Scan

ConnieSW · January 2015

Good luck on your scan tomorrow, Alexandra. I'll keep my fingers crossed

Alexandra · January 2015

Thank you very much Connie!

scatsm · January 2015

thinking of you

and hoping the results are nil......let us know!

xoxo Susan

poopergirl14052 · January 2015

scatsm said:
thinking of you
and hoping the results are nil......let us know!

xoxo Susan

Love the cat scan

lol. Hope you are NED....stay strong....Val

lovesanimals · January 2015

poopergirl14052 said:
Love the cat scan
lol. Hope you are NED....stay strong....Val

Hi Alexandra

By now you've had your scan. Keep us posted! I just love the kitty scan.

Hugs,

Kelly

Alexandra · January 2015

Scan results

Not great news: interval progression of peritonel disease, a net of tumors covering liver, bladder, descending colon, built themselves a few nests in peritoneum and omentum. Quantity of ascites increased. CA125 = 337 (from 141 - 4 weeks ago).

My ONC in no uncertain terms tried to get through my thick skull that if I don't consent to chemo now, I might not need my summer tires. Contrary to his advice, I refused chemo yet again, decided to take my chances, and wait for Olaparib / Cediranib combo trial, that is expected to start in 2 months and is rumored to enrol patients previously treated by other PARP inhibitors. I will remain on Rucaparib trial for now, though it is obvious that the drug has stopped working; they will remove me from the trial once symptoms start (in a month? a few weeks?).

It is my personal choice, I understand the risks and accept the consequences. Please don't interpret this as anti-chemo propaganda. Many of us choose to live through short- and long-terms side effects and owe our lives to salvage chemo.

lovesanimals · January 2015

Alexandra said:
Scan results
Not great news: interval progression of peritonel disease, a net of tumors covering liver, bladder, descending colon, built themselves a few nests in peritoneum and omentum. Quantity of ascites increased. CA125 = 337 (from 141 - 4 weeks ago).

My ONC in no uncertain terms tried to get through my thick skull that if I don't consent to chemo now, I might not need my summer tires. Contrary to his advice, I refused chemo yet again, decided to take my chances, and wait for Olaparib / Cediranib combo trial, that is expected to start in 2 months and is rumored to enrol patients previously treated by other PARP inhibitors. I will remain on Rucaparib trial for now, though it is obvious that the drug has stopped working; they will remove me from the trial once symptoms start (in a month? a few weeks?).

It is my personal choice, I understand the risks and accept the consequences. Please don't interpret this as anti-chemo propaganda. Many of us choose to live through short- and long-terms side effects and owe our lives to salvage chemo.

Crap

My heart dropped when I read your message. I'm so sorry that your news was not good, Alexandra. I totally understand and respect the fact that only you and you alone get to make the decisions related to your body and health. And I know that you never make a decision blindly. To say that you do your research is an understatement. Of course that's not going to stop me from being worried for you. Sending loads of prayers your way that you get on the Olaparib/Cediranib combo trial soon!

Love and hugs,

Kelly

ConnieSW · January 2015

lovesanimals said:
Crap
My heart dropped when I read your message. I'm so sorry that your news was not good, Alexandra. I totally understand and respect the fact that only you and you alone get to make the decisions related to your body and health. And I know that you never make a decision blindly. To say that you do your research is an understatement. Of course that's not going to stop me from being worried for you. Sending loads of prayers your way that you get on the Olaparib/Cediranib combo trial soon!

Love and hugs,

Kelly

Expletive, expletive, expletive

When a week went by since the scan and we didn't hear from you, I was afraid the news wasn't good. Kelly has expressed exactly what I feel and want to say. In addition, I am just so furious. You are so young and I want you to have years and years more. I am going to put my faith in this new trial.

Alexandra · January 2015

Alexandra said:
Scan results
Not great news: interval progression of peritonel disease, a net of tumors covering liver, bladder, descending colon, built themselves a few nests in peritoneum and omentum. Quantity of ascites increased. CA125 = 337 (from 141 - 4 weeks ago).

My ONC in no uncertain terms tried to get through my thick skull that if I don't consent to chemo now, I might not need my summer tires. Contrary to his advice, I refused chemo yet again, decided to take my chances, and wait for Olaparib / Cediranib combo trial, that is expected to start in 2 months and is rumored to enrol patients previously treated by other PARP inhibitors. I will remain on Rucaparib trial for now, though it is obvious that the drug has stopped working; they will remove me from the trial once symptoms start (in a month? a few weeks?).

It is my personal choice, I understand the risks and accept the consequences. Please don't interpret this as anti-chemo propaganda. Many of us choose to live through short- and long-terms side effects and owe our lives to salvage chemo.

Thank you!

