A Place For Us

JDuke
JDuke Member Posts: 438
edited March 2014 in Anal Cancer #1
Hello everyone,

I would like to take this opportunity to be the first to post on the new Anal Cancer Discussion Board. I have been posting on the colo-rectal board for a couple of months now and find that they are an awesome group of people to be connected with. While there are similarities for all of us fighting or caring for someone fighting any cancer, the specifics of treatment, side effects, testing, etc., do differ from one type to another. This results in different concerns, questions, and dialogue. I contacted Greta here at CSN and she agreed to open a discussion board for us, it will be a on a trial basis to see if participation warrants its continuation. It is my sincere hope that it will and that we will all benefit from connecting and sharing.

Blessings to all,
Joanne
«1

Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #2
    Joanne,
    I have several
    Joanne,
    I have several friends on another forum that have anal cancer and feel they have no place to discuss their concerns. I'm going to head over there right now and invite them to join you.

    Thanks for thinking of others!
    Diane
  • geotina
    geotina Member Posts: 2,111 Member
    #3
    Joanne
    I'm so happy you had them create a board for anal cancer but don't forget to come and visit your old friends on the colon board - good job getting this done. Tina
  • lizdeli
    lizdeli Member Posts: 569 Member
    #4
    Great!
    Joanne,
    Thanks for doing this! I think it is wonderful that you were able to get us a board. One of the reasons I searched elsewhere was because it was so hard to find others with the same type of cancer.

    I will be here to help support the discussion board. Thank you! You don't give up and that's what I like about you. It's that same preserverance that will get you through ridding your liver of that one tiny spot!!!

    God bless,
    Liz
  • Kathy09
    Kathy09 Member Posts: 99
    #5
    Good Luck
    Im sure people will join you. I have bc but noticed this new cancer topic on the board. Best to you.
  • clrrnbsn
    clrrnbsn Member Posts: 1
    #6
    Kathy09 said:

    Good Luck
    Im sure people will join you. I have bc but noticed this new cancer topic on the board. Best to you.

    Thank you for getting this
    Thank you for getting this network together for support for us anal cancer people...
    When I was diagnosed in 2002, I could not find a support group just for anal caner and I am so happy to see many sites opening up. We all need to know someone understands us.
  • HollyID
    HollyID Member Posts: 946 Member
    #7
    So here you are -- don't
    So here you are -- don't forget us though!! I'd miss your gorgeous smile and your wise words!
  • pjjenkins
    pjjenkins Member Posts: 173
    #8
    Anal cancer
    Wow, I like this- same diagnosis and, in at least Joanne's case, basically the same treatment. Will be back to "discuss" stuff tomorrow!
    Thank you, Joanne!
  • phillyAC
    phillyAC Member Posts: 6
    #9
    anal canceer
    WOW - this is fantastic! This is exactly what I've been looking for since 1992 when I was diagnoised with anal cancer. When I was going through my treatments of chemo and radiation, I sat with the breast cancer ladies, but I felt out of place. I ended up with the men who were going through prostate cancer. Our radiation treatments and the unfortunate problems from radiation were more similar.

    You have opened a very important link for me and I'm sure there will be many folks that will follow.

    Off I go to work, but I'll check in more frequently and be an avid supporter.
    Blessings to you and all that are on the CSN connection.
  • mp327
    mp327 Member Posts: 4,440 Member
    #10
    Thank You!
    Joanne--

    As an anal cancer survivor, I want to thank you for your successful efforts in establishing this forum. There are few places such as this for those with this cancer to connect with others going through the same experience. Anal cancer continues on the rise, so I hope there will be good participation, allowing this board to remain. I look forward to participating on this forum and sharing my experience to help others.

    mp327
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • JDuke
    JDuke Member Posts: 438
    #12
    unknown said:

    This comment has been removed by the Moderator

    Marcia
    Glad you found us! My initial treatment was in 2008 and thank goodness the radiation was successful in treating the mass. However, that was not without awful side effects on all things pelvic! My bowel issues were lingering but not constant. The effects of the radiation can take a long to time run their course. If I recall correctly, it is still "working" for a year after the treatment ends. Mine was worse as I introduced spicy and rich foods back to my diet. I still have episodes from time to time. Do you find that yours is constant or random? Is it improving or remaining pretty much the same? I am sure that others will be on shortly to add their opinions and expertise in this area.
    Blessings,
    Joanne
  • KathiM
    KathiM Member Posts: 8,028 Member
    #13
    GREAT idea!!!!
    Good job!!!!

    Don't forget to keep us posted on the colorectal board, also!

    Anal cancer is so different, you are correct! I had a mix....squamous cell carcinoma (anal usually) in the first rectal fold (rectal...lol). Then, I also was 'lucky' enough to find stage II breast cancer (unrelated...adenocarcinoma) 6 months after my first dx...So I guess I will add this board to my favorites, as well...

    Hugs, Kathi
  • z
    z Member Posts: 1,414 Member
    #14
    unknown said:

    This comment has been removed by the Moderator

    Stomach Problems
    Marcia,

    I completed treatment 6-30-09. I had urgency and several bathroom visits a day. Evenutally the urgency and frequancy lessoned and I'm basically back to normal. Maybe 2 bathroom visits a day, as compared to 1 pre treatment. It will get better, as the radiation, I've been told continues to work for up to 6 months after treatment is completed, therfore your colon and anal canal are recuperating. I did have an infection in my colon after treatment, which I was told is common after radiation. I was given antibiotics to solve that problem, in which the antibiotics worked. I hope your doctor can help you with your colon. I wish you well. Lori
  • phillyAC
    phillyAC Member Posts: 6
    #15
    unknown said:

    This comment has been removed by the Moderator

    stomach problems
    Here's what worked for me after some recent surgery that took 3months to get me back out the door with reasonable confidence. The BRAT diet - banana, rice, applesauce and toast. See a Nutritionist or Dietician that can guide you slowly into a normal diet and confidence that the bathroom is suppose to be an occasional place you go - not live there. It took a couple of weeks and some big changes, but my colon healed and it is my life again with some foods that I've learned to just eliminate from my diet.

