Finally started treatment

ginatom
ginatom Member Posts: 44 Member
in Anal Cancer #1

Hi everybody - not just lurking around the edges anymore.  I'm in.  I've had 3 rads and received the MMC and 5FU pump on Friday.  I get unhooked tomorrow afternoon.  I haven't nausea to speak of but I've been tired.  And since yesterday my mouth and all the lower mucous membrane places all feel swollen, hot, icky.  Sitting isn't that lovely, but I've been able to walk around the neighborhood some and then rest.  No question I guess.  Just checking in.  Gearing up.  Trying to stay present.

Love to you all, at whatever stage . . .

Jeana

Comments

  • ginatom
    ginatom Member Posts: 44 Member
    #2
    I guess I should have said -

    I guess I should have said - I know this is just the mucositis that happens with the chemo.  I'm using Manuka honey - just half a tsp and hold it in my mouth for awhile and then spit it out.  Also baking soda - gargle, swish, spit, and then drinking some.  One or both seems to be helping some.  Would sure love to take some aspirin, but it seems maybe contraindicated in that.  

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    Jeana

    I'm glad your treatment has started.  Your first few days sound pretty similar to mine--tired and mouth tenderness.  I hope the honey and swishes will help with the mouth issues.  Just be sure to let your doctors/nurses know that this has happened.  I'm glad you are trying to get in some exercise and also resting--both will be good for you!  Take care and keep moving forward--soon you'll be through with this!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #4
    Jeana

    Oops, just saw that you answered my question about starting treatment that i asked on the fistula thread! Sounds like it's so far so good with treatment. Please don't feel like you have to have a question to post, just letting us know how you are doing is good. We are all pulling for you!

  • ginatom
    ginatom Member Posts: 44 Member
    #5
    Ice chips to prevent Mucositis

    Wish I had read this earlier but thought I'd post it for anyone starting.  Studies from 2005, cited in the NIH, say that mouth cooling, with ice chips immediately before and during 5FU (and others I think) really cut down on the numbers that get the mucositis!  Like from almost 40% to 6.7% in one study.  Wish I had known that.  I'm not sure how we would do it with our four day constant protocol, but maybe even just often sipping really cold water would have helped.  I see now that it's difficult to eat with this. . . never really understood that before.

    I also got the red face - so I googled 5FU red face last night and got a LOT of hits.  Eyes really tender.  The swelling is a little better today but still feels weird.  So, welcome to the Chemo Glow.  This is quite the education! 

    Other than that I'm not bad.  The radiation machine was broken yesterday, so I hope it's fixed today.  I've already had a four day break after only 3 treatments because of the holiday.  OH!  And I'm unhooked from chemo - yay!

    Cheers to everyone on this path with me.  I feel you all out there and feel a sisterhood/brotherhood.  Big hugs to everyone!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #6
    Ginatom

    Glad you got unhooked from the chemo. Being hooked up to it bothered me a lot. I remember being relieved when I got unplugged both times. Some of the side effects you do have to experience to really appreciate how bad they can be like those darn mouth sores. Thinking of you as you go thru this.

  • caholz33
    caholz33 Member Posts: 45 Member
    #7
    You Got This

    Oh how I LOVED the last trip in to remove the chemo pump!! Especially after the last week!  My mouth didn't bother me until the week after chemo.  I used a "product" (really a mix of products, and insurance didn't cover it) called magic mouthwash and that helped a good bit.  I did not know about ice chips in the mouth though I had heard about wearing a cool hat device to keep head cool to avoid hair loss.  My doctor had told me the hair loss would not be too bad with our types of chemo (mmmm hmmmmm.... lost about half, but it grew back).  I wasn't on this site yet but i had been put in contact with two cancer buddies who had gone thru same diagnosis, same treatment.  One had terrible nausea (vomiting multiple times a day), while the other one and I, had no nausea.  Never the exact same journey, but the support and advice can help.  Best to you XOXO 

  • ginatom
    ginatom Member Posts: 44 Member
    #8
    Need Diarrhea help!!! ASAP

    OK, I just looked up binding foods and know about BRAT (bananas, rice, applesauce and toast).  Also oats are mentioned.  Yesterday I ate nothing but oatmeal and appleasauce and today the diarrhea is 100% liquid.  And, my complication - my fistula - means that I stand up from sitting, and a cup of diarrhea just pours right out of my vagina and down my leg, soiling everything!  I mean, how can I go out into the world like this?  I leave in 45 minutes for rads and am making rice.  Just had appleasauce and will have oatmeal.  

    I travel now with a purse and a big bag - like a baby bag!  change of clothes, pads, wipes, peri bottle.  I've only had 5 rads.  Maybe I should have had the ostomy after all, but it's too late for that now.

    If you have any tips that helped a lot, please send them now!  Thanks so much!!!!

    Love to you all!  Jeana

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited June 2017 #9
    Immodium

    Jeana, start with Imodium, then prescription lomotil, I finally had to take tincture of opium at the end. Cheese and peanutbutter also worked for me. No fruits or veggies. If I were you I'd just give I and move into Depends for now. So sorry you're going thru this.

