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judyv3
Posts: 56
Joined: Dec 2013

Today I am starting my third week of treatment for anal cancer.  I have not been told what stage it is, though I have had a PET scan.  I do know that it is early, invasive, not beyond the anal canal.

I have done pretty well side effect-wise so far.  I had mucositis and thrush, but Magic Mouthwash did the trick.  I started with diarrhea on Thanksgiving and with that has come pain and itching. So itchy!  I've had 4 days off from treatment due to the holiday and it is not a good thing for me.  I dread going back for radiation today.   

I read everyone's side effect stories and I wonder how I am going to make it through till the end.  I just don't know if I will have the strength to get through it.  I am terrified. 

I am trying not to be pessimistic, just realistic.  And I I guess I am just looking for support from those who know what I'm going through.

Thanks and good thoughts and vibes to all going through this ordeal.

Judy

jcruz
Posts: 220
Joined: Jan 2013

Hi Judy

I'm sorry to know that you are going through this ordeal.  I know how tough it can be.  I'm now 13 months past the end of my treatment.  I did have a pretty hard time.  It's important to ask for anything that the doctors or nurses can do to help you - whether it's something topical for the pain and itch or something to help with the diarrhea or pain meds or extra hydration.  I think I just put my head down and moved forward, taking it just a little at a time.  I hope you have a good support system.  I could not have done it without my friends. 

It can be hard to read other people's stories.  I did a little before I started my treatment and it did freak me out.  I didn't come back here until after I was done. 

Hang in there.  Come back here with questions or complaints.  We're here to support each other.

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mp327
Posts: 2883
Joined: Jan 2010

We've met on another website, but I welcome you here and am glad you've found this group--a great bunch of people who are very supportive and caring.  We will help you through this!  It can be a rough go, as already stated, but you will get through it just as the rest of us have.  Towards the end you may need to dig deep within yourself to find the strength to continue on, but it's there!  Ask us anything about managing side effects or how to prevent them in the first place.  There's lots of experience here and we are most willing to share. 

Reading other peoples' stories can be frightening and overwhelming.  But please keep in mind that no two peoples' journeys are quite the same.  Some people have an easier time and my hope for you is that you will be one of those!  Take it one day at a time, get plenty of fluids and rest, let your friends, neighbors and family help you and do not feel guilty about that!  It's important to involve those who care about you and want to help.  Just set boundaries if necessary.  Keep your docs updated on any and every little thing that you experience, as little things can quickly turn into big things when getting chemo/rad.  Do not be afraid to ask for stronger medication if needed and do take it as prescribed to stay ahead of the pain. 

I look forward to getting updates from you as you are up to it.  I know you can do this and I wish you all the best.

Marynb
Posts: 1134
Joined: Aug 2012

You can do this! Try to remain positive and take one day at a time. I can tell you that I did not have the severe side effects that some do. I did not suffer from nausea, did not lose hair, did not have severe burns. I did have diarreah.

Be careful about what you eat during treatment. Wash your mouth out twice a day with salt water. Also, I did not use topical lotions or creams. I think it makes burns worse. I used a hand held shower for relief. Pat dry. Always have a bottle of spring water in your hands and hydrate! Also, protein promotes healing, so try to eat extra lean proteins every day. You can do this. Do not fear. This is doable!

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lp1964
Posts: 852
Joined: Jun 2013

I had rectal cancer, but went through the same treatment you are going through. 

There is no easy way. No short cuts. But you have a great chance for full recovery. 

Remember: you are the same person as you were before you had cancer. You have the same life, you have your knowledge and skills, hopefully good family and friends. You just happen to have cancer, but it's not your whole world. Keep busy, do stuff. find the energy for a walk or your hobby. If you work, do your best. Life goes on no matter how hard it is. There is a thousand good things for one bad, but you have to stop and notice the good.

We all went trough things we thought we could not, but we are still here, doing all right and so will you.

With brotherly love, 

Laz

judyv3
Posts: 56
Joined: Dec 2013

I feel so much less alone right now.  I just need to remember to get through each moment as it comes.  Looking for trouble will only find it.  I had bloodwork yesterday and my WBC was very low so I am getting Neupogen (?) for the rest of this week.  I understand that this is not unusual.  And they want to get me built up for the next round of chemo.  

