zetapup checking in for the first time

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  • Dodiefae
    Dodiefae Member Posts: 41 Member
    #22

    Holycow57-

    Also you will likely be taking both Immodium and prescription anti diarrheal meds at that point. So you will be able to control it when needed.

  • Mharrington
    Mharrington Member Posts: 23 Member
    #23
    https://csn.cancer.org/discussion/comment/1703172#Comment_1703172

    I too was about an hour and 15 from where I received treatment. The University Hospital I was being treated at offered apartments at a discounted rate for persons not living close by. We rented one for the first 2 weeks of treatment but I did not feel comfortable there and decided to just go back and forth from home. It was certainly inconvenient to travel that distance every day , especially since radiation was less that a half hour. But, I never had a bathroom problem during this time. It seems the urgency to go came on after treatment and still persists (year later). I have to be somewhere near a bathroom until at least 10 a.m. But, I'm grateful to be here!

  • drpearl
    drpearl Member Posts: 28 Member
    #24

    I was about 30 minutes from hospital. The first 3 weeks no penniless, I drove myself most days after day one. Then last 3 weeks got more difficult, needing a full bladder at each treatment made it very difficult towards the end to hold things. I had several close calls after treatment but luckily they had a bathroom right next to treatment room. I always wore a huge pad in my boxer shorts incase. I only had one actual issue the final week of treatment when I stood up getting off of the table, I peed but couldn't feel it a at all. That back up outfit came in handy.

    There were a few accidents at home in the first few post treatment weeks, but I've learned what my body needs and timing is everything!!! I eat certain foods at certain times, I take my fiber supplement before dinner daily and it makes a huge difference in how much time I spend in the bathroom and how urgent it is to get there on time!

    You may need pain pills, so also take a stool softener, but may also have diarrhea so will need immodium. Your body will go back and forth with little consistency. It depends on what foods you can actually tolerate eating also.

    Be prepared for everything and hope for nothing.

  • Lynejo
    Lynejo Member Posts: 21 Member
    #25
    https://csn.cancer.org/discussion/comment/1700873#Comment_1700873

    Tracy I’m wondering how you are now? And how your treatment was

    im newly diagnosed 70 (F) and this has comes as a complete surprise. My biggest concern is recovery and side effects from the Radiation

    I stage 1-2A because had my tumor removed but tentacles were left I’m my sphincter.

    so full NIGRO protocol is recommended

    The excision healed slowly—heck even my dogs nail scratches bleed and heal s l o w l y so besides being generally freaked out about treatment in general I’m concerned my age will really impair and prolong a very arduous healiNg and wonder if it’s worth it at this stage of my life

    thanks and I do hope you are well and thriving

  • drpearl
    drpearl Member Posts: 28 Member
    #26
    https://csn.cancer.org/discussion/comment/1706203#Comment_1706203

    I was 2A, had the 28 days of radiation treatments with the day one mytomyacin then chemo pills/ capecetibine. No port.

    Recovery wasn't easy, but I'm 9 months post treatment now. No cancer detected at scan in Dec. Slight issues with bathroom urgency, but no pain.

    Start focusing on improving your nutrition intake and add as much strength building activity as your body will allow before treatments begin, but try not to delay treatments as this type of cancer is aggressive and the Nigro has a very good response rate. The alternative is to let that cancer grow, then have surgery to remove EVERYTHING, and have a bag for the rest of your days.

    Best of luck with treatments and recovery. Reach out for help, there are many ways to get help.

  • Lynejo
    Lynejo Member Posts: 21 Member
    #27

    Thanks for your response

    im learning to navigate this discussion board.

    Im hoping since I caught this early that I can receive a lower dose radiation..I think that is what most of the difficult recovery is from?

  • Lynejo
    Lynejo Member Posts: 21 Member
    #28

    Hi All. Well i finished my 4th day of Nigro protocol today. Symptoms are very mild, but curious did ya all get constipated right away? And did you feel the heat in your privates right away too?

    Its very odd but not painful sensation..though i didnt expext to feel anything until the 2nd week

  • katfar57
    katfar57 Member Posts: 2 Member
    #29

    I am so glad to find this board. I am just getting started and my radiation oncologist emphasized the pain will have. I also have a vulvar cancer. Not mets but the radiation field will be larger. More skin etc to fry. I assume that I will get my port this week. Not being able to work has thrown me for a loop. I worked with a lady who had to have her rectal tumor shrunk before surgery and more radiation after. She never missed work so I thought that would be how it would go for me. I am 66 so I could retire but my employer is picking up all copays/coinsurance this year. I have plenty of time to take but I really like to work.

