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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. 

Fridays Child
Posts: 211
Joined: Jul 2019

Praying that it's very effective for you and no side effects!  Please keep us posted.  I remember Lulu talking about putting the Affinitor in marshmallows but didn't realize it was a big pill! I'll be keeping up with this one as that's the next thing my oncologist has recommended when/if the Megace fails.

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

Glad you are getting started on the new meds. Have been wondering if it all got sorted. Hoping they will work like a charm. I have to admit I relate to your let the games begin title as that is how we feel as we stand at the starting gate and wonder what the race will be like. Wishing you all the best!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1773
Joined: Jun 2015

Thinking of you Cheese. I hope this WORKS! As always, your attitude is awesome and will help you continue the fight.

Here's to zero side effects and some really great news down the road.

Love and Hugs,

Cindi

cmb's picture
cmb
Posts: 678
Joined: Jan 2018

I'm keeping my fingers crossed that this new regimen works well for you without a lot of side effects.

ConnieSW
Posts: 1552
Joined: Jun 2012

GOOD LUCK.  (Me shouting as loud as I can)

MoeKay
Posts: 333
Joined: Feb 2004

Wishing you the best of luck as you begin your new treatment.  May you have great results and no significant side effects.  That afinitor better work like a charm, with that gigantic copay you're getting hit with!!!  Whatever happened to the good old days when doctors used to hand out free drug samples to their patients? 

oldbeauty
Posts: 303
Joined: May 2012

Hi Cheese.  "In bocca al lupo"* as you embark on this new treatment that we all hope steps in where Megace waned in effectiveness and that afinitor is useful in controlling/shrinking your hot spot(s).  Your willingness to share so openly your decision-making calculus and your experiences while taking the drugs is humbling.  Thank you.  Best wishes, Oldbeauty

* (From Ms. Google in the spirit of your adventure next year!). "What [Italians] usually say to a person who is going to sit for a test or a job interview or is feeling unwell is ‘In bocca al lupo’, which literally means ‘In the wolf’s mouth’. To complete the good luck ritual, the person, who has been told that, has to answer ‘Crepi il lupo’ which means ‘die the wolf’. The short version of the answer is ‘Crepi’, the lupo is implied."

 

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

Crepi, OldBeauty. Thanks for good wishes. The information others have shared has been so crucial to my journey I feel an obligation to pass it on to all my sisters. I don't know how I ever would have managed physically Or emotionally without this forum. 

MAbound
Posts: 1122
Joined: Jun 2016

Now there's a word that's going to play over and over in my head! Good luck Cheese!

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

Wishing you the best of luck with the new treatment. Keep us updated!

Donna D

Molly110
Posts: 190
Joined: Oct 2019

Wishing you good luck and good cheer, Cheese, with my fingers crossed and eyes heavenward. (It makes me furious that you should even have to think about the cost of these medications. When are we ever going to get this horrible situation fixed? Payment should be very last thing on anyone's mind when they are fighting for their lives.)

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

Good luck, Susan.  I pray for you and success.  Love you.

zsazsa1
Posts: 553
Joined: Oct 2018

CheeseQueen, hoping you have a rapid and excellent response to the new medications.  I had to laugh when you told about having to put the pill in a marshmallow, because it reminded of me of tricking current and pet dogs into swallowing a pill when needed.  Hope it goes down easily.

jan9wils's picture
jan9wils
Posts: 156
Joined: Mar 2017

Thank you for sharing. This is the protocol my doctor is recommending for me when my cancer grows again.

Tamlen's picture
Tamlen
Posts: 307
Joined: Jan 2018

Good luck wit hthe new regimen, CQ. We're all pulling for you! Thanks for keeping us posted on how you're doing...and for that funny marshmallow image!

Tamlen

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

I saw my oncologist yesterday. I've been on this therapy for two weeks and so far so good. Limited side effects and frankly I feel better than I have in years. All my labs were fine. I'll get more labs and a CT scan in August. Hoping for the best. My CA 125 was 13 so just reinforces that it is NOT a good indicator for me. So I'll continue with my marshmallow covered pill and mouth rinses and pray for effectiveness. 

Forherself's picture
Forherself
Posts: 533
Joined: Jan 2019

I am so glad to hear you are feeling better at this point.  You have been through so much, and are such a inspiration showing such grace always.   I pray that this continues for you.   

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

Thankful to hear this wonderful news!  

Molly110
Posts: 190
Joined: Oct 2019

Congratulations on the good results, and how wonderful that you are feeling better than you have in years!

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

Thanks for letting us know, CQ!  I add my prayers for continued success.  

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

Sounds good. So happy for you.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1773
Joined: Jun 2015

So good to hear this Cheese! Adding my positive hugs to your results.

