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My fight progess

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Was diagnosed about a week ago after exploratory surgery where they thought it may be a thrombosed hemmoroid (spelling). I did see the Dr. yesterday and we talked a bit, but he was not able to give me too many answers because I need to ask the oncologist those questions. But he did answer any questions he could. I did find out the reason that I have been in such pain is that the cancer is laying right on top of my muscle down there so that is where the pain is coming in. After my Dr. appt with the VA I had a call waiting at home from the oncologist so I called back and have an appt. Mon afternoon to see him. Want to get this thing started and over with as soon as possible. I did find out that the VA works hand in hand with University Medical Center here in Tucson and thats where I will have my radiation.
Will post again after talking with the oncologist. But reading so many of these post, I thank all of you because I was a little more prepared going in to see the doctor. I also am picking up lots of tips, that I think I will need, as to lotions, creams, and even popsicles when and if I get the mouth sore.
I am also trying to keep a positive attitude and sense of humor about this. I told my friend that since my butt will be radioactive, I therefore will be considered a "hot piece of a**" LOL Gotta find humor where you can.
Hugs and prayers to all.
Pattie

rds711
Posts: 113
Joined: Dec 2011

Hi Pattie,

I am sorry you were diagnosed. I am sure your mind is like a whirlwind, mine was. I was diagnosed in 12/2011 and started treatment 2/27/12. I have only 3 more radiation treatments left and finished my last chemo today. You will find an amazing amount of helpful information here and people are here to answer any questions you might have.

My biggest recommendation is to start a folder with a tablet to write down questions and responses as you get them because it seems as soon as youre in your car you forget half of what they said or some questions you meant to ask. If you have someone who can go with you to MD appointments that can be helpful too as they most times remember more than you can.

The good thing is that this type of cancer is readily treated with high cure rate. There is someone here who wrote this phrase that has become my mantra, "weeks for years!", meaning several weeks of treatment to buy years/lifetime. I hope that it helps you as it has me.

If planning chemo ask about having a porta cath inserted. It is a temporary port placed under the skin in your upper chest that can be accessed for IV sticks. It has been a blessing for me, no digging in my arms for veins and actually saves my peripheral veins for future use. Chemo can be hard on veins.

Remember a good diet and lots and lots of fluids. And keep your MD's aware of how things are going, if youre in pain please let them know.

The beginning I think was the hardest for me, tests, then waiting for test results etc. Once treatment started it calms down as you start doing something to fight back. Hang in there and visit the board as much as you need. Youre not alone. And keep that sense of humor, it will help get you through your journey :) I will keep you in my prayers.

Randy

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thank you so much for the warm welcome Randy. I have gone to the doctor with my list of questions and also I have been bringing someone with. In fact it is my boss and she pretty much insisted on accompanying... not in a pushy way, in a good way. Kind of makes it easier that she does though because now I don't have to go to work and explain things to my boss. LOL. She really has been great and very supportive.
Weeks for year... I like that and it fits. I was told I will more than likely get the port. Have one chemo treatment, several weeks of radiation then another chemo. Of course this may change after my meeting with the oncologist.
That is so great that you are nearing the end of your treatment. It must be a tremendous relief to be done with the chemo.
I am a little anxious, but I can understand that I will calm down a bit once treatment starts... right now it's just like 'lets get this show on the road' the sooner I start the sooner I am done.
Thanks for the helpful suggestions Randy.
Prayers and Hugs!
Pattie

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

Hi Pattie, and welcome, sorry you had to find us. I completed tx for anal cancer on 6-30-09, and so far so good. The 1st thing my general surgeon said to me, is if you have to have cancer this is a good one to have. Highly curable. Well I went with that ready to start tx. The oncologist, or chemo nurse, will give you written handouts of what side effects to expect. For me the mouth sores were the worst side effect, and I wish I had done more to prevent them. The pain will be managed with medication, along with any nausea. I didn't take the nausea meds except once or twice. I know for me once I saw I was going to be able to do this and got started killing the cancer, I felt stronger. Please keep us posted. I wish you well. Lori

