Prognosis: Poor

Disneynutt
Disneynutt Member Posts: 134 Member
edited March 2014 in Ovarian Cancer #1
Wow, I was at my doctor appt. yesterday and saw this on my records. Prognosis: Poor. I cried all day yesterday and feel sick to my stomach today. The report went on to say I failed gemzar, and carbo/taxil and my tumor came back after only 2 months off chemo with taxotere/avastin, so that's why the prognosis. I am devastated.

So yesterday I sent out a copy of my records to the MD Anderson center in Orlando. I want to go to a doctor out of this podunk city and work with someone who is involved with research and a larger population. I'm also considering the University of Michigan. I worked there for 20 years and it would be good to go home.

Has anybody else been forced to deal with such a thing? What a shocker this was to me and my doctor certainly didn't say anything to make me feel better. Anybody have chemo resistant disease?

I see so many reports of all of you doing well and I can't help thinking ... I wish.

Thanks all,
Kate

Comments

  • nancy591
    nancy591 Member Posts: 1,027 Member
    KATE!
    Your feelings are understandable. I get jealous of others doing well. There I said it out loud! I am probably resistant as well. I guess misery loves company. I failed Gemzar, Doxil and a clinical trial. My ca126 more than tripeled recently after being pretty much stable over the past year!!!! I am almost at the number I started with.

    You are getting the latest treatment although you are being treated in a smaller town. So dont' think you short changed yourself. How often do clinical trials really work anyway? Yes, maybe there is a trial out there that might help you so going to MDA might be a good idea and WORTH the trip. I feel like I have exhausted many of my options. I am now on Avastin and Cytoxan. If this doesn't work I will be on Avastin/Taxol.

    More importantly, how are you feeling??? If I try to question my doctor about prognosis I always get the same response: it all depends on how you respond to the chemo. Sometimes I could get physically sick to my stomach when I think about my kid growing up without me.
    Don't feel like you are in this alone. I feel everything that you are feeling.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    nancy591 said:

    KATE!
    Your feelings are understandable. I get jealous of others doing well. There I said it out loud! I am probably resistant as well. I guess misery loves company. I failed Gemzar, Doxil and a clinical trial. My ca126 more than tripeled recently after being pretty much stable over the past year!!!! I am almost at the number I started with.

    You are getting the latest treatment although you are being treated in a smaller town. So dont' think you short changed yourself. How often do clinical trials really work anyway? Yes, maybe there is a trial out there that might help you so going to MDA might be a good idea and WORTH the trip. I feel like I have exhausted many of my options. I am now on Avastin and Cytoxan. If this doesn't work I will be on Avastin/Taxol.

    More importantly, how are you feeling??? If I try to question my doctor about prognosis I always get the same response: it all depends on how you respond to the chemo. Sometimes I could get physically sick to my stomach when I think about my kid growing up without me.
    Don't feel like you are in this alone. I feel everything that you are feeling.

    The 3 of us are in the same leaky boat. (((Nancy)))(((Kate))))
    Yes, although I'm genuinely happy with everyone's news of their latest joyful dance with NED, I admit that I wish I had similar thrilling news. My cancer returned 5 1/2 months after my initial carbo/taxol even though I ALSO allowed them to fry me with 28 rounds of pelvic radiation to try and prevent local cancer spread. Unfortunately my cancer traveled through my lymph system to distant nodes. I did taxol for 17 infusions before we decided it wasn't working (with progression shown on CT/PET). Then I did 3 Doxil infusions and a new CT/PET that showed further progressing. Now I'm on carboplatin weekly and my CA125 is swinging up and down so maybe THIS isn't working. "Chemo resistant" is a scary thought when it seems as if chemo is all we have to hold back the beast. You are not alone. I'm sure my chart also says "Prognosis POOR" but I'm grateful I haven't seen it in writing personally!! How AWFUL to see that attached to your file! Suspecting it in your heart and seeing it on paper are 2 different things. How did you get a look at your file?

