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Treatment to start Thursday

mbh97766's picture
mbh97766
Posts: 39
Joined: Nov 2010

O.K., I admit it, I'm a little scared, apprehensive, nervous, etc... I have been anticipating this for 2 weeks now, getting PICC line tomarrow, chemo/radiation to start Thursday. I'm trying to be brave and realizie that this is what I have to do, I'm well researched and feel good about all my decisions. But now I just want to know what I should expect from those of you who have been there. Will I feel naseau right away, fatigue? Or will that come a few days later. When will mouth sores come (if at all)? What should I look out for as I have this pump over the weekend and no radiation appts for Saturday and Sunday? I appreciate your candor, please.
Darcee

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Darcee
It doesn't all hit at once. In the beginning, for me at least, it was anxiety. Then the feeling that the fight was on and I became determined. The radiation side affects usually do not start right away, for many it towards the third week or so. But it's best to be prepared. Ask your doctors for meds for bowel issues and nausea and even pain. They do help. As for the chemo, it depends. I had cisplatin (don't recall which one you are getting). I was nauseus but never really got that bad. It's very, very important to keep yourself hydrated to protect your kidneys. So find something you like to drink and drink it often. Water of course is best. I drank lemon flavored water and gingerale. If you are on Mitomycin, the chemo side affects could be a little worse than the Cisplatin. In either case you will need to avoid germs as much as possible. No kids birthday parties, hands off door handles, wash hands frequently and dry with paper towels. All to avoid germs and infection while you are on chemo. You want to focus on avoiding any infection that could cause an interruption in your treatment. Sounds like you are getting the PICC line in your arm, that's whay I had. It's awkard at first but you will get used to it. Bathing and not getting it wet is very challenging, but it can be done. My pump was disconnected on Friday and reconnected on Monday. Just needed to flush out the picc line on the weekends. We were staying close to MD Anderson so we just went there to have it done. Mouth sores...hard to tell if it will happen. I rinsed 4-5 times a day with baking soda and warm water and didn't have any. But, again I had Cisplatin and the side affects are not as severe.

Fatigue will come. You could feel it early on just from the stress and anxiety of starting treatment. But for me the real fatigue was about 2 or so weeks into treatment. I just gave into it completely and napped when my body asked for it. I watched brainless sitcoms and slept as much as I needed to.

The very hardest part is the count down period = last week of radiation. It all just accumulates and for me I was wiped out and the radiation burns and itching were bad. Wear loose fitting clothes, sweat pants and shirts with sleeves that fit easily over the picc line if it is in your arm. Cover the picc on your arm with a cutoff mens crew sock, using the top as a band. That will help keep it the area clean and avoid infection. I took baths and hung my arm over the tub. But just in case, my husband covered the area with saran wrap and then taped a small hand towel around it to insure it didn't get wet. We took no chances.

But the good news, the blessing in all of this is that the treatment is relatively short compared to many other cancers.And the cure rate is high. That's what inspired me. Personally, prayer helped me tremendously and I found much strength in my faith.

There will be the days of tears and disbelief and there will be days of "I can do this". It's a physical and emotional roller coaster.

BUT YOU CAN DO THIS AND WE WILL ALL BE HERE TO SUPPORT YOU THROUGHOUT THE JOURNEY.

Good luck, think as many good thoughts as possible.

Sending you positive healing thoughts and keeping you in my prayers.

Liz

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I hope all goes well today with the picc line, then tomorrow is your big day. You will probably not have any side effects the first couple of days. I received Mitomycin, not Cisplatin like Liz got. If you're getting Mito, you may have a little nausea, so take the prescribed anti-nausea meds as soon as you get queasy. I did that and never vomited. Sucking on hard candy and eating jello helped me. I found that having something on my stomach at all times helped, so I would eat jello in the morning as soon as I got up. The fatigue set in with me on day two. I think part of that was just from not sleeping well since the whole ordeal of being diagnosed began, but the chemo definitely made me tired. I never really got mouth sores, but did have thrush during both rounds of chemo. This is a yeast infection of the mouth (your mouth will turn white inside). If you begin to notice this, immediately notify your med onc's nurse and get a script for Magic Mouthwash. It's disgusting, but it did clear up the thrush. I did not feel any pain or itching from the radiation until I was into week 3. Itching came first and was pretty intense. I kept applying lots of Aquaphor and that helped some. Important: Make sure that you have no traces of creams or lotions on your skin prior to radiation treatment, as it could increase burning). Some people have had good look using Aloe or Vitamin E (the liquid out of the capsules) on their skin. If what you're using is not helping to soothe the burn, ask your radiation oncologist for something else. Mine gave me Silver Sulfadiazine cream. I did not lose all of my hair, but on day 21, it began falling out in patches all over my scalp. Try to get a shampoo that has Biotin in it (I used a brand named Jason available at GNC stores), as this will help strengthen your hair, and don't wash your hair every day. As for staying hydrated, this is crucial! Many people wind up hospitalized due to dehydration--they don't drink enough, plus have diarrhea which makes it much worse. A good rule to follow is every time you pee, drink a glass of water. That way you'll be replacing fluids on a regular basis. If you notice burning with urination, get a squeeze water bottle to keep by the toilet. As you pee, spray water on your genital area. This will dilute your urine and decrease the burning. As Liz recommended, loose clothing will be much more comfortable. You may want to get some men's boxers to wear and instead of wearing pants or jeans, switch to skirts or very loose fitting sweats. When at home, you can go bottomless. As for eating, your appetite may tank (mine did). It's important to get protein with every meal or snack and eat whatever tastes or sounds good to you. This is NOT the time to worry about getting all your fruits and veggies--you may not be able to tolerate them anyway. I ate a lot of ramen noodle cups--bad for me, I know, but tasted better than anything else!