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Hi Lori,
Thank you so much for the warm welcome and CONGRATS on being cancer free now. I think my Dr. said that same thing about this is the one to have if you get one.
Question. The mouth sores - are they like canker sores? I have heard people mention them but still don't have a good grasp on what to expect with that. I heard lots of cold popsicles may help. :-) May have to stock up before treatment.
Will keep you posted. Thanks Lori.
Prayers and hugs
Pattie

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

I never used the toothpaste your suppose to use, I think its biotene. They are like canker sores but hurt more. So to keep the moisture in your mouth while undergoing chemo is the way to avoid the mouth sores. I had mytomicin along with 5FU and it goes after fast dividing cells, such as cancer. We have other fast dividing cells that are not cancer such as in our mouths. They should give you all this information, for the side effects of what ever chemo you will have. Some anal cancer patients have cystpan, I know I'm not spelling that right. So different side effects. Martha has a great list and other posters of what to expect. So you could do a search in the anal cancer discussion board for mouth sores, and I bet a lot will come up. I wish you well. Lori

AZANNIE
Posts: 390
Joined: Mar 2011

Hi Pattie,
As you've found out, this site has a wealth of helpful information. Sorry you have to be here, too. I finished treatment June 2012 and fortunately didn't have mouth sores. It was the other end that was sore... It's been almost a year ago that I started treatment - 2 rounds of chemo (mitomycin and 5FU) and 30 radiation (IMRT) zaps. So far I'm NED (no evidence of disease). I have another PET scan in May and am keeping my fingers crossed.
Best wishes to you!

Ann

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thank you Lori and Ann. And I was wondering what NED stands for now I know. :-)
Hopefully I will be one of the few that don't get the mouth sores too. So glad you are NED Ann. Will be praying it stays that way.
Thank you both for a wealth of information. Any info I can be armed with is a good thing. Its the unknown that causes anxiety for me.
Prayers and Hugs
Pattie

Captain11
Posts: 88
Joined: Apr 2011

Hi, Patti... I had dry mouth and mouth sores. Try to gargle with the warm salt water, and/or with the baking soda in water. Also use the biotene toothpaste and mouthwash, even the biotene gum there is also a biotene liquid gel moisturizer for your mouth. All the biotene helps. It has no harsh flavors (like mint or cinnamon, etc) that regular pastes and washes do. Those flavors will really sting your mouth. If you get the sores that is. I had the 5fu and mitomycin along with the 31 days of radiation. After completing my tx's my first scan showed that the cancer had spread. It was alarming to say the least, but, not totally unheard of. In fact, what really happens is that sometimes the cancer cells are so small that they go undetected... which is what happened to me. Then I needed a more invasive chemo... which was the cysplatin... 6 gruelling treatments of weeklong infusions through the port. But, I made it through. Some tips for you:
1) Continue to go with someone to your appts. Write down your questions for the doc...no question is silly or unimportant... I took a spiral notebook with me, dated the appts, wrote my ?'s down and left space in between for the answers. I used that spiral notebook as a journal, and kept referring to it as time went on. It is true that while you're in the doc's office you hear everything... when you get home, you can't remember a thing the doc said.
2) Rely on family & friends to help with your"chores". I made a to do list, and when people said "call me if you need anything" I just handed them the list and asked them to pick something. don't be proud. some day you will be able to return the favor.
3) Most important: Keep up with your nutrition!!!! You may not feel the energy to eat, you may lose your tastebuds, but take the Boost, Ensure, Carnation instant breakfast, ice cream, etc. I got to a point where I started cravings... for hot dogs, one week.. the next week, McDonalds chicken wraps, peanut butter and jelly sandwiches another week, ice cream, another week (and I don't like ice cream). Keep the fluids going. If you drink juice...dilute it at least half strength. If you get the mouth sores, soda is painful, so, don't drink it.
4) Take whatever pain meds you think you may need (the doc will prescribe them for you).
5) When going through the radiation.. use the Aquaphor, because your skin will definitely need it. I bought an aloe plant, and had my hubby put that on my butt. Definitely use the sitz baths... they will help.
6). If you feel the need to take a nice hot bath... DON'T... Take a warm bath instead... the hot bath will lower your blood pressure.. sometimes way to quickly... and you definitely don't need that.
7). If you experience diarhea (sp?)... take the imodium. Don't wait... the "D" will continue and will seriously dehydrate you... so, take the imodium.. you can take up to 8 pills a day... I usually only had 1 pill, only a couple times did I need 2 and only once I needed 3 in a day.
8) The doc will give you scrips for nausea... take them if you feel you need to.. they work. Also, if you are not naseous, you can eat.. which you need to do to keep up your strength.
9). Rest... If your body says it is tired... Listen to it. Rest. And if you get a burst of energy... don't overdo it, because you will pay for it the next day. That's just how this treatment works. The chemo is a poison. It kills the cancer, and also good cells... You need those good cells to function properly... so, don't fight it... rest when you can.
10). Keep a positive attitude. I know this is a lot and it seems negative. But, take these tips.. keep us posted. And mostly, keep laughing... I watched the entire tv series of Hogan's Heroes, lots of slapstick comedy, cartoons, etc... Laughter really does help.

