• sue57's Avatar

    sue57 posted an update

    Hi all,

    Exciting news- the CORMAC Delphi is now LIVE!

    This is a unique opportunity to ensure that patients views are represented in the future of anal cancer research.

    I’d be extremely grateful if you could circulate an e-mail to your members/contacts to help raise awareness of the study and promote completion of the questionnaire.

    I have attached a PDF flyer which you can use, as well a draft e-mail below (feel free to use of not use as you see best). The direct links are: https://ctrc.liv.ac.uk/DelphiManager/CORMAC/Delphi to go straight to the questionnaire, or https://cormacstudy.wordpress.com for further information.
    Many thanks for all your help so far, and don’t forget to complete the questionnaire yourselves!
    Kind regards, Rebecca


    HELP US TO IMPROVE ANAL CANCER RESEARCH

    CORMAC
    Core Outcome Research Measures in Anal Cancer

    We are working to improve anal cancer research.
    We need to hear from people who have had, or are having radiotherapy treatment for anal cancer.
    We would like to know what information you think should be gathered and reported in anal cancer research.
    This will help to ensure that anal cancer research better answers the questions that are important to patients
    Go to https://ctrc.liv.ac.uk/DelphiManager/CORMAC/Delphi to complete our questionnaire now, or https://cormacstudy.wordpress.com for further information.

  • sue57's Avatar

    sue57 posted an update

    Its been a while since i've posted. I celebrated 2 years NED in October of 2015! But the side effects from the treatment have continued. Bathroom trips are too frequent in the AM to leave the house. I started going to a Livestrong program at the Y and would recommend it to everyone! Fun, meeting new survivors and getting fit again..Love to all <3

    1 Comment
    • LuckyGirl's Avatar
      LuckyGirl

      Hi Sue! Congratulations on your 2 years NED!! That's a nice milestone! I have a 12-month PET scan coming up in early March... getting nervous already. Same problem with side effects here. Risky to leave the house before noon; really shortens the day, but what are you gonna do? At least I function pretty well in the afternoon and evening. Wonder how long the bathroom issues will last?

      over 3 years ago
  • sue57's Avatar

    sue57 posted an update

    March 21st is Anal Cancer Awareness Day!
    Wear purple and teal that day to show your support!

    Also, I have a lot of survivor bracelets to share...If anyone needs a bracelet or wants another one, please let me know! a c survivor at gmail dot com...skip the spaces and substitute the at symbol.

  • sue57's Avatar

    sue57 posted an update

    60 days of HBOT complete....no miracles....Surgeon visit next month.

  • sue57's Avatar

    sue57 posted an update

    AHCC - a shitake mushroom supplement...http://www.healthline.com/health-news/women-can-a-mushroom-extract-cure-hpv-032514 WIll this cure HPV? An interesting study and worth a shot! My tumor was identified as HPV 16....

  • sue57's Avatar

    sue57 posted an update

    It has been 8 months since my last treatment and the hair mostly fell out...I had asked a question before about when it would grow back as it was taking forever, and had some great help in the responses.It came back silver, black and curly! (I was blonde before!) I have had two hair cuts it is growing so fast! Loving it short and I am loving my curly hair!!! I guess could say it is a "good" side effect!

    2 Comments
    • MsVJP's Avatar
      MsVJP

      I was a dark blonde and mine is coming back almost black with LOTS of gray. But, still extremely straight. I just finished treatment 3-1/2 weeks ago and my hair is growing VERY slowly. I hope it picks up the pace a bit! :-)

      over 5 years ago
    • sue57's Avatar
      sue57

      It will ! It took mine a while and the curls get curliest every day! Best wishes!

      over 5 years ago
  • sue57's Avatar

    sue57 posted an update

    The Tumor "appears to be GONE!!" The best news I have had in months!

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Anytime you can say "tumor" and "gone" in the same sentence it's usually pretty good.

      over 5 years ago
  • sue57's Avatar

    sue57 posted an update

    4 months out of treatment and thank God the diarrhea is gone! But am having extremely painful bowel movements that make me want to scream! The pain lingers for sometimes hours. I am having an endoscopy and colonoscopy the end of the month so they can see what is going on in there. So far they haven't been able to do an anal exam because of the pain. Would love to hear from other survivors about what they experienced and is this the new normal for our anal cancer recovery? Have you found anything that helps ease the pain except walking around and distracting ones self? I am still not back to work because of this and hoping to hear from you..thanks!

