My recurrance is offical. I start back on chemo Monday. :(

lindaprocopio
lindaprocopio Member Posts: 1,980 Member
edited March 2014 in Uterine/Endometrial Cancer #1
Well, ladies, this isn't the news I wanted to be posting. I remember how I felt when Fran's cancer recurred. I sincerely felt so very very bad for her, and at the same time, I felt that shiver of knowing "if it could happen to her; it could happen to me." I'm so so sorry for sending that shiver up each of you. Please try not to react that way; it's been hard enough for me to see my husband's haunted face and my son crying and my granddaughter sobbing. I always thought how HARD it would be to go through cancer alone, but to witness the pain my cancer is causing my loved ones,.... I guess I'm saying that there are pluses to not dragging others through it. I didn't wear mascara to my appointment and took a bunch of tissues, prepared to cry at the news. But I didn't cry at the oncologist's. I didn't cry until my granddaughter called me sobbing. (Parents should realize that 8 year olds are NOSY and LISTEN when they are talking!) I had to go give her a hug and eat ice cream with her and reassure her that I would still be around as long as I could.

Anyway, here are the details: First the GOOD NEWS: I have no tumors on any of my organs, but I have cancer recurrance in 3 lymph nodes: 1 under my left armpit; 1 behind my stomach; & the one my DIL saw in the pelvis between 1 of my kidneys and my aorta. None are bigger than an inch. Because UPSC is often microscopic in the lymph nodes, my oncologist finds needle biopsies to be too hit-or-miss to be diagnostic, and feels confident that the sharp rise in my CA-125 and the PET-scan are enough to confirm the cancer recurrance without second-look surgery or a biopsy. (only my underarm node would even be a possibility for surgery or a needle biopsy as the others are located in the wrong places. & he said at this point "would it change the treatment decision or prognosis? NO, so why go through that?")

He offered me the option of waiting to start treatment until after the holidays, or to get started with a low dose of taxol (JUST taxol) once a week. With the lowered dosage, I don't have to take steroids except the ones given just before the infusion which will only last an hour. Because we are no longer going all-out for a cure, the goal will be to hold the cancer in check and get me back into remission (i.e. CA125 and NED CT-scan). The pattern of my life will now be repeated cycles of treatment and remission over and over, like the ladies with ovarian cancer. So I decided to start right in on it. If after 4 rounds of taxol my CA125 doesn't start dropping, I'll need to get a port and start on Doxil or cisplatin/adenomiesin (sp??), or by then I will be able to add carboplatin to my taxol. The bowel issues are unrelated to the cancer recurrance & are a side effect of the radiation, and I being set up with a nutritionist to help me deal with that.

There's a lot more, but I am exhausted with the emotion of the day. So sorry to have such crappy news. And remember, just because it happened to me does NOT mean that it's just a matter of time until it happens to you. I just wasn't lucky. ((((HUGS)))))
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Comments

  • california_artist
    california_artist Member Posts: 816 Member
    #2
    I've never heard such resounding silence.
    I think we are all in shock. I went over to facebook and wrote over there while you were writing here. I'm sure you're just wiped out emotionally. Thank you so much for letting us all know.

    When you feel like it come back on, maybe we can figure more on a plan of attack.

    Love you oodles,

    Claudia

    My heart is broken. I still can't believe it. You did every single thing they told you to do.
  • pjba11
    pjba11 Member Posts: 188
    #3
    feel so helpless
    SO VERY HELPLESS.... my heart breaks for you with this dreadful news. You will have a lot ahead of you Linda. I read the ovarian board a lot ... they are fighters ... and you are too. You have to be totally exhausted, but know that I am here if you find anything that I can do to help. You and your family are in my prayers. We need the miracle of a cure. I know hugs aren't enough.. but you have mine. Peggy
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    #4
    Linda
    Hello girlfriend,

    Sending you a hug long distance. Sorry your news was not better or what you should have heard...It is so damn hard, but important we all stand strong for each other to get us thru the tough moments.