    I think it's a matter of trial and error. You have to keep switching strategies. My radiation oncologist told me to come to him if I started having pain or if the cancer starts affecting me in any bad ways. He said that radiation has a much higher percentage (80%+) of shrinking tumors than chemo does and can be used palliatively to get things back under control if chemo continues to be ineffective. The down side of radiation is that it isn't systemic, and while you are radiating a tumor, new cancer can be growing elsewhere at will. But if chemo continues to fail you and you start having physical symtoms (bleeding, numbness, etc.) or pain from your cancer, it's good to know that radiation is there to buy you some more time.

    I do think the trick to long survival is long remissions, and I know that unfortunately isn't the way it's shaking out for me. At least you both seem to be able to tolerate the constant chemo; my bone marrow is really compromised and just being able to GET chemo when I can is a victory for me since I often can't safely get chemo. I'd say my prognosis is worse than your because of this.

    I have made my peace with my journey. I live in the 'now' and try not to dwell on the past or future. I think we must make memories for those we will leave behind, and shore up their coping skills. I hope that my own peacefulness shows my family a way to get through this and still be okay. Death is inevitable and universal, not just for the 3 of us but for every living thing. I plan to battle on as long as my body lets me. But I will keep that battle just a small part of the bigger life I have to live for the months or years I am still here.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member

    The 3 of us are in the same leaky boat. (((Nancy)))(((Kate))))
    Yes, although I'm genuinely happy with everyone's news of their latest joyful dance with NED, I admit that I wish I had similar thrilling news. My cancer returned 5 1/2 months after my initial carbo/taxol even though I ALSO allowed them to fry me with 28 rounds of pelvic radiation to try and prevent local cancer spread. Unfortunately my cancer traveled through my lymph system to distant nodes. I did taxol for 17 infusions before we decided it wasn't working (with progression shown on CT/PET). Then I did 3 Doxil infusions and a new CT/PET that showed further progressing. Now I'm on carboplatin weekly and my CA125 is swinging up and down so maybe THIS isn't working. "Chemo resistant" is a scary thought when it seems as if chemo is all we have to hold back the beast. You are not alone. I'm sure my chart also says "Prognosis POOR" but I'm grateful I haven't seen it in writing personally!! How AWFUL to see that attached to your file! Suspecting it in your heart and seeing it on paper are 2 different things. How did you get a look at your file?

    I think it's a matter of trial and error. You have to keep switching strategies. My radiation oncologist told me to come to him if I started having pain or if the cancer starts affecting me in any bad ways. He said that radiation has a much higher percentage (80%+) of shrinking tumors than chemo does and can be used palliatively to get things back under control if chemo continues to be ineffective. The down side of radiation is that it isn't systemic, and while you are radiating a tumor, new cancer can be growing elsewhere at will. But if chemo continues to fail you and you start having physical symtoms (bleeding, numbness, etc.) or pain from your cancer, it's good to know that radiation is there to buy you some more time.

    I do think the trick to long survival is long remissions, and I know that unfortunately isn't the way it's shaking out for me. At least you both seem to be able to tolerate the constant chemo; my bone marrow is really compromised and just being able to GET chemo when I can is a victory for me since I often can't safely get chemo. I'd say my prognosis is worse than your because of this.

    I have made my peace with my journey. I live in the 'now' and try not to dwell on the past or future. I think we must make memories for those we will leave behind, and shore up their coping skills. I hope that my own peacefulness shows my family a way to get through this and still be okay. Death is inevitable and universal, not just for the 3 of us but for every living thing. I plan to battle on as long as my body lets me. But I will keep that battle just a small part of the bigger life I have to live for the months or years I am still here.

    Alternatives?
    I can't imagine how horrible the three of you must feel. I know when I was getting treatment and in that limbo of not really knowing what the future held, every negative word sent me reeling. It is such an emotionally delicate place to be.

    I wonder if any of you have considered alternatives? When I was diagnosed, I followed the traditional surgery/chemo route, but I found half a dozen other things that were supposed to fight cancer and I did those also.

