Stage 4 - Doctors statments... etc

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Gabbygirl
Gabbygirl Member Posts: 2
edited March 2014 in Anal Cancer #1
So, my mother was dianosed with Anal Cancer. I am only assuming it is stage 4 (they have not actually said what stage it is). I have taken her to all of her appointments. The Dr's have basically said that she is terminal, and that they are only doing treatment to sustain life as long as the treatment is slowing down the cancer groth. They did 11 treatments of radiation on a couple masses in her spin. They are now doing Chemo (cicplatin and 5fu). Each round is 5 days long, and she is having it done every 3rd week. We were in the ER because the Dr was out one day so the nurse sent us to the ER fearing that she needed a transfusion. When we explained to him that her Dr was planning to do a CAT scan after her second round of Chemo, he said it was a wast of money.

Does anyone have any experiance with Anal cancer this advanced? She has it in her anis, bowl, spine, liver and lungs. Not good I know. But we have her radiation oncologist saying that they have had good results with chemo on this type of cancer, however there is no cure once it spreads. And her Chemo oncologist is very pesimistic.

I really appreaciate all of the info I have found here. I just don't seem to be finding anyone who has cancer as advanced as hers is.

Thanks!!

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  • z
    z Member Posts: 1,414 Member
    #2
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    gabbygirl
    Hi Gabbygirl,

    I'm so sorry that your mom has cancer. There are a couple of anal cancer survivors on this site that were diagnosed as stage IV, and I hope they will chime in. One that I know of is now NED 2 plus years out. I was stage II, so I am of no help really, because I just had the standard chemoradiotherapy. There are probably different chemo cocktails that they could use to treat your mom. You should get a second opinon. My prayers are with you and your mom.
    Lori
  • SueRelays
    SueRelays Member Posts: 485
    #3
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    So sorry to hear this. I am
    So sorry to hear this. I am stage IV but that was after supposedly being "cured" from anal cancer 2 years ago. Since then I have had a 1/5 of my lung removed, and most recently ( in Feb) found out the anal cancer had spread to my liver, so I had 1/2 my liver removed. During surgery, they also found the little beast in my abdominal lining.
    THis happened over the course of time however. But what I know from being on these boards, is there is ALWAYS a miracle, and there is ALWAYS hope. If your oncologist is pessimistic, find another. You want someone who as least believes he/she can help. It is amazing what they can do for us know. I am 51 years old, and actually still feel 10 years younger after all this. I'm sure you will get some excellent advice here, as there are many soldiers!!!
    Will keep you all in my prayers!!!
  • lemonade
    lemonade Member Posts: 63
    #4
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    The only thing that I can
    The only thing that I can suggest is to go to M.D. Anderson in Houston, if at all possible. I am sorry and I know this is very overwhelming.

    Barbara
  • Gabbygirl
    Gabbygirl Member Posts: 2
    #5
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    lemonade said:

    The only thing that I can
    The only thing that I can suggest is to go to M.D. Anderson in Houston, if at all possible. I am sorry and I know this is very overwhelming.

    Barbara

    Thank you all for your
    Thank you all for your replies. I am talking to her about checking into other doctors. We are in Washington State, so if anyone has a Dr they would recomend that would be great!!

    Thanks Again!
  • pjjenkins
    pjjenkins Member Posts: 173
    #6
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    HI, Gabbygirl
    So sorry to hear that your mom is going through all this. I was diagnosed at an earlier stage so cannot share on the Stage IV experience. I am glad you are supporting your mom on her journey - my daughters' support was a critical part of my journey, too.

    A second opinion, fresher look, has always been helpful to me. Be sure to look up the closest major cancer center to you. There may well be a doctor working treatment trials who can help your mother.

    Also noticed "NED" in one of the posts and it confused me when I first started so just in case- NED = No Evidence of Disease.....

    Prayers and positive spirits winging your way - and make Mother's Day special!

    Priscilla
  • lizdeli
    lizdeli Member Posts: 569 Member
    #7
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    Gabbygirl said:

    Thank you all for your
    Thank you all for your replies. I am talking to her about checking into other doctors. We are in Washington State, so if anyone has a Dr they would recomend that would be great!!

    Thanks Again!

    Washington State
    Gabby
    I also recommend MD Anderson in Houston, but realize that may be difficult. I recommend Fred Hutchinson Cancer Center in Seattle, WA. as well. Anal cancer is rare and having it spread is rare. Please ask the doctors how many cases of anal cancer they have treated before. If it's not a major center the chances are that they haven't treated that many since there are only 4,000 or so cases per year. Also, sometimes anal and rectal cancers are confused, so it's important to clarify with them why they think it's one or the other.

    Liz
  • winnipeg
    winnipeg Member Posts: 23
    #8
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    pjjenkins said:

    HI, Gabbygirl
    So sorry to hear that your mom is going through all this. I was diagnosed at an earlier stage so cannot share on the Stage IV experience. I am glad you are supporting your mom on her journey - my daughters' support was a critical part of my journey, too.

    A second opinion, fresher look, has always been helpful to me. Be sure to look up the closest major cancer center to you. There may well be a doctor working treatment trials who can help your mother.

    Also noticed "NED" in one of the posts and it confused me when I first started so just in case- NED = No Evidence of Disease.....

    Prayers and positive spirits winging your way - and make Mother's Day special!

    Priscilla

    Always another option
    Hi there, thanks for joining here. I was Stage 4 with liver mets only, and responded well to carboplatin, taxol, and Xeloda.

    I too recommend you consider care elsewhere if your doctors there are not aware of how well some Stage 4 patients are doing these days.

    You may wish to contact a Dr. B Cummings at Canada's Toronto University. He told me by email that like me, others had written to him having had very good results with the three drugs I got.

    Also please require your doctors to find, on their own, the research of JD Hainsworth in Tennessee on Stage 4 squamous cell cancer patients (ours is a squamous cell cancer) using the same drugs I got. He got rid of a lot of metastatic lesnions in people using 4 administrations of the chemo. I got 7 or 8.

    Yes, you must make these arcane bits of info into your life's work.

    I second the MDA recommendation--I hope you can get a phone consult if you cannot travel there.

    Winnie

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