chemo/radiation for anal cancer

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chemo/radiation for anal cancer

by CAPeggy on Fri Jun 19, 2009 12:00 AM

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Good morning all,

Today I will complete two of the six weeks (5 days a week) of chemo/radiation for anal cancer.  Even though it has been a struggle, I was doing ok til yesterday.

I came out of the treatment room and my bottom started  getting warmer and warmer.  It was uncomfortable to sit. But when I got home I went to put on the aloe gel and this is where I lost it...

I looked in the mirror and even though I new a change would take place, what I saw opened the flood gates. Horrible.

Anyone have any words of   encouragement?

Suggestions to ease this discomfort.  Does the black - charred bottom go back to normal after treatment? How much more uncomfortable will it get.

thank you,

Peggy

RE: chemo/radiation for anal cancer

by Angie42 on Sat Jun 27, 2009 12:00 AM

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Hi

I am 42 years old and was diagnosed with anal cancer on May 5, 2009.  I have just finished my second week on chemo, Mitomycin and 5FU, each requiring five days in the hospital.  I, also, receive daily radiation five days a week.  I did not really notice great discomfort until week four.  

I wish I could tell you it gets better but it doesn't.  My skin is black, I joke and say it looks like walnut wood with hints of charring!  It is hard to walk and having a bowel movement is probably the thing I dread the most.  I don't swear much but let me just say that when I have to poop, I sound like a sailor! 

 I found that desitin cream works well to sooth the cracked skin and the burning but you have to get most of it off before you go to radiation.  Ask your doc if it is ok for you to use.  I also sit it a sitz bath with Domeboro soaks or epsom salts in the tub several times daily.  That helps.  Domeboro is over the counter.

 Hang in there.  I have about 11 more radiation treatments left for a total of six weeks.  I will be very glad to be done.  Let me know if I can answer any questions or just lend a supportive ear.  We'll make it!

RE: chemo/radiation for anal cancer

by CAPeggy on Wed Jul 01, 2009 12:00 AM

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On 6/27/2009 Angie42 wrote:

Hi

I am 42 years old and was diagnosed with anal cancer on May 5, 2009.  I have just finished my second week on chemo, Mitomycin and 5FU, each requiring five days in the hospital.  I, also, receive daily radiation five days a week.  I did not really notice great discomfort until week four.  

I wish I could tell you it gets better but it doesn't.  My skin is black, I joke and say it looks like walnut wood with hints of charring!  It is hard to walk and having a bowel movement is probably the thing I dread the most.  I don't swear much but let me just say that when I have to poop, I sound like a sailor! 

 I found that desitin cream works well to sooth the cracked skin and the burning but you have to get most of it off before you go to radiation.  Ask your doc if it is ok for you to use.  I also sit it a sitz bath with Domeboro soaks or epsom salts in the tub several times daily.  That helps.  Domeboro is over the counter.

 Hang in there.  I have about 11 more radiation treatments left for a total of six weeks.  I will be very glad to be done.  Let me know if I can answer any questions or just lend a supportive ear.  We'll make it!


Thanks Angie,

I too have 11 more treatments. 6 weeks chemo, with 6 weeks radiation then surgery, more fun.  My new biggest concern now is (besides emotional issues) is what to take after surgery.  What they want to give me will probably cause permanent nerve damage. ( I forget the product names (2).. I will post another request when I get the names.  thx so much

