Radiation getting Unbearable

[momsCancer]

Mom's completed 22 of 33 hits of radiation. This weekend the burns have started to become pretty miserable. Now on Wed. it's unbearable. The doc says not to miss any treatiments but she won't give her anything to help. She says use aquafor which we've done from the beginning. It coats but doesn't relieve. Now she said to get Tuck's Wipes. We got some to try but why can't she just prescribe something to numb it. Also, the bumps are getting bigger and itching worse. There's got to be something that will help. Makes me so mad!

[Guest]

Hi there,
I have used this for after waxing and I know they use this cream for laser peels. It works great but I am not sure if it is safe for areas that your mom needs.
I am so sorry to hear she is in pain. I think seeing a parent in pain is up there with seeing your child in pain. It is just plain awful.

Here is the name of the cream you can look it and see if it would be o.k. for her to use, LMX 4% Topical Anesthetic Cream. I think there are a few of these creams some maybe stronger than this one.

Hope this helps!

[weisssoccermom]

Unfortunately, once you are burned from radiation, particularly in the pelvic region, it is difficult to do much for it. It makes me so mad that the rad oncs don't tell people ahead of time because there are many many options out there to avoid getting burned. In my opinion, Aquaphor is useless. Try aloe vera-pure and clear, no dyes no alcohol. You need to know that alcohol is a big no no on radiated skin. Radiation not only burns, but dries and thins the skin out. Moisturizers are good, IF your mom can tolerate them at this point because she is burned. Try finding out without alcohol or with a very little amount in it. I also highly recommend pure cocoa butter to help with the burning and other issues. One moistureizer you can try is Johnson & Johnson's 24Hour Softlotion. Can usually be found in the baby aisle. To help protect certain areas, use either bag balm or desenex. However, WASH EVERYTHING off completely before the next treatment. Make sure your mom is staying very well hydrated to help with other issues. Also, try and find this Radiagel or Radiacream by Carrington Labs. It also comes in a Rx strength, but you can order the radiacream directly from Carrington on their website. Tremendous product. Another thing is to make sure your mom is NOT using regular soap. Use only gylcerin based soaps. All of these, however, might just be too painful since she is already burned.

Also, since anal/rectal squamous cell is treated differently than adenocarcinoma, I might suggest you check into this yahoo group designed specifically for them. When I was first diagnosed, I didn't realize the difference and only saw the word rectal and joined. I am still a member and am so impressed with their compassionate, knowledable and informed members.

http://health.groups.yahoo.com/group/anal-cancer/

You will have to join, but just ask questions, go through their databases, etc. Wonderful group of people and very helpful.

Jaynee

[bradyr]

my underarm burns weren't nearly as bad, but waht I used was the pure aloe vea (clear with no achole) and the Udderly Smooth cream and I covered it frequently with a fresh dressing.

[NWgirl]

You've gotten some good suggestions already. I can't add anymore as the cream I used which was most effective is prescription and if the doc won't write a presciption, that won't help. How frustrating. Just want to let you know how sorry I am to hear your mother is in such discomfort. Radiation is really tough to get through. I hope that some of the products the others have suggested provide her with some relief.

[bradyr]

what is the drug that you can get on perscription called? perhaps if they asked the doctor directly for this medication, (or another doctor) they might get some help.

[NWgirl]

The cream I used is called Silver Sulfadiazine Cream 400GM. It was prescribed when my genital area started to get raw. I couldn't urinate without excruciating pain - I'm talking on a scale of 1-10 this was a 9. I cried every time I had to go. So I would urinate, then use a non-scented baby wipe to gently pat off any residue, then dry gently with toilet paper, then apply the cream (each and every time I had to go). It did give me a lot of relief from the pain. Not 100% relief, but I could hardly function without it.

As Jaynee mentioned in her post, I did have to make sure there was nothing on my skin when I went in for the radiation treatment as they said it would actually cause more of an irritation when they did the treatment. So I would carry my cream with me and as soon as I had completed my daily treatment, I would go into the bathroom there and slap on the cream.

[Joy]

I had 28 rounds of radiation with continuous 5FU. On round 20 my radiologist put me on a 1 week vacation because I was so burned and my diarrhea was horrendous. I subsequently completed treatment.

My only salvation was "sitz baths" - a plastic pan which sits on top of the toilet. I used to fill it with nice luke-warm water and soak my poor butt.
I was also given a prescription for a cream. (sorry can't remember the name).

To this day 2 years later I still have issues with radiation burns on my "tail bone" . I always use baby wipes, if I use "cheap TP" in a public washroom my skin breaks and I have bleeding.

I think that radiation was the worst part of my journey.