    2 Comments
    • Cokuda's Avatar
      Cokuda

      I am four months out. I never had bad diarrhea but very painful bm that lasted hours until about month ago. Still painful but after pain is maybe 15 minutes now. I take miralax every day as if i get constipated it will tear on way out,. I dont take in too much fiber no nut no spicy food in case it will hurt on way out. The rectal doc told me my pain should mostly let up by 6 month out mark. My first 3 month check he put me under for it. The next will be a digital in his office. I still go frequently but thanks to miralx its fast and pain is tolerable but not pleasant by any means. Compared to early on i cried at every bathroom visit. I wonder if you have a fistula? Chronic diarreah can cause that. My only other issues now are my sphincter is still not real strong so if i have to go i have maybe 5 minutes to make it. Im doing strength exercise to tighten it. I hope they find out what is happening to you. I have been in a hurry to get things back to normal down there. Right now im doing that darn vaginal stretching thing and i hate it. It still hurts too. Hang in there.

      over 5 years ago
    • sue57's Avatar
      sue57

      HI Cokuda, Thanks! My treatments ended in October so it sounds like we went through this at the same time. Good to know I am not alone. I cry sometimes too! ou might be right about the fistula's but will know in a few weeks when they do the endoscopy under general anesthia. I haven't seen the GYN yet about the vaginal stretching, although the rad doc mentioned that I would need to see her at some point. I need to call her on Monday and am going to discuss as it is really too tight down there. Glad my doc has decided to do the endoscopy with general anesthesia as the rad doc had no luck and didn't even attempt after a little try. Can't wait to see what there is in there. Crossing my fingers that they can at least do something to relieve the pain even if it is just a little...some days I am so afraid of the bathroom!

      What frustrates me is that the docs seem to think this is abnormal, but I am thinking that it is not and just takes longer to recover from than what they are use to seeing with abdominal/pelvic radiation. After all we did get the max dose that is humanly possible they tell me! You should be lucky that you didn't go through the diarrhea. It was 30 days of the worst torture, every 20 minutes! and ended up in the hospital for 11 days due to dehydration, blood clots, DVT and a host of other issues. Nothing worked to correct that except getting the chemo drugs out of my system and a lot of protein. I still have bouts with this but usually only one time then things go back to normal. I agree the spicy food is off the list, as are nuts and spaghetti sauce. Some fruit, yogurt, veggies, lean meat seem to be the best choices. To be honest have not figured out what agrees with me yet. What works one week doesn't work the next, so am thinking it is all just a matter of time. I did find that ice cream made the pain subside for a bit! I think it is the cold on my tongue!! Right now am taking Citricel on the advice of the surgeon to bulk it up and reduce the number of times a day I need to go. Will see how that progresses, so far it has helped with the number but not with the pain. You hang in there too and stay in touch, as I said, it is good to know that I am not alone and someone else is experiencing the same pain. We will survive this and learn to laugh about it some day! :)

      over 5 years ago
  • sue57's Avatar

    sue57 posted an update

    Chemo and radiation over! I didn't make the last day of radiation due to my visit to the ER and subsequent 11 day stay in the hospital. Complications from the PICC line, the chemo and extreme diarrhea. Am home almost 2 weeks now and slow to loose all the fluid in my legs and arm that had the picc line. Lots of new medications. WBC back but other counts still off. Every day is getting a little better, but ever so so slowly. Major fatique. Sunburn healing.

  • sue57's Avatar

    sue57 posted an update

    Week 1 DONE!!! Not as bad as I thought it might be. PICC line didn't go very well, but the chemo was uneventful, but for the buddy to carry around and some chest pressure from the fiasco on Monday, no nausea - kept ahead of it with small snacks and so far the radiation is going well. PICC line out today! Yay! Will be sleeping better tonight! Wondering if I will like coffee again though...