RE: chemo/radiation for anal cancer

by mmermaid on Mon Jul 06, 2009 12:00 AM

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Hi Peggy, My name is Kim and I was diagnosed with anal cancer in October 2008. I went through 5 weeks of radiation and was only able to tolerate one round of chemo (5-FU and cisplatin). Radiation charred me also but around week 3. There are several things that you can use to help with the side effects of radiation. Over-the-counter: Aquahor-apply to the creases between your abdomen and thigh where the tissue has or will break down (this can be purchased at many pharmacy-type stores like Walgreens). Emu- Oil (purchased on-line). Soothing but very oily. Costs about $90 for a gallon. You won't need that much if your doctor prescribes Silver Sulfadiazine (Silvadene). *Avoid anything with alcohol-burns like hell. Metamucil also helps with slowing the bowels down as diarrhea will become frequent (for me it was about 6-10 times/day). It can be purchased in powder or capsule form (I prefer the capsule myself). This is something that you will have to play by ear with. Diarrhea is acidic and when you are raw, it will burn like hell. May sure that you don't overdo as you DO NOT want to become impacted (trust me here!). Start with a low dose and increase as you need to but always follow the directions on the bottle. Milk of Magnesia-use this if you are constipated. Also follow the directions on the bottle; start with a low dose then is suggested as you will end up having a large number of bowel movements and that won't make your bum feel very good. Maalox-apply it to your bottom with cotton balls. It counters the acidity of the diarrhea a per my chemo doc. Immodium-get at drug store for treatment of mild diarrhea. Prescribed medications: Silver Sulfadiazine-a topical cream (white) that can be applied to the affected site-it has antibiotic as well as anti-fungal properties (great stuff-my personal favorite). It must, however, be applied to the affected area; not healthy skin. Also, make sure that you were pads with this medication as the silver oxidizes and will stain your clothing black; the relief, however, is worth it. If you are allergic to sulfa drugs, then this one is not for you. Lidocaine 1% gel numbs up the tissue so it is not so painful (don't overuse). Anucort-HC 25mg rectal suppostitories-this precription you can use at night to help you to sleep comfortably. Must use over-the-counter lubrication such as KY-jelly. Diflucan-can be prescribed for fungal infections. Remember that you are now or will be shortly immunocompromised and fungus loves us like that. I had a month worth of fungal infections (vaginal, peri-rectal, bellybutton, etc). If you find that your bottom is burning like hell and you see that you are very red, chances are you have a peri-rectal yeast infection. You can also use over-the-counter fungal creams such as Miconazole for this in addition to the Diflucan prescription. Magic Mouthwash-oral swish and swallow to help with oral fungal infections. Contains lidocaine (numbs up your mouth if you have sores) and nystatin (helps to prevent/clear up oral candida). Personally, I didn't like the sweetness of it or the fact that you have to take it every 4 hours. But it does help. You can also wash your mouth after brushing with salt water. Also, if you do end up having a oral fungal infection, change your toothbrush frequently to avoid reinfecting your mouth with the fungus that is now on your toothbrush. The skin will heal in short time. You will, most probably, have anal fissures. These are small tears around the anal orifice. They are raw, burn, and can be very painful when you have to have a bowel movement or have diarrhea. Hopefully, your doctor prescribed some pain medication for you when things get really bad. I use the silvadene when these appear which is pretty regularly. I also try to avoid raw veggies (salad, etc.) as these cause me to have a lot of diarrhea. Also to avoid are spicy foods, nuts, berries (has a lot of seeds). I'm having a great deal of difficulty giving up raw veggies. You can still have veggies but make sure they are cooked good. Don't forget to do your research and stay on top of your treatment plan (labs, CT scans, scopes, etc. You are an active participant in your recovery. Also, stay away from sick people if you can help it; especially small children as they are little petrie dishes. It will take 6 months to a year to heal totally (as per my doctor). I am at the 6 month mark and I still have difficulty with diarrhea and fissures. I also have a lot of achy pain in my pelvis. This is because the radiation shortens the muscles and ligaments in the area treated. This seemed to start around the 3 month post-treatment phase. It seemed to get worse and worse until I couldn't tolerate it anymore. I couldn't even cross my legs it was so uncomfortable I mentioned it to my GYN doc (lovely lady) and she ordered physical therapy for me (there are physical therapist that specialize in this area). It has worked wonders for me. Additionally, contraction of the vaginal muscles that may make intercourse difficult and painful. You may find that you will have to use vaginal dilators. I would wait on that for a while as you don't want to end up with a rectal-vaginal fistula. Those are really hard to heal. I hope that this information is helpful to you. Remember though that all the above information is based on my experience. It may not be right for you. Make sure that you discuss all the options with your doctor like I did. I wish you the best of luck. If you need to contact me just send a private message and then we can chat via email if you like. Best of wishes for a speedy recovery. Kim

RE: chemo/radiation for anal cancer

by Angie42 on Thu Jul 30, 2009 12:00 AM

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Did you ever find out what medications?  What stage were you diagnoised in?  I am finally done and can I say... OUCH!!!  I was so excited the last day of radiation, little did I know the pain that would follow me.  Everyday will get better though.  I go back for follow up on Aug 25 to see if it is gone.  Much prayers.  Let me know how things are.  I wasn't worth much in the later stages of the treatment and didn't check anythig on the computer.  Just now getting back to a semi-normal routine.  Energy still sucks though.  Write and let me know how things are going and what type of surgery are you looking at?