    You could contact the hospital in Mexico named Oasis of Hope (www.oasisofhope.com). They will set you up with a phone consult with a doctor there to discuss your position and to see what they recommend. I went there after my second chemo and got two weeks worth of support therapy that boosted my immune system and made the cancer more sensitive to the chemo treatment.

    There are a lot of integrative treatments out there. Vitamin C IVs are a huge thing, and it annoys the heck ot of me that traditional oncologists don't agree. Every cancer patient should be receiving these IVs. In my research,the big message I've received is that chemo is necessary in fighting ovarian cancer, but if you want results, you need to use a combination of therapies.
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    nancy591 said:

    KATE!
    Your feelings are understandable. I get jealous of others doing well. There I said it out loud! I am probably resistant as well. I guess misery loves company. I failed Gemzar, Doxil and a clinical trial. My ca126 more than tripeled recently after being pretty much stable over the past year!!!! I am almost at the number I started with.

    You are getting the latest treatment although you are being treated in a smaller town. So dont' think you short changed yourself. How often do clinical trials really work anyway? Yes, maybe there is a trial out there that might help you so going to MDA might be a good idea and WORTH the trip. I feel like I have exhausted many of my options. I am now on Avastin and Cytoxan. If this doesn't work I will be on Avastin/Taxol.

    More importantly, how are you feeling??? If I try to question my doctor about prognosis I always get the same response: it all depends on how you respond to the chemo. Sometimes I could get physically sick to my stomach when I think about my kid growing up without me.
    Don't feel like you are in this alone. I feel everything that you are feeling.

    Hey Nancy. You know you
    Hey Nancy. You know you were one of the people I was thinking about yesterday. I have followed your journey closely even though I don't post a lot because I felt I had a lot in common with you. Geez, it makes me so angry we have to suffer. I am so sorry for everything... your kids... your pain... just everything.

    What about another clinical trial? There must be more than one going on.

    I had a lot of luck with Avastin/Taxotere even though it made me pretty ill. I pray you will have good results. You know, I told my doctor up at Shands Hospital in Gainesville about Cytoxan and she had never heard of it. What's that? she asked. Uh Huh... allrighty then.

    I just have one little tumor wrapped around some arteries in my abdomen which the doctor couldn't remove because she was afraid I might bleed to death. Now, I don't care. I'd have that operation in a minute if given the choice again. We shall see.

    Thanks and my thoughts are with you.... you have a lot of courage.

    Has the doctor ever told you you were resistant?

    =Kate
  • nancy591
    nancy591 Member Posts: 1,027 Member

    The 3 of us are in the same leaky boat. (((Nancy)))(((Kate))))
    Yes, although I'm genuinely happy with everyone's news of their latest joyful dance with NED, I admit that I wish I had similar thrilling news. My cancer returned 5 1/2 months after my initial carbo/taxol even though I ALSO allowed them to fry me with 28 rounds of pelvic radiation to try and prevent local cancer spread. Unfortunately my cancer traveled through my lymph system to distant nodes. I did taxol for 17 infusions before we decided it wasn't working (with progression shown on CT/PET). Then I did 3 Doxil infusions and a new CT/PET that showed further progressing. Now I'm on carboplatin weekly and my CA125 is swinging up and down so maybe THIS isn't working. "Chemo resistant" is a scary thought when it seems as if chemo is all we have to hold back the beast. You are not alone. I'm sure my chart also says "Prognosis POOR" but I'm grateful I haven't seen it in writing personally!! How AWFUL to see that attached to your file! Suspecting it in your heart and seeing it on paper are 2 different things. How did you get a look at your file?