My takeaway from those of you who responded is that I CAN and WILL get through this.  Also, I need to try to normalize my life again.  I've been so off balance since diagnosis that I've forgotten what my life was!  I also need to work on getting more protein into my diet.  Since the mucositis and thrush, I've been limited to soft foods.  And, I love my hand-held shower!

Thank you all for responding.

 

Judy

Marynb
Posts: 1134
Joined: Aug 2012

I just wanted to tell you that you may experience flu like symptoms with the Neupogen. My wbc got low twcie during treatment, and the shots were a low point for me. The docs never told me that I could get sick from the shots, and I was panicked when I got so sick. It will pass.

If you are eating soft foods now, try eggs, peanut butter, yogurt. Chicken soup is always good too. Smoothies with a tbspn peanut butter are good snack. Just try to squeeze in protein whenever you can.

Gulamin
Posts: 132
Joined: Dec 2010

Dear Judy:

Sorry you found us here. I am 3 years NED this Thanksgiving. I did get the bad news around Thanksgiving as well and started treatment in December. I did not have bad side effects and did not get burned. I guess I was lucky. It is different for all of us and each one of us has a story. The main thing is to stay positive and you will get through this. This is a curable cancer and you will make it to better days again. You are beginning stage. That is wonderful news. Keep us posted and let us know how you are doing. This group helped me through the tough times. We are here for you. 

TraceyUSA
Posts: 135
Joined: May 2013

Sorry you find yourself in this situation but you have found a great group of people to turn to. 

As others have already said everyone repsonds to treatment differently.  I did not find this board until after finishing treatment in March of this year.  Reading others side effects and experiences can be overwhelming but the advise is great. 

A friend told me at the beginning of treatment to take one day at a time.  That may be cliche-ish but it was one of the best things I was told.  Every time I started feeling scared and overwhelmed it was because I wasn't focusing on today.

I had bad mouth sores the first round of chemo and milder ones the second time around.  My dietician told me to use plastic utencils for eating and I started doing that as soon as I started the last course of chemo.  I couldn't stand the "magic mouthwash" but found that UlcerEase anesthetic mouth wash gave me relief (it's over-the-counter but my pharmacy had to special order it).  Salt water rinse every 2 hrs. helped too.  And I used an extra soft toothbrush with Biotene toothpaste.

I was told to drink LOTS of water and eat extra protein too. 

I had diarrhea too.  It started the 1st or 2nd week and didn't end until after treatment.  Immodium helped some but I hate taking any pills so I probably should have used more.  They also had me on a low residue diet (basically a bland diet with no fiber or lactose.)

My radiologist had me use an aloe based gel twice daily from the 2nd week on.  I believe this helped me not to develope the burns that a lot of people have described.  I had redness, discomfort & irratation but nothing I couldn't deal with.  Also, about half way through they told me to go bare bottomed as much as possible.

You sound like you are about half way through already, YOU CAN DO THIS!

Thoughts and prayers coming your way. 

OMG 1012
Posts: 61
Joined: Dec 2012

to me this was about the worse side effect--I took Benadryl a few hrs before bed I thought I was going nuts with the itching ck with your Dr

caholz33
Posts: 19
Joined: Oct 2013

I just read your initial message about starting 3rd week - I'm doing the math and you probably had your last radiation sometime last week, unless you lost a lot of time to holidays.  I hope right now you are feeling strong and determined.  You are at the toughest part of this but SOON you will be feeling SO MUCH better.  Be proud of yourself for doing what needs to be done.  2014 is here and it can be a great post-treatment year!  xoxo,  A. 

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

I wanted to check in on you to see how you are doing.  I'm not sure if you have finished treatment yet or not, but I hope so and that you are in recovery mode by now.  When you can, please post an update and let us know how things are going for you.  Take care.

judyv3
Posts: 56
Joined: Dec 2013

The holidays have stretched this treatment out for soo long.  Not to mention what it does to the insurance in the new year - have to pay up my deductible.  Luckily (?) I am back on Neupogen shots for the second time so the deductible will be met quickly.  Next week is the big week, 5 days of radiation and final chemo and then done.  I spoke with both my medical oncologist and radiation oncologist regarding the timing of my final chemo.  They discussed and agreed it should occur at this time.  

