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suzynanny
Posts: 36
Joined: Jun 2011

Hello everyone. My name is Suzy diagnosed with stage 11 anal cancer no spreading on May 6th. Will start six weeks of radiation and chemo starting Monday. Got my tats today. I have been lurking and just thought it was time to tell you all hello. Any advice appreciated. Sorry I dont know the abbreviations on things.

z's picture
z
Posts: 1251
Joined: May 2009

Hello Suzynanny, and welcome, although I'm sorry you had to find us. I remember my tattoo day. Its very scary I know, but with me after I started and saw what to expect I felt more at ease. The radiation techs were very nice and knew their jobs. The chemo nurse was great too. I think the medical professionals knowing their jobs well helps tremendously, and they can help with any questions. As you go along you might want to ask for nausea meds for the chemo week. Now I only took the nausea medicine once as the chemo didn't make me that nauseas, and drink plenty of water. You need to ask for the mouth rinse to prevent mouth sores from the chemo. Not everyone gets them, but I did, and didn't have the mouth rinse before I got them, and probably if I had used the mouth rinse I would have done better and not gotten them. I was given bag balm (used on cow udders) by the radiologist. I would take a bath, go get zapped, come home take a pain pill and apply the bag balm which was very soothing. I didn't need the pain meds until about the 3rd week and I only took 4 a day, whereas I was prescribed to take up to 12. Well I gave you a lot of info, and I'm sure others will add to it. If you have any ?s at all please ask. Keep us posted. Lori

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mp327
Posts: 2903
Joined: Jan 2010

I'm sorry your circumstances have brought you here. I'm sure you are very anxious about starting treatment, but there are so many of us who have been through this and come through it okay--so will you! You've asked for advice, so I have copied information that I posted awhile back to Ron, whose wife was recently diagnosed. You can read through what I said to him. There are also a couple of websites you should visit for some very complete information: analcancerfoundation.org and the website for the National Comprehensive Cancer Network NCCN.org. You will have to register on the second site, but it's simple, and will allow you to access the very latest guidelines for treatment of anal cancer. I hope this helps!

"Hi Ron--I'm so sorry that your wife's diagnosis has brought you to this support forum. But bless you for being her advocate and trying to learn more about how to help her get through her treatment. I was diagnosed with anal cancer in June 2008 and went through 2 rounds of chemo (mitomycin & 5FU) and 6 weeks of radiation. You mention rectal cancer as your wife's diagnosis, so I'm a little unsure about what chemo drugs she might be receiving. However, that aside, she will most likely experience extreme fatigue, nausea, possible loss of appetite with weight loss, mouth sores, hair loss, skin irritation/burns, diarrhea and painful urination. I will try to address each of these, based on my own experience.

1) Fatigue--When her body tells her it needs rest or a nap, she needs to do just that.
2) Nausea--Gingerale, ginger tea, hard candy, crackers, jello--all good things to have on hand.
3) Loss of Appetite--Now is not the time to try to adhere to a healthy diet, as fruits and veggies may cause her serious digestive problems. Whatever she feels like eating and agrees with her, that's what she should eat. I would try to include some form of protein in every meal or snack.
4) Mouth Sores--These can really get bad, so I would recommend that she routinely rinse with a solution of water and salt or baking soda several times a day. If she gets mouth sores or thrush, there are specially prepared prescription mouthwashes that can help. Regular toothpaste should be substituted with Biotene or some other mild paste.
5) Hair Loss--There's not much one can do to prevent this. The chemo drugs that I received do not cause hair loss in everyone, but I lost about half of my hair in patches all over my head. If she experiences hair loss, check with your ins. co.--they may cover the cost of a wig, which for many, boosts their morale.
6) Skin Irritation/Burns--Hopefully, she has already been given some soothing creams to use to keep her skin from breaking down. However, the effects of the radiation are cumulative, so skin will deteriorate over the course of treatment if not cared for. She can use pure aloe, Vitamin E liquid, or get a prescription for something else, such as Silver Sulfadiazine cream, which is what I used. She just needs to make sure that there are NO traces of any creams, lotions or ointments on her skin prior to radiation. I would also recommend getting some men's boxer shorts for her to wear to reduce contact with her skin. She may even want to go bottomless around home as much as possible.
7) Diarrhea--This was one of my most serious side effects. The first to remember is that everytime she has a BM or urinates, her body loses fluids. A good rule is to drink a glass of water after each trip to the bathroom, insuring that she won't become dehydrated. Dehydration can land people in the hospital and is very serious. To curb the diarrhea, she's probably already been given some type of anti-diarrheal medication and perhaps given some suggestions of foods which can help slow things down, such as the BRAT diet (bananas, rice, applesauce and toast). I used Immodium (over the counter), which helped, but some people must get prescription meds to help ease diarrhea.
8) Painful Urination--Get her a spray bottle to keep filled with water by the toilet. When she urinates, she can spray her genital area with water and keep the urine from burning her skin so badly. Also, regular toilet paper should not be used, as it will be much too abrasive. Get some type of alcohol-free disposable wipes for her. Again, she needs to take in plenty of fluids, as this will help dilute her urine.

