Stage 4 Anal Cancer?

Ms Elizabeth Bailey
Ms Elizabeth Bailey Member Posts: 5 Member
edited October 2020 in Anal Cancer #1

I'm curious how many of y'all are stage 4 Anal Cancer survivors- and how long since remission. I've been in remission since 2/14/19. The Radiation "fall out" isn't fun, but it sure is better than active cancer. It's hard for folks who haven't walked this path to understand. I've had late term radiation "fall out" and am still dealing with it. I go to a PT right now in hopes of getting some resolution of it all; however, I'm quite sure there are folks much worse off than me, so I thank God I have the great outcome I've had. What's a little pain, blood, urgency compared to the suffering so many folks who haven't had a remission go through. I'm blessed beyond measure! Besides, there are great jokes to be had when you're the butt of all the jokes! ;) 

Blessings and Joy in the Journey! 

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Comments

  • Ms Elizabeth Bailey
    Ms Elizabeth Bailey Member Posts: 5 Member
    edited October 2020 #2
     I'm looking forward to the

     I'm looking forward to the 2yr remissionverssary coming up in Feb! Smile

  • gododgers
    gododgers Member Posts: 1
    edited October 2020 #3
    stage 4

    I have stage 4, mets to the liver. I have been offered very little hope. I do chemo every 2 weeks and apparently will do so indefinitely. Sorry to be depressing, but sometimes I just feel so hopeless, especially when I'm in pain.

  • horsepad
    horsepad Member Posts: 146 Member
    edited December 2020 #4
    sorry for your diagnosis

    I am a stage 4 cancer survivor for 9 years.  I was diagnosed with mets to lympth nodes, liver.  The treatment was rough and the side effects improve over time.  I am doing great and feel blessed and grateful.  

  • caholz33
    caholz33 Member Posts: 45 Member
    edited December 2020 #5
    Happy that you are survivors - wish it were easier!

    I had stage 2 in 2013 - it was hard but not nearly as difficult as your stage 4 journeys.  I am praying for your continued survival, strength, and less hardship/pain.  

  • swood9008
    swood9008 Member Posts: 116 Member
    #6
    My mom is stage 4 for 18

    My mom is stage 4 for 18 months.Mets to vaginal wall. Stage 4 does not mean terminal, her dr states stable stage 4. My mom still works, watches the grandkids and lives a pretty normal life 

  • Tracyandjulia
    Tracyandjulia Member Posts: 5
    edited January 2021 #7
    My sister is stage 4. And her chemo carbo/taxol no change

    Hi.   My sister is 54 and was diagnosed with stage 4 anal cancer.    Unfortunately she has a biopsy that didn't go well and has a 16 cm wound surrounding her anus. So her disease is harder to treat as she can't sit, and has to lay on her sides.  I am her caretaker.   We live in Florida and go to Moffet.  Her cancer is extensive and in her pelvic lymph but no where else.    That said she just completed carbo/taxol and showed no change.  Nothing.    They did not go ahead with her December chemo and yesterday the doctors want to try immunotherapy.     I was devastated because I wanted her to switch to different chemo.  She isn't a candidate for radiation right now because of her open wound and the tumor size.   Anyone else have a similar story?    And any insight into immunotherapy.   I'm scared because I don't want it to spread.  She is " stable".   Her drug will be opdivo.     Thank you.    And I just want to add people don't like to discuss anal cancer.   I literally have to say "it's what Farrah Fawcett had". And then it rings a bell.    It's there.   And I wish there was no stigma with this cancer.   I tell everyone to get colonoscopy and check for any changes.   But boy do people just zip up when i say "anal cancer". Yes anal.   We all have one.    ?????. Tract

  • Tracyandjulia
    Tracyandjulia Member Posts: 5
    edited January 2021 #8
    horsepad said:

    sorry for your diagnosis

    I am a stage 4 cancer survivor for 9 years.  I was diagnosed with mets to lympth nodes, liver.  The treatment was rough and the side effects improve over time.  I am doing great and feel blessed and grateful.  

    im so happy to hear your

    im so happy to hear your story.  My sister is 54 and was diagnosed with stage 4 anal cancer.   May I ask what treatment you had?   She just did 3 months of carbo/taxol with no change.  i am thankful it didn't spread buy disappointed no improvement.    

