CSN Login
Members Online: 9

Issues and Helpful Medications - for new folks to the board. (Anyone and everyone please add to the list...)

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

One thing that would have been helpful to me up front was a little bit of knowledge about some of the side effects of chemo or radiation and medications that may help. So I thought maybe we could begin to put something like that together for new folks and have begun a list below which I hope everyone will add to!

Mouth Sores - Calling these things mouth sores (which sounds innocuous) is a misnomer. These are actually the sores from hell. I could not eat or talk for 3 days and the sores actually lasted about 10 days total. I used the following two medications following the first round of chemo (the only assistance to me came in the form of the topical anesthetic - these did not cure the sores themselves) 1) Magic Mouthwash (In Atlanta this is a mixture of Benedryl, an anti-fungal, and lidocane.) 2) A mixture of maalox and lidocane which worked better for me in killing the pain. I used a spoon to coat only the specific areas affected. (For me it did not get my whole mouth at once thank goodness, but moved from site to site. The worst was when it hit the underside and sides of my tongue in the back of my mouth (rubs on the teeth - horrible), and my uvula and esophagus. I just started my second round of chemo and my Oncologist gave me samples of a mouthwash you start just prior to and during chemo which supposedly prevents these sores (Jury is still out I just started...) This is another mouthwash called Caphosol. Insurance will not cover it in all cases (mine would not, and a week's supply was going to run about $200, so I was thankful for the samples). For more information check www.caphosol.com and I'll plan to post once I finish chemo this week as to whether or not I got hit with mouth sores after using it.

Itching - This just about drove me crazy particularly in the female area. Proctofoam worked well for the internal piece (Can be used for both the vaginal area and the anal area)and I used lidocane externally.

If you have a port and or do not like needles - be sure to ask for some lidocane cream to rub on - use it roughly an hour before your appointment and you should not feel anything. I am a big sissy as far as needles go.

Painful urination - When you have anal cancer you get an up close feel for what babies go through with diaper rash! No wonder they scream like they are on fire... Many folks use a water bottle and just run it over the area when urinating. My Dr. was kind enought to give me a prescription for Pyridium (200mg) this turns your urine orange but you will not experience any burning whatsoever. (Two tabs a day.)

steve714's picture
steve714
Posts: 15
Joined: Feb 2010

Hey cbs hope you are feeling better. Chemo sent my mouth on fire. I had to spend 4 days in hospital cause I could not even take water. I was so weak ,scared, and fed up I got very depressed. Now, three weeks later I can drink, taste almost half of what I eat and can drink without any problems! I am begining to see why when people hear they need chemo, they cry! But, I Am coming out the other side and now if I can make it through rad i will have done it ! Keep looking forward hour by day by week and trust me you will get past this. Good luck Steve PS Make your Dr treat the pain!!!!

z's picture
z
Posts: 1257
Joined: May 2009

I am so glad your able to eat and drink without any problems. Remember this tx will cure you, and once your radiation is complete you will heal quickly. Lori

z's picture
z
Posts: 1257
Joined: May 2009

Yes, I had them felt like I was brushing my teeth with nails. As you said mine also subsided after about 10 days. My dr gave me a rx for the sores and that cleared them up. I didn't get mouth sores on the 2nd go around of chemo. I attribute the mouth sores to the mito, as I have no medical evidence of that, but the combo of 5FU and mito, I think does it. I wish you well with the 2nd go around of chemo. It just feels great to get the pump off. With the urination, I also used the water bottle, which helped and the pain meds. I wasn't given an rx to help with the urine. After I was zapped I would come home and use bag balm (used on cow utters), which was very soothing. Just remember that this tx will cure you, and as soon as your radiation is over, you will begin to heal quickly. I wish you well. Lori

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

wish I had stumbled upon something like this when I started down this road!
My three main issues were: dehydration, painful urination and ITCHING!

I had continuous diarrhea post radiation/chemo and was not drinking nearly enough to make up for what was being lost. I also would have benefited from drinking more liquids with electrolytes and nutrients as opposed to so much water. It was just that water was the only thing that I wanted. In retrospect my reluctance to take the pain medication also worked against me because the medication would have induced semi-constipation which would have compensated for the perpetual diarrhea.

