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Soreness

UncleBuddy
Posts: 662
Joined: Aug 2013

These are the chemo drugs my brother takes: 5 -FU every 14 days, irinotecan every 14 days, leucovorin every 14 days, 5-FU over 2 days (infusion pump) and erbitux once a week.  He is also on diphenhydramine and famotidine, zofran, and dexamethasone. Also atropine for the irinotecan. 

He is going to the bathroom a lot. He is taking imodium, but he says his butt is raw. I told him to use Desitin until he sees the doctor on Monday. Do any of you have any suggestions?

My heart goes out to my brother. I am having a hard time with all of this. He is such a good person, has been through so much already, I am so angry that he has cancer yet again. I try to keep positive for him, but it's tough. He's intellectually disabled , and although I've tried to explain this all to him, I don't think he grasps how serious this is. Monday I have set up an appointment with a nutritionist for him, hoping this will help, but he has the mentality of a child and just doesn't get it. I keep wondering if his diet is making things worse. i told the nutritionist that she has to be very direct with him and explain what he needs to do. 

Lin

Lovekitties's picture
Lovekitties
Posts: 2960
Joined: Jan 2010

Your brother should have an after hours number for his oncologist and his surgeon.  He should not have to wait until Monday visit to get some recommendaitons on help.

As for nutrition, it is very difficult to think of eating when you know that pain will come after.  Unless he has other dietary restrictions perhaps he could add Boost, Ensure, Glucerna or other enhanced drink to help with nutrition.  You might also ask if he can take any pro-biotics to help get the good digestive bacteria back in his system.

He should also be able to take more than the recommended dosage of the imodium...with the doctor's approval...as I know others on here have.

In all cases run all these things past his doctors before doing.

Others will be along shortly to give their own experiences with these issues and what helped them.

Hope he finds relief soonest.

Marie who loves kitties

UncleBuddy
Posts: 662
Joined: Aug 2013

My dad came by to drop off some paperwork for my brother, so I found this out this afternoon. His doctor did tell him to take a stronger does of Imodium. I will take your advice and give her a call. He has been through so much already, I don't want him to be uncomfortable. I thought I'd give the Desitin 24 hours, but she may have something stronger. Thanks for the advice. I will ask his doctor about all of this. This is why I love this site. :)

Is this normal for these drugs. I know last time he had chemo, he was pretty much fine until his last round.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i use the BRAT diet (bananas,rice,applesauce,toast)and it usually slows my bowels down also i take a hot shower and after i put A and D ointment on my hiney all this works for me ,he may have to try a few different things before he finds what works for him.hang in there it is a rough road we have to travel...Godbless...johnnybegood

herdizziness's picture
herdizziness
Posts: 3440
Joined: Apr 2010

if you get him some "sensitive cleaning wipes" (wet wipes that are flushable) this will help with the hi end issues much better then toilet paper, and as suggested A and D ointment is what I use as well, works better then Desitin in my opinion?  And Marie pointed out the more then normal usage of Immodium usually prescribed by the onc.

best of luck in helping get this issue resolved.

Winter Marie

lp1964's picture
lp1964
Posts: 862
Joined: Jun 2013

...BRAT diet.

Also he is taking so much drugs. Ask the oncologist if reducing the dose by 25% were possible. Many patients here got a big relief after that.

Wish you guys good luck. You are an awesome brother. Try to be more proud and less angry. This isn't fair, useless to feel guilty or angry.

Laz

UncleBuddy
Posts: 662
Joined: Aug 2013

Laz

I am a sister, LOL. I am very proud of my brother and how he is handling all of this. I am angry at the diease, no one else. I am just venting, I never, ever show this to my brother. I am taking him for his chemo treatment on Monday, I will find out about reducing the amounts. I think they are hitting it hard because he is stage 4.

 

Johnnybegood and wintermarie, I will see if the A&D is better. I'll suggest it to him. I will also suggest the wipes and BRAT. He tells me he's going a lot, but didn't say it was diarreah, so I should check that with him. I know the dr told him how much Imodium he can take. I just assumed it was loose. Ugh, I'm trying...

Chelsea71
Posts: 1170
Joined: Sep 2012

Dear Lin,

It does seem so unfair that he has to deal with stage four cc in addition to having a developmental disability.  Life has thrown him several major curve balls.  It sounds like he is a very special person.  It's great that he has a wonderful sister in his corner rooting for him.  Sadly, it seems to be a benefit to patients who have a strong family advocate.  It sounds like your a wonderful advocate on your brothers behalf.  Stay strong for him.  Life can seem so cruel, at times....

 

Chelsea

 

UncleBuddy
Posts: 662
Joined: Aug 2013

He had Non-Hodgkins Lymphoma in 2000, and got past that. He started out with CRC stage 2a in 2011 and was NED for almost a year, but then he was diagnosed with stage 4 because it went to lungs and liver. He can't seem to get a break.

Thank you for your kind words. He is such a sweetheart, it's hard not to be angry for him.

lp1964's picture
lp1964
Posts: 862
Joined: Jun 2013

Maybe your username confused me. Plus I'm not American.