I haven't posted, but have been reading.  Truth be told I'm terrified of trying to get through this. I'm emotional (cranky, crying, etc.)  I'm sick of being stuck in my house.  And I just don't know how to make it to the end.  

Onward - treatment today - have to go get ready.  One day at a time, one foot in front of the other.  

Thanks for checking on me, it is truly appreciated. 

judyv3
Posts: 56
Joined: Dec 2013

I've read your posts today with much interest.  They give me a glimmer of hope.  I was scheduled for 33 radiation treatments, so with the holidays in there (I've been through Thanksgiving, Christmas and New Year's) next week is my last week.

Right now I'm battling low white blood cells (for the second time) and my bum has begun to get very red and sore - any advice for that?

I'm terrified of trying to get through these last 6 treatments - and after reading your post, rightfully so, lol.  But there is no choice.

mxperry220
Posts: 360
Joined: Mar 2011

Aquaphor was my best friend.  It worked better than any of the prescription ointments for me.  Also, I found Advil worked better  than any of the prescription pain meds.

Mike

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

Thanks for updating us.  I was hoping you were finished with your treatment, but you will soon be finished, so hang in there!  As for the sore bum, I would suggest trying pure aloe.  Some people have been told that it does not need to be removed prior to a radiation treatment but I cannot verify that.  You should check with your rad onc or nurse before using anything and ask if it needs to be removed prior to treatment.  Some creams or ointments can intensify the burning if not removed completely.  You will get in those last 6 zaps, you will!   

Marynb
Posts: 1134
Joined: Aug 2012

Judy, hang in there! Don't be terrified, you are almost finished, and not everyone has the same amount of pain. I would caution you not to use the lotions on days you are being radiated. I used the hand held shower for relief and kept the burned area dry and clean. My burning was minimal, compared to some here. You can do this!

caholz33
Posts: 19
Joined: Oct 2013

Hang in there Judy!!  Make every day next week a major count down - Monday will be the LAST Monday you have to do this,  Tuesday will be your LAST Tuesday, etc.  By the end of treatment my outer skin really flared up, to the point that even urinating was an issue, if this happens drink LOTS of water - you won't want to, because you won't want to pee, but it's much better if it is very diluted.  Try to stay mentally strong and keep in mind how important the treatment is for your life! You're almost there!

judyv3
Posts: 56
Joined: Dec 2013

I've just found my first blister on my vagina (sorry for TMI - but if not here, where?).  Is there anything I should do?  It only hurts when I wipe, so I'm being very careful not to.  Anything else?  I've just dabbed a little aquaphor and lidocaine on it for now.  I've used aloe on my red butt and airing it out has helped.  

You all are fantastic.  I'm feeling much stronger right now mentally and physically (except for that darn blister).

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

I did not experience this, but I'd say you are on the right track with the aquaphor and/or lidocaine.  However, my best advice is to make sure your radiology onc knows about this.  I hope that you are doing well otherwise!

judyv3
Posts: 56
Joined: Dec 2013

I'm doing ok otherwise.  But I am going to insist that I see the doctor before radiation tomorrow.  

eihtak
Posts: 828
Joined: Oct 2011

I just wanted to add that as others have suggested I used a squirt bottle of warm water to sort of hose myself down each time I peed, sometimes I'd just dump the bottle on myself while going for relief. I did not use any ointments until done with radiation for fear of not getting them cleaned off enough before each treatment. When done though, I used both aquaphor and a spray that worked great. Dermoplast. It is sold OTC and often recommended for relief after childbirth. It was nice because it was a spray and easy to apply.

Hang on, your almost there!

