Anal cancer III stage

Tanyasa

i was diagnosed with anal cancer. I am 32 years old with two great kids and best husband. 

I has my biopsy on July 2, it was positive . I have a tumor 4cm with big mess.i did CT scan and MRI. I done  my. PT scan too On Friday. I don't know results yet. Monday I have my colonoscopy schedule for 6 am . And Wednesday my tritment starting. Xeloda -1650 mg twice a day and radiation For six week. Plus I will be have chemo injection on first and 28 days. I scared to death. A lot of pain, and painkillet's- oxycodone and morfiy. Some help what I need expect from colonosc and treatment?

thanks

 

nicotianna

AC III

Hi - I am sorry to hear of your diagnosis.  I hope your PET scan shows no signs of mets.  This whole experience is very frightening & the people on this site will help you through this ordeal.  This cancer is very treatable & many have been cured at your stage.  Forgive me if I am uneducated about new treatments....however, I am unaware of Xeloda as a choice for first line treatment of AC.  The NCCN (National Comprehensive Cancer Network) 2014 guidlines recommend mitomycin & 5FU.  I do not have a copy of the 2015 guidlines handy nor the web site address.  I am curious why Xeloda was chosen.  Everyone has a different experience.  I did not have a lot of pain; rather discomfort.   However, diarrhea is common.  The pain killers will slow that down.  You will receive sedation during the colonoscopy & should not feel pain.  Drink lots of fluids.  Some of the side effects I experienced were taste changes, nausea, poor appetite, wt. loss & fatigue.  I use/d a hand-held shower which helped maintain cleanliness & minimized discomfort.  I applied aquaphor generously.  The radiology dept. will advise you about what products are ok to use.  I had someone drive me to & from my daily radiation treatments.  ACS has Road to Recovery in some areas.  Volunteers drive one both ways.  Feel free to ask questions.  The people here will help you!  I wish you cured or NED (no evidence of disease)!

Nic

Tanyasa

nicotianna said:

AC III

Hi - I am sorry to hear of your diagnosis.  I hope your PET scan shows no signs of mets.  This whole experience is very frightening & the people on this site will help you through this ordeal.  This cancer is very treatable & many have been cured at your stage.  Forgive me if I am uneducated about new treatments....however, I am unaware of Xeloda as a choice for first line treatment of AC.  The NCCN (National Comprehensive Cancer Network) 2014 guidlines recommend mitomycin & 5FU.  I do not have a copy of the 2015 guidlines handy nor the web site address.  I am curious why Xeloda was chosen.  Everyone has a different experience.  I did not have a lot of pain; rather discomfort.   However, diarrhea is common.  The pain killers will slow that down.  You will receive sedation during the colonoscopy & should not feel pain.  Drink lots of fluids.  Some of the side effects I experienced were taste changes, nausea, poor appetite, wt. loss & fatigue.  I use/d a hand-held shower which helped maintain cleanliness & minimized discomfort.  I applied aquaphor generously.  The radiology dept. will advise you about what products are ok to use.  I had someone drive me to & from my daily radiation treatments.  ACS has Road to Recovery in some areas.  Volunteers drive one both ways.  Feel free to ask questions.  The people here will help you!  I wish you cured or NED (no evidence of disease)!

Nic

I will be have mitomicin ,

I will be have mitomicin , but instead of 5fu it is Xeloda. Doctors said in my case it is will work better and more aggressive.

GoodDog2

ACIII

Hello Tanyasa,

I am so sorry to hear that you will be going through this. I was ACIIIB, went through mitomycin , 5FU and 6 1/2 weeks of radiation. None of it is easy.  There is pain from radiation but it is a pain that goes away quickly after treatment. Towards end of chemo I could only sit in my chair feeling like a zombie. Painful sores in mouth. My tongue hurt. My butt hurt.

But radiation is your friend.  Chemo is your friend. It is your weapon. You think you will never forget it, but you do! My PET 3 months after treatment showed no cancer and now I am 19 months after treatment and doing well. Try to focus on all of the good things that are happening with cancer treatment and more and more cures. 

I can only imagine how difficult this is with two children. You are young. Remember statistics are good and those statistics include people that were much older.

So glad you found this discussion board because there aren't many people out there that we can talk to since this cancer is so rare. 

