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So... I checked my portal...

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

And the bloody beast is back. :( Iys in my abdominal wall/muscles, and there is a bit of both peritoneal carcinomatosis and a small amount of asctis... CA125 was 32 4 months ago. Now it's 600 :O 

Firwt though was... I'm gonna die. That peritoneal carcinomatosis is not so good though. Right? That part killed you in the old days. So I've read. When I read the report, it seems like it's not a lot. And it seems to be located in my pelvic area only. 

Anyone had this too? 

I'm not giving up though. But honestly....

Dx September 2018. Finished treatment end February 2019. Recurrence end November 2019. Finished treatment mid may 2020. And here I am. 4 months later with recurrencE number 2... in less than 2 years. USPC is just super lovely. Can you even survive that crap shitty disease?? :(

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1772
Joined: Jun 2015

Oh Fluff, so sorry to see this! While I have no answers to your questions,  wanted to send you support and cyber hugs. 

When will you see your oncologist? I hope it is very soon so that you can get answers and a plan of attack. I'm hopeful you will feel better with a plan.

Please come back and let us know what is next. We will be here for you every step of the way.

Love and Hugs,

Cindi

 

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

The biggest fear is always to hear: sorry we can't do more for you. Im

scared that this is what I will hear. I haven't read of that many with this kind of recurrencea. Tomorrow I will know and I will let you all know. 

Thanks for the hugs Cindi :)

 

 

 

 

Forherself's picture
Forherself
Posts: 531
Joined: Jan 2019

NOt what we wanted to hear.  We are all pulling for you.  I can't give you advice because every case is different.  I hope. you have a good realtionship with your doctors.  You seem to still feel pretty good.  Is your CA 125 reliable?  I have a hard time trusitng them.  And I hope they have other suggestions for you since you are otherwise healthy.   Love and hugs to you.

BluebirdOne's picture
BluebirdOne
Posts: 395
Joined: Jul 2018

Hopefully, your doctors will have something for you. I am thinking of you and glad you came back to let us know your status. We are here for you. 

xxoo

Denise

ConnieSW
Posts: 1551
Joined: Jun 2012

i Keep typing and erasing stuff.  They better have a good plan when you go in tomorrow.  i will come with you in spirit. 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I reoccurred 8 months after my last radiation treatment though I don't have USPC I successfully kept it bay for 3 years on Megace. They are using it with tamoxifen now. It stopped working in February this year and now on immunotherap. Message me if you have questions. 

els19
Posts: 102
Joined: Jun 2014

I know you're upset. Two weeks ago I discovered my cancer had reoccurred. I too have UPSC. Mine was stage 3c. I finished chemo 6 years ago in September and had been NED since then. I was extremely lucky and pretty shell shocked because I had finally quit thinking about cancer. I had chemo today. But first I spoke with my oncologist. He told me all the things they do and that people do recover from reoccurrences. And they're learning new ways to treat these frequent reoccurrences that give patients more time between treatments. I used to read these boards six years ago and always checked back in occasionally to see how people were doing. There were and are women who survived reoccurrences and did well. They just don't check in often because at some point you have to mentally move away from cancer. But they are out there. So, there is hope. I was actually surprised at all the things my oncologist and his team were doing on my behalf as soon as they got the news my cancer was back. Since chemo worked so well for me last time he's hoping it will again and give me a good about of time again. But he said it most likely will reoccur again. And he's already working on how to treat that step. We have a chronic disease that will need treatment on and off like many other chronic diseases. Sending you a virtual giant hug filled with only positive thoughts! 

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

I'm so sorry it's back. I also have UPSC and remember my oncologist/gynecologist saying when I asked about radiation - we'll use that WHEN it comes back (not IF, but WHEN). Even though it will be five years this month since my surgery, I don't think I will ever feel safe. 

There are so many new treatments available I'm sure your doctor will find something that will work. And as others have said, this disease is being treated more as a chronic disease instead of a death sentence.

Love,

Eldri

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

Fluff, please let us know how the visit goes and what they have to say.  Hugs dear one.

