Alexandra's update

Alexandra
Alexandra Member Posts: 1,308
edited August 2015 in Ovarian Cancer #1

I would like to apologize for the long silence and express my sincere gratitude to everyone who sent emails, PMs and good wishes. Sorry if I didn't reply right away.

I didn't want to be Debbie downer, so please consider this a semi-motivational post.

I have been in the second recurrence of high-grade ovarian cancer, originally diagnosed 3 years ago. After an easy year on the PARP-inhibitor trial I was very reluctant about more chemo and had my heart set on another clinical trial, that has been delayed. It took me 6 months of procrastinating and cancer spreading into stage 4 to finally agree to try single agent Carboplatin, only to find out after 1 round that I was allergic. 2 rounds of Cisplatin didn't work either and CA125 climbed to 2600 at which point palliative care doctor gave me 3 weeks to live and recommended hospice. Physically and emotionally I was drained, angry and ready to go.

In the last ditch attempt another doctor suggested Cisplatin / Taxol combo and I agreed. 1 round (on July 20th) did me in. I was vomiting non-stop for 2 weeks, couldn't eat or drink, lost 50 lbs, lost all electrolytes, all blood counts dropped to the floor. After several trips to ER by ambulance with paralysed hands and feet, BP drop to 50, suspected heart and kidney failure, gallons of IV fluids, black and blue arms (of course I never bothered with the port), multiple ascites draining and other lovely experiences, I'm happy to say that "the reports of my death have been greatly exaggerated". The date on the calendar I had marked with skull and crossbones has come and gone.

As of today my CA125 dropped to 1283, I eat, drink, walk straight, drive and look almost human (with the wig and a lot of makeup). New selfie was taken today.

I will probably switch to weekly Taxol or Doxil, that remains to be seen when blood counts stabilize.

Much love to old friends and newcomers. Stay strong and don't give up ladies!

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Comments

  • debrajo
    debrajo Member Posts: 1,095 Member
    #2
    Thank God!

    Girl, I was about to go all "Boris and Natasha"!on you  You scared the pooh ofut of me when you mentioned "Palltive Care"!  You look great especially from what all you have gone through!  You know, Ro10 had her numbers in the two to three thousand and she was with us over 8 years.  Take the meds, enjoy the weight loss, and keep lookinh for those trails.  You will win and do fine.  And next time don;t scare the crap out of me,  I just had the third open heart surgery so the old ticked can't stand too manu y more shocks!  Please take care keep on kicking tail!! Best, debra

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #3
    debrajo said:

    Thank God!

    Girl, I was about to go all "Boris and Natasha"!on you  You scared the pooh ofut of me when you mentioned "Palltive Care"!  You look great especially from what all you have gone through!  You know, Ro10 had her numbers in the two to three thousand and she was with us over 8 years.  Take the meds, enjoy the weight loss, and keep lookinh for those trails.  You will win and do fine.  And next time don;t scare the crap out of me,  I just had the third open heart surgery so the old ticked can't stand too manu y more shocks!  Please take care keep on kicking tail!! Best, debra

    What can I say

    I was so scared when you didn't answer my email.  You are always so prompt.  Thank goodness you switched docs.  You look beautiful Store bought hair is so great.  Keep fighting.  I know you are a tough cookie.

    i am writing from your side of the border- my first trip to Quebec City.  Beautiful.

    Take care.  You are needed.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    #4
    Alexandra, it is so wonderful

    Alexandra, it is so wonderful to hear your beautiful voice.  Ditto back to you, "Stay strong and don't give up!"

     

  • Mwee
    Mwee Member Posts: 1,338
    #5
    What a time you've been having

    your counts seem to have halved and I'm so glad you're feelino more human... There's nothing like the freedom of driving! Much love being sent your way! (((((((Hugs)))))).  

  • scatsm
    scatsm Member Posts: 296 Member
    #6
    what a relief

    to hear from you. I was fearing the worst but didnt want to bother you too much. Glad you are still in the fight!

    Don't disappear like that again!!

    Here's  to an easier time of it,

    xoxoSusan

  • zinaida
    zinaida Member Posts: 221
    #7

    Dear Sashenka! I'am happy, you are recover. It is your strength of willing to live help you ! I did same in december 2014. Lost 30lb.; drained once a week 5 liters of liquid  from abdomen ; total 4 times -20 liters. CA 125 jump from 357 to 8000. My doktor give me another chimo (carboplatin , third time in my 8 years of surviving ). It is did work for me again. CA 125 go down to 625 by april and then start to rise again. She put me an new treatment -  Olaparib (pill form). All most 3 month I'am on it. CA125 not moving. I hope it is start working. So it is more treatments available yet to help you survive. Do not lose hope, you can survive yet. Love, Zina.

  • Jue
    Jue Member Posts: 80
    #8
    So pleased to see your post I

    So pleased to see your post I was hoping you were ok , it's amazing what us tough gals can go through !  what a tough time you've had and I hope weekly taxol can get you stable and back to ned . i too have had  my first recurrence while being on Avastin for 9 months after finishing frontline chemo my numbers rose and a area of concern was seen on ct , I've just had second surgery to remove everything they could see including extensive scar tissue , no chemo just 3monthly checks I think , scary but I'm hoping for the olaparib /centrinib trial to come about at some point that's the one you were hoping for too Alexandra I think .I will post if I see it in the uk  , I wish you love best wishes and some Cancer free time . Jue x

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #9
    Jue said:

    So pleased to see your post I

    So pleased to see your post I was hoping you were ok , it's amazing what us tough gals can go through !  what a tough time you've had and I hope weekly taxol can get you stable and back to ned . i too have had  my first recurrence while being on Avastin for 9 months after finishing frontline chemo my numbers rose and a area of concern was seen on ct , I've just had second surgery to remove everything they could see including extensive scar tissue , no chemo just 3monthly checks I think , scary but I'm hoping for the olaparib /centrinib trial to come about at some point that's the one you were hoping for too Alexandra I think .I will post if I see it in the uk  , I wish you love best wishes and some Cancer free time . Jue x

    You Are Super Woman, Alexandra

    OMG you've been through the wringer and I'm so glad you're doing better now.  As a matter of fact, you look maavelous, darling!!