I wish you the best. Keep us posted. Ask any ?'s, we will all be here to help. Like someone else posted... sometimes the docs don't tell you everything you may or may not experience. As you read through these posts, you'll find that among us all we have experienced just about everything... and don't be afraid to vent. We all have bad days... so we all understand... and we will help get you through it. Take care. Thank you for your well-wishes for me and my hubby. and God bless.

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thank you so much for all the good info Captain11. I think I will be planning a shopping trip to get the biotene. My doc also said I should start taking the Carnation Instant breakfast and L-Glutemine now as it will help decrease the radiation burns. I went and got Gas-X and immodium this weekend so I have it on hand. Thanks for the idea on the juice. Never thought to cut it in half with water. Thats a good idea.
Take care/God bless and hugs.
Pattie

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Saw the Radiation Doctor today and he seems real nice. Dr. Nam Nguyen. He did say it was pretty serious but is confident he can treat it. I have to go have some bloodwork done on Wed and then next week have to go back to UMC (University Medical Center) on the 10th to have a barium test done so they can get a good map of the area. Then they will know more about how to plan to attack it. Have a meeting with the Chemo people on the 12th.
Don't know more than that for now. Will let you know as I know.

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

I'm glad you are getting prepared ahead of time for your treatment and it sounds like you are getting closer to the start. I'm glad you like your doc. I wish you the best with the upcoming barium exam and hope that the tumor is small and localized. Please keep us posted on how things are going.

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thank you so much. Getting as prepared as I can so hopefully have minimal side effects.
Will keep you posted.
Prayers and hugs
Pattie

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Met with the chemo Dr. on Thur. Found out what they have planned for me is that I won't have to do a few days of chemo, and get a port in my chest. Rather I will have one treatment of Mitomyicin intravenously on the day I start my radiation. And then I will just have to take 2 pills a day on my radiation treatment days (Capecitabine). Yeah! much better than getting something put in my chest for several weeks and risking infection with it. I will not lose any of my hair, but I will probably get nausea and have exploding diarrhea.... doesn't that sound fun. But they are prescribing some anti nausea meds for me and I can take Imodium D (have stockpiled a few bottles already). Took one more blood test to Friday morning down at the VA then have a Chest CT scan on Sun. Then I just have to wait for the doctor to tell me when I begin the treatment. I am thinking it will probably be around April 23rd. Could be off on the date, but should be close.
Getting close to getting this thing taken care of.

rds711
Posts: 113
Joined: Dec 2011

I know it feels good to finally get the plan down! The waiting for it all to come together was crazymaking for me!

They mentioned the chemo pills to me in the beginning but my insurance didnt buy it. Though the port didnt bother me much it did take ingenuity to get a shower done hehehe, so at least you dont have to deal with that!

I finished treatments 10 days ago and have turned the corner feeling much better. You sound like a very determined lady who can laugh, that is so going to serve you well!! You will get through it faster than you think. Remember keep the fluids coming, the instant breakfast was great for me. Gatorade is also great if the diarhhea starts and they have a drink with protien that I used when treatments stopped as you need the protien to help heal.

I was able to work through the first 2 weeks from home without much problem then went out on short term disability to be able to just concentrate on me and what my body needed. The 4th week I began to really feel it and by the last week I was pretty zapped. Naps are your friend, rest when you need to.