Kelly, Connie, Val, Susan, Jo, Kathy, Lisha, Karen, No Time for Cancer, Shawnna, Jue, Lisa, zenmama, Hearty Pioneer, pandagypsy - thank you for all the support and kind words. Sorry, if I missed someone's name. I feel closer to you than to my actual family.

wholfmeister · January 2015

Alexandra said:
Scan results
Not great news: interval progression of peritonel disease, a net of tumors covering liver, bladder, descending colon, built themselves a few nests in peritoneum and omentum. Quantity of ascites increased. CA125 = 337 (from 141 - 4 weeks ago).

My ONC in no uncertain terms tried to get through my thick skull that if I don't consent to chemo now, I might not need my summer tires. Contrary to his advice, I refused chemo yet again, decided to take my chances, and wait for Olaparib / Cediranib combo trial, that is expected to start in 2 months and is rumored to enrol patients previously treated by other PARP inhibitors. I will remain on Rucaparib trial for now, though it is obvious that the drug has stopped working; they will remove me from the trial once symptoms start (in a month? a few weeks?).

It is my personal choice, I understand the risks and accept the consequences. Please don't interpret this as anti-chemo propaganda. Many of us choose to live through short- and long-terms side effects and owe our lives to salvage chemo.

Crap.

This is't what any of us wanted for you. I certainly had the highest hopes, but based on what you reported previously, we all were concerned.

I have to trust you know what you are doing. I just pray the new trial starts ASAP and accepts you. You are a fighter, you are very strong in mind, spirit and body, so hopefully you will experience no symptoms for a long, long time.

We love you! Live well.

Kaleena · January 2015

Alexandra said:
Scan results
Not great news: interval progression of peritonel disease, a net of tumors covering liver, bladder, descending colon, built themselves a few nests in peritoneum and omentum. Quantity of ascites increased. CA125 = 337 (from 141 - 4 weeks ago).

My ONC in no uncertain terms tried to get through my thick skull that if I don't consent to chemo now, I might not need my summer tires. Contrary to his advice, I refused chemo yet again, decided to take my chances, and wait for Olaparib / Cediranib combo trial, that is expected to start in 2 months and is rumored to enrol patients previously treated by other PARP inhibitors. I will remain on Rucaparib trial for now, though it is obvious that the drug has stopped working; they will remove me from the trial once symptoms start (in a month? a few weeks?).

It is my personal choice, I understand the risks and accept the consequences. Please don't interpret this as anti-chemo propaganda. Many of us choose to live through short- and long-terms side effects and owe our lives to salvage chemo.

Ugh!

Gee Alexandra,

I was sure hoping you got a break. Hey girl, I totally understand your choice. You have tried it all and if you want to wait for the trial then you do it. Really, is there a right or wrong answer? Whatever you decide it will and is your choice. Just know I will be sending you hugs and positive thoughts your way.

My best to you.

Kathy

wife2elliot · January 2015

Alexandra said:
Thank you!
Kelly, Connie, Val, Susan, Jo, Kathy, Lisha, Karen, No Time for Cancer, Shawnna, Jue, Lisa, zenmama, Hearty Pioneer, pandagypsy - thank you for all the support and kind words. Sorry, if I missed someone's name. I feel closer to you than to my actual family.

Praying

Alexandra,

I am praying for you and admire all the research you do! You are a very well informed lady and only you can make health choices that you feel are best for you.

Hugs,

Lynne

Jue · January 2015

Alexandra said:
Scan results
Not great news: interval progression of peritonel disease, a net of tumors covering liver, bladder, descending colon, built themselves a few nests in peritoneum and omentum. Quantity of ascites increased. CA125 = 337 (from 141 - 4 weeks ago).

My ONC in no uncertain terms tried to get through my thick skull that if I don't consent to chemo now, I might not need my summer tires. Contrary to his advice, I refused chemo yet again, decided to take my chances, and wait for Olaparib / Cediranib combo trial, that is expected to start in 2 months and is rumored to enrol patients previously treated by other PARP inhibitors. I will remain on Rucaparib trial for now, though it is obvious that the drug has stopped working; they will remove me from the trial once symptoms start (in a month? a few weeks?).

It is my personal choice, I understand the risks and accept the consequences. Please don't interpret this as anti-chemo propaganda. Many of us choose to live through short- and long-terms side effects and owe our lives to salvage chemo.

I hate what this disease does

I hate what this disease does to all of us , I've just read your note and am angry why is it always the people who don't deserve the crap in life that get it , I understand you not wanting chemo I never felt like me when I was on it and I wanted to feel like me despite the cancer. I know the trial you want is coming up here in the uk too soon because of the excellent results of an adverage 17 months Progression free survival . Im wishing you well Alexandra and hoping you get on it as soon as it's released if all else fails chemo on and get back to ned . Jue x

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