New cancer victim and scared

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  • lowens
    lowens Member Posts: 37
    edited August 2020 #22
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    Lizzy5

    Lizzy5,

    How are you doing???

    LOwens

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,371 Member
    edited November 2020 #23
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    All, I am hoping you can help

    All, I am hoping you can help me.  I have a great friend who stood beside me when I went through Uterine cancer, and she was just dx with rectal cancer.  I told her of this site, but she is not there yet.  

    This thread has a LOT of terrific information, and I know her doctors will make a plan for her, but I was wondering if you can answer a few more questions for me:

    - what were the chemo drugs used - IV? pill? How long did you take those?

    - what type of radiation did you have?  how many?

    - any tips (some have been listed in this thread already) 

    She sat with me when I had my chemo and met me for a brachy appointment.  I know it will be tough, but I want to know more about your cancer.  Thank you ALL in advance.  Prayers for all the warriors out there.

    NoTime

  • feckcancer
    feckcancer Member Posts: 189 Member
    edited November 2020 #24
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    Hi, rectal cancer is a completely different cancer to anal cancer therefore the treatment is different so the answers you get from here will not be relevant for your friend. 

    It might be better to ask your questions on the colorectal boards as rectal cancer comes under that category so you will get the correct info there rather than here.  

    Good luck. i hope all goes well for her

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,371 Member
    edited November 2020 #25
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    feckcancer said:

    Hi, rectal cancer is a completely different cancer to anal cancer therefore the treatment is different so the answers you get from here will not be relevant for your friend. 

    It might be better to ask your questions on the colorectal boards as rectal cancer comes under that category so you will get the correct info there rather than here.  

    Good luck. i hope all goes well for her

     

    Thank you.  I appreciate your

    Thank you.  I appreciate your advice very much.  

  • Littleredhead
    Littleredhead Member Posts: 2
    edited July 2021 #26
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    New anal cancer patient

    I was diagnosed a week ago with anal cancer, scared but positive. I am having an MRI July 4, then a biopsy on a lymph node July 8.  The wait between procedures and the start of treatment is driving me crazy. could Anyone tell me how hard is the chemo, I'm terrified of mouth sores.  Did anyone get them, if so, what worked to get rid of them?  Any advice for anal cancer treatments is greatly appreciated 

  • acooper
    acooper Member Posts: 3
    #27
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    Littleredhead said:

    New anal cancer patient

    I was diagnosed a week ago with anal cancer, scared but positive. I am having an MRI July 4, then a biopsy on a lymph node July 8.  The wait between procedures and the start of treatment is driving me crazy. could Anyone tell me how hard is the chemo, I'm terrified of mouth sores.  Did anyone get them, if so, what worked to get rid of them?  Any advice for anal cancer treatments is greatly appreciated 

    new patient

    Hi Littleredhead, i am just finishing with week 3, so i was you about 5 weeks ago. I had a bad case of mouth sores.  I am celebrating tonight as i can finally chew a small piece of gum.  I am to get my second round of chemo in about a week, what i am going to do to try and prevent mouth sores  is to eat ice while getting mytomyacin, if i am able to get the second round of that drug.  I have read on other sites, there is a facebook site for anal cancer,  that if you eat ice it decreases the liklihood of mouth sores. Even if it doesn't work it is worth a try.

    I didnt start getting them until the day after my chemo pack came of, so that would be day 5.  They have a mouthwash called Magic Mouthwash that is specially mixed mouthwash.  I used it a lot, what i later learned is that i was using and then not eating or drinking afterwards so that it would wash away the mouthwash, when in reality i should have used it and then had something to eat, as my mouth was so sore it was very hard to swallow and eat. I also used it right before bed and let is stay on one side of my mouth that was the worst.  I also took hydrocodone every 4 hours to relieve the pain, but i found taking tylenol with the hydrocodone helped my mouth the most.

    I used q tips and foam mouth cleaners dipped in the moutwash to clean my teeth as i have a lot of crowns. It made me feel better to have a clean mouth. They recommend you rinse with salt water and soda mixture even before chemo, which i did, but when the mouth sores started it burned too much to use the salt, so I rinsed with just soda, several times a day.  I also had a bad body rash that started a few days before the mouth sores, the oncologist said i was very sensitive to the chemo so they may reduce it next time.