Pattie, you're in my prayers. Like some one told me "it's time to kick some cancer butt!!!!" I am cheering for you!

Randy

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thanks Randy! And Congrats on being 10 days done with the treatments. I wish you a speedy recovery period. My doctor said I should be able to work through most of the treatment so I am going to try. Going to get a donut pillow to help out at work. I have some pretty awesome people I work for, they are also good friends who started their own engineering company out of their home, so thats where we work from. She has been bringing me to all my dr. appts so far and has been great. They have also told me they want me to pack a bag and keep it at their place in their spare bedroom....just in case I don't feel well and can't drive home or need a nap....whatever. But they have been awesome....of course when I am awake they will probably try to put me to work...LOL.
I did find a Blue Bunny frozen yogurt with the active cultures in it...Yeah!!! I really hate the other yogurt as much as I try to mask the flavor it just tastes nasty to me. So I was excited about that.
Thanks again for your kind words. I am so glad that I found this site before I started treatmments. Have gotten some wonderful advice and tips from everyone.

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

I'm glad you have a plan and tentative start date for your treatment. I know you are anxious to get started and get it over with. I hope the CT scan shows everything is okay in that region. As for the exploding diarrhea, how well I remember it! Not fun, but it will only be for a short period of time, so try not to let it get you down. Good luck with everything and please keep us posted!

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thank you so much for the well wishes. I hope the CT scan is clear too. I have a feeling it will be (knock on wood). Am stocked up on the Immodium-D so when I start getting the diarrhea I can take one. Got my anti-nausea pills today and should be getting the rest of my pain meds and anti-anxiety meds soon. Asked for something for anxiety to just take every once in a while... not a daily thing. Don't want to feel chilled out for several weeks. Just every once in a while I start thinking about things and I get a bit anxious....just need one for those times. Trying to get stocked up on all the comfort items I will need before I need them like the Charmin wet wipes.... those are the softest and I am sure I will be using those a bunch. Got a ton of Gatorade here, saltines and my protein drinks too.
Better to be prepared ahead of time. :-)
Hugs and Prayers to you mp327!

Captain11
Posts: 88
Joined: Apr 2011

Hi, Pattie... Hope your scan is clear... Good for you, that you are getting stocked up on the imodium, etc... I still have a bottle in each bathroom and in my pill case in my purse... Also, keep the Tucks wipes near, they will be good for cleansing yourself... and the sitz bath will also be a comfort...
Be careful of the anxiety drugs and the anti-nausea meds... the anti-nausea can make you sleepy, so try not to take both within close range of each other... also, something about the gatorade... it can also damage the kidneys... try not to drink it exclusively... alternate it with water, nutrition drinks, etc... Try not to be anxious... We are all here for you to lean on and to vent to... Trust me, if you can laugh your way through this, you won't need the meds... I was on a serious regimen of aggressive chemo, and I didn't take any pain meds or any anxiety stuff... You have a great support group, both here and at home/work... rely on us all... And seriously, when your body says rest..then REST. Nothing is more important than you keeping up your strength and your nutrition.
The worst thing for me was the fatigue... I have worked many shifts in my career, many doubles and triple shifts with no sleep in between; and I'll tell you, those times were a piece of cake compared to the fatigue that came with my treatments... Sometimes I was too exhausted to even think about eating, or staying awake , or breathing. You may not get the same side effects, but just be prepared that the fatigue factor can be a kicker.

Okay, enough of that... Again, I hope all goes well with your scan, and that your treatments are a walk in the park for you... Keep us posted.
God bless.

AZANNIE
Posts: 390
Joined: Mar 2011

Best of luck with your treatment! Sam's Club brand of baby wipes are great, too! My 9 month old great niece and I use the same kind - lol! Actually, I got her started on that brand. Sitz baths are nice. I don't now how many packages of ramen noodles I ate... Kind of wishing now that I had kept a journal. A few people suggested it, but maybe I didn't want to remember those days - lol!