    Once your nutritionist gets your tummy on track, then you see how quick the rest falls into place. I also see a Gastroentologist (spelling may be wrong) - they can help with the meds your on and help to manage better the meds that can aid in stopping loose uncontrollable bowel movements.

    I'm going to be here so let me know how you make out!

    Blessings to you!!
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #16
    KathiM said:

    GREAT idea!!!!
    Good job!!!!

    Don't forget to keep us posted on the colorectal board, also!

    Anal cancer is so different, you are correct! I had a mix....squamous cell carcinoma (anal usually) in the first rectal fold (rectal...lol). Then, I also was 'lucky' enough to find stage II breast cancer (unrelated...adenocarcinoma) 6 months after my first dx...So I guess I will add this board to my favorites, as well...

    Hugs, Kathi

    Howdy all..................
    CRC or anal cancer are all mostly pain in the butts anyway ya slice it...Is it ok if we CRC people refer to ya'll as "cousins or cuzs" cause we are all pretty close in dx and in spirits also......Yeah, I just had to peek in here.....Love and Hope to us all, Buzz
  • mp327
    mp327 Member Posts: 4,440 Member
    #17
    unknown said:

    This comment has been removed by the Moderator

    Be Patient!
    I can certainly relate to your ongoing bowel and intestinal issues. I had treatment back in July - September 2008 and still have urgency and frequency at times. Mine is mostly diet related and happens when I get off course and eat something I shouldn't. Overall, though, I am much improved and these issues no longer keep me homebound like in the beginning. You are not that far out from treatment, so the best advice I could give is to keep working on tweaking your diet (with the help of a dietician or nutritionist, if necessary) and be patient. My rad onc also told me it would be fine to take an Imodium AD routinely once a day--you might try this. My best wishes to you--I hope you see improvement very soon.
  • z810840b
    z810840b Member Posts: 207 Member
    #18
    unknown said:

    This comment has been removed by the Moderator

    mthomas and stomach problems
    I was diagnosed with anal cancer 5/08. Like you,I also had 31 rounds of radiation and 2 courses of chemo.I am now 17 months out from last treatment and feeling pretty good.I just had a scope today and am clean...Thank god. The bathroom problem will get better. You also have to learn which foods trigger the bathroom dash.
  • Beekay1280
    Beekay1280 Member Posts: 10
    #19
    unknown said:

    This comment has been removed by the Moderator

    Stomach Problems
    Congrat's on being ned and welcome to this board. I am so glad that CSN opened up this board to anal cancer.
    I too had 5 weeks of rad and two tx of chemo, My last rad was end of June 09, I am still having some problems with stomach, bowel and urine problems. Just had surgery to open up the vagina. I highly recommend that you start using dilators know that you are just a few months out of radation. I wish my radation doctor or oncologist would of ordered them right off the bat. I ended up going to a gyno to help me with my vigina problem. Also reference the inflammation to colon will settle down.

    Brenda
  • msannstar
    msannstar Member Posts: 7
    #20
    JDuke said:

    Marcia
    Glad you found us! My initial treatment was in 2008 and thank goodness the radiation was successful in treating the mass. However, that was not without awful side effects on all things pelvic! My bowel issues were lingering but not constant. The effects of the radiation can take a long to time run their course. If I recall correctly, it is still "working" for a year after the treatment ends. Mine was worse as I introduced spicy and rich foods back to my diet. I still have episodes from time to time. Do you find that yours is constant or random? Is it improving or remaining pretty much the same? I am sure that others will be on shortly to add their opinions and expertise in this area.
    Blessings,
    Joanne

    Joanne
    Yes I believe its
    Joanne

    Yes I believe its much better then before because I had no control over it and the stomach pain isn't as bad as last month. When I eat food it's constant bowel movements.

    My doctor gave to lotomil pills to slow the loose bowel down and hyoscyamine pills to help with the stomach pain. But taking the lotomil can made me not have a bowelment for 3-5 days

    Last week my GI doctor did a upper GI my test results showed I have a hiatal hernia and also a lower GI that test results showed colonic mucosa with mild hyperplastic on the sigmoid

    Marcia
  • msannstar
    msannstar Member Posts: 7
    #21
    phillyAC said:

    stomach problems
    Here's what worked for me after some recent surgery that took 3months to get me back out the door with reasonable confidence. The BRAT diet - banana, rice, applesauce and toast. See a Nutritionist or Dietician that can guide you slowly into a normal diet and confidence that the bathroom is suppose to be an occasional place you go - not live there. It took a couple of weeks and some big changes, but my colon healed and it is my life again with some foods that I've learned to just eliminate from my diet.

    Once your nutritionist gets your tummy on track, then you see how quick the rest falls into place. I also see a Gastroentologist (spelling may be wrong) - they can help with the meds your on and help to manage better the meds that can aid in stopping loose uncontrollable bowel movements.

    I'm going to be here so let me know how you make out!

    Blessings to you!!

    stomach problems and loose bowels
    PhillyAC

    This make my fourth month on the Brat diet and on TPN I been seeing a nutritionist also that long.
    Thank u for sharing I really need all this help from others.

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