I do feel very sorry for your mother,

Joy
Stage III rectal 2 nodes
LAR January 2006
2 rounds of Folfox, 28 rounds of radiation with 5FU,6 rounds of Folfox
NED

[lorrainem]

All the ideas and one more thing: have they prescribed oxycodone or percocet? My burns were all internal so that was the only thing that gave me the best relief. I was given creams and "salts" for sitz baths, to no avail. I only got the external burns later on, immediately following surgery, and they were/are manageable with Balmex (baby cream.) I also put a tri-folded cloth baby diaper inside my underthings to cushion seating, and carried around a donut cushion. Seriously, I was in pain!!!!!
Best wishes for her and you. You will get through this.

[momsCancer]

Thanks for all the suggestions, She's in so much pain and I'm just flat out mad. A couple of weeks ago when it was sore but not unbearable, I asked the radiologist for the Silver prescription stuff (can't think of the complete name) but I took the name of it to her. Someone suggested it from a previous post. Anyway, she said Mom didn't need it now. She looks better than other patients, and to wait. She also said that she doesn't like prescribing the silver stuff b/c it's hard to get off. If it helps give it to her and and we'll make sure its off for radiation. At the beginning, doc told her that the most important radiation sessions are at the end, that it would get painful but not to quit. She said that it was our job to get mom there and she would do the rest. I'm talking to the doc letting her know mom's pain level and that she's asking Dad and I to let her stay home. I'm taking her everyday but with 11 left, somethings got to give. She's all swollen, itching from the bumps, her skin from inside her thighs, front to back is a burgundy color. The heat coming off it is intense. She had diarrhea on saturday so bad that she couldn't make it to the bathroom and just cried with it all over her clothes and on the floor since she can't wear panties. She took immodium and hasn't gone at all since. She's scared to take a laxitive with the radiation each day and chemo (5-FU and Mitomycin) Today I brought mom home and gave her a dose of hydrocodeine and an anxiety pill. She slept a lot and would wake up to pee (ouch); apply more of over counter crap, and to drink water. One more thing, I don't think the doc likes me researching and asking so many questions This week I asked about the dialators b/c of the post last week. She said not to worry about it until treatment is over. The nerve of me to ask questions.

[bradyr]

i think the painkiller pill perscription is perfectly reasonable - I'm given pain pills for the pain my bones from cancer - when It hurt so bad in the begining that I couldn't lay still on the radiation table my radiation doctor gave me something called ACT - basically morfine on a lolly pop.

why can't your mother's doctor at least give her the pain pills.

I think you should visit another doctor and ask for a 2nd opinion - I can understand you're being mad. this doctor sounds almost heartless.

[momsCancer]

prescribed oxycodone or percocet?

No, radiologist has not prescribed anything. Mom has hydrocodeine given by the onc for last chemo's mouth sores. But I think I'll print off this complete thread and beg for her help, REAl Help!

[bradyr]

remember, you don't have just beg - you can leave this doctor and go to another - yes there that would be a break in your mother's radiaton treatment, which would be a complication for the next doctor, but you are the patient and you can "vote with your feed" and leave her care at anytime and get a new doctor.

the only complication is this doctor has you a little over a barrel that she has started this treatment and it's much harder now to switch to a new doctor.

but only harder - not impossible

pain relief is the right of any patient, this doctor wanted to take a wait and see position on the cream (becuase she though the inconvience of removing it was more important than her patient's pain releif) some form of pain relief seems like the the least she can do now. if this doctor can't see that, I'm certain there are any number of other doctors who surely would.

and regardless, I would switch doctors after this whatever the outcome. clearly this is not a doctor who is working as a partner in this treatment plan, but running the show how she sees fit.

I'm not trying to inflame the situation here, but it is important I belive that you and your family take charge from this doctor.

[NWgirl]

I hate to say this, but this doctor sounds cruel. When I went through radiation I had a lot of difficulty as well, but my radiation nurse would meet with me at the drop of a hat (which for a couple of weeks was every single day) to try to find a medication or other procedure to help me deal with whatever side effect was bothering me at the time. And the doctor was available as well if either myself or the nurse felt she couldn't adequately address my issues. They were very compassionate. I had tons of prescriptions - all for different issues and if one didn't work we quickly moved on to something else.

I brought up the vaginal dilator thing and the nurse told me they would normally discuss it after treatment, but as I brought it up and wanted to discuss it earlier, they were more than happy to discuss it and answer any/all of my questions at that time. After treatment we went over it again and I got specific directions on what needed to be done.

Of all the professions to have a poor bedside manner, a radiation doctor, yikes. I am so, so sorry your mother is having to go through this.

[NWgirl]

P.S. - the silver sulfadiazine cream is NOT difficult to get off. Before I went in for treatment I would take a shower with soap/water and poof! It came off - no scrubbing, no nothing, it just washes right off. Where the doctor gets the idea that it is hard to get off is beyond me. Cruel I tell ya.