  • Tracyandjulia
    Tracyandjulia Member Posts: 5
    edited January 2021 #9
    gododgers said:

    stage 4

    I have stage 4, mets to the liver. I have been offered very little hope. I do chemo every 2 weeks and apparently will do so indefinitely. Sorry to be depressing, but sometimes I just feel so hopeless, especially when I'm in pain.

    Always hope

    Hi.  I want to say that I completely understand how you feel.   I feel the same way and it's my sister who has stage 4 cancer.  I am learning that there are so many people with that stage who live many years.   my sister goes to Moffit In Florida and they always see patients who live with their disease.    i am hoping my sister will. Be one of those.    please know that you are not alone.     I want so much for my sister to get a good response so I completely understand your feelings.   Share.  And know you are not alone here

  • KFWinDFW
    KFWinDFW Member Posts: 3
    edited January 2021 #10
    gododgers said:

    stage 4

    I have stage 4, mets to the liver. I have been offered very little hope. I do chemo every 2 weeks and apparently will do so indefinitely. Sorry to be depressing, but sometimes I just feel so hopeless, especially when I'm in pain.

    My father is in a similar

    My father is in a similar boat, he has stage 4 with mets to the lungs. When diagnosed in August he was given 3-6months to live, with treatment 3-5yrs. He is also doing chemo treatments every two weeks, with only 4 treatments down he is trying to gauge whether or not indefinite treatment is worth it.  

  • KFWinDFW
    KFWinDFW Member Posts: 3
    edited January 2021 #11
    horsepad said:

    sorry for your diagnosis

    I am a stage 4 cancer survivor for 9 years.  I was diagnosed with mets to lympth nodes, liver.  The treatment was rough and the side effects improve over time.  I am doing great and feel blessed and grateful.  

    it is really great to hear

    it is really great to hear that you are doing well, definitely provided me with hope.

  • winnie25
    winnie25 Member Posts: 3 Member
    edited January 2021 #12
    anal cancer

    Hi hon. I had stage 3/4, 4/29/19   I wonder if you also have constant diariha. im sorry can't spell it' and off and on bleeding 24-7? Do any of you also still have this a year after treatments?

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    #13
    Tracyandjulia said:

    My sister is stage 4. And her chemo carbo/taxol no change

    Hi.   My sister is 54 and was diagnosed with stage 4 anal cancer.    Unfortunately she has a biopsy that didn't go well and has a 16 cm wound surrounding her anus. So her disease is harder to treat as she can't sit, and has to lay on her sides.  I am her caretaker.   We live in Florida and go to Moffet.  Her cancer is extensive and in her pelvic lymph but no where else.    That said she just completed carbo/taxol and showed no change.  Nothing.    They did not go ahead with her December chemo and yesterday the doctors want to try immunotherapy.     I was devastated because I wanted her to switch to different chemo.  She isn't a candidate for radiation right now because of her open wound and the tumor size.   Anyone else have a similar story?    And any insight into immunotherapy.   I'm scared because I don't want it to spread.  She is " stable".   Her drug will be opdivo.     Thank you.    And I just want to add people don't like to discuss anal cancer.   I literally have to say "it's what Farrah Fawcett had". And then it rings a bell.    It's there.   And I wish there was no stigma with this cancer.   I tell everyone to get colonoscopy and check for any changes.   But boy do people just zip up when i say "anal cancer". Yes anal.   We all have one.    ?????. Tract

    Tracyandjulia...