    I dread the pain and the bowel issues but I know that I won't know how it's going to be for me until it starts. My oncologist said the pain wouldn't start until after the 2nd week. I know this too shall pass. Just a bump in the road right?

  • Dodiefae
    Dodiefae Member Posts: 41 Member
    #30

    Yes, finding this board was such a relief for me! I had had breast cancer 11 years prior and there’s so much info out there for that cancer. I seriously don’t recall pain from the radiation. At one point, I had some serious itching primarily at nighttime in the vulva area. Five years later, I don’t need to do any shaving before putting on a bathing suit- one unanticipated benefit, I suppose.

    i did some work from home during treatment when I had the energy and interest.

    We’re all different. It’s just such a relief when you finally start the treatment and know you’re doing something to help things . It’s a big bump in the road, but there’s an end to the road.

    Hang in there!

  • drpearl
    drpearl Member Posts: 28 Member
    #31
    https://csn.cancer.org/discussion/comment/1706774#Comment_1706774

    You're just getting started my friend. It is different for each of us. For me week one was awful from the chemo dose on day one with the steroids. And I had to have a root canal and crown that first week also!

    The Radiation was really tough for me. I was on lots of pain meds, then stool softeners and very limited diet. I was very weak by day 28, but I made it though somehow. Now I am training to do the Chicago Marathon in October.

    There may be some awful days and some days that fell pretty good, just keep getting thru each moment as they come.

    Allow all of those feelings to come so you can deal with them and move past them.

    I needed physical therapy for my hips and now I'm doing pelvic floor therapy for urgency. I make it to the bathroom more easily now. Less anxiety over if I can get there on time. Give yourself a full year to really imagine feeling like you again. While this changes us forever, it doesn't need to keep us from living!!

    Good luck with the rest of those treatments

  • drpearl
    drpearl Member Posts: 28 Member
    #32
    https://csn.cancer.org/discussion/comment/1706830#Comment_1706830

    I had extreme pain and bowel issues for quite a while, but I have fought my way back to a good quality of life through nutrition, physical and pelvic floor therapy. Ask about a protective vaginal cylinder during treatments to prevent vaginal stenosis.

    Good luck with everything, there are some rough times for sure, but you will make it through!!

  • katfar57
    katfar57 Member Posts: 2 Member
    #33

    Thanks so much y'all! I will write down about the vaginal cylinder. I feel so blessed to have found this board so easily. I read something about taking dexamethasone during chemo. Did you do that?

  • drpearl
    drpearl Member Posts: 28 Member
    #34
    https://csn.cancer.org/discussion/comment/1706844#Comment_1706844

    I don't recall if that was the name of it. I had only one iv chemo of mytomyacin on day one then 6 xeloda pills each day that I had a radiation treatment. I didn't ever have a port.

    I know there has been a shortage of chemo drugs, so not sure how that affects which treatments are being done now.

  • Lynejo
    Lynejo Member Posts: 21 Member
    #35

    I think it’s just called a dialator they come in different sizes and you might be offered a choice

  • Lynejo
    Lynejo Member Posts: 21 Member
    #36
    https://csn.cancer.org/discussion/comment/1706206#Comment_1706206

    drpearl. Im 1/2 way through my treatments, true about bowel issues, fluctuates —unpredictable though I’m doing fine

    just concerned by rough recovery…I have a redundant Colon and wonder if that is the culprit for me,

    and wondering about pain worsening with this soars of kinky sunburn that’s starting.

    im on lowest dose of radiation, I had just remnants of tumor that had been excised before getting bioposy we are hitting my lymph nodes and tumor site daily with 36 Gy not the usual 50.4 Gy,we hope it’s enough to work. I found clinical trials …but they have such limited participants due to this being rare cancer.

    ANYWAY any other details are helpful to me

    best , Leya

  • Lynejo
    Lynejo Member Posts: 21 Member
    #37

    im more literate than my keyboarding would leave you all to believe

    my hand gets numb a I’m on phone or tablet not sitting at my computer

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