New Member - Starting treatment Monday

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  • Marie59
    Marie59 Member Posts: 6
    #22
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    smc0057 said:

    Thanks!

    Thanks to both of you for your welcome and kind comments and tips!  I have a bunch of Immodium on hand and some Aquaphor cream (recommended by the radiation doctor).  I had read about swishing with water and baking soda for the mouth sores, but didn't realize I should start that as soon as treatment starts.  I will definitely do that! My treatment plan is two rounds of Mitomycin C and 5FU (with the take home pump) and 30 radiation treatments.   My biggest worry is the skin burns and fatigue.  I'm a cyclist.  So OF COURSE I get this particular cancer on my bum.  Grrr.   But I'll do what I must and work my way through it.  Appreciate you all so much.  It's nice to have someone to talk to who totally understands what you are going through.  My team has given me tons of info and instructions and numbers to call to report side effects.  They have told me to call immediately so as to stay on top of things, as you both recommend.   

    Hi Sherie,

    Hi Sherie,

    My father just completed his last treatment this past Thursday. He is 86 years old and broke his pelvic bone after his first treatment on 11/27/17 and they had to postpone treatment until he could heal. The reason I mention the fall, is because not only did he have his age as a possible negative, he's been thin and somewhat frail for some time. He got through it and so can you! My siblings and I took turns staying with him. I will tell you that it helps to have a friend and/or family to bring lighter meals and run errands as you will be tired. BUT..... my Dad got up every morning and went to his car with the newspaper and coffee just as he has always done. When he felt tired he didn't drive just backed it out of the garage vs. reading the paper by the nearby river. Routine is important we found - it made him feel normal. He went to the casino once a week as was his routine too except when he was in rehab for his fracture and one week when he was nauseous. The nausea meds really work and these nurses and doctors know what to give you and try if they don't. He found the gabapenten (started in week 4 but some patients we learned start sooner) relieved the discomfort before that it was tramadol with tylenol. He didn't want to take hydrocodone for fear of constipation and he didn't feel he needed it but everyone is different. Certainly it's there if he did which was so great to know. He wasn't good about starting the immodium when he should have and that set him back with diarrhea and "accidents" which was quite unpleasant for him and didn't help with the soreness. He stopped all dairy products and doubled up on the immodium (the doctor said it is ok to do that during treatment). He couldn't get in and out of his bathtub due to his frailty - but he has found sitting in the shower (he has a seat built in but these can be purchased or rented) and placing the shower head such that it would run down his back and his bottom was quite soothing. The aquaphor protects the skin and once it's uncomfortable the doctor prescribed lidocaine and Dad said it was a miracle - they applied some at the doctor's office when he mentioned how uncomfortable he was and he said the burning instantly subsided. After a few weeks he was told to mix together the aquaphor and lidocaine as the latter alone would actually irritate and burn the area. They'll tell you all of this - I don't want to overwhelm you just wanted to share a bit of his story and journey. It's amazing how quickly the 6 weeks of treatment have gone by. He's feeling the effects of the last chemo now and as we've said all along taking it one day at a time. He's been told each day he will feel stronger. Attitude is key and you're already on the right track there! God bless you and all who have endured this treatment - as we reminded our Dad from time to time - it's the road to CURE! We're not done yet - this we know but each day is closer to full recovery. His golf league starts at the end of April - this is his next goal - to get strong enough to get the sticks out! Good luck Sherrie you can do it!!!!

     

  • mp327
    mp327 Member Posts: 4,440 Member
    edited February 2018 #23
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    Marie59 said:

    Hi Sherie,

    Hi Sherie,

    My father just completed his last treatment this past Thursday. He is 86 years old and broke his pelvic bone after his first treatment on 11/27/17 and they had to postpone treatment until he could heal. The reason I mention the fall, is because not only did he have his age as a possible negative, he's been thin and somewhat frail for some time. He got through it and so can you! My siblings and I took turns staying with him. I will tell you that it helps to have a friend and/or family to bring lighter meals and run errands as you will be tired. BUT..... my Dad got up every morning and went to his car with the newspaper and coffee just as he has always done. When he felt tired he didn't drive just backed it out of the garage vs. reading the paper by the nearby river. Routine is important we found - it made him feel normal. He went to the casino once a week as was his routine too except when he was in rehab for his fracture and one week when he was nauseous. The nausea meds really work and these nurses and doctors know what to give you and try if they don't. He found the gabapenten (started in week 4 but some patients we learned start sooner) relieved the discomfort before that it was tramadol with tylenol. He didn't want to take hydrocodone for fear of constipation and he didn't feel he needed it but everyone is different. Certainly it's there if he did which was so great to know. He wasn't good about starting the immodium when he should have and that set him back with diarrhea and "accidents" which was quite unpleasant for him and didn't help with the soreness. He stopped all dairy products and doubled up on the immodium (the doctor said it is ok to do that during treatment). He couldn't get in and out of his bathtub due to his frailty - but he has found sitting in the shower (he has a seat built in but these can be purchased or rented) and placing the shower head such that it would run down his back and his bottom was quite soothing. The aquaphor protects the skin and once it's uncomfortable the doctor prescribed lidocaine and Dad said it was a miracle - they applied some at the doctor's office when he mentioned how uncomfortable he was and he said the burning instantly subsided. After a few weeks he was told to mix together the aquaphor and lidocaine as the latter alone would actually irritate and burn the area. They'll tell you all of this - I don't want to overwhelm you just wanted to share a bit of his story and journey. It's amazing how quickly the 6 weeks of treatment have gone by. He's feeling the effects of the last chemo now and as we've said all along taking it one day at a time. He's been told each day he will feel stronger. Attitude is key and you're already on the right track there! God bless you and all who have endured this treatment - as we reminded our Dad from time to time - it's the road to CURE! We're not done yet - this we know but each day is closer to full recovery. His golf league starts at the end of April - this is his next goal - to get strong enough to get the sticks out! Good luck Sherrie you can do it!!!!