As for having the pump over the weekend, I'm sure you'll have no problems with it. Your nurses should give you thorough instructions on what to do if the line becomes kinked. Also, they should give you a 24-hour phone number to call should you have any questions or problems.

I will be thinking of you today and tomorrow as your journey begins. You will get through this, just like so many of us have. It won't be fun, but it's doable and I know you can do it! Come here with any questions you have and we'll tell you what we know. Take care and best wishes.

grandma2selena's picture
grandma2selena
Posts: 199
Joined: Jun 2009

What you are feeling now is normal. In the beginning for me I only felt anxiety. Now I did not get sick the time through my treatment, and never had to take medications for nausea. I did have to take anxiety medications all the way through though. The real big thing I noticed from the very get go was my taste buds were the first thing to change. Within about the first few days I did feel a state of fog which wore off after a week or so. During that time I couldn't have told you one day from the next.

Radiation wise it takes a while before you feel any affects from that, then it is just a general feeling of being overly tired. I really did not feel the full affects of the radiation until the end then I was just exhausted.

My suggestions. Keep regular on pain management, and medications for anxiety. Eat small meals very frequently instead of trying to eat three large meals a day. Wash hands frequently, rinse mouth frequently. Use Aloe Vera Jell on the area where receiving radiation. Apply it often throughout the day. Find something that you enjoy doing that will keep your mind busy, for me it was copying the bible book by book into a notebook, I also had my granddaughter that we are raising who was 2 at the time to keep entertained or who entertained me. Towards the end I baked up a storm! Get as much rest as you need. Always do something that will make you look good of a morning a little fresh powder on the face, with some lip gloss or Vaseline on the lips.

Ok, now for over the entire time, I did not get mouth sores, I did get thrush, which did go into a secondary infections. So watch for any signs of fever. You will burn from the radiation, that usually happens towards the end. When this begins, soak in the tub several times a day. They should give you ointment to treat the burned area, apply it often. Have people come by to visit, these visits will boost your spirits, so long as they are not sick. Don't worry about what you might look like, they love you and that is why they are there, to give you moral support.

Keep us updated on how it goes!

mbh97766's picture
mbh97766
Posts: 39
Joined: Nov 2010

You guys are fabulous. Thank you so much. Here goes....off to the doc's. ;)

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

Please let us know how the picc line insertion goes today--I am sure it will be fine.

Dog Girl
Posts: 100
Joined: Sep 2010

First off; Good Luck. I am about 18 months post treatment and am NED, so I am extremely thankful and I am just waiting for the two year mark to come and go.

They pushed steriods before my chemo treatments (mitomycin and 5 FU)and that helped a lot. I don't know if that is standard procedure or not, but it seemed to help. I didn't get too sick, but took the meds as soon as my stomach was upset.

My appetite was good for quite a while. Once it got bad, all I wanted was cold diary; e. g. cottage cheese, yogurt, ice cream/shakes, etc... I ended up losing 43 pounds (which I could well afford to lose and have since gained most of it back), but I think it was as much a factor of less in meant less output which was painful. Consider drinking Ensure or something like that as it will give you protein which you will need.

You'll be seeing your chemo and rad drs every week, so tell them what is going on and if it is something comes up between visits, call the nurses. I used Silverdene (sp?) and I still don't go anywhere without my travel pack of wet wipes and Aquaphor.

I told my Rad dr. that I considered my treatment to be "Cancer Bootcamp" in that it was going to be real rough, but I was going to get through it and you will too. Ask any question (you soon learn that shyness and embarrassment go by the wayside when you have anal cancer) on this board and you will probably get a lot of good suggestions. Some will work and some won't work for you, but it is good to talk to someone who has been down the path before you. I didn't find this site until a couple of months ago and it would have been good to know about it while I was going through treatment. Let us know how you are doing. PS: While my hair thinned, I didn't lose it.

