PET/CT shows progression:(

kayandok
kayandok Member Posts: 1,202 Member
edited July 2011 in Ovarian Cancer #1
Well, I am way overdue for an update, I guess. I had a PET/CT a couple weeks ago, showing progression and a new tumor (or extension of another one, they are not sure). I have 6 tumors total, and 2 of them in very difficult places (vena cava and behind the pancreas). I am on topo, but the CA125 is creeping up. Currently at 260, which is high for me. When I was full of disease it was only 600 or so.

Anyway, I took my records and had an appointment with a Radiation Center that does high ion type radiation and other kinds of radiation that targets the tumors. Yesterday I saw a world famious IGT (image guided therapy) specialist (putting chemo directly into the vein attached to the tumor. It turns out that neither of them are good treatments for my tumors, mainly because of the location, and I won't bore you with the details. The interesting thing in all that, if my tumor/tumors were IN my liver or invading any of my organs, they would be effective, but because they are outside all of the organs, the treatments are not effective and I would only be wasting my time and money.

I am gathering more info this week and have several options, all of which are not ideal. I need wisdom and then courage to make te right decision. I covet your prayes, good thoughts, teal hugs and rainbows, or whatever it is you can send over to Japan.

Hugs all around,
kathleen
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Comments

  • Tethys41
    Tethys41 Member Posts: 1,376 Member
    I hate this news
    Kathleen,
    I am so sorry to hear that your treatment is not working. How I wish they could find a way to choose an effective treatment for patients with this disease. I am not savvy about the allopathic options available for stubborn tumors. I do know about some alternative and integrative options, but I don't know how available they are in Japan. If you are interested in alternative ideas, feel free to PM me. I am hoping for a breakthrough for you.
  • kikz
    kikz Member Posts: 1,345 Member
    I am sending you
    all the prayers, good thoughts and teal hugs I can muster. You always chime in with kind and reassuring words. I pray you will find an effective treatment.

    Karen
  • skeeter1002
    skeeter1002 Member Posts: 43
    Praying
    Hi Kathleen! My mother's name is Kathleen as well. I'm sending prayers for you.

    Wenona
  • clamryn
    clamryn Member Posts: 508
    Prayers are being sent
    Kathleen, praying for you and will definitely put you on some prayer lists at a couple of churches. It is so hard to know what to do and which road to take. I am praying that God will give you guidance and healing.

    I am going to give my "Chucky Cancer" (punching bag) a swift kick for you tonight and probably an extra punch in the stomach.

    Sending you a big hug across the miles.

    Linda
  • mopar
    mopar Member Posts: 1,972 Member
    (((HUGS)))
    Sorry, Kathleen. This is the kind of news none of us ever want to hear. I certainly will be praying that you will have all the options and wisdom that you'll need to decide where to go from here. And plenty of hugs so that you know we're with you, even though so far way. All this comes T-MAIL not E-mail, which is the speediest and most effective mail ever!

    Monika
  • NCEllen
    NCEllen Member Posts: 115
    Sunday Sanctuary Day
    Kathleen - A Teal hellooooo! (way over yonder in Japan)

    The one thing I truly enjoy is sitting in a quiet place (even if it's not in a church) to reflect and pray which I do just about everyday not just on Sunday. Anyplace for me can become a sanctuary .... even sitting in my car with the Stones playing quietly in the background. Today as I search for updates on trials- I look all the time for ovarian and prostate cancer trials, I'll be keeping my eyes open for anything that may target a treatment for your situation. It never hurts to just keep hunting. Just picture me as Elmer Fudd and his twusty wrifle :) Sending you lots of hugs and prayers for guidance you seek, some sunshine and beautiful days - we'll go get those bad guys. Keep us posted - Ellen (Fudd) :>)
  • Mwee
    Mwee Member Posts: 1,338
    Do you feel the love?
    Dear Kathleen,
    You already have wisdom and courage, enough for 10 warriors. We are all here for you in anyway possible. We'll be waiting to hear about the other options. I'm so impressed with the info on IGT. This is not an option that would probably work for me either, but maybe for some of our sisters? Rainbows, teal hugs, and fairy teal toes on the way..
    (((HUGS))) Maria
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    Mwee said:

    Do you feel the love?
    Dear Kathleen,
    You already have wisdom and courage, enough for 10 warriors. We are all here for you in anyway possible. We'll be waiting to hear about the other options. I'm so impressed with the info on IGT. This is not an option that would probably work for me either, but maybe for some of our sisters? Rainbows, teal hugs, and fairy teal toes on the way..
    (((HUGS))) Maria

    maybe a different chemo
    would help. I am sad you have progression. You have been through so much, You always have a kind word for us and give us lots of hope. Now it is our turn!!! Also have you looked into clinical trials?? who knows maybe there is something out there. Keep fighting like a girl and get your big girl teal panties on..val
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    Good will and positive thoughts coming your way!
    It is disappointing that those new treatments cannot be useful for you. But I believe if we can stay healthy enough the right treatment might be right around the corner. From your posts your stregnth shines thru and I'm sure you will make the best decision on your next step, know that we are with you even though we are seperated in distance.
    Much Love
    Colleen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Kathleen....I am completely
    Kathleen....I am completely devistated by this news, and I know you are, as well, but please keep looking for options. Are there big cancer centers in Japan, like we have here? Are they going to discontinue the Topo? I'm guessing surgery is not one of the options, but I certainly wish they could just remove these things, as soon as they appear.