     

    Marie 59

    I am so glad your dad finished his treatment.  It sounds like he did quite well, all things considered.  I'm sorry that it got off to a bad start with the fracture though.  I wish him a swift recovery so that he can get back to his normal routine and that golf league!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited February 2018 #24
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    Marie59

    It was so good to get an update on your dad! I'm glad his treatment is over and I sure hope he gets back to his golf game! 

  • Gail L
    Gail L Member Posts: 2
    #25
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    Marie59 said:

    Hi Sherie,

    Hi Sherie,

    My father just completed his last treatment this past Thursday. He is 86 years old and broke his pelvic bone after his first treatment on 11/27/17 and they had to postpone treatment until he could heal. The reason I mention the fall, is because not only did he have his age as a possible negative, he's been thin and somewhat frail for some time. He got through it and so can you! My siblings and I took turns staying with him. I will tell you that it helps to have a friend and/or family to bring lighter meals and run errands as you will be tired. BUT..... my Dad got up every morning and went to his car with the newspaper and coffee just as he has always done. When he felt tired he didn't drive just backed it out of the garage vs. reading the paper by the nearby river. Routine is important we found - it made him feel normal. He went to the casino once a week as was his routine too except when he was in rehab for his fracture and one week when he was nauseous. The nausea meds really work and these nurses and doctors know what to give you and try if they don't. He found the gabapenten (started in week 4 but some patients we learned start sooner) relieved the discomfort before that it was tramadol with tylenol. He didn't want to take hydrocodone for fear of constipation and he didn't feel he needed it but everyone is different. Certainly it's there if he did which was so great to know. He wasn't good about starting the immodium when he should have and that set him back with diarrhea and "accidents" which was quite unpleasant for him and didn't help with the soreness. He stopped all dairy products and doubled up on the immodium (the doctor said it is ok to do that during treatment). He couldn't get in and out of his bathtub due to his frailty - but he has found sitting in the shower (he has a seat built in but these can be purchased or rented) and placing the shower head such that it would run down his back and his bottom was quite soothing. The aquaphor protects the skin and once it's uncomfortable the doctor prescribed lidocaine and Dad said it was a miracle - they applied some at the doctor's office when he mentioned how uncomfortable he was and he said the burning instantly subsided. After a few weeks he was told to mix together the aquaphor and lidocaine as the latter alone would actually irritate and burn the area. They'll tell you all of this - I don't want to overwhelm you just wanted to share a bit of his story and journey. It's amazing how quickly the 6 weeks of treatment have gone by. He's feeling the effects of the last chemo now and as we've said all along taking it one day at a time. He's been told each day he will feel stronger. Attitude is key and you're already on the right track there! God bless you and all who have endured this treatment - as we reminded our Dad from time to time - it's the road to CURE! We're not done yet - this we know but each day is closer to full recovery. His golf league starts at the end of April - this is his next goal - to get strong enough to get the sticks out! Good luck Sherrie you can do it!!!!

     

    Marie .. thank your father

    Marie .. thank your father for being such an inspiration.  Prayers & love to your family

  • MsHolmes45
    MsHolmes45 Member Posts: 3 Member
    edited March 2018 #26
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    caholz33 said:

    You Sound Ready!

    Hi Sherie.  I love your attitude, ready to get it started and over.  Always keep your mind on the blessing of going through treatment that is truly considered curative ... I'll take some pain and discomfort for such an excellent prognosis.   I had Stage II as well, in 2013.  Same protocol except not as many radiation days, I did 26.  Please add laxative to your arsenal (haha, "arsenal" is such an appropriate word, huh?)  ESPECIALLY since you'll be prescribed opiod pain meds I'm sure.  I felt like I spent 7+ weeks concentrating on "poop consistency managment," constantly evaluating meds, food type, food amount, hydration, physical activity, etc, etc., all in terms of how to get it out the other end with minimal trauma!  I ended up having to take laxatives regularly because of the oxy.  There was NO WAY I was going to let myself get constipated and have to push anything out.  Welcome to this bizarre journey where half the time your mind is on lofty thoghts of survival and love and the meaning of life, and the other half on how to take care of your bum hole.  It's crazy but it's totally doable!!!

