Newbie

judyv3

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

It can be a rough go

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.

mp327

Hi Judy!

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.

lp1964

Dear Judy,

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

Thank you!

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

Gulamin

You will be ok

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. 

Marynb

judyv3 said:

Thank you!

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

Judy....re. Neupogen
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.

Marynb

Judy
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!

TraceyUSA

Welcome

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

itching oh my

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

Thinking of You

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

caholz33 said:

Thinking of You

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. 

Judy

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

mp327 said:

Judy

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.

Not done yet....

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

caholz33 said:

Thinking of You

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. 

Hi there

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

judyv3 said:

Hi there

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.

Aquaphor

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

caholz33

Judyv3

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!

mp327

judyv3 said:

Hi there

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.

Judy

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

judyv3 said:

Hi there

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.

Judy
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!

TraceyUSA

Judy

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 saltwater 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

TraceyUSA said:

Judy

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 saltwater 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!

Thank you so much everyone!

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

judyv3 said:

Thank you so much everyone!

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!

Judy

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