Starting chemo Sept 05

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  • sholroyd
    sholroyd Member Posts: 288
    edited March 2010

    In memory of Nicole, we will NOT be defeated.

    Susan, that is a good expression "crushed" - about sums it up.

    Yes, Peg, I would be interested in an address please. 

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  • Calico
    Calico Member Posts: 1,108
    edited March 2010

    How very very sad.

    My deepest condolences to her family and friends, and to all of us.

    I will light a candle now.

    Peg, please pm me the address.

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  • txred9876
    txred9876 Member Posts: 392
    edited March 2010

    So sorry to hear about nicole and yes crushed just about sums it up.....if there is words to actually represent my feelings right about now....

     tina

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  • sholroyd
    sholroyd Member Posts: 288
    edited March 2010

    XXXXXXXXXXXXXXXXXXXXXXXXXXXX

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  • Calico
    Calico Member Posts: 1,108
    edited April 2010

    Hi girls,

    checking in, how is everybody doing these days?

    Thinking of you and wishing you a Happy Easter and a Happy Passover.

    Spring is finally here, DD is starting the final weeks of High School.

    Hope all is well.

    Hugs!!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2010

    _gentle bump_

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2010

    Stunned.

    I am just reeling, and I need to write/vent/share with somebody. And my dear friends, you are that somebody. Had my "6 month" checkup today with my oncologist. Has actually been closer to 8 months since he recently had some surgery and my appointment was delayed. As usual, I went into the hospital last week for a bone density test and to draw blood.

    Not as usual, I didn't go online and check my numbers until this morning. OMG! My ca25.27 is up to 107! This means in the past 11 months, I have gone from 38 all the way up to 107.

    Of course, the traffic was awful. The drivers in the garage were nuts. The elevators were slow. And I was actually late to my appointment. [Another woman was delighted. She showed up to her appointment a week early and was able to slip in!]

    Dr. Roger and his PA, Lauren, went through how I have been feeling. I was told to be comprehensive in my description. To be honest, for the past three months, I haven't been feeling that great. Food tastes odd. Loss of appetite [ME? Loss of appetite.] Strange liver pains that increase when I lie down. Blah blah.

    "This is all so capricious" he said. You know that this is an indication of tumor activity. He said lots more, with the caveat, "but of course we never know."

    So now, I am waiting for the call to schedule an MRI, CT scan, ultrasounds and bone scans. The full monty. I am guessing this will all take about 2 weeks to sort out, but it doesn't feel good to not know.

    I will not tell anyone besides my husband that I am in cancer-limbo. Certainly, no posts on Facebook or Twitter. But I needed a place to put my fear. And this thread is simply the safest place. Good wishes please.... this is feeling kind of real. 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2010

    I know I am talking in an empty room, but more venting needs to be done. The blood marker retest is back, and my damn number went up another 11points in a week!

    PET and MRI scans are in two weeks, but the bone scan needs to wait for three weeks. They get their isotopes from a nuclear facility that is going off-line for maintenance. And so I have to wait!

    Trying to live near the river De-Nile. Thank goodness I have a ton of work right now. No time to live in my head. 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited April 2010

    One more update. Phone rang this morning. I guess going up 11 points in one week moves me up the food chain. Bone scan has been moved to Tuesday morning. They called me a "triage" patient. Can I say for the record that I never really wanted to be a "triage" patient?

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  • Pegk
    Pegk Member Posts: 389
    edited April 2010

    Susan!

    Just stopped in .... news I don't want to hear!

    Don't forget, you're a fighter! My thoughts and prayers are with you! 

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  • txred9876
    txred9876 Member Posts: 392
    edited April 2010

    Susan,

     you are in our throughts and prayers....have you heard anything yet?

    tina

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  • Calico
    Calico Member Posts: 1,108
    edited May 2010

    Susan,

    I just saw your posts. I am praying real hard!!

    Hopefully you find out out soonest what's going on.

    Hugs and good vibes!!!!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited May 2010

    I am officially Stage IV.

    Minimal for now, but I am entering this small club, reluctantly. I currently have mets in my lymph nodes and chest cavity. Waiting to schedule an appointment with my Onc to discuss the treatment options.

    I knew this was coming, and for the moment, feel totally deadened with a touch of sadness thrown in.

    At least I know that I did everything that the medical community can throw at breast cancer. This isn't a result of anything but bad luck.

    Please note: I am not telling anyone about this. My diagnosis gives me years of life and I can not afford to have my professional career railroaded again. So, I will not be posting about this on Facebook. Please respect my need for secrecy.

    All the best to my September Sisters....  *susan* 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited May 2010

    Testing.

