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And I hear it gets worse!

Macmadgram's picture
Macmadgram
Posts: 8
Joined: Mar 2012

I just finished week 1: four days of Mitomycin, 5-FU and five IMRT treatments. I feel so weak and I have terrible bowel cramps and diarrhea. My mouth is also pretty sore. I have spent all weekend sleeping (except for excursions to the bathroom).

I have IBS and I am very prone to constipation at the best of times. I am absolutely petrified of getting constipated during this treatment so I'm afraid to take Imodium. I am taking Gravol and acetaminophen with codeine (OTC here in Canada) both of which seem to help a bit. I take Metamucil every day and have for years. The radiation nurse said this helps with both diarrhea and constipation. I have also learned to absolutely avoid cold drinks because they make the bowel cramps much worse.

So, now I am wondering how much worse this is going to get. The chemo pump is gone but I hear that the effects of the chemo will really hit me next week. Is this true? So far, I am only very slightly sore from the radiation and I'm very grateful for this. I have a good cream that I am using.

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

The stress of being diagnosed and all of the hullaballou we go through before starting treatment can make a person very weary, not to mention the treatment itself. Stay in bed as much as you need to. Please try to drink as many fluids as you can as the diarrhea will deplete your body of fluids. Lots of water - it will help flush the chemo from your system. Also need to keep up the proteins - Carnation Instant Breakfast, Ensure, Boost. If you can't tolerate those there's a great protein drink available from your pharmacy called Resource. It comes in various flavors and is quite good. I had to have them order it but it came in within 24 hours.

I suffered from terrible constipation for several years prior to treatment. Since then the constipation has gone away. I never did get diarrhea during treatment but now (3 1/2 years out) it does come on occasionally. I was afraid to try Immodium too because I thought it might cause constipation, but it didn't. The box says to take two Immodiums but I only take one at a time. It doesn't cause me constipation but does relieve the runs.

The only immediate side effect I had from the chemo was mouth sores (which might be why your mouth is feeling sore). The doctor can give you a mouthwash mixture (mine was called 'swish and swallow') that will relieve the sores within a couple of days. Might want to stay away from minty toothpaste as that will aggravate the mouth sores. Biotene has both a mouthwash and toothpaste that come highly recommended.

I hope things get better - at least you've now started and are part way through the treatment. Get plenty of rest and lean on those close to you whenever you need a hand with things. Write in often - we all sympathize with you and want to help.

Rose

Edit: Sorry, I didn't answer your question - how much worse is this going to get? Unfortunately I don't have an answer. Everyone seems to react a little differently. I didn't feel hardly any effects (except for the mouth sores and some tiredness) until about the end of week four. Then I got really tired and the radiation burns started to show up. After that it was pretty miserable for about three weeks, then things got better day by day.

rds711
Posts: 113
Joined: Dec 2011

I finished my treatments 4/4/12. I didnt really have much side effects from chemo except a tender mouth for 2-3 days, no sores. Like Rose stated the radiation didnt really get to me until the burns showed up in week 4-5. The worst was just before my last 3 radiation treatments to 10 days after. It seemed like on day 9 I was pretty miserable then the next day I was so much better and now I am doing very well.

It is very very important to stay hydrated and as well nourished as you can. Diarrhea can make you dehydrated quickly. Again instant breakfast, ensure, gatorade including the one with protien are really good. Protien is very important because its your body's building block for healing. For some reason I craved pancakes and of all things Mcdonalds hamburgers, Ice cream was on that list too.

I, like Rose used 1 immodium for the diarrhea and if after a couple hours I was still having would take another one. Usually 1 would keep me in check. I would highly recommend you talk to your MD about the diarrhea and the pain. My MD gave me percocets initally for pain but they seemed a bit constipating if I used more than a couple a day, so they switched me to oral dilaudid pills week 4 which really helped. Please contact your MD about the diarrhea, if your dehydrated now and cant get in enough fluids you may need IV fluids.

The chemo could cause some of your blood counts to drop around weeks 2-3 after the chemo (again the degree varies person to person). During that time please be aware you can be more susceptible to infections so avoid people who are sick. IF you ever get chills or fever call your MD immediately!

As Rose said everyone is different and not everyones experience is totally the same. Just remember this its "Weeks for years"! It can get tough but you take it one day at a time, keep your MD well informed of your symtpoms. You can do this! Rest as often as you need, lean on family and friends and advocate for yourself with your MD about your needs.

I will keep you in my prayers. Hang in there!

Randy

Angela_K
Posts: 374
Joined: Jan 2011

Macmadgram ~

Fortunately treatment is just for a few weeks and pretty soon all of this will be behind you. Chemo and radiation affects everyone so differently. My bottom burned early in treatment (was told it was a reaction to chemo) but my energy level remained high enough for me to walk over to the clinic each morning (1/4 mile with a modest incline) until the 5th week.

I rinsed my mouth out with a solution of water/salt/baking soda a zillion times a day before, during the 6-week treatment and had one small mouth sore although my gums and mouth stayed tender. I, too, was diagnosed with IBS, but it has since disappeared so I am wondering if it wasn't the cancer causing symptoms all along? I was scared silly to take Imodium and followed a fresh vegetable juice regimen that served me well, keeping me hydrated and nourished. I was fortunate enough to tolerate solids throughout so I ate a lot of lean protein like fish and chicken.

It's important to be your own best advocate. If you're in pain, speak up. If you have questions, don't hesitate to call your doctor's office. If you need suggestions regarding creams that bring relief, ask your doctors and/or get feedback from us.

