Monday is the first day

2»

Comments

  • ShellWell47
    ShellWell47 Member Posts: 8
    December 14
    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
    Gulamin Member Posts: 134
    mbh97766 said:

    Progress Report
    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

    Update
    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.
  • Gulamin
    Gulamin Member Posts: 134

    December 14
    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!

    Thank you
    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.
  • Cookie48
    Cookie48 Member Posts: 15
    mp327 said:

    Hi Gulamin!
    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.

    Chemotherapy (Mitomycin & 5 Fluorouracil)
    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
    mp327 Member Posts: 4,440 Member
    Gulamin said:

    Update
    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.

    First week
    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.
  • mp327
    mp327 Member Posts: 4,440 Member
    Cookie48 said:

    Chemotherapy (Mitomycin & 5 Fluorouracil)
    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

    Hi Candy!
    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
    z810840b Member Posts: 207 Member
    Cookie48 said:

    Chemotherapy (Mitomycin & 5 Fluorouracil)
    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

    one daydrip
    Cookie..your doctor is correct..the one day drip is just given the first round...hugs alyse
  • mp327
    mp327 Member Posts: 4,440 Member
    z810840b said:

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

    Obvious variations in treatment
    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