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

You already are a survivor - you've been 100% successful surviving cancer since the first day you were diagnosed. Be encouraged - there are still lots of weapons in the arsenal.  I sure do know you must be frustrated and tired and scared - we are here for you.

Forherself's picture
Forherself
Posts: 531
Joined: Jan 2019

I am thinking about you  and what your doctor said.  I am hoping he had some options for you.

Flufff's picture
Flufff
Posts: 68
Joined: Apr 2019

That is my options right now. So I decided to go for the topotecan first, as loosing my hair all over again, isn't so appealing;)

Mentally? Well. It sucks a bit to be honest. Recurrence after just 4 months. I've been having some

thoughts that I'm not gonna make it. I'm begining to think like, if I live long enough for Christmas. Will I live to see my 50th birthday in may next year. Im beginning to doubt that I can beat this beast called USPC. :( 

Ive done my first chemo. It was okay. Was a bit tired, that's all. 

Have any of you any experience with weekly topotecan?

Armywife's picture
Armywife
Posts: 452
Joined: Feb 2018

You have a 100% success rate so far at surviving each day.  Best of wishes to you as you go through this next treatment.  And hair is a very small price to pay if you need to do the taxol.  Hair grows back!  Hugs.

Forherself's picture
Forherself
Posts: 531
Joined: Jan 2019

Did they do genetic testing and suggest any immunotherapy?  I understand your mentally sucks feelings.  It is a big part of this disease.  But you are still here and we are all grateful for that.  I looked up topotecan.  It is a general chemo.  The immunotherapy targets your mutations specifically as you know.  I just cant see that you have taken any.  

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

I think lenvatinib/pembrolizumab is an option regardless of genetics. I would also look into trials as a next option. And certainly a second opinion. But it may be that nephropathy is limiting your options. 

Harmony09's picture
Harmony09
Posts: 79
Joined: Aug 2017

Hey Fluff,

I'm sorry to hear about the latest developments in your Journey. We all know how you feel, and I think it's ONE of the best things about this site...we don't have to explain much or repeat our entire story. We just 2020-09-24instantly know what each other is going through. 

Your determination and honesty really inspired me to consider my own journey. Even though I have not had a recurrence (yet), it's not far from my mind often. My last treatment was 5/4/2018, and there's already been improvements and additions to the standard of care Tx for us. I did chemo and radiation as frontline Tx, so my options are not the same as someone else. Only YOU can say what the best option is for you and your family. While we can all place importance in different areas, your decision is undoubtedly the most valuable and effective solution for your Journey ;) Please keep us updated. It's so helpful for those of us who have to make our own decisions, when we get to read through descriptions and experiences of those who tread the paths before us.

May you have a wonderful outcome with the least amount of discomfort possible and absolutely no complications!

 

Sincerely,

Stacey 

cmb's picture
cmb
Posts: 675
Joined: Jan 2018

Stacey,

I've been thinking about you recently and wondering how you were doing, so I'm glad you checked back in and let us know that things are going well for you. I always love to see your beautiful profile pic!

ConnieSW
Posts: 1551
Joined: Jun 2012

I was glad to see that beautiful face pop up too

Rosesforever's picture
Rosesforever
Posts: 45
Joined: Sep 2018

Fluff so sorry to hear about your recurrance. I'm interested in hear about your treatment. I too was dx with carcinomatosis of the peritoneal cavity & cancer in soft surroundin tissue July 9. I had tumors discovered while having sigmoidectomy which resulted in a dreaded colostomy. I've been put on arimidex because my only tumor marker is a CA125 Which went from 72 to 89 in a month. This Saturday I will have another blood draw to check my CA125 and my creatinine. My right kidney has failed & there is some worry about my left Kidney so no chemo is recommended.  Much like you I've been told this kind of cancer is a short term death sentence. You have been through so much and fought so hard you are an inspiration. Please keep fighting and more importangly please try to enjoy your life. Hugs, best wishes and many prayers coming your way. 

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hello Fluff:

So sorry to hear that its back.   Hang in there!   Im sending you cyber hugs and healing thoughts!  I hope you are feeling well with your treatments.

Kathy

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