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

to the information that these awesome women have provided for you. Of course everyone is different and the the severity of the side effects vary. Hopefully yours will be on the minimal side.

I will add that I was gifted six months of Netflix and that really helped pass the time. I ordered all the movies I had ever thought I wanted to see but hadn't and also many that I just wanted to watch again.

Dehydration was responsible for the worst of my discomfort so drink, drink, drink. Good luck to you and know that we are all here to help you along.

Blessings,
Joanne

mbh97766's picture
mbh97766
Posts: 39
Joined: Nov 2010

PICC line insertion went really well today. Aside from all the prep, cleansing and draping, it took only about 10 minutes with one stab at it. Didn't hurt, but is aching now, I know that to be normal. At hospital at 9:00 PST tomarrow for initial treatment.
Hoping to sleep tonight, but doubt it. Anxiety is a major factor for me right now. I'm anxious to start treatment, get it over with, yet happy to delay so don't have to face it. Family staring at me intently trying to guage how I feel.
It is such a comfort to be able to come here, to this place and talk to you all.
I changed my profile picture. My daughter drew this for me and presented it to me last night. Not only is she incredibly talented, but she touches my soul in a place no one else can.
I'm a very lucky woman.
I will try to remember that

TJ30
Posts: 11
Joined: Oct 2010

Your in my prayers! And you will do fine!

grandma2selena's picture
grandma2selena
Posts: 199
Joined: Jun 2009

I am glad that the PICC went well. As many have said the treatments are tough, but with one day at a time you will get through them. We will be here for you anytime. That is such a lovely picture your daughter drew for you. Very talented. I will keep you in my thoughts and prayers.

mp327's picture
mp327
Posts: 2939
Joined: Jan 2010

I'm so glad the PICC line insertion went without problems yesterday and I'm sure that today will go well too. I know it's an anxious and scary time, but this is all going to be okay. Those of us here will support you every step of the way. Take it one day at a time and soon it will be done. Come here with your questions and frustrations--we'll do our best to give you answers and hugs.

z's picture
z
Posts: 1257
Joined: May 2009

Hi I hope everything went well today with the initial treatment. I only took the nausea meds a couple of times, as I didn't experience that much nausea. When they give the initial treatment they also give medicine for nausea. I also had the myto and 5fu the standard treatment for anal cancer. Hopefully, this week will go by fast for you. I know I was just happy to have the pump off as I sometimes forgot and would get up and suddenly remember. I did get mouth sores the 1st cycle, but not the second. They just don't know who will get them and who won't. Like everyone suggested keep your mouth moist and rinse often. I show ned and I completed treatment 6-30-09. I hope your treatment week will zoom by. Lori

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Hi Darcee..I just wanted to wish you lots of luck tomorrow.The other ladies gave you great advice.I know you are scared..but you will be fine.I am now 28 months NED.The treatment is rough,but you will get through it. I never got mouth sores or thrush.I did not loose my hair either.Please drink at least 3-4 16oz bottles of water a day...its so important.I also had a pic -line and it was problem free.The itching drove me crazy..i took benedryl for that.Also. at the end of your treatment...ask your doctor about dialators..something i am sorry i wasn't told about.This site is so informative Darcee....Knowledge gives you power. Hugs ..alyse

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Darcee
Your daughter is very talented. What a beautiful picture! Glad all went well today with the picc line. For me it did ache for a few days. I got very paranoid about it but was reassured that it was normal. I'm so glad yours took on one attempt. I had to have three attempts. The soreness will subside after a few days.

Not sure where you are having treatment but you may want to ask about dilators during treatment. It really helps prevent after effects of radiation. MD Anderson uses them during treatment and, as awkward as it is...believe me it was awkward...I really think it avoided many post treatment issues. If you need more info just let me know.

Best of luck on day 1.

Liz

sissy310
Posts: 300
Joined: May 2010

Just adding my two cents (which really is not much as every else covered it quite nicely). I just wanted you to know I am thinking about you today as you are going through treatment and hope that everything goes well for you. I considered myself fortunate in that treatment, while not pleasant, was not as bad as I thought it would be. I think knowledge was power there and having the tools and resources (that I got from this site and from the wonderful people within it) made a major difference I believe. I was prepared so to speak for a side effect or symptom and knew I could cope with it by sitzbaths or creams or whatever else was needed and a few ones I found out on my own, like using baking soda in a warm bath to soak was so comforting and made me feel better...as did a warm wet washcloth on my bottom helped as well. Come in here whenever and ask or vent - you will find that it helps immeasurably. Take care. Marilyne

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

Welcome to the board. I am sorry you need to be here, but glad you found us. Hopefully, our experiences can provide you with the comfort you need.
Best wishes,
Norma

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