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  • Calico
    Calico Member Posts: 1,108
    edited May 2010

    I just lost my post, I think I clicked 'preview' instead of 'sent'...

     [[[Susan]]]

    we are here for you. I cannot imagine how you feel.....'minimal' is good!!

    When is your next appointment?

    Hugs and prayers are coming you way!!!

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  • txred9876
    txred9876 Member Posts: 392
    edited May 2010

    Susan,

     I am so sorry to hear of this development ..... You will be in my thoughts and prayers (just as you all are...)

    Tina

     PS I went back out on Social security disability due to increase pain levels (from the neuropathy caused by the taxol). 

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  • Liezel
    Liezel Member Posts: 192
    edited May 2010

    Oh Susan....  It might just be minimal, but I am devastated.  I understand your need for privacy so will check in here more often to hear from you.  Do you know what tx you'll be having yet?  Stay strong, thinking of you and sending healing vibes across the Atlantic....

     This sucks!!!!  Happy Mother's Day for Sunday everybody!

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited May 2010

    And we are off...... [I am cutting pasting here from my other posting. It will get you up-to-date.]

    For the past few nights I have had a really weird, yet surreal dream. There is a stage with three curtains. The stage is straight out of "Name that Price" or whatever that old show was called. The curtains have way too many pleats and there are spotlights swirling around lighting the space.

    An excited voice says "And behind door No 1 is surgery. We will remove your breast and you will take months to recover. Or we have Door No 2. Chemo that will make you bald and sick again. And finally, Door No 3, you will get a new aromatese inhibitor." The voice sounds excited, like I am winning a trip to Tuscany, or a week in Paris. In my dream, my mind is a running commentary, trying to analyze the options as they are presented. A Vanna White wanna-be is in a gold lamé dress, her arms gracefully pointing to each curtain as the choices are announced.

    Today I met with my Oncologist, Dr. Roger, to review my scan results and talk about the treatment options. Today's meeting included no gold lamé I am happy to say. Just two white coats, my husband and myself. Dr. Roger was clearly relieved that there were no bone mets. [If there had been he was planning some really heavy guns! An interesting aside.]

    He sees mets along the chest wall [where my original tumor was attached] going vertically, and one on the outside of the lung [not a lung met.] He confirmed what I had heard during my conversation with the PA. Minimal. He then began to draw pictures. [Dr. Roger likes to draw pictures, but they are really not very good.] He explained that the estrogen expression is actually two distinct expressions [alpha and beta, scientists are sooooo boring.] The aromasin blocks one of them while the other expression, which is rarer, is left alone. Surprisingly, Dr. Roger is continuing the aromasin, but adding Faslodex to block the second expression.

    Since my blood markers have been an accurate look into my progression, we will start testing these monthly, at the same time as my injection. I will see Dr. Roger again in two months, unless next month's markers continue the rise.

    I was then taken to the chemo infusion room. My former chemo nurse, Nurse Judy, gave me the Faslodex injection in the same chair that used to be my A/C spot. Damn what a large needle! I counted to 63 seconds, but it is possible I was counting really fast. There is no dignity to cancer.

    The irony is, the awful pain I have been experiencing, the pain that started the search is completely unrelated to my progression. Instead I have to have my gallbladder removed!

    Now that I know the plan, I have lots of questions/thoughts, but that will be a different post. 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited May 2010

    Thank you all for your concern. I too am devastated and still sorting through my wildly swinging emotions. Yes, I am devastated, but, then again, I think, years and years, and then I am back on the floor. I will find my equilibrium soon enough I hope.

    *susan* 

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  • Calico
    Calico Member Posts: 1,108
    edited May 2010

    [[[Susan]]]

    the dream reflects choices....the load of them...the load we bear making them....right or wrong....goooleeeee.

    Here is to cancer kicking drugs!!!!

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  • Pegk
    Pegk Member Posts: 389
    edited May 2010

    Thinking of you, Susan.

    .....and also the rest of you.

    Coming up on the 5 year anniversary of my diagnosis. I had my mammogram of my right breast last week and was called back for a 2nd look.  Despite trepidation, all clear . Onc appt. this week.

    Have a good weekend.  

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  • Calico
    Calico Member Posts: 1,108
    edited May 2010

    Hi girls,

    5 yr mammoversary here too.....a milestone.

    DD got her high school diploma, bitter sweet, I was out of treatment and hair coming in when I registered her, thinking I never see this day...so happy and proud, after all of her own health problems she graduated cum laude :)

    Peggy,

    that must have been scary! Saying prayers for you for all clear on your onc visit!!

    Susan,

    hope you are 'hanging tough'! Thinking about you and praying as well, how are things going?

    Hope everyone is doing well!!