 Angie

RE: chemo/radiation for anal cancer

by lowens60 on Sat May 05, 2012 10:55 PM

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So how are you doing three years later???

RE: chemo/radiation for anal cancer-pain after years

by dharma19 on Thu May 26, 2016 03:36 AM

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On May 05, 2012 10:55 PM lowens60 wrote:

So how are you doing three years later???

I am another anal cancer patient who had radiation therapy and chemotherapy. Several years later-actually FIVE years later, I have permanent damage to my bladder, rectum and vagina. I am in pain quite a bit. I wish to the Lord that I had known how bad this would be.  I know everyone is different. I can't have sex any longer as my vagina is shortened and contorted so badly by the radiation that it is like "a child's vagina" according to the doctor. I have no feeling there and have lost the ability to have an orgasm. I have frequent blood in my urine. I can avoid having this show up in urine tests by super diluting my urine. Frankly, I don't want the antibiotics because I have had C-Diff three times.  I have super bad diarrhea randomly.  I thank God I have an understanding doctor as far as pain relief. I have tried to stop pain meds and the only thing stopping is the severe pain. I STILL show up abnormal on CT Scans.  I am very sad from all of this. I truly thank God for letting me be with my family, but want those who still have pain to not feel guilty. Also, don't be embarrased if you have bladder or bowel control problems--it is likely from damage from the radiation or underlying disease.  I hope I don't sound too negative--I just want to give an honest response.  

RE: chemo/radiation for anal cancer-pain after years

by KROtis1512 on Fri Oct 21, 2016 04:38 AM

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My mother is nearing the end of her treatment. She just finished her 2nd round of chemo and has 10 radiation appointments left. She has had to cancel her last 3 radiations due to severe pain in her bladder. She has had bladder issues since I can remember. She is in so much pain she is saying crazy things about stopping treatment all together. She is stage 2 and the doctors seem very certain this treatment will get rid of her anal cancer. So hearing her talk about quitting is tough to hear. I guess my question is...what pain medication did you take to help during treatment for something like this? Is there anything she can do at all to help tolerate the bladder pain she experiencing?? Thank you!

RE: chemo/radiation for anal cancer-pain after years

by CAPeggy on Fri Oct 21, 2016 07:44 PM

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On Oct 21, 2016 4:38 AM KROtis1512 wrote:

My mother is nearing the end of her treatment. She just finished her 2nd round of chemo and has 10 radiation appointments left. She has had to cancel her last 3 radiations due to severe pain in her bladder. She has had bladder issues since I can remember. She is in so much pain she is saying crazy things about stopping treatment all together. She is stage 2 and the doctors seem very certain this treatment will get rid of her anal cancer. So hearing her talk about quitting is tough to hear. I guess my question is...what pain medication did you take to help during treatment for something like this? Is there anything she can do at all to help tolerate the bladder pain she experiencing?? Thank you!

Hi 

I understand her frustration.  I am a stage 3 survivor and the doctors gave me dilaudid.  Helped numb the pain for me. I too had/have bladder issues, vagina, and problems walking as I believe the radiation damaged my hips so they heat up real bad when I walk. I also had a fistula where I passed stool through my vagina. Hang in there, she'll/you'll get there..  Good Luck!!     

RE: chemo/radiation for anal cancer-pain after years

by CAPeggy on Fri Oct 21, 2016 07:54 PM

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Hi, 

You don't sound negative, you are just being honest. I am a stage 3 survivor and the doctors gave me dilaudid.  Helped numb the pain for me. I had/have bladder issues diarrhea, vagina, problems walking as I believe the radiation damaged my hips so they heat up real bad when I walk. I also had a fistula where I passed stool through my vagina.  Tough getting used to the new me...

Diagnosed  2009- Still kicking!!

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