Beginning radiation for rectal tumor

Trubrit said:

Welcome to the forum

I am sorry that you have found yourself here. 

You are wise to want to be proactive and prepared. 

Like most medical things, there are a slew of side effects that you may or may not get, depending on your reactions.  Some folks just breeze through chemo and radiation, some have serveral side effects and some run thruogh the whole gammut -that would have been me. 

While my reaction to radiation was on the extreme side, if you are interested, I would share. I won't start off with them, though. 

I don't think anything can prepare your delicate anal skin for the onslaught of radiation, but others here may disagree and share something that worked a charm for them.  When you actually go through treatment, there are several things that can help the burn. Again, it may depend on your personal makeup, what works best for you.  

One thing that I do think will come in handy is a Sitz Bath. You can get them at a fairly good price on Amazon and probably from a pharmacy. I swear I lived on mine throughout radiation. 

I also think a Bidet is a great idea. I wasn't able to have one during treatment, becasue I had to move to the big city and live away from home during radiation, but I have one here at home, and use it to this day - many times a day - it is a lifesaver for the delicate anal skin. 

I know some folks use a balm like ointment - I think its called Balmex, but there are probably several types. It is like babies Desitin. It didn't work well for me, but for others it has worked. 

I would get a bag of Depend Underwear.  I had uncontrolable diarrhea throughout radiation, and those things were a life saver - clothes saver - embarrasing moment saver. 

I also used Pure Organic Aloe Vera Gel. You have to keep it in the fridge, as it is in its pure form. It is also runny and not like the gels you are used to. It was an added bonus being in the fridge - nice and cold ahhhhhh!

Well, theres a start. I'm sure others will have great advice that differs from mine. 

I wish you all the luck in the world, and hope that you are one of the lucky ones who isn't bothered overly by the treatment. 

Oh, and I can't advice on Xeloda as I was on the FOLFOX infusion.  I do know that you need to keep your hands and feet well moisterized as the sores are terrible and once they start it is hard to get rid of them.   

I also agree that the baking soda/salt/warm water rinses are great. Mouth sores are nasty. 

Stick with us and we will help you through this trial. 

Tru

Thank you Tru. I asked at my radiology appointment if I could begin using any kind of balm, lotion or ointment. They want to wait and fix it if you happen to get something. The doctor said that if I need something, we will adress it then. I asked about a sitz bath and the nurse said no, that's not a good idea. I've read so many people say it's wonderful so I can't imagine why she said that. Then I asked about using a peri-bottle/portable bidet. Again, she kind of looked at me like she'd never heard of it. This was the nurse. I will have to ask someone else when I go back next week. 

Today I'm beginning to think it might all be more than I can handle.

Trubrit said:

You CAN do it!

It may or may not be pleasant - Cinda did well, and that could be you - but either way, you can do it. 

At the end of the day, it can feel like forever, but it does come to an end, and I sit here, Stage IV and FIVE years NED - No Evidence of Disease -  and even though it was all a Hellish experience, I do NOT regret going through it. LIFE IS GOOD! 

We are here for you.  The forum may not be popping like it was when I joined, but there are good, strong forum members here, who can help you in no end of ways.  All of us with a different story to tell. 

Tru

You have no idea how hearing the words of you & Cinda have made me feel this evening. Thank you so much!

suzycruise76 said:

You can and will do it!

Hi MeAndMine,I started same as you with radiation and Xeloda-both for 25 days/5 weeks. Regarding the radiation:on my first day of radiation at the hospital I was sent to Nursing station where I was given Proshield Plus (Dimethicone Ointment) for using on my tender skin after it starts itching/burning; they gave me bunch of flyers with many instructions and advices,among them was a recommendation to get a Sitz-Bath and start using it according to needs.And believe me,I needed it-it was very very helpful and soothing.

Xeloda:after eating the pills at home twice a day I lost my appetite completely-every food I looked at felt awful;I had known that I needed to eat,so I must had pushed myself to eat at least something....whatever felt least awful. Losing the appetite happened after first day of chemo.

As another side effect I became gradually tired to be completely exhausted and fatiqued;I had my radiation treatments at the hospital every day around noon,so I had naps every afternoon when I got home.

I did not have mouth sores,only very slight "hand and feet effect" on my 3 fingers tips in form of cracked skin.It appeared in last 2 weeks of treatment and gradually disappeared after the end of treatment.Wasn't pleasant but not too bad.

 

Looking back on those 5 weeks in early spring this year I think that I had been lucky with managable symptons.