I now know that part of the painful urination was due to the dehydration. So drink, drink, drink, even if it means you will pee, pee, pee! The urine will be less concentrated and will burn less. The water bottle was a wonderful tool for me as well.

And the ITCHING! It was the worse at bedtime. Perhaps that was because my brain slowed down and I didn't have distractions to make me less aware of it. OMG I tried everything under the sun and the only thing that really gave me any relief was taking benadryl for allergies about half and hour before turning in. It was the only thing that kept me from really going bonkers!

Hope these tips help all who are just beginning this unexpected journey!

duckyann
Posts: 162
Joined: Jun 2009

I also had really bad mouth sores the first round of chemo. I used the "magic Swizzle" and it helped but I hated the taste. My oncologist also prescribed "Nystatin" (sp?) and it helped the sores heal faster. The second round I did not have mouth sores but my oncologist actually prescribed "duflican" (I think that is what it is called) and I took it for a couple of days at the start and never got even one sore.

A month before radiation even started the radiation oncologist gave me a lotion called "Special Cream" and told me to use it twice a day even before treatments started and to continue after they started. The first 3 1/2 weeks I was fine and the 5th & 6th week the burns got bad. They then prescribed Sulfa Silverdine. This helped. The itching nothing helped me with that. I also took imodium and lomotil for the diarrhea.

Chris3
Posts: 53
Joined: Mar 2010

My mouth sores started to get bad in the 2nd week. I had difficulty eating certain foods. Started using the Magic Mouthwash - not good tasting stuff - and the necessary numbing feeling was unsettling. My volleyball team took me out to lunch at Dairy Queen on Wednesday of W2. I had been taking swishes of MM throughout the morning hoping I would be able to eat lunch. I ate half of my lunch with a moderate amount of pain. They someone bought me a Hot Fudge Sundae - now THAT worked some Magic! My throat felt great the rest of the day and for the balance of the week. So, now I plan on using DQ as part of my regular treatment!

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I wish I had known the benefits of DQ hot fudge sundaes when I was undergoing tx. I'm always looking for another excuse to go to Dairy Queen! However, I do remember that when my ability to taste food took a dive, it was the salty foods that I could taste and tasted like they should. Sweet things didn't taste good to me. I had a carton of triple fudge ice cream in my freezer that went untouched for weeks. Trust me, that never happens!

pdees
Posts: 13
Joined: May 2011

I am into my second week of treatment. I had the cadd pump for the first 4 days. 2 days after they took the pump off, I felt like my mouth was on fire. Throat hurt, side of tongue. Couldn't drink or eat. Swallowing is so painful. Monday I was prescribed a mouth wash and some lidocaine to numb the mouth so I could eat. It helped some but still had a hard time swallowing. The next day I was prescribed some liquid hydrocodone(sp) for the pain. It too has helped some but still not there yet. I guess I was expecting instant relief but should have known better. One good thing, I have lost some weight that I had been wanting to for a long time HeHe. Gotta keep a sense of humor. Other then my mouth, I feel pretty good, so far. Now lets see what the radiation does to me. So far so good. So glad that I am not the only one with this problem. Just hate that anyone has to experience this.

z's picture
z
Posts: 1257
Joined: May 2009

I see where you said you have lost some weight. I did too through the chemo portion. I needed to lose the weight also. I have unfortunately gained it back and then some. I know that with the chemo I had no craving for sugar at all. I couldn't stand anything sweet, and I really don't understand why. I have since gone back to ice cream, but must stop eating so much of it. Week 2 will be over before you know it. I know I felt so much better after the chemo was taken off. I wish you well. Lori

