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Monday is the first day

Gulamin
Posts: 132
Joined: Dec 2010

It's all arranged. Monday is the first day of radiation. I have not yet heard from the oncologist about the chemo schedule and am starting to wonder... doesn't that usually start the same time? The doctors all are optimistic and say that the cure chances are very good. The treatment difficult, yes but with a positive outlook. That sounds so good and I am hanging onto every word. I have been staged at 2T0N0M and they will treat 30 sessions with radiation and the chemo (isn't it usually two weeks? week on and then 4 weeks later??). FU5 and mitomisin. I feel positive with occassional emotional break downs... it's just such a big word, that 'c' word. I am getting anxious...

mp327's picture
mp327
Posts: 2981
Joined: Jan 2010

I'm glad to hear that you will be getting this treatment started. Yes, your chemo should begin the same day as the radiation, according to standard protocol. Chemo will be during weeks 1 and 5. You are getting the standard chemo drugs, Mitomycin and 5FU, along with the typical number of radiation treatments. I would suggest calling your oncologist's office to find out when they have you scheduled to begin chemo. I'm sure you haven't slipped through the cracks, but you need to make sure--stuff happens. Outcomes are very good for anal cancer, especially Stage I and II, so your docs are right on with their optimism and you should be very encouraged. Think positive! I wish you the very best with your journey.

Gulamin
Posts: 132
Joined: Dec 2010

Will call this morning just to be sure. Thank you for your words of encouragement. It's anxiety producing.

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

I started my regime last Thursday. I also am T2NOMO. I have always considered myself a "tough cookie" and did my research and planned to face this thing head on. The two nights leading up to treatment onset I couldn't sleep at all. I was so anxious. The day we arrived at the hospital my blood pressure was high - it's never high, it was anxiety. They administered an ativan and I was then fine. I don't know what I expected, did I plan on vomitting immediately? did I plan on feeling the stuff enter my blood stream? I really don't know, but I was scared. The bottom line is it was rather anti-climatic. I felt nothing, the meds they gave me for nausea worked, and the ativan made me sleepy. Over the weekend I kept a close eye on my body and waited for "something" to happen. Nothing did. Just a slight metallic taste in my mouth. Chemo pump was removed on Monday. Now (Wednesday) I am experiencing a severe sore throat. My immune system is compromised so I gather I'm getting a cold. Mouth still tastes tinny. But something is happening "down there". I feel it in my bowels. That rumbling feeling that preceeds diarrhea. Also an itching in the radiation area. I suppose "it's" beginning.
I imagine it's possible for me to manifest symptoms by a heightened over-awareness or just plain over-thinking. What will come, will come no matter what I do about it. I need to stop this mind thing I have going on. I'm going to Barnes and Noble today and picking up a book on meditation. I think I need to learn/practice that instead.
I wish you all the best. Please stay calm, we're all in this together.
Darcee

mp327's picture
mp327
Posts: 2981
Joined: Jan 2010

This may be a red flag for the beginning of mouth sores, so please don't just dismiss it as a cold coming on. Even if it is a cold, you need to make your doctor aware of it. Your immune system is being attacked and it will be hard to fight off such things as colds and flu. I would suggest keeping an eye on your temperature--a fever would not be good. I'm not trying to alarm you, I just want to make you aware that even small things can turn into big things when you're going through chemo. Please don't hesitate to call your doctor!

Gulamin
Posts: 132
Joined: Dec 2010

I am sure you are a tough cookie... stay positive too! I am trying to stay busy and have ordered a few imagery cd's that do guided imagery to help you through treatment. They are specifically for radiation and chemo. I will let you know if they are any good. I figure it may be easier to listen to it than try to read a book. I am determined to change my life through and after this... this has to be some sort of warning sign to live life more fully and reduce stress levels. Let's stay in touch. Would that be ok? As you are a week ahead of me?

We get through this together!

Thankful for the group's words... the optimism of the doctors is truly refreshing and appreciated. They do know what they are doing. I feel encouraged as it seems this treatment has been around for many years (over 20 years) and it is the one that consistently seems to work.

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

Gulamin -
In golf, we have a term called "going to school on you". We watch someone else putt, and depending on how the ball rolls for them, we make adjustments in our own putt. I would love to have you "go to school" on me as I am only just one week ahead of you. I'd also love to hear how those CD's work for you, as I too, am determined to change my life and they way I approach things now and when this is all over.
My sore throat has been getting worse, and as Martha has suggested, I am seeing my oncologist tomarrow am. I suppose in this battle, nothing should be assumed or taken for granted. It's becoming difficult to swallow, so I've discovered Pedialite popcicles and a mouth wash developed for oncology patients called "Prevention".
Good luck with your PICC installation - mine went pretty easily. My only complaint is the constant itching, but in the big scheme of things, I can certainly handle that.
I wanted to tell you also about a website called the CaringBridge.org. It's a great place to go and share your story with family and friends without having to repeat yourself so many times a day. I love keeping people infomed about my progress, but I don't want my whole existence to be about cancer. Having this website allows me to address it once maybe twice a day, and then move on. When people ask how I'm doing I can direct them to the site. People can also request to be emailed as you update your "journal". It's something to look into if you're inclined.
Take care, thinking about you, Darcee

Gulamin
Posts: 132
Joined: Dec 2010

How is it going?