Ann

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thanks Ann,
I am using the charmin wipes myself. Love them because they are flushable. I do have a sitz bath that I can put over the toilet. Started using that when I thought (and the doctor thought) I had hemorrhoids. I never really liked the Ramen noodles, but if they go down easier during the treatment, I may have to give them another look. Besides they are cheap and I really need to watch my pennies right now where I can.
I see you live in AZ. I myself live down here in Tucson. Great sunny state to live in. :-)
Prayers and Hugs
Pattie

danker
Posts: 739
Joined: Apr 2012

I too live in Tucson and went though it all at UMC. Have Dr prescribe lomotil for the diarrhea, it is stronger than the imodium. Just take it a day at a time and don't be afraid!!! If you read my history you will find we can get through anything. My best wishes to you Pattie

AZANNIE
Posts: 390
Joined: Mar 2011

Yes, that lomotil is good stuff and worked better for me than imodium. Amazing what a tiny pill can do...

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Congrats on being cancer free. Nice to meet a fellow Tucson who also went to UMC. Since I was in the Military in my young life. I am doing this through the VA. I will have the chemo from the VA off 6th and all the radiation treatments up at UMC. They sure are a wonderful bunch over there.
Thanks again for the tips!
Hugs!

AZANNIE
Posts: 390
Joined: Mar 2011

You're welcome! Yes, I live in sunny Arizona - great place in the winter, but not summer (unless you live in northern AZ) - lol! Of course, it's a tad bit cooler in Tucson during the summer - lol! I also ate jello and tried to drink Boost for the protein since I wasn't eating much. Sometimes scrambled eggs would taste good.
Best of luck to you as you begin your journey!

Ann

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Ok, was given the word that I start on Mon. April 23rd. Will have a first dose of the chemo intraveniously then onto radiation. After that I will be taking the chemo pills (2x a day on the days I have radiation). Thanks everyone for the good advice. I will ask the pharmacist at the VA about the other immodium type pills... I will write it down. LOL. Also going to ask him about some spray someone mentioned on here that really helped so you just spray it on and don't have to risk hurting yourself more by rubbing it on. My CT scan on Sunday turned out just fine, they did not find anything else... .thank goodness. Still been chugging down those Carnation Instant breakfasts but did find a good frozen yogurt by Blue Bunny with the live and active cultures in it, so I have been... GLADLY... doing that. :-)Just cannot stand the other yogurt. Got a boatload of Vicodin delivered to me yesterday... 180 pills... and get to refill twice....geesh. They are prepared that I may be in some pain eh? Well hopefully I will be one of the lucky ones who ..yes... still has some pain... but not as bad as thought.
Thanks again everyone. Will let you know my progress.
Hugs and Prayers.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Good luck Pattie - you're on the way to getting rid of this beast! You've got a great attitude and that will help you through this. Be sure an let us know how you're doing.

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thanks Rose! I appreciate it! I will be sure to keep posting and letting you know how it's going.
Hugs and prayers!
Pattie

AZANNIE
Posts: 390
Joined: Mar 2011

Best wishes to you as you begin your cancer fighting journey. This too shall pass...

Ann

rds711
Posts: 113
Joined: Dec 2011

Pattie,

SO glad things are finally getting under way for you, the waiting drove me nuts!

I am now 2 1/2 weeks out from end of treatments and doing very well, can finally sit on my butt as opposed to my hip hehehe. Got rough for me at 4-5 weeks into radiation, until then wasnt bad at all.

Please remember drink,drink,drink noncaffeine fluids. It is imperative to stay hydrated. Protien is also important for healing.

I know you can do this Pattie with your sense of humor to pull you through. My radiation Oncologist told me that people with a good outlook and sense of humor seem to do much better than those without.

SOOOOO kick that cancers ASS!!!!! Fight back!!! And laugh in its face! :)

One day at a time!!

Youre in my prayers and I am pulling for ya!

Randy

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thanks Randy... .going to really try and keep my sense of humor on this. In fact, I am a huge Star Trek fan and I was thinking that when I go to radiation... I am just going to imagine a Phaser gun set to disintegrate the cancer each and every time. :-)
Thanks for your tips. I don't drink coffee or tea and very very rarely drink soda so I should be ok on not getting the caffeine.