    I think it's a matter of trial and error. You have to keep switching strategies. My radiation oncologist told me to come to him if I started having pain or if the cancer starts affecting me in any bad ways. He said that radiation has a much higher percentage (80%+) of shrinking tumors than chemo does and can be used palliatively to get things back under control if chemo continues to be ineffective. The down side of radiation is that it isn't systemic, and while you are radiating a tumor, new cancer can be growing elsewhere at will. But if chemo continues to fail you and you start having physical symtoms (bleeding, numbness, etc.) or pain from your cancer, it's good to know that radiation is there to buy you some more time.

    I do think the trick to long survival is long remissions, and I know that unfortunately isn't the way it's shaking out for me. At least you both seem to be able to tolerate the constant chemo; my bone marrow is really compromised and just being able to GET chemo when I can is a victory for me since I often can't safely get chemo. I'd say my prognosis is worse than your because of this.

    I have made my peace with my journey. I live in the 'now' and try not to dwell on the past or future. I think we must make memories for those we will leave behind, and shore up their coping skills. I hope that my own peacefulness shows my family a way to get through this and still be okay. Death is inevitable and universal, not just for the 3 of us but for every living thing. I plan to battle on as long as my body lets me. But I will keep that battle just a small part of the bigger life I have to live for the months or years I am still here.

    Linda
    You really a special lady. You have such a nice way of saying things. You certainly made me feel better. I can FEEl your peacfulness. I am truly pleased to have met you in my journy and happy we have crossed paths.

    Thank you for sharing the news about the radiation. I didnt know that. In regard to the carbo. It was hard on my blood counts too the 2nd time around. When it was reintroduced earlier this year I had to delay treatment then go to a smaller dose. Unfortunately I had that reaction after the 2nd infusions and haven't recv'd it since.
  • Disneynutt
    Disneynutt Member Posts: 134 Member

    The 3 of us are in the same leaky boat. (((Nancy)))(((Kate))))
    Yes, although I'm genuinely happy with everyone's news of their latest joyful dance with NED, I admit that I wish I had similar thrilling news. My cancer returned 5 1/2 months after my initial carbo/taxol even though I ALSO allowed them to fry me with 28 rounds of pelvic radiation to try and prevent local cancer spread. Unfortunately my cancer traveled through my lymph system to distant nodes. I did taxol for 17 infusions before we decided it wasn't working (with progression shown on CT/PET). Then I did 3 Doxil infusions and a new CT/PET that showed further progressing. Now I'm on carboplatin weekly and my CA125 is swinging up and down so maybe THIS isn't working. "Chemo resistant" is a scary thought when it seems as if chemo is all we have to hold back the beast. You are not alone. I'm sure my chart also says "Prognosis POOR" but I'm grateful I haven't seen it in writing personally!! How AWFUL to see that attached to your file! Suspecting it in your heart and seeing it on paper are 2 different things. How did you get a look at your file?

    I think it's a matter of trial and error. You have to keep switching strategies. My radiation oncologist told me to come to him if I started having pain or if the cancer starts affecting me in any bad ways. He said that radiation has a much higher percentage (80%+) of shrinking tumors than chemo does and can be used palliatively to get things back under control if chemo continues to be ineffective. The down side of radiation is that it isn't systemic, and while you are radiating a tumor, new cancer can be growing elsewhere at will. But if chemo continues to fail you and you start having physical symtoms (bleeding, numbness, etc.) or pain from your cancer, it's good to know that radiation is there to buy you some more time.

    I do think the trick to long survival is long remissions, and I know that unfortunately isn't the way it's shaking out for me. At least you both seem to be able to tolerate the constant chemo; my bone marrow is really compromised and just being able to GET chemo when I can is a victory for me since I often can't safely get chemo. I'd say my prognosis is worse than your because of this.

    I have made my peace with my journey. I live in the 'now' and try not to dwell on the past or future. I think we must make memories for those we will leave behind, and shore up their coping skills. I hope that my own peacefulness shows my family a way to get through this and still be okay. Death is inevitable and universal, not just for the 3 of us but for every living thing. I plan to battle on as long as my body lets me. But I will keep that battle just a small part of the bigger life I have to live for the months or years I am still here.