    I start my Chemo on Monday too, so we can hang together. This will be my first round combined with Radiation. I will need to lean on all of you to answer all my questions.

    I cannot imagine how hard it was for you to talk to your Granddaughter...I still have not told my Mother and I need to do that before next Monday...

    Stand strong, we are all behind you!

    Laurie
  • kkstef
    kkstef Member Posts: 688 Member
    #5
    I am SO Sorry, Linda
    Linda,

    I am so saddened to hear your news and feel so sorry about the awful news you received today. BUT, you have a plan, you are moving ahead quickly, you are well informed, you are a STRONG and POSITIVE Woman... I am counting on a very long remission for you.

    I can understand how exhausted you must feel, but know that you have a HUGE group of women who are praying and supporting you, each and every day! Don't hesitate to let us know what we can do for YOU!!

    HUGE hugs to you and your family!

    Karen
  • thank you
    thank you Member Posts: 77
    #6
    TiggersDoBounce said:

    Linda
    Hello girlfriend,

    Sending you a hug long distance. Sorry your news was not better or what you should have heard...It is so damn hard, but important we all stand strong for each other to get us thru the tough moments.

    I start my Chemo on Monday too, so we can hang together. This will be my first round combined with Radiation. I will need to lean on all of you to answer all my questions.

    I cannot imagine how hard it was for you to talk to your Granddaughter...I still have not told my Mother and I need to do that before next Monday...

    Stand strong, we are all behind you!

    Laurie

    I just visited the ovarian
    I just visited the ovarian cancer posts. Women there are used to this lifestyle, cycles of treatment with brakes, for years!!!!. I am - as everybody else - not happy with the news (No this CAN'T happen to Linda!!!). But reading their posts, helped me feel better, this is NOT the end!
    Linda you are here, alive, full of energy, with a wonderful family, a wonderful husband and many other people who never met you but we feel that we love you. You are here, able to win. Cancer can be a chronic disease like my patients, patients with connective tissue diseases which flare up and remit. Just think, if it was not for the hair loss, would you mind the lifelong treatment?
    You are NOT SICK! You only have 3 enlarged lymph nodes. You again caught it early. In one month, CA 125 will be normal, and you will be NED.
    I remember reading one of your posts: "It is good to deal with our own mortality". I actually think that everybody should do it, regardless of their health. Many of us who consider ourselves healthy - "the undiagnosed yet", don't know what next day has in store for us.
    Who cares about the hair! Go, and take these cells away from your body!!!! Your family, your grand kids WANT YOU not your hair!!!!
    BEST!
    Chrysoula
  • Katrinka123
    Katrinka123 Member Posts: 51
    #7
    kkstef said:

    I am SO Sorry, Linda
    Linda,

    I am so saddened to hear your news and feel so sorry about the awful news you received today. BUT, you have a plan, you are moving ahead quickly, you are well informed, you are a STRONG and POSITIVE Woman... I am counting on a very long remission for you.

    I can understand how exhausted you must feel, but know that you have a HUGE group of women who are praying and supporting you, each and every day! Don't hesitate to let us know what we can do for YOU!!

    HUGE hugs to you and your family!

    Karen

    Linda, I was so certain your
    Linda, I was so certain your news was going to be different. I feel awful that you are going to be back at it in less than a week. I have a very dear friend who has been battling cancer in just the way you describe, in and out. She does LIVE her life and works it all around her treatments.

    All my prayers for you while you prepare for this fight.

    -Kat
  • Kate2005
    Kate2005 Member Posts: 7
    #8
    Hug
    I'm so sorry to hear your news. It sounds like you almost knew what the answer was, that had to have been hard.