And congrats to you to being down to the wire on your treatments. Only a few more weeks to go for you! Hang in there.

Hugs and prayers
Pattie

Captain11
Posts: 88
Joined: Apr 2011

Hi, Pattie... Glad to see that you are finally on your way... Yes, keep the laughter going... I think I mentioned I watched every episode of Hogan's Heroes, Bob Hope movies, Monty Python and even Benny Hill.... I just kept laughing...
I am glad you have the pain meds... I didn't need any... maybe you won't either. You may be able to psyche yourself out of pain... just like Rose said about visualizing yourself on the beach. How is the Blue Bunny ice cream???
When you get to the butt lotions... also think of using the Tucks pads for wipes... I used those and the store brand of baby wipes... but be careful to get the ones with the aloe and none of that harsh stuff.... I think my one daughter uses Huggies and says they are very gentle.

Glad to see that your CAT scan turned out fine.

Remember to stay hydrated.... chew sugarless gum also to keep from getting the dry mouth. I hope this goes easy for you... which I am sure it will.

Keep us posted. God bless.

cap630
Posts: 150
Joined: Jul 2011

I'll be thinking of you tomorrow... Keep us posted.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Good luck Pattie - stay calm if you can. I have a special technique I use whenever I'm going through an uncomfortable stressful thing - maybe it will help you too. I lie back (or sit back), close my eyes, and will my body to relax. One muscle at a time starting with my brain, haha. I just say 'relax - down girl', make my body go limp, then I think of the beach. Of the waves rolling gently in and out, peaceful and calming. Works for me (almost) every time. :)

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thanks Rose. That is a good way to relax. I do deep breathing but I think that thinking about the beach and waves would be very good to visualize. Thanks for the tip!
Hugs and Prayers
Pattie

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thanks Cap630! Will keep you posted. :-)
Hugs and Prayers
Pattie

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Thanks Cap630! Will keep you posted. :-)
Hugs and Prayers
Pattie

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

Best wishes to you today as you begin treatment. I know you are anxious, but you can do this! We are all behind you and cheering you on! I wish you a smooth first day and hope you'll keep us posted on how things went.

torrance
Posts: 118
Joined: Jan 2012

Pattie,

Congratulations on beginning your journey and being one step closer to done! Each day is one day done and over with. Stay in the moment and keep focused on the journey. Remember your journey will be different than each of ours. Don't get anxious if you do not react the same as one of us might have and always remember you can come here for reassurance.

Mouth sores...my chemo nurses had me drink, sip on supercold ice water when they administered the chemo. I never had a problem with sores. So don't anticipate the worst. Take it as it comes.

I didn't have any problems with sleepiness with Zofran given for nausea. I did faint the day after I started my first round of chemo.

Pain meds...take them if needed and don't hesitate changing them if they are not effective. However, don't stop taking me, like I did. I went through horrible withdrawls and ended up in the emergency room. For me, my pain came when I needed to use the bathroom and I don't think the pain meds did anything to help with that. When I wasn't in the bathroom I wasn't in bad pain. Remember they can also cause constipation.

Immodium and lomotil...lucky for me I didn't have huge issues with this. Be careful, constipation can be just as miserable. You may at some point want to add a stool softener to your arsenal.

Vaginal stenosis...ask your rad onc about using one. If he recommends use during treatment or after. Mine definitely said after as it would be far too painful during treatment. I believe him as when I first started after treatment it was very painful. I also had issue with tissue fusing so you may want to ask him about using premarin at the opening to prevent fusion and keep things softened and flexible.

And on a funny note....I heard this about the plight of anal cancer survivors..."Everyone wants to save the boobies, no one wants to save an *******!" So I thought maybe I should have a badge made for my rad onc that says,, "I save *******s!" And another one...if we are the face of anal cancer, does that make us buttheads! Hope it doesn't offend anyone, isn't meant to, but hopefully provides a chuckle to someone.

UR in our thoughts and prayers!
Joanne

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

Good advice and I love the humor! We have to laugh about this, don't we!

