Tips to help prepare for Treatment?

guyfly

Jewlz said:

By now you are halfway

By now you are halfway through. Stay strong! Wishing you the best throughout the rest of your treatment. 

Flying by alright

You guys are so right, hard to believe I'm halfway through already.  All the preparations did help but honeslty I feel so lucky that side affects have been minimal.  I am on the other side with the 1st round of chemo and am feeling the burn from the radiation this week.  Thank you so much for the thoughts!  Got through mucositis and skin problems and now learning to deal with the bumm pain.  Sitz baths are helpful but what a pain to set up lol...got water everywhere!  

 

guyfly

Thank you yes!

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.

PainInTheBum

guyfly said:

Thank you yes!

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.

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!

suzycruise76

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!

Hi,

that's fantastic! Did you have chemotherapy as well or just radiation? I was hoping for the same outcome-after having 5 weeks of chemo plus radiation-but my tumor just shrunk in a half,and I had a successful surgery at the end of May 2019. After that there was not sign of cancer,so I do not have another chemo. Hope it stays this way,and wish you the same!

Suzy

oncology12345

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 

guyfly

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..

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

suzycruise76 said:

Hi,

that's fantastic! Did you have chemotherapy as well or just radiation? I was hoping for the same outcome-after having 5 weeks of chemo plus radiation-but my tumor just shrunk in a half,and I had a successful surgery at the end of May 2019. After that there was not sign of cancer,so I do not have another chemo. Hope it stays this way,and wish you the same!

Suzy

I had 2 weeks of chemo and 8

I had 2 weeks of chemo and 8 weeks of radiation.  one week of chemo the first week and then one week at the end of treatment.

guyfly

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!

congrats!

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)?

guyfly

PainInTheBum said:

I had 2 weeks of chemo and 8

I had 2 weeks of chemo and 8 weeks of radiation.  one week of chemo the first week and then one week at the end of treatment.

How'd that 2nd round go?

Same here...I'll get my 2nd chemo in another week.  How'd that go for you?  Same as the first better, worse?  I seem to have tolorated the chemo better than I am the radiation. It's weird to think I am smack in the middle of the treatment already...

guyfly

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! 

Awesome info!

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. 

PainInTheBum

guyfly said:

How'd that 2nd round go?

Same here...I'll get my 2nd chemo in another week.  How'd that go for you?  Same as the first better, worse?  I seem to have tolorated the chemo better than I am the radiation. It's weird to think I am smack in the middle of the treatment already...

Actually, my second round of

Actually, my second round of chemo was easy for me than the first.  I knew what to expect.  The one problem I had with the first one was my pump was acting up and turned out it was defective so I had to have it replaced.  What drove me nuts was hearing the constant buzz which kept reminding me of what was going on so I'd take a pillow and cover it, which helped.   I never had any nausea.  Still have hair on my head but it's much thinner.  Luckily it was thick to begin with.  Driving me nuts that it's still falling out though....hopefully should stop soon.

PainInTheBum

guyfly said:

congrats!

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)?

That is correct.  I still

That is correct.  I still have a long way to go on check ups.  Cat scan 4 months after last treatment will tell more.  But, I was happy the first check showed nothing.    The worst part of radiation treatment for me was having to drink that big glass of water and having to hold it until radiation was done.  Bathroom trips were getting to be pretty urgent.

guyfly

PainInTheBum said:

That is correct.  I still

That is correct.  I still have a long way to go on check ups.  Cat scan 4 months after last treatment will tell more.  But, I was happy the first check showed nothing.    The worst part of radiation treatment for me was having to drink that big glass of water and having to hold it until radiation was done.  Bathroom trips were getting to be pretty urgent.

yep that's tricky

Yep I hear you on the bladder thing.  they say I must have a full bladder then keep putting people in front of me and making me wait so I've learned to partial pee but it's no fun.  there is now pain with the bladder, they said it's probably my prostate swelling from the radiation.