    Dear Linda,
    You sound like a

    Dear Linda,

    You sound like a a very wise person and I appreciate your response. You are absolutely correct, I knew I was in trouble but to see it on my medical report was pretty disheartening. And then to have the doctor be so unsympathetic was just too much.

    Nobody has ever mentioned radiation to me ever but I'm sure going to ask about it at some point although I'm thinking if it were a possibility someone would have suggested it.

    Maybe the carboplatin IS working to at least, hold "it" at bay. I sure hope so. I just can't believe more progress has not been made in treating this disease. It's ridiculous. Are they any more advanced overseas I wonder?

    I saw this on my records because I had to have a copy to send to MD Anderson. Whew... felt like somebody punched me in the stomach.

    But I think you are correct, we need to keep switching strategies.

    I also know that there is a lot of research into platinum-resistant chemicals but it just seems to take so bloody long.

    You know, I wish we all were closer geographically. I would love to get to know you and the ladies on this board. I have nothing close by and am actually thinking about seeking the help of a psychologist or social worker. I need someone to talk to about this. I sometimes wish I were dead already since then I wouldn't have to suffer and everybody I know could get on with things. Not a good thought but I can't help myself.

    Sorry, I'm getting maudlin. I shall pray my brains out for you which probably wouldn't take long. :-)

    -Kate
  • nancy591
    nancy591 Member Posts: 1,027 Member

    Hey Nancy. You know you
    Hey Nancy. You know you were one of the people I was thinking about yesterday. I have followed your journey closely even though I don't post a lot because I felt I had a lot in common with you. Geez, it makes me so angry we have to suffer. I am so sorry for everything... your kids... your pain... just everything.

    What about another clinical trial? There must be more than one going on.

    I had a lot of luck with Avastin/Taxotere even though it made me pretty ill. I pray you will have good results. You know, I told my doctor up at Shands Hospital in Gainesville about Cytoxan and she had never heard of it. What's that? she asked. Uh Huh... allrighty then.

    I just have one little tumor wrapped around some arteries in my abdomen which the doctor couldn't remove because she was afraid I might bleed to death. Now, I don't care. I'd have that operation in a minute if given the choice again. We shall see.

    Thanks and my thoughts are with you.... you have a lot of courage.

    Has the doctor ever told you you were resistant?

    =Kate

    thanks Kate
    I think of you often too, and others. I was looking at the trials today as a matter of fact. There is a new Avastin trial but my Doc wants to try the standard treatment so I'll give it a whirl and hope it sticks. This is the new trial I was looking at:
    A PHASE II RANDOMIZED, DOUBLE-BLINDED EVALUATION OF ORAL EVEROLIMUS (RAD001) PLUS BEVACIZUMAB VS. ORAL PLACEBO PLUS BEVACIZUMAB IN THE TREATMENT OF RECURRENT OR PERSISTENT EPITHELIAL OVARIAN, FALLOPIAN TUBE OR PRIMARY PERITONEAL CANCER (IND # 109657)(GOG-0186G)
    My doc is on the board that looks at ALL of the prospective trials.

    I think it is good that you have one area. I have several areas and lymph nodes. I don't ask specifically how many areas I have. I take it that you are feeling well?? That is SO much of the battle. Take it and run!

    No, I was never told I was resistant. My doc really doesn't offer up to much information either...and..I don't really ask. I agree with Linda. Thinking you are 'poor prognosis' and seeing it on paper is definately something different!!!

    XOXOXOXOXO
  • confuzzled
    confuzzled Member Posts: 21
    Add me to the list
    On Wednesday I too was told that my prognosis doesn't look good; that the cancer is "stubborn". This only confired what I've felt was happenening the last month or so. I've come to terms with this and am at peace with all of it, except leaving my soon to be husband. I will continue to go through with the chemo only if to extend my time with him so that we can be married and I can make sure that he will be "okay" once I am gone. Bob was with me when the doctor said that the next chemo drug would be nothing but comfort treatment and for once I was glad he was there so he could hear it from the doctor and not me.