There is an e-book written by a woman named Theresa Mayhew that you can download at the following address: theresamayhew.com. It was written by a woman who was diagnosed and treated for anal cancer and contains lots of helpful suggestions from other anal cancer survivors, including myself. I would highly recommend it. There is also a book titled "The Chemotherapy Survival Guide" which might offer lots of good advice on dealing with chemo side effects."

Captain11
Posts: 88
Joined: Apr 2011

Hi, Suzy... I too am sorry you have to meet us this way. Just a few tips... Keep the faith... Find things to laugh about and laugh often. Stay hydrated.. Ask the doc for nausea meds and take them if you need them..keep up with your nutrition. Don't worry about a regular "healthy" diet, as long as you are getting protein, and lots of it. Ask for mediation for mouth sores, I was prescribed BMX mouth solution. Gargle and rinse with salt water or water with baking soda. Use the biotene toothpaste and mouthrinse. Keep water by you at all times. Also try to get the biotene gum to chew. When you feel tired, which you will, rest, and when you get a burst of energy, don't overdo, because chances are you will feel worse for it the next day. I took the imodium for the diarhea and used the BRAT diet. Take the imodium for the diarhea as soon as the first bout of it hits you. Don't wait, because diarhea dehydrates you. A caution about the nausea meds (I have compazine), they can make you tired in addition to feeling weak from the treatments. I had the 31 rounds of radiation and the mitomycin and 5FU infusions. I had a portcatheter put in so I did my infusions at home a week at a time. After about the 3rd day of my weekly chemo treatments, I started feeling so drained I didn't want to eat...force yourself to eat and keep your strength up. I lost 40 of my 137 pounds. My hair thinned out in blotches, but I was not bald. The American Cancer Society in my area donated wigs and hats and bandannas. I made my own bandannas and because they were so colorful, I was asked if I would like to make some for other patients, which I did. As far as the radiation, it is cumulative and you skin will get red, then brown, then a grayish color, and it will peel off, at least mine did. Use pure aloe... it is very soothing. Get tucks pads and use them instead of toilet paper. Also use alcohol-free baby wipes with aloe instead of t.p. I was given samples of Aquaphor for the irritated skin. It works, so use it. I also used a sitz bath to clean myself, and just for soothing warm water on both the front and back. Try to stay positive. I was diagnosed with stage 3B and I am now 15 months clear. Also, very important: have a family member or friend go with you to your appts, go with a list of questions and/or concerns, and get answers...very important!!! If your doc doesn't want to discuss it now or suggests to "wait and see" go find another doctor, because you deserve to know everything right now: what to look for, what is the next step, etc etc. Make sure you are comfortable with your doc and that he/she has a good bedside manner... that is so very important!!!! I wish you good luck and my prayers are with you. God bless

suzynanny
Posts: 36
Joined: Jun 2011

thank you all for the great info.

sandysp's picture
sandysp
Posts: 788
Joined: May 2011

Everything is sure moving forward fast for you. I was diagnosed May 5th and am just seeing the radiologist and oncologist tomorrow and Tuesday. I would imagine treatment will start right away for me too then. Looks like we will be going through it "together". I am T2n1 but that's as much as I know. I had to have surgery for "multiple masses in my pelvic bowel" on Wednesday and everything turned out to be benign. Yeah!!!!! I had cervical cancer in 1976 and I guess this is what happens to cervical cancer survivors sometimes.

Good luck. I'll be watching for your progress.

suzynanny
Posts: 36
Joined: Jun 2011

Glad everything turned out benign. I have done my first chemo and two rounds of radiation. Chemo making me sick. I have the pump right now for four days. Hopefully you get started soon. I dont know alot about this type of stuff but learning as I go. Good luck and I will also be watching your progress.

sandysp's picture
sandysp
Posts: 788
Joined: May 2011

Four days. You are almost done with that old pump. I just got my port today and was tatooed earlier this week. I felt like a cadaver having to lay that still that long! My port makes me feel like I was shot in the arm. You didn't even complain about that! Oh my I'll really be whining when I am your stage. But we are here for each other. I am so glad we have a cancer we have a good chance of getting well from once the treatment is done. Hang in there. You are setting a good example for me. I keep being afraid I'll want to quit before I've even had that pump half the time you've had it. We are all together in this. hugs!

suzynanny
Posts: 36
Joined: Jun 2011

Glad everything turned out benign. I have done my first chemo and two rounds of radiation. Chemo making me sick. I have the pump right now for four days. Hopefully you get started soon. I dont know alot about this type of stuff but learning as I go. Good luck and I will also be watching your progress.

Gulamin
Posts: 132
Joined: Dec 2010

Sending lots of love! Please check in as specific things come up so we can support you!

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