    Good luck and i know it is hard but try and enjoy the time before you start daily radiation as when that starts you will be tied down Monday - Friday..  Another encoragement i have heard that people have had bad mouth sores the first time but not the second, i am hanging my hopes on that too.

    Best of luck, you can do this!!!!

    Anita

  • PainInTheBum
    PainInTheBum Member Posts: 97 Member
    edited July 2021 #28
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    No serious issues with chemo

    I did ok with the chemo.  Never needed the pills for feeling nauseous like they said I might.  Only a small amount of my hair fell out and wasn't even noticiable.  What bothered me most was just hearing the tiny noise of the chemo being pumped into me from the bag I held on my hip.  It was all in my mind.  When I slept I placed it with a pillow over so I wouldn't hear it.  Oh, and towards the end, my unit shut off twice.  Eventually they replaced the unit.  Other than that I dealed with the chemo part fine.  Radiation burns bothered me more but not until closer to the end of treatment.  Running to the bathroom constantly  was not fun either.  But....chemo part...which I worried so much about wasn't so bad.  I know everyone is different.  Just take it day by day and don't worry.  Just know you'll get through it.  

  • PainInTheBum
    PainInTheBum Member Posts: 97 Member
    edited July 2021 #29
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    PainInTheBum said:

    No serious issues with chemo

    I did ok with the chemo.  Never needed the pills for feeling nauseous like they said I might.  Only a small amount of my hair fell out and wasn't even noticiable.  What bothered me most was just hearing the tiny noise of the chemo being pumped into me from the bag I held on my hip.  It was all in my mind.  When I slept I placed it with a pillow over so I wouldn't hear it.  Oh, and towards the end, my unit shut off twice.  Eventually they replaced the unit.  Other than that I dealed with the chemo part fine.  Radiation burns bothered me more but not until closer to the end of treatment.  Running to the bathroom constantly  was not fun either.  But....chemo part...which I worried so much about wasn't so bad.  I know everyone is different.  Just take it day by day and don't worry.  Just know you'll get through it.  

    also, had no mouth sores, but

    also, had no mouth sores, but prepared myself for the worst which never happened.

  • mg042721
    mg042721 Member Posts: 7
    edited July 2021 #30
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    acooper said:

    new patient

    Hi Littleredhead, i am just finishing with week 3, so i was you about 5 weeks ago. I had a bad case of mouth sores.  I am celebrating tonight as i can finally chew a small piece of gum.  I am to get my second round of chemo in about a week, what i am going to do to try and prevent mouth sores  is to eat ice while getting mytomyacin, if i am able to get the second round of that drug.  I have read on other sites, there is a facebook site for anal cancer,  that if you eat ice it decreases the liklihood of mouth sores. Even if it doesn't work it is worth a try.

    I didnt start getting them until the day after my chemo pack came of, so that would be day 5.  They have a mouthwash called Magic Mouthwash that is specially mixed mouthwash.  I used it a lot, what i later learned is that i was using and then not eating or drinking afterwards so that it would wash away the mouthwash, when in reality i should have used it and then had something to eat, as my mouth was so sore it was very hard to swallow and eat. I also used it right before bed and let is stay on one side of my mouth that was the worst.  I also took hydrocodone every 4 hours to relieve the pain, but i found taking tylenol with the hydrocodone helped my mouth the most.

    I used q tips and foam mouth cleaners dipped in the moutwash to clean my teeth as i have a lot of crowns. It made me feel better to have a clean mouth. They recommend you rinse with salt water and soda mixture even before chemo, which i did, but when the mouth sores started it burned too much to use the salt, so I rinsed with just soda, several times a day.  I also had a bad body rash that started a few days before the mouth sores, the oncologist said i was very sensitive to the chemo so they may reduce it next time.

    Good luck and i know it is hard but try and enjoy the time before you start daily radiation as when that starts you will be tied down Monday - Friday..  Another encoragement i have heard that people have had bad mouth sores the first time but not the second, i am hanging my hopes on that too.

    Best of luck, you can do this!!!!