    Hi,

    I'm wondering how your sister is doing? I was dx with stage 3b anal cancer 10 years ago and my chemo at the time was cisplatin and 5FU, after a recurrance so (mets) in my lung that required surgery and later radiation, my doctor who I highly respect said that opdivo is a good option if needed in the future. 

    With my initial tumor in the anus, I did have surgery prior to the radiation treatments to place an ostomy. It was hopeful to be temporary but because of healing and radiation scarring it became permanent. It took some adjustment but now years later seems so normal to me. Im not sure if this is an option for your sister but it sure relieved pain at the time!!

    I agree on the reaction people often give when they here the dreaded word "anal"...at first it bothered me and I'd sometimes say lower colon, but then became more like "no, its anal cancer" and we all have one, maybe its good to scare people a little and also to raise awareness.

    Your sister is lucky to have you for support, kuddos to you!

    I will keep you both in my thoughts and prayers for healing and wellness.

    katheryn

  • annie4145
    annie4145 Member Posts: 218 Member
    edited January 2021 #14
    gododgers said:

    stage 4

    I have stage 4, mets to the liver. I have been offered very little hope. I do chemo every 2 weeks and apparently will do so indefinitely. Sorry to be depressing, but sometimes I just feel so hopeless, especially when I'm in pain.

    Hi, I just wanted to say hi. 

    Hi, I just wanted to say hi.  I didn't have stage 4.. My stage 3a.  But I wanted to say hang in there.  My aunt had stage 4 ovarian cancer about 25 years ago. She wasn't supposed survive the summer back then, but she fought it off, and went into remission a total of 3 times, before having to live with it as a chronic condition.   She survived about 20 years after her initial diagnosis.  AND now the treatments keep evolving.  Where are you treating?  Is it at a really good hospital?   I am wishing you the best.  I also did have a psychiatrist help me with medicine after diagnosis (anxiety and depression medicine).  I know that I was only stage 3, but I was super scared as I had a 10 year old at the time.   The person really helped me sort through everything and the medicine helped me as well, including to sleep at night.  I am wishing you the best,

  • Fengshoe
    Fengshoe Member Posts: 23 Member
    #15
    winnie25 said:

    anal cancer

    Hi hon. I had stage 3/4, 4/29/19   I wonder if you also have constant diariha. im sorry can't spell it' and off and on bleeding 24-7? Do any of you also still have this a year after treatments?

     

    anal cancer

    Winnie,

    I’m a stage 3b anal cancer survivor of 4 years. Doc told me it would take a year to get to “normal” diet, bowel movements and be healed. It took more like 2 plus years. Now, I’m pretty regular and can eat most foods except greasy foods, too much sugar and prepackaged foods. Best to stick with cooking organic veggies, lean meats and eat fresh fruits at least with my experience. You still might have episodes on occasion, but things definitely get better with time. Bleeding episodes are rare. Diarrhea only happens once in a while but an Imodium tablet brings things back to normal. Have faith. Time will make things better. Wishing you a healthier, happy 2021.

  • Tracyandjulia
    Tracyandjulia Member Posts: 5
    edited February 2021 #16
    Update on Julia

    My sister Julia had her first infusion of opdivo.   She is stage 4 and had no change after carbo/taxol x 3 months.  My question is , has anyone done immunotherapy and had success?   Her doctor has said it has a 25 % chance of working.   And you only get this treatment in the USA if you have failed standard treatment.   I wish they had just tried a different chemo but this was chosen instead.    She will get this every 2 weeks and re scan at 3 months.   She is also on antibiotics because she is battling infection.   She won't do a colostomy.  And to be honest the dr dont bring it up anymore.  That scares me.   she has an 16 cm open wound.  I sometimes think the treatment Is fighting her infections and not her tumor.    She has extensive involvement in her peri-anal and perineum.    Her PET SUV uptake was 42.  I have never even been able to read of another SUV that high.    So any feedback on immunotherapy would be welcome.    