    Ladies you are in my thoughts and prayers, with the hope that we can all get through this as painlessly as possible.

    Jane
  • Tethys41 said:

    Alternatives?
    I can't imagine how horrible the three of you must feel. I know when I was getting treatment and in that limbo of not really knowing what the future held, every negative word sent me reeling. It is such an emotionally delicate place to be.

    I wonder if any of you have considered alternatives? When I was diagnosed, I followed the traditional surgery/chemo route, but I found half a dozen other things that were supposed to fight cancer and I did those also.

    You could contact the hospital in Mexico named Oasis of Hope (www.oasisofhope.com). They will set you up with a phone consult with a doctor there to discuss your position and to see what they recommend. I went there after my second chemo and got two weeks worth of support therapy that boosted my immune system and made the cancer more sensitive to the chemo treatment.

    There are a lot of integrative treatments out there. Vitamin C IVs are a huge thing, and it annoys the heck ot of me that traditional oncologists don't agree. Every cancer patient should be receiving these IVs. In my research,the big message I've received is that chemo is necessary in fighting ovarian cancer, but if you want results, you need to use a combination of therapies.

    This comment has been removed by the Moderator
  • kayandok
    kayandok Member Posts: 1,202 Member

    Add me to the list
    On Wednesday I too was told that my prognosis doesn't look good; that the cancer is "stubborn". This only confired what I've felt was happenening the last month or so. I've come to terms with this and am at peace with all of it, except leaving my soon to be husband. I will continue to go through with the chemo only if to extend my time with him so that we can be married and I can make sure that he will be "okay" once I am gone. Bob was with me when the doctor said that the next chemo drug would be nothing but comfort treatment and for once I was glad he was there so he could hear it from the doctor and not me.

    Ladies you are in my thoughts and prayers, with the hope that we can all get through this as painlessly as possible.

    Jane

    Kate, Linda, Nancy, Jane,
    I have been there so many times, with your same thougths and words. Actually most of us, if we were to look at our charts, it would probably say, "poor" I think, especially if we were dx 3C or 4.

    I got a blow not too long ago when I had my cardo issue in the chemo room, on December 3rd. At the beginning of the drip, my heart had some kind of constirction and they had to stop the drip. When they wheeled me down to my doctor for the check over, he blurted out in middle of everything else he said, "well, you are not going to get a remission with this anyway...." WHAT? Just because I am 4th line and just because the statistics say that once you recur, you are on chemo forever........ Anyway, even if it were true, it made me mad, and even though I don't even agree with him, it affected my mood for a whole week.

    Then, lalst Friday (I took a 6 week break over Christmas) when I was in his office for my lab read before chemo, I said to him. I know you said that I was not going to get a remission with this dense dose (numbers are plummeting) I still want to keep it up (in spite of the moderate neuropathy)! He said, "Oh you never know, I think you will probably!" WHAT?!

    The point of my story is that words form our doctor or those who have "power" over us are so powerful in giving hope or dashing it! I wish more doctors realized this and were more careful with what they say. The bottom line is THEY DON'T KNOW! Only GOD does.

    So, as my little rant comes to a close. My thougts for the day are, to do what you can to stay positve, have all the hope in the world, and live each day cultivating all the JOY you have in every little thing you do. I can't believe the JOY that I have been expericing with just focussing on all the simple things I love, but took so for granted until 3 1/2 years ago. So simple but so difficutl to cultivate with what sits on our heart and looms in our mind at all times.

    I love you all and am praying for you today!!
    hugs,
    kathleen
  • mopar
    mopar Member Posts: 1,972 Member
    SENDING HUGS & PRAYERS
    My heart goes out to all of you as I read your posts this morning. I won't get on the bandwagon as to how I feel about this lack of research, progress, cure, etc. I'm sure you've all thought about it as well. What's left is for us to find a way to deal with all of this, try to move forward, and live life as fully as we can.