    4 Comments
    • sue57's Avatar
      sue57

      Hi there! I am doing pretty good today, chest pressure gone after the pump and chemo drugs removed. Really noticed it gone Sunday. Sleeping well and had the first cup of good coffee after dinner tonight! Yay! Everything is right on schedule, mouth sores, mostly on my lips, but my gums no longer feel like they are peeling !! That was an odd thing! Have a lot of burping going on , but have had that from the beginning. An herbalist friend gave me a tincture of ginger and just two drops and an ice water chaser was marvelous at reducing the nausea. I hate pills so figured it was worth a try.before taking the zofran.. And it works! So how are you? Hope the exercising is helping with the fatigue? Take care...

      about 6 years ago
    • Roberson76's Avatar
      Roberson76

      Doing well. Been having a little bathroom pain that comes and goes so I'm going to ask my doc today or tomorrow. I think is radiation inflammation still but I haven felt that kind of discomfort in a while so hopefully it's just temp. Been trying to drink for water and maybe a stool softener to help. It's not unbearable like it was before but it's annoying. I have a check up next month

      about 6 years ago
    • sue57's Avatar
      sue57

      So glad to hear you are doing well, but sorry about the bathroom pain. Lots of fiber too, to keep things moving will help. My favorite is summer squash, the great yellow water healer! Hope that it is just temporary.
      My pain has started there, and I had a bout last night, blood everywhere...and from my skin too?? I knew to expect a sunburn to peak at week two, but have not had any sign of one there and then this? Did your skin ever do this? I am talking to my rad doc today. Kind of freaked me out! Just had my post chemo blood work done and was actually pretty good. WBC was still in the normal range although down some from the last but am still worried about an infection. It takes way longer now to heal a cut let alone this. How would I bandage it! LOL!
      Take care and have a good weekend!

      about 6 years ago
  • sue57's Avatar

    sue57 posted an update

    Had my PET/CT this week and am waiting for the results. All went smoothly except for the extreme itching in my butt I had that night. Enough to wake me up several times. I called the doctor the following day and he checked my surgical sites. Everything was fine. A dose of Benedryl solved the itching and today I haven't had any issues. The CT machine they used took 25 minutes. I just closed my eyes and counted down until the bed moved again. Seems it is in 5 minute intervals so that relaxed me enough so that by the time the last movement of the bed happened I was out!

    5 Comments
    • GregP_WN's Avatar
      GregP_WN

      I understand about the frustration in waiting. My last dx. for head and neck cancer, I had to wait 2 months to see the oncologist that I was referred to. I told the receptionist that I would probably be dead in two months, couldn't they find anything sooner, "NO" so I waited. Was the longest two months EVER.

      about 6 years ago
    • sue57's Avatar
      sue57

      Two months? So sorry to hear that, and hope to hear back today with a plan. My surgeon's office was so wonderful at getting me scheduled asap. I got voice mail twice with the med. oncologist's secretary before I had them track her down. She told me she was "working on it" and that the rad. onc. I wanted was booking way out. I asked her to look at someone else at the same cancer center. She offered me someone in a different office (personally not one I would visit in this part of Maine), and then to go to the cancer center for the treatment. The one answer she gave me was that they rotate rad. oncologists at that other office, and personally, if I can't have the same doctor to see me that just won't cut it. I don't feel comfortable seeing someone different every time I go. Leads to error and there is just no room for that right now. It is bad enough they missed this a year ago during my colonoscopy. Sorry to sound frustrated, but I am and don't know how you waited two months before finding someone else. Hope you are well on the road to recovery.

      about 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      What made this OK for me was that the doctor and facility I was referred to was where I wanted to go anyway. Couldn't be any better place. Vanderbilt Medical Center in Nashville. So I spoke with the surgeon that referred me and he agreed I probably couldn't get in any better or as good of a place any sooner. I even had a family member who is a lung specialist at the place that tried to get me in sooner, still didn't happen.

      Anyway, that was 4.5 years ago, and I did make it through and I couldn't be happier with them. I was there this past Monday getting posts implanted in my jaws to hold my dentures. It's a never ending journey for sure.

      about 6 years ago
  • sue57's Avatar

    sue57 posted an update

    Just ordered the Cancer Fighting Kitchen book by Rebecca Katz! Thank you to who ever suggested this and I apologize that I cannot remember who it was, but you will know and am thinking great thougthts. Once it arrives am going to cook like crazy and freeze anything I can that will help me on those days when things aren't good. :) :)

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      We have a couple girls on the site that are survivors who have a very successful book Kicking Cancer In The Kitchen. Look at our blog and you will see some articles they have written for us, and there is information there on how to get their book too. Glad you found some help here already. Let me know if you need anything. click here for our Blog www.whatnext.com/blog

      over 6 years ago
    • sue57's Avatar
      sue57

      Thanks Greg, I will look for those books too. Cooking always takes my mind off things.

      over 6 years ago