  • caholz33
    caholz33 Member Posts: 45 Member
    #10
    Diarrhea

    To be honest, I took Ducolax tablets all throughout my treatment to CAUSE diarrhea.  My goal was to maintain mild diarrhea, not to the point of pure liquid that would burn with acid, but on the other hand I was absolutely petrified of constipation.  Could not imagine trying to pass anything of any substance once all my rectal skin was tender from radiation.  Any kind of pressure would cause swelling (a phantom sensation of urgently having to poop right after you just pooped).  Your situatin is so complicated by the fistula, I hope somebody on this board can help with that!  All I can vouch for is that the pains meds should help counteract diarrhea.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #11
    Jeana

    It also helped to avoid milk, some people develop lactose intolerance during treatment. I took probiotics too- not sure if they helped or not. I read a study that used a probiotic called VSL that you can buy from Walgreens - they keep it in fridge and some of the pharmacy techs don't even know about it- that concluded that using probiotic reduced diarrhea from radiation. It was expensive so if I were doing it over again I might have just used a cheaper probiotic. 

  • mp327
    mp327 Member Posts: 4,440 Member
    #12
    ginatom

    So sorry to hear of your diarrhea woes.  I had that as well and it is awful.  If you are not on Imodium, get some.  If you already are taking Imodium with no relief, then ask for a prescription for Lomotil.  Beyond that, the only advice I can offer is getting a list of foods that will bind things up for you in addition to the BRAT diet.  My heart goes out to you, as I know how miserable this is for you.  Hang in there!

  • Wisteria83
    Wisteria83 Member Posts: 160
    edited June 2017 #13
    Jeana

    Sorry, sweetie, but for now, to ease your embarrassment, I have to agree with Mollymaude.  Depends, peanutbutter and cheese.  I've been wearing them and while I truly despise them, they are the best at retaining all those fluids.  Not so great at holding any solids though.  I actually doubled up with a pad inside them, so I didn't waste the entire depends if it was only a little bit of liquid.  They aren't cheap.  I'm also using the prescription stuff since the immodium wasn't working.

     

  • Kmessier
    Kmessier Member Posts: 79
    #14
    Jeans

    im sorry to hear about you diarrhea woes. I had have had diarrhea literally since before  was even diagnosed it was part of how I was eventually diagnosed I had lost so mich weight. Now after four major surgeries and a ileostomy for 8 weeks then s reversal of the ileostomy sometimes I wish I had kept the ileostomy. I didn't and have 3 weeks of treatments chemo/radiation left. My chemo/rad treatments were drug our because I have a bad heart and my cardiologist told my oncologist they I wouldn't well my body wouldn't tolerate how my oncologist wanted to do things originally. Back to diarrhea well first I'm sorry about your fistula I had one but it went out to my right butt cheek. one morning I woke up to s large bump that felt like it went towards my anus well guess what it did two days later it has gotten harder and opened up so I had poop coming out my butt cheek I had to have surgery to fix it. I've resorted to wearing Depends now Imodium and lomotil didn't help but I was out on pain meds Morphine and dilaudid I was in such bad pain and that made my diarrhea go from pure brown water to a thicker stool but I still am jncontinent sometimes. I eat bananas l, peanut butter, white bread for toast, rice. I can't drink milk anymore. One thing that helped was to document everything you eat imanf see if you can find any triggers. I was drinking Chocokate Boost and had to change to strawberry the chocolate was was a bad trigger and I used a lot of different probiotics finally the gastroenterologist had me get Culturelle and my insurance paid for it after the dr write a prescription. I'm so sorry your having so many problems I wish you the best and my prayers are with you.

    ~~~Kim  

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #15
    ginatom said:

    Need Diarrhea help!!! ASAP

    OK, I just looked up binding foods and know about BRAT (bananas, rice, applesauce and toast).  Also oats are mentioned.  Yesterday I ate nothing but oatmeal and appleasauce and today the diarrhea is 100% liquid.  And, my complication - my fistula - means that I stand up from sitting, and a cup of diarrhea just pours right out of my vagina and down my leg, soiling everything!  I mean, how can I go out into the world like this?  I leave in 45 minutes for rads and am making rice.  Just had appleasauce and will have oatmeal.  

    I travel now with a purse and a big bag - like a baby bag!  change of clothes, pads, wipes, peri bottle.  I've only had 5 rads.  Maybe I should have had the ostomy after all, but it's too late for that now.

    If you have any tips that helped a lot, please send them now!  Thanks so much!!!!

    Love to you all!  Jeana

    Ensure

    You might try drinking Ensure or Boost.  They are loaded with vitamins.  I drank one daily during treatments.  I liked the Banana flavor the best.  I ate toasted cheese sanwiches mostly during treatments.  I took immodium which helped with diarrhea.

    Mike

  • eihtak
    eihtak Member Posts: 1,473 Member
    #16
    ginatom said:

    Need Diarrhea help!!! ASAP

    OK, I just looked up binding foods and know about BRAT (bananas, rice, applesauce and toast).  Also oats are mentioned.  Yesterday I ate nothing but oatmeal and appleasauce and today the diarrhea is 100% liquid.  And, my complication - my fistula - means that I stand up from sitting, and a cup of diarrhea just pours right out of my vagina and down my leg, soiling everything!  I mean, how can I go out into the world like this?  I leave in 45 minutes for rads and am making rice.  Just had appleasauce and will have oatmeal.  

    I travel now with a purse and a big bag - like a baby bag!  change of clothes, pads, wipes, peri bottle.  I've only had 5 rads.  Maybe I should have had the ostomy after all, but it's too late for that now.

    If you have any tips that helped a lot, please send them now!  Thanks so much!!!!

    Love to you all!  Jeana

    ginatom....

    You've got some good advice here on foods / meds to help with the diarrhea, I hope something will work for you. I just want you to know you are in my thoughts as you work through this. The depends may give you just a little more freedom for now and you can think of it as only temporary. Focus on months down the road when this part of the journey will all be a thing of the past.

    I'll be sending healing vibes your way.....

    katheryn

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