KathyMart
Posts: 3
Joined: Apr 2012

Hi everyone....Just started week two ...of radiation treatment. Week One I did the 96 hours of the 5 FU with a push of the mitomycin C along with my radiation treatment. I will have the chemo again in my 5th week and have 4 and a half more weeks of radiation treament. The hardest thing right now is the mouth sores and the burning feeling in my mouth. I am to the point I am hardly unable to talk. I do the swish and I was prescribed the miles solution. Not helping. Haven't been able to eat anything for 3 days nows. I am drinking ensures. Any other suggestions? I do see the medical oncologists today. I am terrified to go through that next round in the 5th week. I have Addison's Disease which is an auto immune disease so I wonder if my sympomts are just intensified due to my already compromised immuned system. Thanks for letting me share.

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

So sorry you have a reason to be here. The mouth sores can be miserable. I had tenderness in my mouth and thrush, but luckily no actual sores. Have you tried rinsing with a solution of water and baking soda or salt? Some have good luck with that, so you might try it. Soft, room temperature foods might be the most tolerable right now, along with the Ensure or any other nutrition drinks you can swallow. Just try to keep up the nutrition, as it's very important, along with plenty of fluids, as you do not want to get dehydrated. I know this is rough, but you will get through it. Let us help you with any questions or concerns. We are here for you! I wish you the best!

KathyMart
Posts: 3
Joined: Apr 2012

Hi Mp... Yes My husband made up the solution and I was using it while I was on the chemo before the sores even came. The docs said they had never seen anything like it. Headed out today for radiation, then to see the medical oncologist.Didn't know it would land me in the treatment center for 2 hours because yes I was dehydrated. On the positive side, doc said the mouth sores and the "burn mouth syndrome" will not get worse it can only get better. So while I sat getting some fluids in, my sweet husband went to the grocery store and stocked up on some ensures!! I am wondering will there be any other symptoms of the 5fu that will appear later ie losing my hair, the issue with the hands and feet I have read about? How about the radiation? This all happened so fast to our family. I am 46 with 3 wonderful girls and husband in 2 weeks our whole life changed. Any info would be so appreciated.

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

I hope your docs are right about the burn mouth syndrome getting better. Sorry you had to get fluids, but dehydration is not good, so that was the right thing to do. As for hair loss, I experienced thinning of my hair (which was thin to begin with) and probably lost almost half of it. It started coming out on day 21. There isn't much you can do about it, but I would recommend not shampooing very often and not using the blow dryer. Also, using a shampoo and conditioner that contains biotin may be helpful. I got some good products at GNC, brandname Jason. As for the neuropthy, I did not experience that. I'm not sure it's a common side effect of these chemo drugs, but I could be wrong about that. My main issues were diarrhea, loss of appetite and burns. Make sure if you are using any types of creams, ointments or lotions on your skin that you have removed them completely prior to getting a radiation treatment, then reapply afterwards.

You will have a few weeks that won't be fun, but trust me, once you get through treatment, healing happens pretty quickly. Keep your eye on the finish line as you take it one day at a time. So many of us have done this and you will too! We're here if you need us.

MyHopen413
Posts: 38
Joined: Mar 2012

The mouth sores will get better. I didn't have them the second round of treatment, perhaps you won't either. It is really important that you drink alot, more than you think. 5FU can cause hair loss, but it grows back. If you get diarrhea, you can combat it by taking either Imodium and/or Lomotil (which is a prescription drug). Also, avoid high fiber foods and milk products. My doctor gave me information about a low fiber diet. Radiation can make you fatigued, so get plenty of rest.
The treatment can be difficult, but it only lasts a few weeks and is usually very successful. Just hang in there

KathyMart
Posts: 3
Joined: Apr 2012

MyHopen so glad to hear you didn't have them the second round of treatment. How long did they last the first round? I am already at the second week and they are still killing me. My endo, which is my primary prescribed me Triamcin/orabas rub on.. kind of hard but it helps. I still am doing the swish and the miles solution. Even drinking hurts, I now go in for fluids twice a week through my picc line for dehydration. I think my hair is thinning but not seeing any around the house.. ie pillow. I have extremely thick hair. I am so happy at the thought I may not have the sores the 2nd round. GIVES ME SOME HOPE!!!!!!!.The Imodium thus far seems to be doing the trick I am up to 5 a day.Today marks the end of my second week of radiation. Any info you can give me is so helpful!!!!

