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Those of us with USPC...

Flufff's picture
Flufff
Posts: 59
Joined: Apr 2019

If any, how many recurrencea have you had? How far apart? And how what it treated?

I’m at the end of treatment of my first recurrences. I was only NED for 9 months :(

First I was treated with 6 x carboplatin and taxol with massive surgery in between. First recurrence was treated with 6 x carboplatin and doxil, due to neuropathy. 

I‘m already now, with one chemo left, worrying about next time this hideous disease will strike again... :/

Molly110
Posts: 152
Joined: Oct 2019

Fluff, it's great that you have just one more chemo to go. Neuropathy is such a *****. (That's what I'm doing awake this late.) I completed my chemo for USPC in January, so I cannot offer any information about recurrence. I just wanted to congratulate you on hanging in there for treatment.

Warm best wishes,

Molly

dgrdalton's picture
dgrdalton
Posts: 130
Joined: Jun 2017

It was about 18 from end of frontline treatment to official (biopsy) diagnosis of recurrence. Stage 1A, UPSC; surgery then 3 Taxol/ Carbo and 6 brachytherapy. For recurrence, 6 Taxol/Carbo ended 12/30/19. I really had expected several months of NED, but the chemo didn't knock it all out. Currently on Keytruda/Lenvima. Prayers that you will have a long NED this time.

tequila
Posts: 13
Joined: Apr 2013

I was gobsmacked when I was diagnosed with UPSC through a routine pap test in Sept. 2012 wih UPSC. My CA125 was 13.3 I had surgery immediately but was relucant to have chemotherapy ( won't go into detail why) so I didn't have it until the spring of 2013. After chemo ( 6 rounds of taxol/carboplatin)  my CA125 was 6.0. I got two years before the cancer came back.

I realized when I was diagnosed that UPSC was a very aggressive, highly recurrent cancer and I tried to learn everything I could about it. There  was a  UPSC 5 year Survival Blog that was helpful. The Cancer Society told me that KNOWLEDGE IS POWER and YOU ARE YOUR OWN BEST ADVOCATE. I knew I needed to be very proactive if I wanted to live. I decided to have a CA125 monthly.  When I was going through chemo in 2013 I realized that my family doctor was giving me more information on the CT scans & PET scans than my gyne oncologist. With all due respect to the the doctor who did my first surgery, I knew that he was not the right fit for me - I am BLACK ans WHITE so I changed gyne oncologists.  This was the best decision  I ever made.

When my CA125 rose to 14.1 in the summer of 2015 my gyne oncologist ordered a CT scan which really didn't show anything. He knew I wanted a PET scan and ordered one and as a result I had my 2nd. surgery in August 2015, followed by 6 rounds of carboplatin . My CA125 was then 7.5.

To this day I have never had a symptom or pain from cancer - for me it could be the silent killer - my gyne oncologist told me that for some people with UPSC by the time that they know the cancer is back it is too late for treatment.  The only way I know that I am no longer in remission is the CA125 or a CT/PET scan. I realize that the CA125 does not work for everyone but it really does for me.

A year and a half after the 2nd. surgery the cancer was back - nothing big enough to remove but I wanted chemotherapy before the nodules grew too large. I had two rounds of Caelyx, unsuccessful and( I got the foot and hand syndrome in the groin area - burned from the inside out) had to wait a few months until I healed and then had 6 Rounds of Cisplatin/Gemcitabine. This chemo shrunk the nodules but I never achieved the goal of remission. I took a break from chemo, went to Iceland on a vacation and 6 months later did 6 Rounds of Carboplatin. Again my CA125 shrunk but I never achieved my goal. I trook a break from chemo for 8 months,

In the fall of 2018 I asked my gyne oncologist if I could take dose dense taxol (one a week for 3 weeks then a week off) My CA125 was 643 when I started - after two rounds my CA125 was 9.5 - I did the 3rd, Round, then had a CT scan. I was in remission. Yes a year later the cancer rears its ugly head once again.

I just  completed 3 Rounds of dose dense taxol in April 2020 again  and although my CA125 is now normal the CT scan shows a soft tissue nodule that grew from 1 cm to 3 cm while I was going through the chemo. I am hoping to meet with a radiation oncologist this week to discuss the possibility of radiation before deciding on a treatment plan - including surgery.

Yes I choose to live but if you never had a symptom or pain from cancer - you would probably choose to go through chemo sooner than later too.

Yes Fluff, this is a very aggressive disease but always be proactive and remember we are all unique - hopefully the last treatment that you had maybe your last and you will be in remission forever. I am wishing you nothing but happiness and I pray for you.

 

 

zsazsa1
Posts: 510
Joined: Oct 2018

Tequila, that is an amazing and inspiring history.  You're incredible.

BluebirdOne's picture
BluebirdOne
Posts: 362
Joined: Jul 2018

Thanks for your very helpful and detailed information about your recurrences. We all gain knowledge when we tell our treatment stories. I am sorry you had to go through all of this but glad you shared your story. Also, may I ask what stage you were at dx? 

 

Denise

tequila
Posts: 13
Joined: Apr 2013

Thank you Denise - I spoke to the pathologist - he said it was 1/11 into the muscle of the uterus but had gone into the right fallopian tube.

BluebirdOne's picture
BluebirdOne
Posts: 362
Joined: Jul 2018

Congrats on being proactive and being able to advocate for yourself. All of us who are currently NED wrestle with being too pushy or not pushy enough. Your story us an inspiration on how to advocate for yourself. Thanks. And I am so happy you came back to tell us your story. 

Flufff's picture
Flufff
Posts: 59
Joined: Apr 2019

What a ride.... :O Thank you so much for your feedback. 2012... Eventhough it’s crazy what you have been through, you are still here. ;) 

I just had my last chemo yesterday. Then scan and result on may 29th. I’m already [content removed by CSN Support Team] myself just thinking about it...

Im having gastritis and my ca125 increased from 35 to 42 in 4 weeks.. But during that period, the gastritis entered my belly. And life. And it’s still there. And I know that gastritis is inflammation but is it enough inflammation to elevate my ca125?? I surely hope so. Chasing remission. 

Thisbia just so much more worse than the first time... Sometimes the dark thoughts get the beat of me and im

wonderin why I keep struggling. This [content removed by CSN Support Team] disease will just come back and come back and come back again. And now it’s proba because everything is just bollocks. Covid19. Lost my job. Hubbys job hanging by a thread. Cancer again. Finished treatment again. And now scan. Again. And hopefully enter the life of check-ups and the stress that gives. I’m not well due to chemo and I think that rubs of on my mood. For that, im sorry. It’s been crap weather here in Denmark today. So yes. Everything just sucks :-))) But tomorrow is a new day. And tomorrow I will post something utterly positive ;) Thats a promise :)

Flufff's picture
Flufff
Posts: 59
Joined: Apr 2019

for your feedback. ;) I know I haven’t been super active here, but that will change. :) Knowledge IS power...! :)

dgrdalton's picture
dgrdalton
Posts: 130
Joined: Jun 2017

I can identify with you in that CA-125 and PET scans have caught my recurrence and spread early. Yes, knowledge is power and we certainly need to be our own best advocate!

Prayers! 

Donna

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