sissy310
Posts: 300
Joined: May 2010

I count myself so very lucky, I did not have mouth sores. I did however suck on lemon drops a lot (worried about nausea and someone suggested that) as well as brushed with biotene toothpaste and mouthwash. Started this before treatment. Whether that helped keep the mouth sores at bay or whether I just would not have gotten them anyway I will never know. Just thought i'd add that just in case. The itching for me was almost to the point of wanting to scream. I found sitz baths soothing and I actually slept naked from the waist down with a fan on my bottom and would put a cool clean washcloth over my private parts like a loin cloth. I found relieve with that. The cream that helped me was hydro-cordizone for the itching and aquaphor. Still, I found living in sundresses and very very large boxer shorts to be more comfortable than not. Painful urination was helped by using a bottle of water that I poured on me as I went. I am not ashamed to admit there were times I peed while the shower was on only because it was not painful. At that point I did not care - I just wanted some relief. I kept a crisis kit with me at all times that I put together before treatment that was filled with all the information everyone on this site gave me of what helped them. I figured I would be better off doing that and having it there than experimenting later. It paid off and I still thank everyone to this day for that advice. Marilyne

Angela_K
Posts: 374
Joined: Jan 2011

Using a peri-bottle with lukewarm water to clean myself and then gently PATTING myself dry with soft paper towels was SO MUCH better in the long run than using baby wipes. My radiation oncologist suggested this method when my sensitive skin became extremely chapped very early in treatment. I discovered that the A&D diaper rash ointment worked best for me (ZINC FREE)with the brown and yellow lettering out of all of the other ointments. Stinky as it was.

If I was on the go I took paper towels and the peri-bottle in my purse.

Also air drying my bottom whenever possible helped tremendously.

Much of my "free" time was spent bending over the air conditioner in my hotel room! :)

selena123
Posts: 10
Joined: Jun 2012

Burns/Itching:

Radiation nurse recommended using Aloe Vera (pure, from natural foods store, keep in fridge) and Aquaphor from the first day of treatment. That helped prevent a lot of pain - especially the aloe which was soothing.

The itching was terrible for a while. I took a lot of oatmeal baths which helped. I also peed in the tub before I got out which helped the intense stinging quite a bit. I tried taking Benadryl orally which worked for a short time. A nurse recommended Benadryl ointment which was effective.

I was lucky to have many different people on my team - each seemed to offer different suggestions and I tried them all. A radiation doctor suggested Domeboro - an astringent that you soak guaze in and lay over burns for 10-15 minutes. I would then apply Silver Sufadiazine cream onto the raw burns that a nurse practiotioner prescribed. Everyone was impressed with the rapid healing of my skin as a result of this routine.

As everyone noted because it's important, all cream, gels, ointments need to be carefully removed each day before you go for radiation,

Mouth Sores:

I hated these! The Magic Mouthwash I hated also - and they gave me about a quart of the stuff. The nurse practitioner suggested I dilute it and apply to sore spots with a Q tip which was better but another radiation doc prescribed straight Viscous Lidocaine, again applied with Q tip which was the best. I'm only a few days out of treatment and my taste buds are still wacked out.

Pain:

We went all over the place with this, finally settled on routine of Fentynyl patch (.75) and Oxycodone. The patch was changed every 3 days and we will be cutting back to .50 in a few days. I started out cutting oxy 5s in half about once a day and ended up taking (4) 5's every 4 hours around the clock. I have weaned down to (3) 5's every 4 hours and will continue gradually cutting back. I need to be drug free in 3 weeks when I go back to work.

I stayed in touch with my primary nurse and needed to be hydrated 7 or 8 times which helped with how I felt overall.

That's it for now. As I said, I am just a few days out of treatment, now fighting fatique, zero appetite, and a terrible hemorrhoid that has been with me since diagnosis and is driving me crazy! (primary care doc prescribed Proctosol-HC 2.5 which hasn't helped yet.) Also feel constipated. I'll take any suggestions!

