Let the games begin....

CheeseQueen57
CheeseQueen57 Member Posts: 933 Member
in Uterine/Endometrial Cancer #1

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. 

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Comments

  • Fridays Child
    Fridays Child Member Posts: 281 Member
    edited June 2020 #2
    Good luck!

    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
    Donna Faye Member Posts: 427 Member
    #3
    Pulling for you

    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
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited June 2020 #4
    Thinking of you Cheese. I

    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
    cmb Member Posts: 1,001 Member
    edited June 2020 #5
    Fingers crossed

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

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #6
    Count me in

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

  • MoeKay
    MoeKay Member Posts: 495 Member
    edited June 2020 #7
    Best of Luck

    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
    oldbeauty Member Posts: 379 Member
    edited June 2020 #8
    Happy trails on your new journey!

    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
    CheeseQueen57 Member Posts: 933 Member
    edited June 2020 #9
    oldbeauty said:

    Happy trails on your new journey!

    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."

     

    Crepi

    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
    MAbound Member Posts: 1,175 Member
    edited June 2020 #10
    oldbeauty said:

    Happy trails on your new journey!

    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."

     

    How apt!

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

  • dgrdalton
    dgrdalton Member Posts: 161 Member
    edited June 2020 #11
    Best of luck

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

    Donna D

  • Molly110
    Molly110 Member Posts: 191 Member
    edited June 2020 #12
    Wishing you good luck and

    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
    NoTimeForCancer Member Posts: 3,515 Member
    #13
    Good luck, Susan.  I pray for

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

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #14
    CheeseQueen, hoping you have

    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
    jan9wils Member Posts: 209 Member
    #15
    Thank you for sharing. This

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

  • Tamlen
    Tamlen Member Posts: 343 Member
    #16
    Sending good vibes your way

    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
    CheeseQueen57 Member Posts: 933 Member
    #17
    So far, so good

    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. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #18
    Thanks for letting us know,

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

  • Forherself
    Forherself Member Posts: 1,018 Member
    edited July 2020 #19
    CheeseQueen57 said:

    So far, so good

    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. 

    That is nice to hear

    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
    Armywife Member Posts: 451 Member
    #20
    CheeseQueen57 said:

    So far, so good

    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. 

    Crepi!

    Thankful to hear this wonderful news!  

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited July 2020 #21
    Wonderful report

    Sounds good. So happy for you.

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