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Let the games begin....

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

This morning I started my new therapy of afinitor and Letrozole. I have to admit, I thought I was so ready until I tried to cram that big pill into a mini marshmallow!  The steroid mouth rinse ( of which I am to do 4 times a day to prevent ulcers) wasn't so bad but 2 minutes is a long time to rinse!  Praying for limited side effects and maximum effectiveness. BTW, I'm in the doughnut hole, my copay for 1 month for afinitor is more than $800.  Unfortunately (or fortunately) I don't meet any income guidelines to get that reduced. Wish me luck. Appreciate any advice from anyone on this therapy. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1795
Joined: Jun 2015

Thinking of you Cheese. I hope you are starting to feel better.

Love and Hugs,

Cindi

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

Well gals, just when you think things are going great, life knocks you on your ***. After a week in the hospital, 1 week of home IV antibiotics, multiple blood transfusions, a belly like a 9 month pregnant woman I finally decided enough is enough and got a CT scan which determined my disease has advanced. Needless to say, I'm heartbroken but not without hope. I will be starting a regimine of immunitherarapy on August 24. I'll keep you posted. Thanks, as always for your support. 

BluebirdOne's picture
BluebirdOne
Posts: 437
Joined: Jul 2018

The news is devastating, but your fighting attitude is what will be the most important thing going forward. Plus being proactive. We are thinking of you, and hoping for some good news about the immunotherapy soon.

xx00

Denise 

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Cheese, words are weak in times like these, but I love that you still have your gloves on and still ready to knock out the cancer. I have checked the site daily in hopes you would post as I know you said you would when better.

Please know you will have all my good thoughts going your way every day! "Strength grows in the moments when you think you cannot go on, but you go on anyway!"

barnyardgal
Posts: 274
Joined: Oct 2017

Ugh. I'm sorry. You're a fighter and an inspiration to us all. Kick the heck out of this stupid cancer. Hope you feel better.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Susan, I am so saddened to hear this.  Please keep us posted on the immunitherapy plans.  Many hugs and prayers my friend. 

MAbound
Posts: 1150
Joined: Jun 2016

Cheese, this is so scary to hear! You know we all love you to pieces here and just can't bear the thought of you going through all of this. I'm glad there is a new plan of action and really, really hope this is the one that finally works for you. You've been through so much already, so it's high time that you get an effective treatment that doesn't traumatize you further. Me and God are having a serious conversation about what's going one with you!

cmb's picture
cmb
Posts: 723
Joined: Jan 2018

Your resilience through all your troubles is truly amazing. So hoping for good results from the immunotherapy for you.

oldbeauty
Posts: 316
Joined: May 2012

Oh dear Cheese, not happy to read this but glad there is a further treatment on offer for you.  Please rest up and enjoy your family and your Covid-nesting.  We all here are 1000% behind you and we will boost your prayers with healing thoughts of our own.  In bocca al lupo!  Best wishes, Oldbeauty

ConnieSW
Posts: 1570
Joined: Jun 2012

It's been over 4 years since we met you and cheered for your speedy recovery from surgery so you could make your trip to Italy.  So much has happened since then and you are still hanging in there. What a tough lady.  I have so much respect for you and wish you all the best. 

Red Corvette
Posts: 114
Joined: Jan 2016

Cheese-A-Rina,

You and Mrs. Red were diagnosed and had surgeries at the same time and while we haven't posted in eons we still follow everyone. You are truely a great warrior and a beacon of strength and courage for everyone having to deal with this insidious beast. Please know that you have many many friends here who love you and are very proud of you.

Red

dgrdalton's picture
dgrdalton
Posts: 152
Joined: Jun 2017

Cheese, you are a fighter and a strong one! Sending prayers and hugs your way!

Donna D

Wannabeatit
Posts: 98
Joined: Dec 2017

I do not comment much lately but I wanted to tell you that your strength means alot. There are few ladies that lead the way like you do giving us hope and determination. Wishing for you to have the best outcome. 

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

This d*mn disease! I so admire your courage to keep fighting. I am hoping and praying this new treatment is the answer. 

Love,

Eldri

MoeKay
Posts: 347
Joined: Feb 2004

Geez, Cheese, what a nightmare you've been through!  I'm glad you were proactive and have your next treatment step in place.  I'm hoping and praying that the immunotherapy works like a charm for you.  I guess if there's anything positive in this picture, other than your consistently great attitude, it's that you won't be facing that $800+ monthly Afinitor copay any longer!!  Be well. 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1795
Joined: Jun 2015

Cheese, not what any of us wanted for you! I hate this dam* cancer!!!!

Thank you for letting us know what is happening. I know we will all be waiting to hear great news once you start the treatments. I love MABound's discussion with God and I think I'll join in that discussion!

Please feel better sweet lady. You are an inspiration to all.

Love and Hugs,

Cindi

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

Girl, you have inspired me since the day I arrived on this board three years ago.  You are so tough and brave!  I know you'll do great with the new regime, but I am so sorry you've been through these ordeals.  Praying for you right now.  We are here for you.

Tamlen's picture
Tamlen
Posts: 317
Joined: Jan 2018

CQ, sorry to be so late in seeing and responding to this. Gosh you've been through so much and I hope you've been able to get some good rest since you posted last. I'm sending my warmest hug and good wishes. We're all rooting for you.

pato58's picture
pato58
Posts: 120
Joined: Jun 2018

You were there with your support when I needed advice at the beginning of my journey. I really hope the immunoteraphy regimen will be effective for you to kick the freaking cancer out!
You are in my thoughts!!!