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I'm glad you are finished with your treatment and I hope your healing happens quickly. In most cases it does. The constipation issues may be related to your pain meds, so hopefully it won't be an issue for you once you are weaned off of them. I never dealt with that, as I had the opposite--lots and lots of diarrhea. Thank you for all the suggestions you have offered to anyone here who is currently in treatment. The information people get, the better. I hope you continue on the road to recovery and I wish you all the very best.

kirby77
Posts: 48
Joined: Jul 2012

Last Friday, only two weeks in I began having symptoms of proctitis. Starts out with a not so normal soft BM to another and then the rest of the day by a lot of sitting. I am on the toilet because I have the constant feeling that I need to defecate. Sometimes it's a small amount of liquid stool and a several times mucous. Since Friday, it's been compounded by urinary retention, and frequency.
I feel as if hemorrhoids are flared up too. I am applying the Aquafor externally, and sitz bathing too. In fact there are times to empty my bladder fully, I can only do so after Sitz bathing.

My radiation doctor suggested preparation H, is there something more I could be doing. I have a long road in front of me. She plans to administer 36 treatments at 1.8 Gy. I am only at the beginning of week 3.

I am tethered to the bed and home, I don't feel like I can walk or go any further due to the constant need to go to the toilet. It also hurts after straining or actually having a BM, I am hesitant to take pain meds due to constipation. Plus the pain doesn't feel severe enough after sitz bathing.

I read a lot of good suggestions from the women, in terms of peri-bottles and other suggestions for the men among us. Does Proctofoam work?

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I don't want to seem like an alarmist, but your statement that your doctor plans to do 36 treatments at 1.8 gy each is most troubling to me. In all the literature I have read, including the NCCN guidelines for treatment, the maximum amount of gys given should be 59 or less. My math tells me your rad onc intends to give you a total of 64.8 gys. You really need to ask her about this. I was told that giving more than the max dose would result in permanent damage to the anal area and sphincter, most likely resulting in bowel incontinence and necrosis. PLEASE print out those guidelines, read them and take them to your doctor. Too much radiation is not going to be a good thing.

I had very painful BM's during treatment too, along with painful urination. I wish there was some magic resolution for this, but I haven't found one yet. You might try applying some Lidocaine cream to the anal area prior to a BM to numb things up a bit.

My main concern for you right now is the radiation dosage. Please talk to your doctor about this tomorrow and get your hands on those guidelines.

kirby77
Posts: 48
Joined: Jul 2012

Last Friday, only two weeks in I began having symptoms of proctitis. Starts out with a not so normal soft BM to another and then the rest of the day by a lot of sitting. I am on the toilet because I have the constant feeling that I need to defecate. Sometimes it's a small amount of liquid stool and a several times mucous. Since Friday, it's been compounded by urinary retention, and frequency.
I feel as if hemorrhoids are flared up too. I am applying the Aquafor externally, and sitz bathing too. In fact there are times to empty my bladder fully, I can only do so after Sitz bathing.

My radiation doctor suggested preparation H, is there something more I could be doing. I have a long road in front of me. She plans to administer 36 treatments at 1.8 Gy. I am only at the beginning of week 3.

I am tethered to the bed and home, I don't feel like I can walk or go any further due to the constant need to go to the toilet. It also hurts after straining or actually having a BM, I am hesitant to take pain meds due to constipation. Plus the pain doesn't feel severe enough after sitz bathing.

I read a lot of good suggestions from the women, in terms of peri-bottles and other suggestions for the men among us. Does Proctofoam work?

selena123
Posts: 10
Joined: Jun 2012

This support network is so helpful - especially for this cancer which carries stigma thanks to all of the (not helpful) info about causes including "many sexual partners". Even the American Cancer Association lists this and it makes it so difficult to talk about, I can't even do it. I have been happily married for 29 years, thank you very much.

I know it's not my fault, etc., but I really feel like this is the one of the only places where I can discuss my cancer openly, thanks to the wonderful support of people like you!

joane0328
Posts: 13
Joined: Aug 2012

Yes, I too feel the stigma, and have found it best to be upfront about this, because people do "google" anal cancer and read the statements relating anal cancer to people who have anal sex, multiple sex partners, HPV, HIV.... and for me, is not who I am. I was somewhat promiscuous in my younger years, and do have a history if IV drug abuse when I had access to IV drugs as a nurse. I used clean needles and have drugs from a vial. I was tested for HIV in 2002, and Hep C and both were negative, and always had a clean pap smear.