Radiation burns peak about a week following treatment but the good news is that healing is usually very, very swift after that. Get a lot of rest. Ask for help. Visualize yourself healing. Get a light massage. Do some light stretching. Whatever makes YOU feel good.

Know that you WILL get through this. Take one day, one minute at a time if you need to. We're here for you.

With love,
Angela

AZANNIE's picture
AZANNIE
Posts: 396
Joined: Mar 2011

This time last year, I was experiencing what you're going through now. Fortunately, I didn't have mouth sores. The chemo nurse recommended Biotene. I handled chemo pretty well which kind of surprised me. I think it was the second round of chemo that I was given an IV for fluids. The radiation effects hit about the 4th week. As was mentioned in another post, healing comes quickly. You'll get through this... I did have bowel issues during treatment and found that the prescription lomotil helped with the diarrhea.
Best wishes!

Ann

Macmadgram's picture
Macmadgram
Posts: 8
Joined: Mar 2012

I appreciated all your messages of encouragement and advice! Thank you so much for taking the time to write me. I will contribute more when I am feeling a little better.
Carol

torrance
Posts: 118
Joined: Jan 2012

Carol,

What ever you are feeling will be your unique normal at that moment. Each of us respond so different it can be challenging to not compare your reactions with everyone else, just keep that in mind. You will conquer each effect as it comes, and like it was said, it is a tightrope of balancing comfort and consequences. Come here as often as you need to vent and query us for hints and support.

Hugs,
Joanne

Angela_K
Posts: 374
Joined: Jan 2011

In fact, as strange as it sounds, I wanted to experience my journey without much outside influence and avoided this board completely until treatment was over with. We're here for you no matter when you need us!

Angela

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

Sorry to be late in responding--I've been out of town. By now you are into week 2, so congrats on having the first week behind you! I'm sorry you're having some side effects already, but it's not uncommon. I was exhausted on day 2 and began having diarrhea very early in the game. While I did not experience mouth sores, my mouth became very sensitive and I developed thrush. Getting a handle on the bowel issues during treatment can be quite tricky. I described it as walking a tightrope, with one misstep leading to either constipation or diarrhea. I hope the things that you are doing will help you avoid either to a severe degree. Please keep us posted on how things are going for you. Like the rest of us, you will get through this, even if it's no fun! Hang in there!

shirlann54
Posts: 161
Joined: Aug 2011

I didnt get the mouth sores.I had terrible bowel cramps and diarrhea too after my chemo it lasted about a week i was in a lot of pain .I think you are allready having the effects from chemo .I was sore after the frist week of my radiation too i think that was from the chemo too.I did take the imodium one at a time .I was worried about constipation too .But i had to take it i had diarrea so bad.I never did get constipated. My last round of chemo i didnt get cramps.You need to get you a sitz bath. I used that a lot it really helps .you got 2 weeks down thats good . My prays are with you. Shirley

Macmadgram's picture
Macmadgram
Posts: 8
Joined: Mar 2012

I just wanted to say that after week 1, I was so afraid that I couldn't make it through treatment but now, after week 3, I want to tell everyone that you were right! I can do it and I am doing it and things are going pretty good! Although I am a little tender in spots, I seem to have quite a bit of energy and have even been going to work. After the second week, I had a problems with raw skin in the the groin but went into the clinic and was prescribed Nyaderm (Nystatin Cream--an antifungal) and this has helped immensely. Rawness and tenderness may be due to more than radiation. My radiation oncologist said that the Nyaderm could be put all the general area that is being radiated. I have to say it has cut down on the itchiness! I am also using Glaxal-Base cream and finding it effective. Three more weeks to go!

Thanks to all for the encouragement!
Carol

Cheyenne's picture
Cheyenne
Posts: 76
Joined: Apr 2012

Thank you for posting your update. This is very encouraging to me.

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

So glad to hear from you! That itchiness - ick, I remember it, awful. Glad they gave you something to help with it. I also found Benadryl to be a great help.

Really glad to hear from you - stay the course - you're halfway through! Things may get somewhat rougher yet but then it'll be over and you'll be on the way to a better time.

Yes, you can do it!!!

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

We are all lucky to have gotten treatment for this cancer. You are in the toughest part right now. But keep telling yourself "it's passing". Sometimes I felt I was stuck in time because it was difficult to manage the pain since I am allergic to sulfa and could not take that cream you have Silvadene. I had problem with low counts and they had to reduce my chemo as a result but I am today cancer free. Today is the one year anniversary of my diagnosis. I thank God every day I was treated in time and am very grateful for relief from the chronic pain and other symptoms I suffered at T2N1 prior to treatment. I am far better off than I was and hope this will also be true for you. Recovery is a little up and down but last night after cooking a nice barbeque I marveled at the difference between this year and last. All the best and keep doing like everyone says, visualizing your complete recovery.

AZANNIE's picture
AZANNIE
Posts: 396
Joined: Mar 2011

Glad to hear that things are going pretty good! Also glad you're finding relief for itching and raw skin. I remember the intense itching about week two and when I mentioned it to the radiation nurse she said it was too soon for side effects - geesz! You're halfway there!

Ann

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

It's so good to hear that you are doing well! You CAN do this!

torrance
Posts: 118
Joined: Jan 2012

Yeah for you! Your positive thinking will help you through this. Can you believe it is almost over? Boy do I remember the itching, went to urgent care it got so bad right from the start. Just goes to show you that the path you are on is your own! Take it along with your positive attitude and you'll get through this. Keep us posted as your energy permits, we can't wait to hear from you.

Joanne

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