I'll keep you in my thoughts and prayers for quick healing both inside and out!

caholz33
Posts: 19
Joined: Oct 2013

At the end of radiation I got blistered all the way up just north of the labia, also in the thigh creases where the lymph nodes are.  I have really sensitive skin and bruise/burn easily.  Do not "wipe" anything, just dab. It takes forever but much less irritating to your skin.  Aloe baby wipes are softer than toilet paper.  For several days I had to pour a big cup of room temp water over everything when I peed.  I wanted to stop drinking anything, but that makes it worse - lots of water will dilute your pee so it burns less.  Yep, it was kind of miserable, but the silver lining is that you're almost finished!!!

TraceyUSA
Posts: 135
Joined: May 2013

I, too, was worried about the last round of chemo.  I think having done one week already and now knowing what to expect brings about some of that anxiety but the 2nd round can be different than the 1st.   I had horrible mouth sores the first time but the second time I was more prepared and they were not as bad.  (One tip my dietian gave me was to use plastic utencils for eating as soon as I began chemo and that with sal****er rinses every 2 hrs. seemed to help.) 

You are down to the last week and that is great news! You will make it through and soon it will only be a memory and you'll be healing.  It was amazing how fast I began to heal and the difference I felt just a week or two after the treatment was done.  One day at a time and it'll be done before you know it.

Thoughts and prayers to you!

judyv3
Posts: 56
Joined: Dec 2013

I will reread these posts Monday morning as I get hooked up to my pump and face my second to last Monday of radiation (yes, I need 33 so my last one is Monday, January 13th - not happy about that).  I can do this!

qv62
Posts: 262
Joined: Nov 2012

sending prayers and hugs your way, thinking good things for you hope this week goes quickly

jcruz
Posts: 220
Joined: Jan 2013

I had 33 days of radiation too.  That last day, Oct. 18th, I was so weak but so happy not to have to face that machine again.  The technician gave me a hug and asked me to come back and say hi when I felt better.  I hope your last week of treatment and the following weeks will be uneventful.  Rest up.  Almost done.

caholz33
Posts: 19
Joined: Oct 2013

It's hump day of your last week (okay you also have Monday but we can't call that a "week," so this is your last week!!!)  So many people here are rooting for you and know how tough and brave you are!!!  You will get through this!

judyv3
Posts: 56
Joined: Dec 2013

I made it through today (barely).  I saw the radiation doc yesterday and he said if I needed a break I could take one.  I told him I wanted to get it done.  He must have had a premonition about how I would feel today because it is definitely the worst day yet.  I don't know if the concurrent chemo is making it worse, but I am extremely nauseous.  I'm giving consideration to taking the next four days off of radiation and finishing next week.  Am I kidding myself?  I want to be done, but I feel so sick.  I'm taking Zofran, trying to eat but It's bad.  I feel like I'm being such a baby, today I cried after radiation and both techs cried with me.  

Maybe when I wake up tomorrow I will feel strong enough to get through another day (and it's my final radiation boost). 

Thank you for checking on me, it means so much.

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

I'm so sorry you are miserable.  I was too towards the end, but like you, I just wanted to get it done and over with.  My rad onc offered me a break and I refused.  I made it to the end and you can too, but if you feel you need a few days off, then take them.  You are NOT being a baby--this treatment is brutal.  I hope you feel better in the morning and can make it to treatment.  I will be thinking of you and sending up prayers for you.  Hang in there!

OMG 1012
Posts: 61
Joined: Dec 2012

The week after the last Chemo round was the worse.  Hang in there, you have come so far.  The nauseau and side effects will soon be a thing of the past.  YOU can do it :)  My thoughts and prayers are with you.

Marynb
Posts: 1134
Joined: Aug 2012

Judy, Hang in there and kill those darned cancer cells! Don't give them a chance to regroup! You can do this! The protocol calls for consecutive and concurrent treatment. It is tough, but you are tougher! If you can get there, just get it done! It won't get any easier by waiting. I am so sorry you have to go through this. In a few weeks, you are going to feel so much better! Hang in there, Judy.

qv62
Posts: 262
Joined: Nov 2012

rooting for you ! prayers sent your way for healing and strength, I am hoping you find comfort both physically and mentally very soon

judyv3
Posts: 56
Joined: Dec 2013

I am stronger than my fears.  I am going today.  Last Thursday of treatment.