    I also agree with alternative treatments. When some people hear that they think 'witch doctor' or really weird stuff. There can be some odd suggestions out there, but I think that's rare. I try to take the best of both worlds. Maybe someday the two will meet in the middle to agree on something, for the patient's sake.

    I live in Michigan, Kate. If you would like to check out another physician I highly recommend mine. I can't guarantee what he'd tell you, but as far as I'm concerned he's the best. Email me and I can give you the info.

    Till then, hugs and prayers to all of you. You're in my thoughts and prayers always.

    Monika
  • nancy591
    nancy591 Member Posts: 1,027 Member
    unknown said:

    This comment has been removed by the Moderator

    active treatment
    Now that I am in active treatment I would be worried about doing something counter productive. I DID look into somethings when I was initally diagnosed. Maybe if I were in remission still I'd look. I just thought I'd be one of those people who have a lengthy remission.
  • clamryn
    clamryn Member Posts: 508
    Feel the same way...
    Kate, I am so glad you put it down on paper. I have thought it but try to put it out of my mind. I want to hear that all of us are in remission and that one day maybe this board wouldn't even need to be here because a cure would be found. When I found out my cancer was back it was right after I had a lung collapse and they had found that I have Interstitial Lung Disease. (I mean what the heck is that???? How did I get it????) So I end up with an oxygen tank. Then a couple of months later.... Oh yeah my cancer came back. So as I am walking around with an oxygen tank and people have heard through the grapevine that I have cancer....They ask, "Were you a smoker?" Heck no, I have ovarian cancer... and by the way I have never smoked in my life.
    Kate... I don't know if the cancer will get me or the lung disease. I don't think I want to read my chart. I am sure that it doesn't have anything in it that I want to hear right now. I do like my doctor and he is always pretty positive with me but deep in the back of my mind.... I know.
    Kate, Nancy and Linda.... saying a special prayer today.

    Linda
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    poor outcome
    Katie I read your posts last night and have been thinking of you and had a hard time sleeping. I thinkall off us will have a poor outcome and we know it deep down in our souls. we can pray and thank the Lord each day we wake up in the morning. We can go about our daily lives working house cleaning etc. But our illness is always in the back of our thoughts. Maybe your chart was a type o. Ask your md what does this mean :poor prognosis:. I know some women that I have chemo with that are terminal but continue tx. Tomorrow is promised to no one and we teal warriers know that more than anyone. Try diffent md or clinical trials. I beleive the right tx is out there for you and all the other ladies who posted on your blog. God bless and BELIEVE.....val
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Kate, I know that was a slap
    Kate, I know that was a slap in the face, but it's not gospel. There have been plenty of other women who made those know-it-all doctors eat crow. Here are just a few....all posted on another board.

    My path report had "poor unfavorable prognosis" written beside of everything listed. I am still dancing with NED and feeling better every day.


    I was dxed with IIIC June 05. On my 1 year checkup , my suregon pipes ups with " who would of thought ?" Like he was surprised i was still around. Well,let me tell you dear heart. I am alive and still NED, and I say F**k the statistics.


    I was also told initially by my surgeon and my oncologist that I have a "poor prognosis".
    Its been 3 1/2 years for me now since this all began. I am minus my female parts but I am still alive and kicking....I am NED.




    Carlene
  • Disneynutt
    Disneynutt Member Posts: 134 Member

    Kate, I know that was a slap
    Kate, I know that was a slap in the face, but it's not gospel. There have been plenty of other women who made those know-it-all doctors eat crow. Here are just a few....all posted on another board.

    My path report had "poor unfavorable prognosis" written beside of everything listed. I am still dancing with NED and feeling better every day.


    I was dxed with IIIC June 05. On my 1 year checkup , my suregon pipes ups with " who would of thought ?" Like he was surprised i was still around. Well,let me tell you dear heart. I am alive and still NED, and I say F**k the statistics.


    I was also told initially by my surgeon and my oncologist that I have a "poor prognosis".
    Its been 3 1/2 years for me now since this all began. I am minus my female parts but I am still alive and kicking....I am NED.