    If they can stabilize the disease - arrest the growth, so to speak - won't that be almost as good as destroying the tumors?

    I will pray that a treatment presents itself, and that it works. This is such a cruel, cruel disease. If it can't kill us outright it tries to scare us to death.

    Carlene
  • antcat
    antcat Member Posts: 270
    I'm sorry to hear your news
    Dear Kathleen, I am so sorry to hear your news. I know how it is to hear bad news. My tumors have shown progression since last December and a person gets to the point where they feel nothing will work. I was on Topotecan in April and May and I didn't see good results. Now I'm on Taxotere only and we can all only hope that doctors will eventually get the right drug. Please hang in there and know that you are in all our prayers.
  • EnglishGal
    EnglishGal Member Posts: 101
    So very sorry
    I am saddened to hear your news. But you have a great fighting spirit, so keep that going and be assured that my prayers are going up for you.

    My women's group at church took the service today and I read the blessing and sending forth. As I did so, I said a little silent prayer for you.

    We are all pulling for you!

    Ann
  • vj1
    vj1 Member Posts: 150
    antcat said:

    I'm sorry to hear your news
    Dear Kathleen, I am so sorry to hear your news. I know how it is to hear bad news. My tumors have shown progression since last December and a person gets to the point where they feel nothing will work. I was on Topotecan in April and May and I didn't see good results. Now I'm on Taxotere only and we can all only hope that doctors will eventually get the right drug. Please hang in there and know that you are in all our prayers.

    Kathleen
    Prayers, positive thoughts, truckloads of teal wishes coming your way. Keep us posted.

    Verna
  • Rookerbird
    Rookerbird Member Posts: 100
    Thank you for keeping us
    Thank you for keeping us updated. When I am discouraged about disease progression, I often think of you, as you have been through so many treatment options with that sweet, gentle smile on your face and head held high. You are an inspiration...you just "keep on keeping on." I'll be praying for wisdom as you make tough decisions, and that you be filled with serenity and joy each and every day.

    -Kathy
  • lulu1010
    lulu1010 Member Posts: 367

    Thank you for keeping us
    Thank you for keeping us updated. When I am discouraged about disease progression, I often think of you, as you have been through so many treatment options with that sweet, gentle smile on your face and head held high. You are an inspiration...you just "keep on keeping on." I'll be praying for wisdom as you make tough decisions, and that you be filled with serenity and joy each and every day.

    -Kathy

    Kathleen
    Keeping you in my prayers! Hugs!
  • jbeans888
    jbeans888 Member Posts: 313
    You are in my thoughts and
    You are in my thoughts and prayers. I am so sad that you have to deal with. BIG teal hugs for you. Keep us updated.
  • paris11
    paris11 Member Posts: 159
    jbeans888 said:

    You are in my thoughts and
    You are in my thoughts and prayers. I am so sad that you have to deal with. BIG teal hugs for you. Keep us updated.

    SO, so sorry
    DEAR KATHLEEN,

    You are a beautiful woman who radiates grace and wisdom. I am confident that you will discover an option that will be successful..

    Sending you and your family prayers, positive thoughts, teal hugs and many, many rainbows.

    You always have a home in Chicago or Ft. Lauderdale.

    My best love,

    Connie
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Kathleen
    Sending great big teal hugs and prayers and all kinds of happy magical thoughts your way. I am sorry to hear about the progression but you are an amazing fighter and it sounds like you have a very dedicated, knowledgeable medical team. Please let us know what you decide on.
    Hugs,
    Cindy
  • carolenk
    carolenk Member Posts: 907 Member

    Kathleen
    Sending great big teal hugs and prayers and all kinds of happy magical thoughts your way. I am sorry to hear about the progression but you are an amazing fighter and it sounds like you have a very dedicated, knowledgeable medical team. Please let us know what you decide on.
    Hugs,
    Cindy

    Where there's life, there's hope
    Dear Kathleen

    I am so sorry to hear your news. I'll be sending my good wishes your way. You must be doing something right as you are still alive. And my wish is that you keep hope alive, too.

    (((hugs)))

    Carolen
  • kayandok
    kayandok Member Posts: 1,202 Member
    Thank you!!!!
    I AM feeling the love!!!!

    I am hot on the trail to finding a way to survive as long as I can. I am beating on all the doors. Stay tuned for more updates soon.

    I would not be in one piece without this board's undying love and suport.

    K❤