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

That a girl!  You can do this, I know you can!

caholz33
Posts: 19
Joined: Oct 2013

My chemo onc told me repeatedly all throughout treatment how important it was to finish curative treatment plans no matter how awful, HOWEVER I only had 25 days of radiation (also ending on a Monday due to holiday).  My rad onc admitted that sometimes they have to give a little break for longer treatment plans, but she also preferred to see highly curable patients finish it out.  And then adding that second round of chemo, it's like they're trying to break you, but remember it's really the cancer cells that are being DESTROYED!  

So I hope you can make it, especially since you will be getting a 2 day weekend break if you can endure tomorrow.  No matter what happens, WE WILL SUPPORT you - you are an absolute WARRIOR doing 33 treatments!!   - A.H.

danker
Posts: 735
Joined: Apr 2012

Have your dr. prescibe LOMOTIL for the diarrhea. It realy works !  I found RADIAGEL, avialable at wallmart, provided relief for itching.  Perhaps each will work for you. Good Luck!!

judyv3
Posts: 56
Joined: Dec 2013

I feel awful, but I know that the road to healing is just around the corner.  Chemo pump removed this morning followed by the dreaded radiation.  Unfortunately, I have to go back on Monday for the final treatment.  Trying desperately to eat.

Baby steps.

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

You can do this, even if it's by taking one minute at a time.  Get some good rest over the weekend and pamper yourself any way you can to bring you some comfort.  I know it's hard to eat right now, it was for me at the end of treatment also.  If you can't, then try some protein shakes or drinks.  I hope you have a restful weekend and that Monday will go well--then it's on to the healing!

caholz33
Posts: 19
Joined: Oct 2013

Yay!  You got through the week!  And the chemo is off, that have to feel good to be done with that!!  I hope you have a good caretaker who can figure out something you'd like to eat, but even if not, you managed to get enough nutrition to get through the chemo and that is the most important thing.  Now just survival mode until Monday is over with.  Congrats! 

 

qv62
Posts: 262
Joined: Nov 2012

glad to hear your chemo is complete, wishing you all the best for next week, hope the weekend brings you some relaxation

caholz33
Posts: 19
Joined: Oct 2013

Unless you had to take a break, today will be your LAST radiation - HALLELUJAH!!!!  I am wishing you strength and endurance to get through this week, soon things will be so much better.

judyv3
Posts: 56
Joined: Dec 2013

After a weekend of feeling really awful, the thought of having that final treatment was too much for me.  BMs are so painful!  I decided to have a meeting with the doctor to tell him that I was DONE.  I fully expected that he would fight me, but he completely agreed.  He felt that one more treatment would set me back and I'd completed 32.  Enough is enough.  So I was able to adjust mentally from dread to being three days into recovery.

My white blood cell count is once again non-existent so I have started Neupogen shots again.  Unfortunately, since we are into the new year I have to reach my deductible.  They would not give me the shot without payment up front.  $469 for each shot.  I will need at least three, after which I should reach my deductible.  Grrr.

I am on the road to recovery and I am blessed.

mp327's picture
mp327
Posts: 2883
Joined: Jan 2010

How I wish I could give you a big hug right now!  Being finished has to give you much relief, if not physically yet, emotionally.  I completely understand not being able to go on--I was at that threshold once.  Let's hope that your 32 treatments have done the job and #33 was never needed to begin with.  I'm sorry you have to get the injections, but they will help.  First of the year deductibles suck, but look at it as money invested in your return to good health.  I wish you a smooth recovery and hope that soon you'll be posting about how much better you feel!  Rest up, stay hydrated, eat lots of protein and look forward to better days ahead.

jcruz
Posts: 220
Joined: Jan 2013

I just want to second Martha's good wishes for your recovery.  Take care of yourself

Janet

caholz33
Posts: 19
Joined: Oct 2013

Congrats on making it through 32!  I had 25 treatments and told my husband I can't imagine doing 33.   I'm sure it feels like it will never get better but it will, soon!!

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