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

I am almost 2 weeks into this. As I said, initially I felt nothing but mild fatigue. Then I was plagued with mouth sores. Since I last posted they got pretty bad, but the Miracle Mouthwash helped. They seem to be dissapating a little, just a few canker-like sores on my tongue but I can finally swallow my own saliva, a first in three days. I have been able to get food down, but during the worst it was only cold and soft things, jello, ice cream, applesauce. I'm lucky it only lasted a few days (notice my positive attitude that it won't be coming back)!
I also couldn't stand the dressing on my PICC line any longer. I have developed an allegic reaction to the adhesive tape and my skin had started to welt and itch. I marched up to the oncology nurses station and said, "I can't do this anymore!" They agreed and changed my dressing to a clear plastic type sheeting material. We also skipped the "skin prep". My arm is happy now and I'm no longer regretting chosing this over a port - because believe me, I was.
I suppose that this shows me that, at leaste in my case, my team is dedicated to ensuring my maximum comfort during this ordeal and I really appreciate that. I hope you have the same experience with your "team".
O.K., now the nitty-gritty. The diarrhea started on Monday. My Radiation doctor told me that he wants me to have one bowel movement, and each day, and then take the immodium. So that is what I have been doing. Unfortunately today, I haven't had one, soooo hopefully tomarrow?
Also my skin is starting to react. I feel a tightness and an itching. No burning yet, but it hurts to wipe myself. I have my squirt bottle ready and this fabulous foaming aloe vera wash that I found in the hospital pharmacy. Spray it on, gently wipe it off. And I feel clean. So thats working for me so far. Nothing about my hair yet, but that's the leaste of my worries, and I'm not as fatigued as I anticipated. So, as they say, so far, so good.

How are you? How's your anxiety. Are you able to relax, rest, be strong? Let me know.
Hang in there,
Darcee

mp327's picture
mp327
Posts: 2981
Joined: Jan 2010

It's good to get an update from you. It sounds like you have faired pretty well so far. The side effects you describe are common among us--diarrhea, mouth sores, fatigue. I hope that your skin issues don't get too severe. Keep up with the lotions/ointments--whatever you're using, just make sure you get it all removed prior to getting radiation every day. Take care and remember to take it one day, one step at a time. You can do this!

Gulamin
Posts: 132
Joined: Dec 2010

Almost one week into this and I feel strong because the side effects have not been bad yet... every once in a while a squeezy stomach and pain where the tumor is. Take tylenol and that helps. So far, can still eat most foods and am trying to be good about what I eat as long as I can do that. I am rinsing with baking soda and salt solution to hopefully avoid the mouth sores. Radiation, so far, ok. I am feeling strong and have lots of support. I really do look at this as a wake up call and am trying to really look at my life and the changes I want to make. My 2 year old also keeps me going. I will get a spraybottle. What do you use to wipe? Regular toilet paper? Also, no hair loss yet... and no vomitting or nausea.

I am grateful to hear your experiences a week out... that really helps to just know what to watch out for.

Sounds like you are doing really well. I wish you a good week ahead. Looking forward to checking in with you in a few days.

mp327's picture
mp327
Posts: 2981
Joined: Jan 2010

Hi Gulamin--

I'm glad your first week has been pretty uneventful and your side effects are minimal. As for your question about toilet paper, the answer is NO!, don't use regular TP, as it's much too abrasive. Get some flushable wipes that contain NO alcohol, as alcohol will sting. I hope you continue with minimal side effects. Please keep us posted.

Gulamin
Posts: 132
Joined: Dec 2010

It's scheduled and they will put the pic line tomorrow. Then, Monday is chemo after the radiation.

Does anybody have advice as to my boy? He is 2 and goes to daycare 3 days a week. I would like him to keep the schedule just so he can have that normality in his life. But, am worried about him brining home viruses from the other kids especially since its the season.

Cookie48
Posts: 15
Joined: Nov 2010

I was just wondering......I know the normal protocol is Chemotherapy (Mitomycin & 5 Fluorouracil) week 1 & week 5, concurrent with radiation treatments.
I can't remember which name is the 5 day drip and the other is one day. Is the one day just done on wk 1 or is it wk 5 too? I know the 5 days drips are both weeks. The doc just did the 1 day the wk 1 only. I thought it was suppose to be both times.

What was your protocol?