    Carlene

    I am very happy for you
    I am very happy for you Carlene. That's just great. And I understand the attitude regarding statistics. They do, indeed, break down on the personal level. I wish we could all have the outcome you had. I was diagnosed in 09 so it has not been that long and I think my doctor was dismayed about my lack of positive response. I mean I haven't even tried all the treatments yet and I'm being stamped "condemned". What the heck? So, obviously she doesn't thing anything will work on me. I will try to keep on truckin' ... and I'll see what other doctors have to say. My doctors are such big DOWNERS.

    I sometimes wonder what role stress plays in all this. Stress releases certain chemicals into the bloodstream that are not good.. cortisol being one. My Mom passed away in June (we were very close) and I have to move again for the third time in 4 years on February 1. and I just tend to feel stressed anyway. I may try acupuncture maybe and massages and facials. Just to try to relax. We shall see. Thanks for your support.

    By the by, your "blue" picture on Facebook is very nice.

    -Kate
    Not gospel... not gospel... not gospel... not gospel
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    clamryn said:

    Feel the same way...
    Kate, I am so glad you put it down on paper. I have thought it but try to put it out of my mind. I want to hear that all of us are in remission and that one day maybe this board wouldn't even need to be here because a cure would be found. When I found out my cancer was back it was right after I had a lung collapse and they had found that I have Interstitial Lung Disease. (I mean what the heck is that???? How did I get it????) So I end up with an oxygen tank. Then a couple of months later.... Oh yeah my cancer came back. So as I am walking around with an oxygen tank and people have heard through the grapevine that I have cancer....They ask, "Were you a smoker?" Heck no, I have ovarian cancer... and by the way I have never smoked in my life.
    Kate... I don't know if the cancer will get me or the lung disease. I don't think I want to read my chart. I am sure that it doesn't have anything in it that I want to hear right now. I do like my doctor and he is always pretty positive with me but deep in the back of my mind.... I know.
    Kate, Nancy and Linda.... saying a special prayer today.

    Linda

    Oh dear Linda. I never
    Oh dear Linda. I never heard of your lung disease before. I'm going to have to look it up. Geez, isn't that the way though? Not only do you get a horrible disease like ovca but THEN you get some lung disease and I get resistant tumors!!! Crap, you'd think one thing was enough. I just get so angry sometimes. I just wish to God we could all be cancer free.

    Well I'm hoping you are feeling ok?! It's easier to fight when you feel good.

    You know I'm not a religious person so I'm thinking if prayer really worked we'd all be cured. Right? What up with that? Why some people and not others? Maybe I'll start asking around. I know a few Christians who might be willing to talk to me. I'm kind of curious.

    I wish you all the best Linda. If I prayed you'd be in them.

    -Kate
  • nancy591
    nancy591 Member Posts: 1,027 Member

    Kate, I know that was a slap
    Kate, I know that was a slap in the face, but it's not gospel. There have been plenty of other women who made those know-it-all doctors eat crow. Here are just a few....all posted on another board.

    My path report had "poor unfavorable prognosis" written beside of everything listed. I am still dancing with NED and feeling better every day.


    I was dxed with IIIC June 05. On my 1 year checkup , my suregon pipes ups with " who would of thought ?" Like he was surprised i was still around. Well,let me tell you dear heart. I am alive and still NED, and I say F**k the statistics.


    I was also told initially by my surgeon and my oncologist that I have a "poor prognosis".
    Its been 3 1/2 years for me now since this all began. I am minus my female parts but I am still alive and kicking....I am NED.




    Carlene

    3 1/2?
    I thought you were diagnosed in '09? Wouldnt' that be 1 1/2?
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    unknown said:

    This comment has been removed by the Moderator

    Alternatives
    I can definitely look into these. I've never heard of them so will do some investigation. Thanks much for your (plural) suggestions.

    I am going to make an appt. with a nutritionist next week... just to be thorough.

    -K