I guess, however, at this point in time, that is not my battle to fight, or to worry about what others may decide after reading the info that is out there about anal cancer.

It really does not matter how, the focus for me, is to stay positive) and just make it thru the treatment and hopefully come out better on the other side of this journey.

StruTanToot
Posts: 108
Joined: Aug 2012

This information is very helpful. I started treatment yesterday (Monday). How many days until the mouth sores present?

Thanks!

Marynb
Posts: 1134
Joined: Aug 2012

Try to start rinsing your mouth salt water rinses now to prevent mouth sores. At least 3 times a day. Warm water with 1 teaspoon of salt.

torrance
Posts: 118
Joined: Jan 2012

I was fortunate in that I didn't have them. My chemo nurse had me drink some ice (super duper) cold water before the administration of the Mito. Once I drank it I chewed on ice chips for a little bit and throughout the adminstration. She explained that the fridged temp cause the blood vessels to dilate helping to keep the drugs from reaching the gums. It sure worked for me. I continued with the mouth rinsing as well. Hope that helps.

Marynb
Posts: 1134
Joined: Aug 2012

Before my treatment began, the oncology nurse spent a lot of time with me teaching me how to avoid these issues. Also, the hospital had a class on dealing with chemo, which was great. I had my teeeth cleaned prior to treatment. I started with warm salt water rinses several times a day prior to treatment and continued throughout treatment. I never had any issues at all with mouth sores.

I never took pain meds. My body does not react well to meds like that. I did use Tylenol before bedtime. I used the sitz baths several times a day! It helped soothe everything down there so much. I used it whenever I needed it. Room temperature water, nothing in it. I also, That handheld shower was so necessary. I kept that area clean as possible. The nurse told me that Dove Body wash for sensitive skin was evidence based. I used it sparingly in the shower. I seldom used the aquaphor cream, but there was one week at I used it every day.

For me, the less chemicals I put into my body, the better I did.

I did not blow dry my hair for 3 months. I used baby shampoo. I did not lose any hair (on my head).

Marynb
Posts: 1134
Joined: Aug 2012

Before my treatment began, the oncology nurse spent a lot of time with me teaching me how to avoid these issues. Also, the hospital had a class on dealing with chemo, which was great. I had my teeeth cleaned prior to treatment. I started with warm salt water rinses several times a day prior to treatment and continued throughout treatment. I never had any issues at all with mouth sores.

I never took pain meds. My body does not react well to meds like that. I did use Tylenol before bedtime. I used the sitz baths several times a day! It helped soothe everything down there so much. I used it whenever I needed it. Room temperature water, nothing in it. I also, That handheld shower was so necessary. I kept that area clean as possible. The nurse told me that Dove Body wash for sensitive skin was evidence based. I used it sparingly in the shower. I seldom used the aquaphor cream, but there was one week at I used it every day.

For me, the less chemicals I put into my body, the better I did.

I did not blow dry my hair for 3 months. I used baby shampoo. I did not lose any hair (on my head).

Marynb
Posts: 1134
Joined: Aug 2012

Before my treatment began, the oncology nurse spent a lot of time with me teaching me how to avoid these issues. Also, the hospital had a class on dealing with chemo, which was great. I had my teeeth cleaned prior to treatment. I started with warm salt water rinses several times a day prior to treatment and continued throughout treatment. I never had any issues at all with mouth sores.

I never took pain meds. My body does not react well to meds like that. I did use Tylenol before bedtime. I used the sitz baths several times a day! It helped soothe everything down there so much. I used it whenever I needed it. Room temperature water, nothing in it. I also, That handheld shower was so necessary. I kept that area clean as possible. The nurse told me that Dove Body wash for sensitive skin was evidence based. I used it sparingly in the shower. I seldom used the aquaphor cream, but there was one week at I used it every day.

For me, the less chemicals I put into my body, the better I did.

I did not blow dry my hair for 3 months. I used baby shampoo. I did not lose any hair (on my head).

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network