    I'm glad you are keeping your head up and staying informed. You give so much on these threads I'm wishing you the best.
  • Unknown
    Unknown
    #9
    Katrinka123 said:

    Linda, I was so certain your
    Linda, I was so certain your news was going to be different. I feel awful that you are going to be back at it in less than a week. I have a very dear friend who has been battling cancer in just the way you describe, in and out. She does LIVE her life and works it all around her treatments.

    All my prayers for you while you prepare for this fight.

    -Kat

    This comment has been removed by the Moderator
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #10
    Kate2005 said:

    Hug
    I'm so sorry to hear your news. It sounds like you almost knew what the answer was, that had to have been hard.

    I'm glad you are keeping your head up and staying informed. You give so much on these threads I'm wishing you the best.

    ((((HUGS TO YOU, LINDA))))
    Like others, I am speechless and sad. Thank you for sharing this news with us. You are a wonderful example of strength, grace, and light. I wish you serenity and peace.

    Love, Mary Ann
  • fuzzytrouble
    fuzzytrouble Member Posts: 212
    #11
    So sorry Linda
    I was so hoping for better news from you today, and I know what you went through after the news. I was crying so hard after I left the doc's it took me 45 minutes to start my car. That was the first bad news, the second one I had my husband with me and that was the worse news ever. I will be joining you with the chemo treatments so we and the rest of our sisters can cry together. This was the first time I wanted a pill to take the pain away (mental pain) and I still haven't gotten the word if they are going to give me anything yet.
    I do good for the weeks after the treatments but as soon as it's time to go I get so depressed a few days before hand. I keep telling myself it's a chronic disease and I need to deal with it and just go on, some days it works and other times not so good. I am getting better each week knowing that this treatment just might keep it in check, so now that's the same as you. I have to have 2 more treatments before my next scan. The waiting game is the hardest so I just try to keep busy. I was like you I did not want to take the chance and wait, and had it right away. I am on Doxil and the side effects are pretty mild except I get tired easy. Linda we are all here together for one another and I am so happy for the sisterhood.

    Love and hugs from Oregon
  • geology
    geology Member Posts: 12
    #12
    so sorry
    Linda I have not posted much but have been following the posts. I am so sorry to hear of the recurrence, you will be in my thoughts and prayers. Stephanie
  • barb55
    barb55 Member Posts: 91
    #13
    linda
    I'm so sorry Linda this is lousy (wow that's an understatement). I just want to chime in and let you know you started this and you are going to continue leading this wonderful bunch of women through. But please lean on on us - we carry each other through and nobody gets the fear, anger, pain, blessings, laughter and joy better than we do. I am sending you my love and visualizing you protected with a white gold light-it's the same one I keep around me to help me through. Barb
  • culka
    culka Member Posts: 149 Member
    #14
    fuzzytrouble said:

    So sorry Linda
    I was so hoping for better news from you today, and I know what you went through after the news. I was crying so hard after I left the doc's it took me 45 minutes to start my car. That was the first bad news, the second one I had my husband with me and that was the worse news ever. I will be joining you with the chemo treatments so we and the rest of our sisters can cry together. This was the first time I wanted a pill to take the pain away (mental pain) and I still haven't gotten the word if they are going to give me anything yet.
    I do good for the weeks after the treatments but as soon as it's time to go I get so depressed a few days before hand. I keep telling myself it's a chronic disease and I need to deal with it and just go on, some days it works and other times not so good. I am getting better each week knowing that this treatment just might keep it in check, so now that's the same as you. I have to have 2 more treatments before my next scan. The waiting game is the hardest so I just try to keep busy. I was like you I did not want to take the chance and wait, and had it right away. I am on Doxil and the side effects are pretty mild except I get tired easy. Linda we are all here together for one another and I am so happy for the sisterhood.

    Love and hugs from Oregon

    All of us will be fine and you too
    I agree with Patricia (must be that Slavic blood), it`s happening too fast, can`t be true. For last three days I was listening Gerson`s tapes. I am not pushing anybody, but if Linda did everything what she was told by white coats, it is time to start something else.