He is lucky to have you.

Laz

UncleBuddy
Posts: 662
Joined: Aug 2013

That's okay. He is Uncle Buddy, I am Lin. I am on here trying to get as much information for him as I possibly can. He doesn't have a computer or know how to use one, so I do it for him.

Thank you very much! I am just trying to help him any way I can. 

danker
Posts: 750
Joined: Apr 2012

Rather than IMODIUM  get a prescription for LOMOTIL. It stops diarrhea cold.  For his raw butt, if it is burning, try RADIAGEL from Wallmart.  Also use Equate flushable Wipes rather than toilet paper.  These are also available at wallmart.  Maybe these will make his life easier. Good Luck to you both.

UncleBuddy
Posts: 662
Joined: Aug 2013

Thanks Danker. I will look into all of this today. He found a box of unopened wipes from his last round of chemo, so that's good. I'm still trying to find out whether his problem is that he's just going too often or if it is diarreah. I don't live with my brother, my dad does. Once I know whether it is loose stools or that he's just going frequently, I will know more (my brother is intellectually disabled, so getting this information out of him is a little more difficult). 

Thanks everyone for all your help.

annalexandria's picture
annalexandria
Posts: 2268
Joined: Oct 2011

that is the one med that helped me with the raging diarrhea I had on FOLFOX.  You can also ask about how best to take it.  My doc told me to take 6 of the 8 total pills for the day all at once, then the final two 30 minutes later if things hadn't stopped.  This is NOT how they tell you take it on the label, so you def want to check with the doctor first before trying this approach.  I will say, though, that it stopped things cold, and this was after taking boatloads of Immodium, and every other thing you can think of, including tincture of opium (which sounds like it should be fun, but isn't).

I also sat in a warm bath tub for hours on end.  This helped ease the pain (although I hate baths to this day as a result).

You're a wonderful niece and your Uncle Buddy is very lucky to have you!

Hugs to you both~AA

fatbob2010's picture
fatbob2010
Posts: 397
Joined: May 2012

Although the previous suggestions are surely helpful, a spray bottle of water to cleanse and then a gentle pat dry, or air dry, may also be more comfortable.  

Very sorry to hear about your Uncle.  There is no doubt that life does not seem fair sometimes.

Art

Annabelle41415's picture
Annabelle41415
Posts: 4304
Joined: Feb 2009

I'm so sorry that he is going through this, especially since he can't really grasp the situation.  Please see if he will be able to sit in a sitz bath for his pain and also try calmoseptine - this has helped me tremendously since it is a huge barrier for the skin and they use it a lot in nursing homes for people with conditions that have an irritating bottom.  It is OTC but behind the counter so you have to ask the pharmasist for it.  I'm also agreeing with the others to please speak to his doctors, there are prescriptions that can control it.  Thank you for being such a wonderful brother.

Kim

UncleBuddy
Posts: 662
Joined: Aug 2013

Tomorrow we will see his onc at his chemo treatment. I will talk to her about meds for him. I didn't even think of a sitz bath, that's a good idea. Everyone has been so helpful on this site. I didn't know where to turn. His doctors are wonderful, but I don't want to call them every 5 minutes. LOL

I have so many questions to ask his onc tomorrow, so I need to write them down while they're fresh in my mind.

BTW, my brother is Uncle Buddy. That's what my kids always call him. My name is Lin and I am his sister. I can see where everyone is confused by the name. Sorry about that. I opened it in his name because he is the one with cancer. Maybe I should have opened it in my name, oh well.

Annabelle41415's picture
Annabelle41415
Posts: 4304
Joined: Feb 2009

Sorry for the sibling mixup, but I'll repeat it again - thank you for being such a wonderful sister.  Seems like you are looking out for him with tremendous concern and you should be commended.  Yes always write things down before going into the doctor as it will slip your mind.  Once again, welcome Lin to the boards and keep asking away as there is a lot of knowledge on this board and many people to help you and your brother get through it.

Kim

RobinKaye
Posts: 93
Joined: Nov 2011

Ditto the Calmoseptine...if you have trouble finding it ( I did) you can get it from Amazon. After trying just about everything, someone on a forum said "run, don't walk and get calmoseptine. Sitz baths are great, also the peri-anal bottles for cleaning, the same ones women use after childbirth.

jen2012
Posts: 1208
Joined: Aug 2012

Sorry Lin, but this thread reminds me a bit of a "who's on first" skit.  :)

I'm sorry your poor brother has been through so much.  Certainly not fair.  In some ways, maybe it's easier for him that he doesn't grasp the situation.   Hang in there...

UncleBuddy
Posts: 662
Joined: Aug 2013

He's a little better today. I found out that he was eating multigrain bread and whole wheat pasta. His diet was adding to the loose bowels. We have corrected that and he is taking Imodium for now (doctor will prescribe something stronger if needed). He is using wipes and has been using Desitin, it has seemed to help. I told dad to pick up Calmoseptine so my brother has it for future use if needed. 

Your comments have really cheered me up and are so very appreciated.

Again, thank you.

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