    trying to be optimistic.      I always tell my sister we live in the moment.     We can't always look to far ahead.   And that goes for everyone, even people without cancer 

  • winnie25
    winnie25 Member Posts: 3 Member
    edited February 2021 #17
    Fengshoe said:

    anal cancer

    Winnie,

    I’m a stage 3b anal cancer survivor of 4 years. Doc told me it would take a year to get to “normal” diet, bowel movements and be healed. It took more like 2 plus years. Now, I’m pretty regular and can eat most foods except greasy foods, too much sugar and prepackaged foods. Best to stick with cooking organic veggies, lean meats and eat fresh fruits at least with my experience. You still might have episodes on occasion, but things definitely get better with time. Bleeding episodes are rare. Diarrhea only happens once in a while but an Imodium tablet brings things back to normal. Have faith. Time will make things better. Wishing you a healthier, happy 2021.

    anal cancer

    Thank you Fengshoe. Means alot you responded

  • KyTrucker1961
    KyTrucker1961 Member Posts: 1 Member
    edited February 2021 #18
    I was told in Sept 2020 that

    I was told in Sept 2020 that my anal cancer was in remission. That was after two surgeries and radiation/chemo treatments. I was informed 2 weeks ago that it had spread to my lungs. That it was stage 4 and not curable. Really scared here. I have family and friends but no one understands. All i hear is i am praying for you or you do what needs to be done. No one seems to understand the fear i am experiencing.

  • eihtak
    eihtak Member Posts: 1,473 Member
    #19
    KyTrucker1961...

    Hi,

    Fear is nasty devilish work and if only we could flip a switch and turn it off but it doesn't seem to work that way does it?

    I have been in your spot...In my case it was 4 years after initial treatment of surgery/chemo/radiation. I was feeling fine other than a dry cough which I related to cold winter air and heat turned up in the house. I had a scheduled follow-up appointment which included a scan because I was also treated for breast cancer right after the initial anal cancer. The scan showed a large tumor on my lung which proved to be an anal cancer metastasis that had spread which is then labled as stage 4. It is so scary to hear that, I know.

    Mine was large but contained in the left lower lobe and was treated by doing a lobectomy (surgery to remove the entire left lower lobe) followed by chemo once again. This news had me more fearful than I can put into words and no one in my circle (and I have a really great circle of family and friends) anyhow, no one quite got where I was at. In hindsight, I guess thats good because the only way to get it is to have been there and I wouldn't want that for any of them.

    The surgery went well and I was only in the hospital a couple days then just a few weeks later began the chemo. It was tough again, but somehow slightly easier than the first time maybe because I wasn't also dealing with radiation issues this time.

    My initial anal cancer dx was in 2011 and this was in 2015...take a deeeeeep breath and consider whatever options your doctors are giving you, then make a decision and don't look back except to pat yourself on the back for getting through this...and you WILL!!

    Everyone is different and we all find ways to cope, for me, a few extra moments of candid conversation with God sends that devil driving fear for a run in the opposite direction.

    Please stay in touch and keep us posted as to how you're doing and know that you'll be in my thoughts for that sense of peace and wellness as you move ahead.

    katheryn

  • jameserickson
    jameserickson Member Posts: 1
    edited March 2021 #20
    RSO HELP ME OUT

    Have you tried RSO?

  • Smiles60
    Smiles60 Member Posts: 7 Member
    #21
    Stage 4 Anal Cancer

    For those of with Stage 4, are you on a chemo regiment for life?

    I did chemo and radiation when I was first diagnose. During my 6 month scan they found a spot on my liver. I had a liver resection. 

    For good measure, they had me complete 4 chemo treatments every 21 days.

    i have been given the option to continue with the chemo indefinitely or stop chemo and have scans done every 3 months.

    if the cancer comes back, then I would go back on chemo treatments.

    Looking here to find out what others have decided when given this choice.

    Thanks for your input.

     

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