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Hi Kathy,
Sorry you have to be here with us, but glad you found these guys just like I did. I am now 3 days into my treatment but have been give the pills instead of having the port or pump. I am not sure how long my radiation will last. (techs said 5 weeks but the Dr. said 7 at one point) I see the Dr. tomorrow anyway and will ask him then, if only 5 weeks... then yes, I will be happy. Do not feeling out of sorts like this at all. I do hope you find some relief for the mouth sores.
Hugs and prayers
Pattie

sephie's picture
sephie
Posts: 526
Joined: Apr 2009

in the first week of chemo, i had horrible huge mouth sores despite using baking soda,salt water every day. could not get this caphosol until the 6th day. but once started it, it really helped. i rarely hear of this anywhere else but it works. it is expensive but my insurance helped with some of cost. get a script for it. even in Houston regular pharmacies did not carry it but MDAnderson did. sephie

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

I really like the idea of your buttons Joanne!|
You have some good advice too. Thank you. Been getting through the 3rd day now. 1st day went great, no problems. 2nd and 3rd... not so much. It's not so much nausea as a dizziness and lightheadedness feeling. I don't like it at all. Not sure if it's the anti-nausea meds (Ondansetron and procholorperazine) or the Chemo tabs. Going to try and switch the number of tabs I take in the morning (Dr. said I could) I have been taking 4 in the am and 3 in the pm but going to try and switch tomorrow to see if it helps. Anyone else get the dizzy and lightheadedness feeling? And what did you do to combat it? Have to run off for another round of radiation in a bit.
Thanks for all your support everyone.
hugs and prayers
Pattie

Bella_G
Posts: 20
Joined: Dec 2011

I got dizzy the first weeks and felt I wasn't drinking enough fluids. Chemo made food and drink taste bad so I had no interest in eating.

I started taking a protein shake each morning and that helped. Kefir, yogurt and cottage cheese added needed protein without hurting my mouth sores.

Take care and try to stay hydrated!

Pattie13's picture
Pattie13
Posts: 47
Joined: Mar 2012

Not as good of a weekend as I thought it would be from not taking the meds. I've been in pain almost constantly and may be going on the vicodin tonight. I did get one of those donut type pillows (it's actually a travel neck pillow that does the job perfectly and is somewhat adjustable) so that helps me when I am driving.
I talked with my boss today about working from home from here on out, since I only have periods of about 2-3 hours that I kind of feel ok enough to work. And then at some point in the next few weeks I won't work at all for a while. They are totally ok with it and support me 100%.
Didn't get to dizzy today so that was a good thing. Been really watching for the mouth sores and they haven't happened yet.... knock on wood. I am taking preventive measures by brushing with a soft toothbrush, using biotene toothpaste and brushing after I eat anything and also using a tongue scraper. Also have been rinsing out my mouth with baking soda and water. So far so good. I do notice a change in taste though and of course it's all the sweet and salty (comfort foods.... NO FAIR) that are really not tasting good at all right now. Roasted potatoes and chicken gravy is doable though. :-) Cannot believe I do not like chocolate right now... like... come on.... LOL. Hope I like it again a few months after I am done.
I heard of someone using a Peri... type bottle to rinse with instead of the rough TP but I could not find anything in the medical section in the stores. Instead, I was walking through the grocery store and in the utensils and such were some condiment plastic bottles, kind of like the old picnic ketchup and mustard bottles but these were clear. Perfect for filling with lukewarm water and rinsing. So I bought 2. :-)
Anyway, started my second week of radiation today.
Was able to talk to my Dr. after radiation last Thursday..... man he sure doesn't pull any punches (kind of glad though). He said I am T4. It has not spread to anywhere else in my body or my lymph nodes, but it is big and deep and sitting on my sphincter muscle and that why it's T4. He says "If you survive the first 5 weeks of radiation, I will do another scan and then for 2 more weeks hit it with all I've got".... so 7 weeks of this stuff, if my body can handle it. He expects my side effects to be really bad... so he says, because as he say's he is burning it out of me.
Whew... guess thats enough for now.
Hugs and prayers
Pattie

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