    Sending lots of good wishes and warm hugs,

    Kelly

  • JoWin615
    JoWin615 Member Posts: 150 Member
    #10
    Wow, Alexandra!

    Whew. I haven't checked in on this board in months, and I come back to this? I'm SO glad you stayed  strong, didn't give up and came back from death's door! Hope you continue to feel better each day.

    Cheers, Jo

  • mopar
    mopar Member Posts: 1,972 Member
    #11
    EVER THE OPTIMIST

    And rightfully so, Alexandra.  Thank you for the update, and for quelling everyone's fears.  Staying strong is all we can do, right?  Sure isn't easy, but you are the inspiration and 'glue' that we all need on a daily basis.  Some people say, 'one day at a time'.  I always say, 'one MOMENT at a time'.  And when so many moments have come and gone, and you can look book as see from whence you came, you can be that much stronger and move forward with confidence.  Sending lots of prayers and (((HUGS))) your way, Alexandra.  Look forward to seeing your sweet face again soon!

    Monika

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #12
    mopar said:

    EVER THE OPTIMIST

    And rightfully so, Alexandra.  Thank you for the update, and for quelling everyone's fears.  Staying strong is all we can do, right?  Sure isn't easy, but you are the inspiration and 'glue' that we all need on a daily basis.  Some people say, 'one day at a time'.  I always say, 'one MOMENT at a time'.  And when so many moments have come and gone, and you can look book as see from whence you came, you can be that much stronger and move forward with confidence.  Sending lots of prayers and (((HUGS))) your way, Alexandra.  Look forward to seeing your sweet face again soon!

    Monika

     

    Alexandra the Great

    I love you Alex. We will fight and prosper against the odds together. I'm thinking of you every day. We have a fortitude whose sum is greater than the parts. We could have each let go but we also have a drive to endure. They don't make them like us very often. Do they? Let's keep people talking.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #13
    Great to Hear!

    Alexandra:

    What a trooper!  You are very inspirational to everyone!   Thank you for the update.

    Stay strong, girl!

    Kathy

  • Hearty Pioneer
    Hearty Pioneer Member Posts: 158
    #14
    Fighter

    So happy to see your post. Glad you are fighting and winning. Blessings to you.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #15
    Hearty Pioneer said:

    Fighter

    So happy to see your post. Glad you are fighting and winning. Blessings to you.

    worried again

    .....but a week has gone by and Alex hasn't been around. It has me worried.

  • kikz
    kikz Member Posts: 1,345 Member
    #16
    I'm glad to hear your

    I'm glad to hear your encouraging  news.  I'm sorry I haven't kept up with this site since this is where I first found such support.  I hope you continues to do well.  

    Karen 

  • seatown
    seatown Member Posts: 261 Member
    #17
    Good for you

    Glad to hear you had the courage to keep looking for a way. I  took the other course & entered hospice today. 

    Thank you so much for all your help & inspiration over these many months. Best always.

  • kikz
    kikz Member Posts: 1,345 Member
    #18
    seatown said:

    Good for you

    Glad to hear you had the courage to keep looking for a way. I  took the other course & entered hospice today. 

    Thank you so much for all your help & inspiration over these many months. Best always.

    I wish you peace and comfort.

    I wish you peace and comfort.  

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #19
    seatown said:

    Good for you

    Glad to hear you had the courage to keep looking for a way. I  took the other course & entered hospice today. 

    Thank you so much for all your help & inspiration over these many months. Best always.

    Seatown

    You, too, have been an inspiration and I am sad you have come to this point.  My thoughts will be with you and your husband.

  • Alexandra
    Alexandra Member Posts: 1,308
    #20
    Another update

    I spent 4 weeks in the hospital tied to the TPN bag (IV nutrition), getting weekly chemo (Taxol) and blood transfusions. It was incredibly boring. Little by little I started to eat normal food again, blood counts and electrolyte levels stabilized, there is no longer evidence of bowel obstruction, so today I was discharged. Yay! So happy to be back home and not to be pushing IV pole around.

    Last week I fainted for some reason while having a smoke outside the hospital and hit the pavement with my face. Brain MRI came back negative, which means "no brain mets" and does not mean "no brain" no matter what my husband says. 

    Many thanks to those reading my updates and sending words of love and support. Many hugs right back at you.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,506 Member
    #21
    Alexandra said:

    Another update

    I spent 4 weeks in the hospital tied to the TPN bag (IV nutrition), getting weekly chemo (Taxol) and blood transfusions. It was incredibly boring. Little by little I started to eat normal food again, blood counts and electrolyte levels stabilized, there is no longer evidence of bowel obstruction, so today I was discharged. Yay! So happy to be back home and not to be pushing IV pole around.

    Last week I fainted for some reason while having a smoke outside the hospital and hit the pavement with my face. Brain MRI came back negative, which means "no brain mets" and does not mean "no brain" no matter what my husband says. 

    Many thanks to those reading my updates and sending words of love and support. Many hugs right back at you.

     

    Darlin', GOD BLESS YOU!  I am

    Darlin', GOD BLESS YOU!  I am so sorry to hear what you have had going on but damn it I LOVE YOUR SPIRIT! 

    Hugs, Alexandra! 

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