burned my intestine so I was getting no nutrition for about 3 weeks prior to hospitalization. I did turn around and pulled out of it. I started riding horses again in early June. It is kind of painful when I first get on but gets better in a short while. I may never be back to my old self but I have improved vastly. I hope for a speedy recovery for your mom as well. It is a hard fight but it can be won. Good luck to your mom.

mxperry220
Posts: 365
Joined: Mar 2011

I found Advil helped me the most with my pain. The narcotics either were ineffective or completely made be "bonkers".

janke
Posts: 29
Joined: Aug 2011

I also was one of the people with severe burns. I refused to be hospitalized for the burns. I was afraid of catching more infections. The key is to keep yourself clean. And pain meds. oral morphine was my savior.I even utilized the burn center at work. I probably have 40 creams, gels, lotions. When you have breaking blisters you have to be very careful. I have tried it all but what I truely found most effective just like most people are saying is a warm bath or sitz (kind of hard when your stoned). I think the dombros soak with 4x4 gauze helped a lot when I couldn't get up to soak. I only got dressed other than baggy cotton shorts to go for radiation apts. Because my blisters were constantly emerging breaking and oozing, I would wrap myself in a clean 100% cotton white sheet and lay on my bed with a fan to help dry the sores. Everything else would stick to me and it was unbearable to peel it off. Sometimes the sheet would get stuck so keep wrapping and re wrapping. All the Aloe, sylvadine (?) etc. only burned worse. When I did start to somewhat heal where you could touch the blisters. I found a cream by the name of xclair by align pharmacuticals. It was quite helpful to reduce itching and acted as a barrier from the dampness of the other ozing blisters. But what I want to stress the most to you is keep the area as clean and dry as possible. I used all sterile supplies such as q-tips to apply the cream and sterile gauze pads for the dombro soaks. I also limited my bathroom to ME only, and my sheets were washed and bleached frequently. Later my doctors told me they were quite impressed with my healing process and didn't think I would have come out of a inpatient confinement with such success. Don't get me wrong I am not the hero, my family was wonderful. They were my best advocates, there came a time when I could no longer cry or complain. Thank god my husband realized if I was not B#^$*#, I needed help. He insisted my doctors gave me morphine. Nothing else touched my pain. But with the morphine I could sleep the pain away. Sorry this post is so long but I believe perhaps I can help someone else with severe burns. And never forget the power in prayer and positive thoughts. I know you feel helpless to someone experiencing so much pain but you are helping them thru prayer and encouraging words more than you will ever know.

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