Counting the ways we count the days

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
From what point do/did you start counting your remission?

My doctor wrote in his notes at my 4th month of chemo that I had "no evidence of disease." Presumably because my CA125 was normal. By that reckoning, I am 18 months NED.

BUT....I started maintenance chemo immediately after completing my first line treatment. And since it's unusual to recur while on maintenance Taxol, I can only claim 6 months NED, if I start counting from the point of "completely off chemo drugs."

This matters to me, because I have read many, many times that 85% of us will achieve complete remission, following first line therapy. But of those 85 out of 100 women, all but 17 will have a recurrence, usually within 24 months. WITHIN 24 MONTHS OF WHAT????

If I'm still NED in February of 2012, I will probably breathe a little easier, but I will feel a LOT better - a hundred times better - if I get to welcome in 2013 without ever having suffered a recurrence. That seems like such a LONG way away. Almost an unattainable dream.

I just wish there was a true end in sight.....a point in time when we could all say, "It's over." I wonder how much time has to elapse, before we feel "safe?" Before every pain strikes fear in our hearts, and all the symptoms we never had, or never noticed the first time around, suddenly plague us with alarming frequency.

I'm so pissed. This crappy disease has changed my life forever. Even when I'm not "sick", I'm expecting to be sick again, at some point. Even while I'm so acutely conscious of being alive, I wonder if I'm actually dying. I hate it.

Carlene

Comments

  • Tethys41
    Tethys41 Member Posts: 1,376 Member
    2 Years
    It seems that everyone you talk to has a different take on when the two year mark actually occurs. A lot of people seem to start the clock at the end of chemo...which is vague if you've been on maintenance. I'm in the same boat; diagnosed in August 2009, finished first line chemo in February 2010, finsihed maintenance Avastin November 2010. Where is the 2 year mark?

    My gyn/onc was presenting the statistics to me, 75% of those who will have a first recurrance have it within the first year. Only an additional 15% of those who will have a first recurrance will have it between years one and two. Therefore, a mere 10% of those who have a first recurrance will have it after year two. Figuring that my chances are improved if I'm in the security of that beyond 2 years population, I asked my gyn/onc point blank when the clock starts. He flat out stated that it starts at the time of surgery.

    This was a new perspective to me, but he said it with such authority that I decided I'm going to go with that. Regardless of when you start counting, I don't think any of us are ever completely out of the woods. But for that matter neither is anyone who has never been previously diagnosed with cancer. The very best we can do is live in the moment and not fear the future.
  • kellyh33
    kellyh33 Member Posts: 287
    Dear Carlene,
    It sounds like you are having a bad day and you are certainly entitled to feel blue. I think waiting for the other shoe to drop is normal. Don't let this damn disease take away your usual upbeat attitude. You amaze each and everyone of us each and every day with your strength, courage and determination.
    I believe you are only of the ones that will beat this disease.
    Allow yourself to feel crappy today and tomorrow is a new day.
    Hugs,
    Kelly
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    It is so confusing !
    I asked my Dr the same thing if I start counting after my chemo which finished at the end of last November or after my Avastin treatment. She just smiled enigmatically and said 'you are still in treatment' so I don't know. It is confusing and I asked if I am in remission and she said yes so I asked if I could count the six months after chemo as being in remission and she said yes but I think only because she didn't want to tell me no.
    I am stressed too Carlene I want definite answers and I don't think there are any. But you will make it to welcome in 2013 in good health I truley believe that and I hope I am right there with you.
    Colleen
  • kayandok
    kayandok Member Posts: 1,202 Member
    Carlene,
    I can so relate to your frustration. But, please breath easy anyway!!!! It is good for your health. Worry is not. Bottom line, someone has to be the 17. MIght as well be you!!!!

    One doctor told me one time, "Kathleen your tendency to microscopically disect everything is what has kept you alive this long, but can also be a detriment for you to let go and enjoy the life you have left!" I wasn't sure if that was a compliment or rebuke. Maybe both.

    hugs,
    kathleen
  • kikz
    kikz Member Posts: 1,345 Member
    kayandok said:

    Carlene,
    I can so relate to your frustration. But, please breath easy anyway!!!! It is good for your health. Worry is not. Bottom line, someone has to be the 17. MIght as well be you!!!!

    One doctor told me one time, "Kathleen your tendency to microscopically disect everything is what has kept you alive this long, but can also be a detriment for you to let go and enjoy the life you have left!" I wasn't sure if that was a compliment or rebuke. Maybe both.

    hugs,
    kathleen

    On 11/03/2010 my surgeon told me I was in remission with NED. That is the date I am counting. Although I am going to ask on my next visit if I can count from an earlier date since my last chemo was 9/16/2010 and my CA 125 was 7. It's crazy how we fixated we become on dates and numbers. I am in a good place right now. I feel great (still have aches and pains) that in my mind I cannot imagine being sick again. I am trying to run with that thought. It can't hurt. If things change at some point, oh well, I'll have to put my tough shirt on again.