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

When last we chatted I was recovering from my hospitalization.
My hemoglobin never really got up to par, and forgive me if I forget some details, but after multiple transfusions and ascites big enough to mimic a full termed baby, I found myself in the intensive care unit of Hospital of University of PA. 

 

To make a long story short, I stayed there for 5 days. My cancer has progressed even on treatment and my first drainage of ascites yielded 6.4 Liters (over 3-2 liters of Pepsi!). Unfortunately I also suffered a hematoma so it took awhile fo them to stabilize my blood count. Meanwhile horrible, nausea, vomiting, and diarrhea. I’ll spare you more details. 

Friday, they drained another almost 4 liters. The plan is, I will begin immunotherapy with Keytruda and Lenvima on August 31. Fortunately we found a remedy for the horrible nausea (Zyprexa, who knew?). My oncologist is very hopeful about this treatment. 

So it’s been hellish for the past few weeks but I’m over the worst of it for now. Now if I could only muster the energy for a shower. It’s been a while. 

So that's the updates girls!  Stay strong. 

Molly110
Posts: 190
Joined: Oct 2019

You are an amazing woman. I hope you are getting stronger and feeling better by the day. The new treatment sounds so promising.

Warmest wishes.

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

Oh Cheese, how I admire your strength. I know you have moments when you want to say to hell with this, but you soldier on. So glad you have good care even though painful and exhausting. But you have a will to fight and I so admire that. Wishing the best for you and the L/K treatment! You deserve a break and I know I join all the ladies saying may the next few months bring much good results! I say a little prayer for you every morning.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1795
Joined: Jun 2015

So glad to hear from you. I so wish the news was better though. What a wild ride for sure. Glad that you are finally getting some relief and are hopeful with the immunotherapy. 

Thanks for finding the energy to update us. I know, you know; how much we are all supporting you.

Love and Hugs,

Cindi

cmb's picture
cmb
Posts: 723
Joined: Jan 2018

I've discussed this in other posts, but now may also be a good time to mention again that my mother struggled with her cervical cancer for about eight years, enduring multiple types of chemo and different surgeries, including a colostomy. Nothing kept the cancer at bay for very long. But then her new oncologist wanted her to try a newly approved chemotherapy drug. This one actually worked and she remained in remission until she died several years later (not of cancer). So new or different therapies do work for some of us. I hope Keytruda is the answer for you, as it has been for others.

EZLiving66's picture
EZLiving66
Posts: 1478
Joined: Oct 2015

Holy smokes, Susan, you have been through hell and back!! I honestly don't know how you keep such a positive attitude. Hopefully, this new treatment will work and put you back in remission!!

Love,

Eldri

MAbound
Posts: 1150
Joined: Jun 2016

Oh, Cheese, I wish your metaphor wasn't so apt! I had that abdomen when I had ileus after my hysterectomy, so your description brings flashbacks to that particular misery. Let's hope you are done with that! I have to say that I'm disappointed that your treatment has gotten pushed back again because I'm really hoping that this finally brings you some relief and want it to get going. I'm still scared for you and wishing I had more pull with God to apply on your behalf, but believe that I am asking for all that I'm worth these days. In the meantime....have the best shower ever....I bet it will help to perk you up a bit!

SF73
Posts: 309
Joined: Oct 2017

So glad to hear that you are out of the intensive care unit and starting the Keytruda treatment. Wishing you all the best, Cheese! Thank you for giving us an update. 

MoeKay
Posts: 347
Joined: Feb 2004

Cheese, after all you've recently been through, you are long overdue for some good medical news!  Here's wishing you the best results anyone has ever seen with Keytruda!!  My childhood friend who also has endometrial cancer went for her Keytruda infusion on Thursday.  She said it only took 30 minutes, which made her very happy.  The less time spent in and around hospitals the better!!  Hope you're just relaxing this week and that you feel better day by day. 

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

Cheering you on from South Carolina.  I wanted to let you know that when I was first diagnosed, a friend who is a geneticist told me that their scientific community is so incredibly jazzed about Keytruda - they'd never seen anything like it for results.  Praying for you with thankfulness for your courage and knowledge and kindness and friendship to us all.  Much love!

ConnieSW
Posts: 1570
Joined: Jun 2012

I can't begin to imagine how uncomfortable you were with all the fluid. How are you doing with eating?  Are you maintaining your nutrition and weight?

BluebirdOne's picture
BluebirdOne
Posts: 437
Joined: Jul 2018

I think about you almost everyday and hope you are coping with this latest setback. We are here for you. 

xxoo

Denise 

oldbeauty
Posts: 316
Joined: May 2012

You are one tough lady, Susan.  I hate to see that you've been through the wringer again.  I think of you often, and I send you virtual hugs to boost your spirit.  We all do so appreciate being kept in the loop.  You are a rock and a great resource.  I hope the treatment on the 31st goes without any complication, and that your response is one for the record books!  Best wishes, Oldbeauty

Donna Faye's picture
Donna Faye
Posts: 430
Joined: Jan 2017

All the best today for the L/K to work like a charm. Hang tough!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2901
Joined: Mar 2013

Susan, sending you good thoughts and prayers always, but a little something extra for today.

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