I have to add that the nurses at radiation had been very very nice which helped me to feel relaxed and comfortable (almost ;-))

So,dear MeAndMine,do not worry and be strong! You really can and will do it!!!

All the best,

Suzy

Thank you Suzy! I already have no appetite and keep losing weight. I am trying really hard to put a stop to it and have been tracking my calories. I still am not eating enough but I did better today than yesterday.

I hope I will get some flyers or something when I start treatment. When I asked about ointment or sitz baths they seemed to think I was coming from left field. Maybe I asked the wrong person!

My surgeon did say that he would prescribe an ointment for me that is made up at a compound pharmacy that is mostly an antibiotic with soothing wax or something? I don't really know but he said I can pick it up next week. The radiation oncologist office said he wants me to use his protocol but if he's not going to give me anything, I'm going to use the surgeon's ointment daily after treatments and bathe everything off each morning before radiation. I feel like I have to do something instead of waiting to see what might happen.

I'm thankful for you guys. Seriously, I was having such a hard time today but you've given me a virtual hug and helped me feel so much better!

annie4145 said:

When you are first starting,

When you are first starting, the weeks seem so long to go through, but they do fly by and before you know it, you will be done with it.  My hospital didn't want me using anything but what they gave me, but they gave me everything I needed and lots of it.  (The only thing that I had to order off of amazon were diapers). I also bought at the store an extra soft toothbrush and special toothpaste before treatment started.  I also had a bidet installed at home, and I think that it was a good purchase. (You can get one that attaches from Amazon pretty cheap.)  I also bought little sitz baths, but I didn't use them that much.  I preferred to rest in the tub.  

(I had bad diarrhea at the end. I used baths alot in the week after treatment ended.  It sounds gross but would do my bit in the bathtub instead of the toilet because there was less burning).  My side effects were significant, but tolerable.  I was very tired, couldn't work, and lost 30 pounds.  Take your anti-nausea pills as scheduled.  The first night of chemo, my stomach was a little upset, and I decided to "sleep it off" as if it were an normal upset stomach.  That was not a good idea.  But after that, and I started taking my medicine, I had no real issues with nausea.  My hospital was very caring and supportive. 

If you have anything special that you need to do over the next 2 to 3 months, such as getting presents for people, or writing christmas cards, you can do it early and save them for when they are needed.  Anything to make your life easier over the next six to eight weeks.  It will be fine.  Keep us up to date if you feel up to it. 

They haven't prescribed me any meds other than the chemo pills. That's what I worry about. Both the oncologist and the radiology oncologist seem to be like "let's wait and see how it goes". I'm going to call the oncologist today to ask if I can get some nausea meds ready in case I need them. I really don't understand the wait and see approach. I want to be ready for it.

I've already lost 30 pounds before even starting treatment. Mostly from nerves and maybe blockage from the tumor. It feels better to not eat but I know I have to eat.

Thank you for the reminder about presents. I need to do some birthday and holiday shopping but my mind is so busy I have forgotton. 

AnneO1965 said:

First, ask your oncologist

First, ask your oncologist for the anti-neausea pills. You may not need them, but it's better to have them than not.

My doctor also gave me silverdine cream. Not sure on the spelling, but I ended up only needing it around the second to last treatment.

 

Advice I can give:

 

Take lots of warm baths.

Buy some of the flushable baby wipe type things. They will be a God send.

Drink lots of fluid.

Take it EASY... Get as much sleep as you possibly can.

 

Good luck and you WILL rock this!

Thank you! I put in a request this morning for the nausea medicine but haven't heard back anything so far. 

I just trimmed down my nails and it feels strange! The nurse counselor for the Xeloda said I should do that to prevent accidental cuts or pokes. I made sure to leave a little nail so it's not too short. I've never heard of anyone doing that before but if it helps, why not. 

He also told me to wear shoes all of the time, even at home and I kind of laughed at that but since then I've stepped on something or hit my toe on something and I realize how that little thing might be a big thing while undergoing treatment so I understand.

SandiaBuddy said:

Weight

Heading into chemo, it makes sense to me that you eat, eat, eat.  Eat what is palatable.  Eat what makes you fat.  Regaining a few of the pounds that you have lost will give you a little bit of reserve in case things get tough.  Best of luck to you.

Thank you! I've been trying to eat more but have felt so bloated from it. Yesterday I was thinking I was doing more harm than good with all of the pressure I'm feeling from it, but I still tried to get the calories up there. Maybe after treatment starts tomorrow, the tumor will shrink enough for me to eat more even with the side effects I may have from it.