    Karen
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    straight talking
    Carlene...
    It's selfish of me I know, but I loved it that you were very honest about the way you felt the day you wrote this message. It must be a normal frustration of the disease that, even when you feel happy, you can't really rub what you are experiencing out of your mind. Sometimes, I forget I'm sick and really laugh so much it hurts! I'm so grateful that I have these episodes but then the thought of the treatment gets in the way of it all. I try to stay positive because it's a good way to live but I know that not to feel the way I do sometimes would make me feel that I was afraid to have normal feelings. It's a really good thing that you have NED and I'm really happy for you. I hope you're feeling much better.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Tethys41 said:

    2 Years
    It seems that everyone you talk to has a different take on when the two year mark actually occurs. A lot of people seem to start the clock at the end of chemo...which is vague if you've been on maintenance. I'm in the same boat; diagnosed in August 2009, finished first line chemo in February 2010, finsihed maintenance Avastin November 2010. Where is the 2 year mark?

    My gyn/onc was presenting the statistics to me, 75% of those who will have a first recurrance have it within the first year. Only an additional 15% of those who will have a first recurrance will have it between years one and two. Therefore, a mere 10% of those who have a first recurrance will have it after year two. Figuring that my chances are improved if I'm in the security of that beyond 2 years population, I asked my gyn/onc point blank when the clock starts. He flat out stated that it starts at the time of surgery.

    This was a new perspective to me, but he said it with such authority that I decided I'm going to go with that. Regardless of when you start counting, I don't think any of us are ever completely out of the woods. But for that matter neither is anyone who has never been previously diagnosed with cancer. The very best we can do is live in the moment and not fear the future.

    Our time line is almost the
    Our time line is almost the same. My surgery was 9/29/09, so I will be two years from surgery in just 3 months. Wow! Time sure flys when you feel like it's running out.

    Carlene
  • paris11
    paris11 Member Posts: 159
    Carlene, I'm with you...
    I am PISSED.

    Where is THE CURE!!!

    Millions of humans and their families are living with this scourge.

    Cancer has become a multi-billion dollar industry.

    WHERE IS THE CURE!!!

    Connie

    My Onc considers remission begins with the end of treatment.
  • mopar
    mopar Member Posts: 1,972 Member
    I WAS ALWAYS CONFUSED, TOO
    So sorry you're feeling so low, Carlene. It sure is the pits, isn't it? I so wish that tomorrow morning everyone would wake up as a new person, free of this horrible disease. The statistics are confusing and upsetting. And when I asked my oncologist when I would be considered in remission, he said 'after your last chemo'. So, surgery and chemo in 2000, last chemo was September of 2000. Had a recurrance in 2006, last chemo in August 2006. He also told me about the magic 'five-year mark', that the longer after 5 years remission the better chance it will not come back. Well, I reached the 5-year mark of surgery in February of this year, and will reach the five-year mark of end-of-chemo in August. So, we'll see.

    Again, these statistics are all over the place. I don't think anyone can give us anything that will make us feel better, or something truly concrete to hang on to. Wish I could take your blues away, Carlene. I'll give you some big hugs instead.

    (((HUGS)))
    Monika
  • Mwee
    Mwee Member Posts: 1,338
    Dear Carlene
    I know you're pissed, we're all pissed that this crappy disease has changed our lives forever. But, because I know you can take the straight talk, I'm going to say that there will never be a time when you feel completely "safe" from the beast. That's just not the type of personality that you were born with and that we all love so very much. You are a true warrior. If you're not fighting for yourself, you're battling for your teal sisters.

    I wish I had a magic wand, or better yet a time machine. I'd put us all back to a time when we didn't have worry about CA-125 counts or when we start counting the beginnings of NED.
    ((((HUGS)))) Maria
  • carolenk
    carolenk Member Posts: 907 Member
    Mwee said:

    Dear Carlene
    I know you're pissed, we're all pissed that this crappy disease has changed our lives forever. But, because I know you can take the straight talk, I'm going to say that there will never be a time when you feel completely "safe" from the beast. That's just not the type of personality that you were born with and that we all love so very much. You are a true warrior. If you're not fighting for yourself, you're battling for your teal sisters.

    I wish I had a magic wand, or better yet a time machine. I'd put us all back to a time when we didn't have worry about CA-125 counts or when we start counting the beginnings of NED.
    ((((HUGS)))) Maria

    Survivor worry
    Dear Carlene

    Just thought I would share with your what my osteopath had to say about the people who are "born worriers." He said, "The people who have worry all the time probably kept the entire human race going over the years." What do you think of that?!