    Check in sisters ;)

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited May 2010

    It is really weird how little this progression has changed anything. It has changed me; it has changed my outlook, but I am not suddenly less-well and life just continues. I had a few faslodex side effects, maybe. I can't tell if this new amount of fatigue is my body's way of dealing with the stress and sadness, or the faslodex. 

    Telling my daughter was hard. She understood in waves what I was saying. As I finished she said "So this will never go away?" and just sobbed. But, I have decided that I am not telling my Mother, sisters, and family beyond husband and daughter until I am on a treatment plan that forces me to. It hasn't been easy to omit such a large piece of news from my conversations with them. I still think that this is the best plan for now.

    The gallbladder procedure was totally bogus. Wrong procedure for what ails me! By the time this became clear, the IV was in my veins and the drugs were flowing. Clearly, I will need to make sure that this never happens again. I will need to see a surgeon now, but I am not rushing.

    Next faslodex shot is next week. Will get my blood markers done then too, but it will be too early to tell if this new drug in the cocktail is having any effect.

    Today, I am 'running away from home'... going to visit a good friend who has moved to the Cape. A few days by the ocean before the season hits with someone that I love to laugh with. Really looking forward to this small break.

    *susan* 

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  • Liezel
    Liezel Member Posts: 192
    edited May 2010

    Hi Everybody!

     Hope you are all well.  I am well.  Baby growing nicely, it is another boy! 

    Peg, how scary for you.  Hope onc appointment goes well.

    Calico, congrats on your daughter.  It is amazing to look back isn't it.....

    Susan, enjoy your trip.  Hope the time out gives you some much needed rest.  Think of you all the time.....

    I am seeing my onc on the 4th June.  Even though I am feeling great I can't help the little bit of apprehension.  I have been waiting for the 5yr mark so desperately, and in a way I can't believe where I am today, compared to 5 years ago.  I am proud of myself and positive about the future, but my heart is so sore for Nicole, Leanne and Susan.  Somehow the victory is not nearly as rewarding with other members on the team lost or still battling this thing. 

    Love to all of you!

     Liezel

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  • Calico
    Calico Member Posts: 1,108
    edited May 2010

    Hey girls,

    Susan,

    the gallbladder pain was pain from the mets?

    So glad the side effects are okay to deal with....can't imagine to tell a daughter.

    Stress makes you tired too I imagine. Hope you can have fun on your visit.

    Liezel,

    thank you. How far along are you now? Hope all goes well!

    I thought Leanne had a recurrance, not mets??

    Peg,

    thinking about you!

    Hope everybody else is well and checks in from time to time.

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2010

    Second faslodex injection is this morning. I will also have blood drawn to see what those tumor markers are doing.

    Have an appointment with a GI surgeon on Tuesday but am proceeding with caution on this one. Haven't had a gallbladder attack for about 6 weeks now, so it feels less urgent. But history has shown that it will come back, and then be a problem for a while. I would like a doctor to actually tell me what is going on!

    Took a three day vacation on the Cape and had a marvelous time. Will return again but not until the "season" is over. Cape Cod in the summer is just too hot and crowded for me!

    All the best,

    *susan* 

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  • Calico
    Calico Member Posts: 1,108
    edited June 2010

    Hiya girls,

    Susan,

    sending you positive vibes and prayers for the blood draw today as well as for the GI visit!

    Glad you had a good time on the Cape!! ;) Nothing like some sand, sun and water, birds and all....

    Peggy,

    how are you doing? How did the onc visit go?? Hope all is well!

    I am heading to the endocrinologist next week to check on my Estrogen, still thinking it was a false 'high' lab error...will retake before I go!

    Maybe I was implanted ovaries by accident instead of taking the cyst/ovarian remnant out last year...that would be funny....not...just kidding, I don't even think anything like that is possible but the gyn's office sent me a letter that they haven't seen me since 07 lol

    I start to dislike doctors and question everything above and beyond....

    Hope all our MIA's are okay....please check in ladies, would love to hear from you!

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  • Calico
    Calico Member Posts: 1,108
    edited June 2010

    Hi girls,

    gentle bump,

    how is everybody???

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited June 2010

    I am still hanging in there. Well, actually, I am fine physically. Next week will be my next blood marker check and appointment with the onc.

    Mentally, still trying to find my balance. Or maybe there is no balance once you progress.

    Boston is really hot right now which I am NOT enjoying. Compounds the fatigue. We did put the A/C into the bedroom window so we can get some sleep.

    So.... there ya' have it. Hope others are doing well.

    *susan* 

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  • Calico
    Calico Member Posts: 1,108
    edited June 2010

    Hey Susan,

    glad you checked in :)

    Are you getting any more scans?

    Hugs!!

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