Love and Hugs,

Cindi

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

I'm so glad to hear your good news! Please keep us updated on your progress.

Love,

Eldri

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

So happy to hear the good news! Praying that you continue to feel good with minimal side effects.

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

So gals, I ended up with an infection through my nephrostomy tube but I think we caught it in time. Of course I'm in OCM so not the best place to be but oh well. Started experiencing fever, 103, oncologist told me to go to ER.  That was Tuesday night. Cultures are not back yet so we don't really know what organism. Had a couple rough nights But I packed my bags sufficiently with my drugs, etc. But it amazes me how the screw with your meds when your in the hospital. I'm trying to not let that happen. Even though the pharmacist was in to talk to me. Not in any incredible amount of pain. But this certainly knocks me off of my well especially established routine. **** happens I guess. Thoughts and prayers appreciated. 

ConnieSW
Posts: 1552
Joined: Jun 2012

Please substitute stronger language. I know life isn't fair, but this really isn't. Please  stay safe while your body responds to treatment And get home ASAP. 

Molly110
Posts: 190
Joined: Oct 2019

[Content removed by CSN Support Team.] Thoughts and prayers headed your way.

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

Oh no! Glad you're on the mend, but geez. Take care.

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

Prayers my friend!  Kick it in the butt and I know you will TELL THEM if they try to screw with your meds.  It IS amazing.  SMH

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

Not sure what OCM is, but whatever. I am thinking of you and hoping for a quick resolution. 

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

Now my red blood cell levels are droppin!  I'm thinking a bowel bleed. Great!

MAbound
Posts: 1122
Joined: Jun 2016

Sending prayers that all will be ok, but geez, none of us want you in a hospital right now! 

SF73
Posts: 307
Joined: Oct 2017

Wishing you all the best, Cheese. Hope they will quickly solve the infection and the low red blood cell level issues. 

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

Cheese, first my best wishes for you to get better fast! But also, I looked for OCM and found it is the Oncology Care Model of the Affordable Care Act. Not sure I understand it yet, but thank you for putting it in the post because it sounds like we all need to know how it works.

Again, sending best thoughts to a fellow warrior. df

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

Sorry gals!  OCM is an acronym for my beloved Ocean City, MD. 

MoeKay
Posts: 333
Joined: Feb 2004

Cheese, I'm so sorry to hear about the current issues you are experiencing.  I checked and see that both increased infections and low red blood cells are potential side effects of Afinitor.  https://www.oncolink.org/cancer-treatment/oncolink-rx/everolimus-afinitor-r.  I would be interested to hear what your oncologist thinks about this. 

Good luck in getting things squared away quickly, and I hope and pray that you feel better soon!

 P.S. We've been going to OCM for more than 45 years, and were there right before Covid-19 shut everything down.

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

Would love to meet up with you next time you are down (with proper social distancing!). Message me. 

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

Cheese, glad your OCM is a lovely place, but I am glad I learned about the other! Keep strong.

df

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

So sorry to hear this. Sending hugs and prayers!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1773
Joined: Jun 2015

Cheese,

So sorry you are having to deal with this! You are one strong lady! Thanks for sharing. Sending loads of hugs and prayers your way.

Love and Hugs,

Cindi

oldbeauty
Posts: 303
Joined: May 2012

So sorry you encountered this on your Shore holiday.  Hope you are back in situ and enjoying the sun and summer breezes.  Please be healed soon.  Best wishes, Oldbeauty

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

Hope you're feeling much better by now. 

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

CQ, it has been a few days now.  How are you doing?

zsazsa1
Posts: 553
Joined: Oct 2018

So sorry that your vacation was ruined.  Hope you're doing better.

 

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

Got home on Sunday. Totally wiped out. On IV antibiotics. Will see new urologist at Penn on Thursday. Hospital experience total horror. Will write more when I feel better. Appreciate thoughts and prayers. 

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

I am so sorry! It seems like if it wasn't for bad luck you'd have no luck at all. Here's hoping that bad luck changes into "good" REAL SOON!

Love,

Eldri

MAbound
Posts: 1122
Joined: Jun 2016

Crepi!!

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

are yours. Glad you are home,

MoeKay
Posts: 333
Joined: Feb 2004

I'm really sorry you've been through such an ordeal, Cheese.  Hoping and praying that you fully recover soon.  Good luck at your urologist appointment on Thursday.  Thanks so much for the update. 

jan9wils's picture
jan9wils
Posts: 156
Joined: Mar 2017

Sorry I'm late to this. Just getting caught up and see that you've had quite a trial Cheese. I'm sorry the hospital was horrific. Sending positive vibes and a virtual hug your way. Hope you feel better now that you are out of the hospital.

Jan

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