Tips to help prepare for Treatment?

Getting through alright, feeling the burn in the bumm now and nobody told me about losing my pubes so that was a shock!  I'm a little worried that my Doctor wont prescribe pain pills and says to just take ibuprofin which does nothing for the pain. At least I have some leftover stuff in the dug cabinet lol.  The sitz bath helps a lot but what a pain to do, I just usually run a hot bath. I can actually feel my tumor inside me if that makes sense?  It was throbbing but now is a constant pain.

oncology12345 said:

Glad your doing well Guyfly  

Glad your doing well Guyfly    I like to read your posts as I'm starting treatment soon - same as you - and am trying to prep myself for it. Keep on  posting 

Hi I sent you a message...love to talk anytime. I sure know what you must be going through and wishing you all the best.  Take care of yourself.  I'm so glad for this and other places to connect with others whove gone through this.  for me, preparing helped a lot and I think is helping me just focus on getting through and staying positive.

PainInTheBum said:

My doctor does not believe anyone should be in pain.

He prescribed oxycodone even before treatment began and renewed prescription as needed.  I had to take one to two pills per day.  I took at the end of the day so I'd be able to be comfortable and get some rest.  Yes, lost hair down there but now actually enjoy it that way.   I didn't have a bathtub or sitz bath, only a shower so I'd take a small stool and put a big, low edged plastic tub on it and fill with warm water and a little epson salts inside the shower and sit for about 15-20 minutes to soak once or twice a day.  Only did that when it really got sore.  Most of the time I'd just hop in the shower and use the hand held shower head to spray lower half of my body which gave me relief.  Yes, I was able to feel the tumor inside me too.  Very early in treatment I started having some heavy bleeding but radiation doctor was not concerned.  He said it was  good sign that the radiaiton was doing it's job and killing the tumor.  I guess it did because I just had my first checkup 8 weeks from last radiation treatment and was told there was no sign of cancer.  So far so good!

Wow, thanks for posting that!  That's so good to hear your tumor is gone!  My doc said it might take another six months after treatment so not to be dissapointed if it's not gone right after treatment.  I am like I said taking whatever pain med I can find to sleep and am doing MM and CBD too but will have to quit that long before I can go back to work.  Curious, for your followup good news did they do another petscan or just a digital exam (scope)?

mp327 said:

guyfly

Good that you are trying to be prepared as possible.  I had no one to ask for advice when I went through treatment in 2008, so I was pretty clueless.  Treatment could have been easier for me had I known back then what I have learned since.  Here are some things I learned on my own and from others.

DIET:  Your appetite may crash and your taste may change, so be ready to switch things up quickly so you can keep up your weight as much as possible.  Protein is important during treatment, and eggs, chicken and fish are good sources.  Beef (with caution) if your insides can handle it.  Protein shakes and Greek yogurt are also good.  I think the main thing is eat what you have a taste for and just eat!

MOUTH SORES:  On day 1 of treatment, begin swishing with a mix of baking soda or salt in water several times daily.  If that doesn't work, at the first sign of mouth sores, ask your doctor to prescribe Magic Mouthwash for you.

DIARRHEA:  One of the most horrible side effects, especially when the bum starts feeling the burn.  Toilet paper is pretty abrasive, so wipes may be better--just don't flush them unless they are the flushable type.  There is a type of bidet attachment for a toilet that some people use.  As for trying to control the diarrhea, make sure to have Immodium on hand and if that is not effective, ask your doctor to prescribe Lomotil for you.  Try to avoid foods with fiber, primarily fresh fruits and veggies.  If diarrhea plagues you, try the BRAT diet:  Bananas, Rice (white), Applesauce and Toast (white) for short-term relief.

NAUSEA:  Hopefully, your doctors will prescribe anti-nausea meds for you prior to the start of treatment.  Take them at the first hint of queasiness, when they will be the most effective.

RADIATION BURNS:  Yes, it can happen.  I was initially given Aquaphor, but there are other things to try if that doesn't help, such as Aloe and other products, such as Domeboro.  There are many different ones that individuals have tried and found effective.  I wish I could give you more names, but please understand that my treatment was 11 years ago, so I've probably forgotten more than I remember after all these years!

REST:  I was extremely fatigued, a common side effect.  I am not a person who naps during the day, but I found it necessary during treatment.  Rest is good!

PUBLIC PLACES:  Your immune system will be knocked down during treatment, so keep in mind that going out in public, even to the hospital or treatment center, can expose you to germs, viruses, etc.  Avoid people who appear to be sick, such as having a cold, and even wear a mask if necessary.

As I said above, it's been awhile for me and I'm sure I'm leaving out some very important points.  If I think of anything else, I will come back and add.  I hope you will get the best possible news once you have your PET scan--that your tumor has not spread.  My tumor was right on the borderline of stage 1 and 2, with no spread.  I had 2 rounds of Mitomycin and Fluorouracil and 30 radiation treatments.  I am still here 11 years later and life is good--just a few little hiccups with the bowels now and then, but nothing I can't handle.  My hope for you is that 11 years from now, you will be coming back here and helping others who will just be beginning their journey.  I wish you all the very best and hope you'll keep us posted on how things go for you.  You can do this! 

Thank you for the great info and thank you for even being here to share after all those years!  That's so awesome!  Halfway through and getting pretty painful in the bumm but got through the chemo with only mucositis for about a week and pretty bad skin form bringing past sun damage to the surface.  I have used pretty much everything y'all helped me prepare with and it's so helped not having to get out and look for stuff now.  I'm still having financial problems but that will all just have to wait.  There are days it's all too much if I let my mind go there...just trying to stay focused on today.