    At the beginning of my journey I found web Doctor Yourself, don`t ask me how, I don`t remember. But I keep coming back there and finding my peace. This is one article
    http://www.doctoryourself.com/terminal.html and this part I love:

    The only thing good about yesterday's obituary column is that you weren't in it, and the proof is that you are reading this today.

    Cancer battle need cold head and worm feet, so good luck on Monday or don`t be afraid to postpone the treatment.
  • Unknown
    Unknown
    #15
    barb55 said:

    linda
    I'm so sorry Linda this is lousy (wow that's an understatement). I just want to chime in and let you know you started this and you are going to continue leading this wonderful bunch of women through. But please lean on on us - we carry each other through and nobody gets the fear, anger, pain, blessings, laughter and joy better than we do. I am sending you my love and visualizing you protected with a white gold light-it's the same one I keep around me to help me through. Barb

    This comment has been removed by the Moderator
  • cookie1948
    cookie1948 Member Posts: 77
    #16
    Linda so sorry
    Linda,
    I am so sorry for the results of your pet scan. I really thought it was not going to turn out like this at all. I hear the pain of your loved ones finding out this news also.
    I am thinking good thoughts for you and I wish u luck next week. Please know that hugs go out to you. I am glad this was caught early, but I so wish this would not have happened to you. Keep your strength and hope. , and thanks for being there for everyone here.
    Cookie
  • livenow09
    livenow09 Member Posts: 60
    #17
    best of luck
    Aloha Linda as before you will find the strength to follow through with treatment...you have too much living remaining...so much love to give and receive

    my heart is broken; I share your dread and also your hope

    Marie
  • Gunhild
    Gunhild Member Posts: 36
    #18
    So Sorry
    I, like all the others, am sorry to hear your "crappy" news. I wish I had some words of wisdom or could wave a magic wand and make cancer go away. Unfortunately I don't have either one. Just know that there are a lot of people who care about you and will be thinking of you and offering whatever support they have while you once again go through treatment. We have all learned so much from you.

    Telling family is the toughest thing I can think of. It is especially hard with the grandchildren.

    Keep thinking positive - if you can - and know that there are a lot of hands holding you up.

    Chris (Gunhild)
  • lociee
    lociee Member Posts: 102
    #19
    livenow09 said:

    best of luck
    Aloha Linda as before you will find the strength to follow through with treatment...you have too much living remaining...so much love to give and receive

    my heart is broken; I share your dread and also your hope

    Marie

    Hey Linda
    Sorry to hear the bad news. Look at this as a little glitch in your journey. I've had cancer since
    2007 - somehow they keep me going. I'm sure with your resources and stamina you will
    gracefully keep moving forward.
    Sending warm wishes, Mia
    '
  • kansasgal
    kansasgal Member Posts: 122 Member
    #20
    What a blow – I’m so sorry
    Dear Linda -

    What a blow – I’m so sorry that your suspicion has been confirmed. I was very much hoping for (make that counting on) a different diagnosis. Even when we think we are emotionally prepared, we find we are not. This recurrence is so hard for all of us because you are “our Linda” who helps us all with her wisdom, humor, and love. I’m glad you have a treatment plan in place. You know we are all here to support your decisions and encourage you to persevere along your chosen path, even those of us who have never formally joined our group.

    Hugs from Sally
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #21
    Linda:
    I am sorry for your
    Linda:

    I am sorry for your diagnosis. I know of the agony of the waiting for results and watching your family. When your husband is irritated or cross about something, you right away feel that it is because of what is happening to you. Keeping an upper lip is sometimes very hard and really takes a toll. I want to just step outside and scream. But then we do what we always do. Chin up, get strong, get going, and don't stop.

    Yea it is crappy news. But you have so many wonderful people praying and listening to you.

    (((((HUGS TO YOU)))))

    Kathy

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