I found that it really helps and I am grateful to everyone who contributes.

 

nicotianna

AC III

One important aspect of my treatment was ignored.  And that was vaginal stenosis.  Talk to the radiologist, gyne onc or rehab therapist who is an expert about this matter.  Probably a vaginal dilator during therapy may be recommended to diminish this side effect.  Others on this site can give your advice regarding this as well.

Nic

tallorder5793

my experience

I didn't find colonoscopy any big deal. You're sedated for procedure. I didn't have any pain following.

I found first 3 weeks of radiation tolerable. After the 3rd week, I started having trouble with fungal infection in groin area. Doctor gave me med to control that. Most seriously, I developed in 4th week lymphadema. I could not walk for two days. Fortunately, it improved after a couple of days to point where I could walk again. The lymphadema mostly went away completely after a couple of months post-radiation. I also experienced bad, bad problems with BOTH constipation and diarrhea. In my case, meds did little to control the problem. But again, I improved over time post-radiation. 

Every case is different. Just sharing my experience. Wishing you a full recovery!

Phoebesnow

Tanya

Hi,  I'm glad you made it over here.  Vaginal stenosis and menopause due  to radiation should be discussed with your doctor

Tanyasa

Phoebesnow said:

Tanya

Hi,  I'm glad you made it over here.  Vaginal stenosis and menopause due  to radiation should be discussed with your doctor

Pt scan and colonoscopy

I did colonoscopy today , doctor said he didn't see nothing new.It is a good news.

the bad one- my pet scan shown something abnormal in my vagina. So I need to see my G doctor, to find out if it is tumor or not? 

tanda

nicotianna said:

AC III

Hi - I am sorry to hear of your diagnosis.  I hope your PET scan shows no signs of mets.  This whole experience is very frightening & the people on this site will help you through this ordeal.  This cancer is very treatable & many have been cured at your stage.  Forgive me if I am uneducated about new treatments....however, I am unaware of Xeloda as a choice for first line treatment of AC.  The NCCN (National Comprehensive Cancer Network) 2014 guidlines recommend mitomycin & 5FU.  I do not have a copy of the 2015 guidlines handy nor the web site address.  I am curious why Xeloda was chosen.  Everyone has a different experience.  I did not have a lot of pain; rather discomfort.   However, diarrhea is common.  The pain killers will slow that down.  You will receive sedation during the colonoscopy & should not feel pain.  Drink lots of fluids.  Some of the side effects I experienced were taste changes, nausea, poor appetite, wt. loss & fatigue.  I use/d a hand-held shower which helped maintain cleanliness & minimized discomfort.  I applied aquaphor generously.  The radiology dept. will advise you about what products are ok to use.  I had someone drive me to & from my daily radiation treatments.  ACS has Road to Recovery in some areas.  Volunteers drive one both ways.  Feel free to ask questions.  The people here will help you!  I wish you cured or NED (no evidence of disease)!

Nic

Xeloda

the 2015 NCCN Guidelines list Xeloda as an option in place of 5FU  infusion via a fanny pack on days 1-4 and 29-32.  Sloan kattering has been using Xeloda for the past few years.

I thought taking pills would be more convenient than the fanny pack.  I took 5 pills (I forget the dosage) 5 days a week with proton beam radiation 5 days a week.  On the first day, I had Mitomycin, but not on the last day.

 

I had urgency and frequency...no appetite...fatigue,etc.  I only had a few canker sors near the end, but no severe mouth sores.  The worst effect of the Xeloda was hand and foot disease near the end of the cycle.

mp327

tanda said:

Xeloda

the 2015 NCCN Guidelines list Xeloda as an option in place of 5FU  infusion via a fanny pack on days 1-4 and 29-32.  Sloan kattering has been using Xeloda for the past few years.

I thought taking pills would be more convenient than the fanny pack.  I took 5 pills (I forget the dosage) 5 days a week with proton beam radiation 5 days a week.  On the first day, I had Mitomycin, but not on the last day.

 

I had urgency and frequency...no appetite...fatigue,etc.  I only had a few canker sors near the end, but no severe mouth sores.  The worst effect of the Xeloda was hand and foot disease near the end of the cycle.

Xeloda

My understanding of this chemo drug is that after it is taken orally, it converts to 5FU.