    Anita

    Hi Anita, 

    Hi Anita, 

    It sounds like I am right about where you are with treatment. I just finished week 4. I, too had severe mouth sores as well as some serious nausea and vomit fro the chemo. I have read that sometimes that second dose of mitomycin isn't given if patients had severe reactions the first time. In your comment above you mentioned eating ice IF you are getting the second round of the drug. Has your doctor mentioned that you might not get it? Just wondering because I had a terrible time the first round of treatment. Not sure if it was the mitomycin or the other 5FU. I don't want to scare others reading this. I hear that most people tolerate these pretty well. TIA 

  • annie4145
    annie4145 Member Posts: 218 Member
    edited July 2021 #31
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    Littleredhead said:

    New anal cancer patient

    I was diagnosed a week ago with anal cancer, scared but positive. I am having an MRI July 4, then a biopsy on a lymph node July 8.  The wait between procedures and the start of treatment is driving me crazy. could Anyone tell me how hard is the chemo, I'm terrified of mouth sores.  Did anyone get them, if so, what worked to get rid of them?  Any advice for anal cancer treatments is greatly appreciated 

    Generally I didn't find Chemo

    Generally I didn't find Chemo that hard.  (One issue was my fault, which I will explain below.)  The first night my tummy felt a little off (not bad) and I decided to go "sleep it off", like I would anytime that would normally if I wasn't feeling well, and didn't take the pills that they gave me.  Well I woke up sick to my stomach, but after that, I just took anti-nausea medicine as directed, and didn't have any problems after that, so I just advise taking the medicine at all times, or at the first time that you start to feel a little bad.  Then during the second session, I just felt a little bad, told the nurse, and they gave me some medicine, so I never had any nausea that time.  The nurses will try to make you feel better.  Just let them know how you feel so they can help you.  It really shouldn't be that bad.  I didn't have any mouth sores at all.  My main issues were with the radiation torwards the end of the treatment and diarrhea, which I had an abnormally hard time with that.  I also was very tired.  Since I lived 1.5 hours away from the hospital in good drive and 2.5 to 3 hours away in a bad drive, I stayed closer to the hospital, and I recommend it if you dont' have someone to drive you or if you live a distance away.  Some of the major hospitals have rooms that you can stay at, or the American Cancer Society can assist with discounted room rates.  The nurses will take great care of you if they are anything like the hospital I stayed out.  Very caring.  Do you know why they are doing the biopsy of the lymph node.  I had one lymph node involvement but I don't think that I had a biopsy of it.  They just zapped it. I was stage 3a, and three years post treatment.  Every year has been a blessing.  My kids were 10 and 12.  Now they are 13 and 15.  

     

     

  • tanda
    tanda Member Posts: 174 Member
    #32
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    Littleredhead said:

    New anal cancer patient

    I was diagnosed a week ago with anal cancer, scared but positive. I am having an MRI July 4, then a biopsy on a lymph node July 8.  The wait between procedures and the start of treatment is driving me crazy. could Anyone tell me how hard is the chemo, I'm terrified of mouth sores.  Did anyone get them, if so, what worked to get rid of them?  Any advice for anal cancer treatments is greatly appreciated 

    Littleredhead

    Chemo and radiation both cause side effects, but not everyone gets the same side effects, or gets them to the same degree.  I didn't get mouth sores; however my chemo was Capeceitabine

    Xeloda) which is 5FU in pill form; therefore I didn't have a fanny pack.  One day one, I did get an infusion of mitomycin and began the pills and radiation; I didn't get the one day of mitomycin the last week along with the Xeloda. (I'm not sure why)

    For anal cance the chemo is a radiosensitizer that enhances the effect of the radiation.  The radiation is what is critical .

     

    NCCN(National Comprehensive Cancer Network...an organization representling a group of  comprehensive cancer centers) and the Analcancerfoundation  has just issued an excellent booklet for patients .  ncccn.org is free, but you may have to create an account.   I am unable to attach a pdf of this booklet to my comment section.  I am 6 years out from treatment and wish this booklet had been available for patients when I was diagnosed.  It is comprehensive and contains the latest recommendations that oncologists follow in treating this cancer.  If you are unable to access this site, please let me know and I will find another way for you to access it.

       https://www.nccn.org/patients/guidelines/content/PDF/anal-patient.pdf    

     

     

     

  • GibiSamtin
    GibiSamtin Member Posts: 9
    #33
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    helpful

    thank you guys 

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