    "poop consistency managment,"

    Good one!!  Love this board, except going into a 2nd or 3rd cancer discovery, I find I can no longer stand to be around upbeat people.  Though, here, I know we are all going through similar journeys.   One other annoying thing I do, I talk to complete strangers about what I'm going through.  I use to be extremely shy, oh well.  Thanks everybody!!

  • MsHolmes45
    MsHolmes45 Member Posts: 3 Member
    edited March 2018 #27
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    MsHolmes45 said:

    "poop consistency managment,"

    Good one!!  Love this board, except going into a 2nd or 3rd cancer discovery, I find I can no longer stand to be around upbeat people.  Though, here, I know we are all going through similar journeys.   One other annoying thing I do, I talk to complete strangers about what I'm going through.  I use to be extremely shy, oh well.  Thanks everybody!!

    Correction

    Sorry everyone, I've been reminded I have

     

     

     

     

     

     

    METASTATIC ADENOCARCINOMA in anal canal?

     

    My original diagnosis uterine and endometrial, with travel to spine and vaginal cuff. The problems I'm having are the tumor that extends outside into anus. My mistake. I have always had a tough time expressing myself.  I'm sure those on this board have kept up.  Again, thanks.

     

     

     

     

     

     

     

  • smc0057
    smc0057 Member Posts: 17
    #28
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    5 more treatments to go!  So

    5 more treatments to go!  So close to the finish line now and I can't wait to be done.  As so many of you have said, the skin burns are the worst part.  I'm taking my pain meds and getting through each day as it comes.    I know I haven't spoken up much, but I've been reading and you are all so helpful so I thought I'd give you an update.   

     

    Sherie

  • mp327
    mp327 Member Posts: 4,440 Member
    #29
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    Sherie

    So glad you are nearing the finish line!  Hang in there--you've got this!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #30
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    Sherie

    Thanks for the update! Hang in there!

  • smc0057
    smc0057 Member Posts: 17
    #31
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    Thanks ladies!  There for a

    Thanks ladies!  There for a bit I wondered if I could finish, but I know I can now, just a little bit more!  SO GLAD!  

  • smc0057
    smc0057 Member Posts: 17
    #32
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    Treatment completed!

    Just an update.  I’m 6 weeks post treatment today.  It’s been hard and the week after treatment was the worst.  My fatigue is pretty much gone thank goodness.  I’m working full time now.  AND IM RIDING MY BIKE!  I know there’s a “new” normal after a cancer diagnosis and treatment, but finally getting to ride has made me feel like myself again.  Of course my strength and stamina aren’t what they were,but I’m building up slowly.  Next I’ll be starting pelvic floor rehab as soon as the insurance approves he referral.  Hoping for a bit more bowel control and some work on the horrible vaginal stenosis radiation left for me.  PET scan follow up will be the end of June, as will be the follow up with my surgeon, oncologist, and rad oncologist.  I’m trying hard not to dwell on all that and just to enjoy being here and feeling better!!!

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited May 2018 #33
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    smc0057 said:

    Treatment completed!

    Just an update.  I’m 6 weeks post treatment today.  It’s been hard and the week after treatment was the worst.  My fatigue is pretty much gone thank goodness.  I’m working full time now.  AND IM RIDING MY BIKE!  I know there’s a “new” normal after a cancer diagnosis and treatment, but finally getting to ride has made me feel like myself again.  Of course my strength and stamina aren’t what they were,but I’m building up slowly.  Next I’ll be starting pelvic floor rehab as soon as the insurance approves he referral.  Hoping for a bit more bowel control and some work on the horrible vaginal stenosis radiation left for me.  PET scan follow up will be the end of June, as will be the follow up with my surgeon, oncologist, and rad oncologist.  I’m trying hard not to dwell on all that and just to enjoy being here and feeling better!!!

    smc0057...

    Yay!!!! Congrats to you! Also kuddos on getting back on that bike so soon, I would have needed to strap a big fluffy pillow to my seat at 6 weeks, haha. I'm sure you'll notice an improved strength and stamina quite a bit more over the summer, but be sure to take it slow and don't overdo either.

    Thanks so much for posting as I think its important for others just starting out to read encouraging news.

    Keep us posted as you continue your journey of health!

    katheryn

  • mp327
    mp327 Member Posts: 4,440 Member
    #34
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    smc0057

    Congratulations on completion of your treatment and making such a good recovery!  Things will only continue to get better!

  • linda7408
    linda7408 Member Posts: 21
    edited June 2018 #35
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    girl starting treatment tomorrow

    Hi. I am a year and a half out since diagnosed andI still feel like its all sureal. Mine was in the lower rectum. I had radiation, chemo and then the apr surgery. Really not a big deal surprisingly so you have any questions no matter how embarrassing or litle it seams, send your question my way! Good Luck!! You are stronger than you think.

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