    In your case, your anxiety prompts you to take action so I think that you are making the best of a bad situation. I hope you do get to sleep well at night.

    (((hugs)))

    Carolen
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    carolenk said:

    Survivor worry
    Dear Carlene

    Just thought I would share with your what my osteopath had to say about the people who are "born worriers." He said, "The people who have worry all the time probably kept the entire human race going over the years." What do you think of that?!

    In your case, your anxiety prompts you to take action so I think that you are making the best of a bad situation. I hope you do get to sleep well at night.

    (((hugs)))

    Carolen

    we all worry
    about this disease. How long will ned last, will next chemo work, etc. I think about our lost warriers and I get scared, then I come here and I feel better. You guys are my lifeline. No one really understands how we feel except here. I count being ned when my Dr. gives me the green light. Cafe woman I don't think Dr Baker would tell you what she thinks you want to hear, she is very straight foreword...lets enjoy how we feel and take it from there.....val
  • Tethys41
    Tethys41 Member Posts: 1,376 Member

    Our time line is almost the
    Our time line is almost the same. My surgery was 9/29/09, so I will be two years from surgery in just 3 months. Wow! Time sure flys when you feel like it's running out.

    Carlene

    Time does fly!
    Yes, we do seem to be following a similar schedule. Are you BRCA positive too?
  • susangr
    susangr Member Posts: 64
    My doctor at MDA considered
    My doctor at MDA considered me to be in remission after surgery for what it is worth. I count from surgery and from the end of last chemo. Susan
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    susangr said:

    My doctor at MDA considered
    My doctor at MDA considered me to be in remission after surgery for what it is worth. I count from surgery and from the end of last chemo. Susan

    I was definitely not in
    I was definitely not in remission for several months after surgery. My CA125 was 2200 after surgery, and 2400 the month after I started chemo.

    Carlene
  • vj1
    vj1 Member Posts: 150

    I was definitely not in
    I was definitely not in remission for several months after surgery. My CA125 was 2200 after surgery, and 2400 the month after I started chemo.

    Carlene

    Carlene
    You are our guiding light, so it's okay to take a break to change the lightbulb. I do believe it begins after surgery or when the killer attack takes place. I had surgery 6/09 and finished chemo on 11/09. All was still ned by every indication. So 2 yr mark is here or will be in Nov. Ca125 had been low, recent checkup it jumped to 24.4, catscan done---radiologist confused---sees something miniscule but not identified. Now PT scan is next. My onc won't let any stone unturned but has to play the "insurance game" as we all do. Being the optimist that I am, I feel the rise in Ca125 was a blessing and enabled me to have these other scans. If the beast is back it looks like it is an infant. Sometimes I wish I could see in there myself. It is so nerve wracking not knowing what is going on in Mystery land. For what is it worth make the best of each day. We could be worrying over these numbers and go out and be hit by a bus. Of course this would probably happen while we were preoccupied with the numbers.
    Hope you feel better by unloading, you are entitled to it.

    Verna
  • TeaLurker
    TeaLurker Member Posts: 15
    "Nerve-wracking" is cumulative, too
    They warn us about the cumulative effect of chemo and its by-products, but the cumulative toll that OVCA takes on our psyches is for us to discover, it seems.

    It also seems that the stats can eat away at any of us, depending on the day. I've only been at this for 7 and 1/2 months (but who's counting, heh), yet it bugs me deeply that I can't seem to find my way to remission. The stats make it sound as if I won't last a year, but I feel so well (compared to death, at least), that that creates complete cognitive dissonance for me.

    Anyway, here's my good(-ish) thought for today:
    If you flip a coin 99 times in a row, and 99 times it comes up heads, what are the odds that it will come up tails on the 100th time?

    50-50, the same as with every single toss.

    When all else fails, remember, "Lies, damn lies and statistics."
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    Tethys41 said:

    Time does fly!
    Yes, we do seem to be following a similar schedule. Are you BRCA positive too?

    No....I am BRCA negative,
    No....I am BRCA negative, both 1 and 2.

    Carlene

    PS....BRCA positive women have a statistically better chance of surviving with NO recurrence, ever. Lucky you!
  • Tethys41
    Tethys41 Member Posts: 1,376 Member

    No....I am BRCA negative,
    No....I am BRCA negative, both 1 and 2.

    Carlene

    PS....BRCA positive women have a statistically better chance of surviving with NO recurrence, ever. Lucky you!

    BRCA
    Yes, who would have ever thought I would feel lucky to have a genetic mutation that predisposes me to cancer?