Thanks,
Candy

mp327's picture
mp327
Posts: 2981
Joined: Jan 2010

I believe the standard protocol is to get Mitomycin on day 1 and day 29 and 5FU on days 1-4 and 29-32 via a pump. That is what I received. However, mitomycin has some bad side effects and perhaps this is why your doctor did not do a second infusion of it. Were your blood counts too low, perhaps? This would definitely be a question to ask your doctor. I know of another person who only got the Mitomycin during the first round, due to very low counts.

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

Cookie..your doctor is correct..the one day drip is just given the first round...hugs alyse

mp327's picture
mp327
Posts: 2981
Joined: Jan 2010

From this discussion thread, it is apparent that there are variations in treatment among doctors. I believe if you'll check out the National Comprehensive Cancer Network website and look at the most current treatment protocol for sqaumous cell anal cancer, it says:

Mitomycin 10 mg/m2 IV bolus days 1 and 29
5-FU 1000 mg/m2/d IV days 1-4 and 29-32

I'm not saying the other protocol is incorrect, I'm just going by what the guidelines from NCCN say. www.nccn.org

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

I agree you should call your Oncologist to make sure you are scheduled to start your Chemo the same day as your radiation. Stay optimistic, as my oncologist told me along with all the doctors I seen at the time and throughout, that while none of us want cancer if we could pick a type to have this is the one we would want, as it has they highest cure rate. I thought at the time that was strange to hear, but those words stayed with me all the way through my treatment and helped get me through it all. I will be praying and sending positive thoughts your way.

Gulamin
Posts: 132
Joined: Dec 2010

That is similar to what my doc said it I am also hanging onto those words. My doc also said that all the people she has seen come through with anal cancer - all of them made it through and did not come back. That sounds wonderful. I just want to get started now and get this going not to give this thing any chance to do any more damage. I am hoping that my mom and my boy will keep me busy so that I don't get overwhelmed with my thoughts. Thank you for sending positive thoughts. I am happy to have found all of you.

z's picture
z
Posts: 1258
Joined: May 2009

Yes, Since its only Wendesday, you should call today and make sure they have everything in order for you to began chemo on Monday. I was Stage II NOMO also. I had the exact same treatment you will be having. I completed tx (treatment), on 6-30-09 and show ned, (no evidence of disease). The only time I cried was the day I asked my mom to come to my house my 1st treatment day, I think everything just set in and it became real. You will do fine, as this is a curable cancer and thats the 1st thing my general surgeon said to me.
Lori

Gulamin
Posts: 132
Joined: Dec 2010

Thank you. I feel optimistic but then sometimes it just hits me ' is this real '? I can't believe I am talking about chemo and radiation. My doctors also feel really optimistic combined with the fact that I am younger and healthy... we should get through this. How did you do during the treatment?

z's picture
z
Posts: 1258
Joined: May 2009

I did pretty well through the tx. I used bag balm, (used on cow utters), for the radiated sites and that was soothing. My radiologist gave it to me. I didn't have much nausea from the chemo and only took the nausea meds a couple times. The side effects are cumulative and as you near the end of your tx you will be able to tell that the side effects are building. All of the side effects are manageable and there are medicines to counter act all of them. I know I did get tired and was able to rest whenever I needed to, as I took 2 months off of work. Keep us posted and whatever side effect you get, one of us has surely had it and we can tell you what worked for us. I wish you well Lori.

Gulamin
Posts: 132
Joined: Dec 2010

Thank you, Lori. That sounds very encouraging. I will be sure to ask about any symptoms and am hopeful that I will get through it as you did. I will ask about bag balm.

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

Welcome to the board. I just finished treatment a few months ago. I am NED and I was T4N1MX, Stage 3b.
Best wishes,
Norma

Gulamin
Posts: 132
Joined: Dec 2010

That is wonderful news!

Gulamin
Posts: 132
Joined: Dec 2010

That is wonderful news! How did you get through it?

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

Well, luckily I found this board beforehand. I read all the old posts to know what to expect. It was comforting to be able to talk to others on the board, as no one can understand this until they have dealt with it.
It is just one day at a time, that is really the only way to handle it. Oh yeah, and lots of sitz baths. Hang in there it will be over before you know it.
Norma

ShellWell47
Posts: 8
Joined: Jun 2010

I want to encourage you to continue to look at the big picture of HOPE as you enter the difficulties of treatment - today Dec. 14 is my *one year anniversary* of being diagnosed with anal cancer. My last scan was clear! Thank God! The year that brought so much discouragement has also brought so much joy, albeit slow improvement, on this side. No one likes to hear CANCER, but they do have this one dialed in for a pretty good prognosis, although in the thick of treatment you'll have dark days. It is a season that will pass, believe it or not. I pray you have lots of practical hands-on support, and look Up for encouragement. We have been there and feel your pain, and we will pray for comfort and joy in spite of it all. God Bless You!

Gulamin
Posts: 132
Joined: Dec 2010

For your encouragement, thoughts and prayers. It is so much appreciated. Congratulations on your one year anniversary. That is truly a blessing and I look forward to the day I can make this statement. Life has changed, now and forever.

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