And now it starts

foxhd
foxhd Member Posts: 3,181

My wife is wonderful. Even with insurance the cabozantinib costs about a $1,000 a week! I refused. She worked on finding money through patient assistance programs. They said they were all broke. She then persistantly worked with the pharmacists at Yale and the drug manufacturer. I now have recieved my first months supply FOR FREE!!And every subsequent month as long as I need it. She is capable of accomplishing anything. What an amazing woman. I now have 3 doses under my belt. No diarrhea or nausea yet. I don't remember how long before votrient was worse than the cure. I guess I will wait and see. Maybe I'll get lucky.

I remember being diagnosed in march 2011. I only asked to enjoy one last summer. Then along came the nivo trial and 2 more summers. then Il-2, then votrient and more nivo. And more summers. I realized that I this is my 6th summer!! How lucky am I?

I may do ok with tolerating this drug. When I started votrient I was circling the drain and knocking on deaths door. Now I have pain, sensory loss, weakness, and coordination issues from my neck into my hands but at least I feel well. with a good appetite. I ask myself everyday if I could continue to live this way and the answer is definitely yes. The complications however are much more serious.

With tumors and clots near my heart, I could be taken out anytime. You'll know if this happens because my middle fingers will be extended. I'm beginning to get edematous ankles like your great old italian aunt Philomena. I'm gong out to buy black shoes and I'll roll down my hose to mid calf. I'll make plans for a gold front tooth.

And so now it starts. My latest journey in the war on RCC.

 

 

 

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Comments

  • hardo718
    hardo718 Member Posts: 853
    You are too darn funny!!

    What an inspiration.....and not from a Respiratory Therapist's standpoint.  haha

    I can picture some of the elders on my mothers side now, although they've been gone for sometime now, with the black oxfords and hose rolled down.  What a hoot!  I can honestly say, none of them donned the gold front tooth.....whew. 

    I always remind my husband that we can all use a good wife now & then.  Yours is pretty special....and diligent....she must want to keep you around for a few more summers huh?

    God love ya Fox,

    Donna~

  • Pandabear1011
    Pandabear1011 Member Posts: 123
    Way to go, Mrs. Foxy!!!!

    Way to go, Mrs. Foxy!!!! Always sending you positive thoughts and good vibes, Foxy!! Hugs, Panda

  • Shecka1121
    Shecka1121 Member Posts: 117 Member
    edited August 2016 #4
    Your wife rocks and so do you

    Your wife rocks and so do you.  

  • stub1969
    stub1969 Member Posts: 956 Member
    Good luck Fox

    Good luck and positive thoughts coming your way.

    Stub

  • Kangaroorex
    Kangaroorex Member Posts: 47
    Best of luck!

    I hope it works well for you.  I dont know much about it but my doctor mentioned a combo treatement with Cabo that is supposed to be extremely effective.  I will let you know if i can find out more

  • Airie
    Airie Member Posts: 45
    edited August 2016 #7
    Great to know you've got Cabo

    Great to know you've got Cabo supply and for free! Way to go Mrs Fox! Love it when the stars align like that. It's Karma! Keep us updated!

  • marosa
    marosa Member Posts: 333
    Of course the Missus had to be as cool as you are..

    You both rock!  Love you Fox, sending love, healing thoughts and good vibes your way!   " F L Y "  for you and for us all!

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    edited August 2016 #9
    Mrs Fox Rocks

    Fox,  Great news, you are truely blessed to have such a great wife.  Your positive attitude and strength earned you this opportunity.  Good on ya!

    Jack

  • dancnbear1
    dancnbear1 Member Posts: 86
    Thats great news. My prayers

    Thats great news. My prayers and thoughts are with you now and always. You are truly an inspiration to us all!

    DB

     

  • nancybuck
    nancybuck Member Posts: 117
    Italian Grandmothers

    I had THAT grandmother! Sending good wishes and healing thoughts Kind regards to Mrs. Fox as well.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760
    Mrs Fox's superpowers

    Mrs Fox is indeed amazing. Her super powers plus yours definitely make you two a dynamic duo. 

    My grandmother didn't have the stockings rolled down, but I do remember her shapeless faded house dresses, sensible shoes, a lace-trimmed handkerchief tucked someplace strategic, and she always smelled of Avon Topaz. 

    I'm sure you could rock the sensible shoes, Fox Cool !

  • DMike
    DMike Member Posts: 259
    Journeys

    Hi Fox,

    Good luck with the Cabo! I just started the Everolimus/Lenvatinib combo, my 7th and 8th drugs. The drugs (IL2, votrient, Inlyta, Atezolizumab/PDL-1) keep failing but like you I keep fighting.

    We had the same problem with out-of-pocket costs, $3800 for the first month. I worked with the social worker at my oncologist's office and we're going to get the drugs free for the rest of 2016. They'll reevaluate in '17.

    Thinking about you and wishing you the best!

    David

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Mrs. Foxy sure is phenomenal.

    Mrs. Foxy sure is phenomenal. Give her a big kiss from me! Love that woman!

    And look who she is married to! The two of you should be nicknamed the Dynamic Duo! So happy to hear all these good things, Foxy.

    Cheers!!

    Jojo

  • foxhd
    foxhd Member Posts: 3,181
    Erin Brockavich

    That is what my wife is like when it comes to negotiating with her. If there is a way to accomplish something, she will be the first and most successful one getting the job done. BTW, I have NEVER won an argument with her. So I know that my best weapon is keeping my mouth shut. A ying yang sort of thing. Or is it "ding a ling" thing. I'm not sure but I know what she is capable of.... Thanks everyone for the support. It means a lot. FLY.

     

  • Srashedb
    Srashedb Member Posts: 482
    Chiming in

    Fox:

    you, sir, have a way with words and wry humor; a great combination when dealing with adversity. A $1k/ month??? There is a special place in hell for whomever gouges people like that.

    Great work from your wife!!!! It is a total puzzle why the same drug can cost disparate rates depending on location.

    it is great that you are not having side effects and hoping that remain.

    i have been somewhat quiet lately not because of disinterest but because I am determined to have summers be like the ones of childhood and so we just returned from a lake in CA and after some work, visits with granddaughters and a wedding, off again to a lake in Oregon. Then, my husband will have a partial adrenalectomy on the 19th.

    Sarah

  • Darron
    Darron Member Posts: 310
    edited August 2016 #17
    foxhd said:

    Erin Brockavich

    That is what my wife is like when it comes to negotiating with her. If there is a way to accomplish something, she will be the first and most successful one getting the job done. BTW, I have NEVER won an argument with her. So I know that my best weapon is keeping my mouth shut. A ying yang sort of thing. Or is it "ding a ling" thing. I'm not sure but I know what she is capable of.... Thanks everyone for the support. It means a lot. FLY.

     

    Erin Brockavich

    I think that most of us have an advocate that does more for us than anyone really knows. I know that my wife still makes me drink Kale smoothies every morning....beat of luck With the new meds!

     

    Keep flying

  • APny
    APny Member Posts: 1,995 Member
    Awesome wife and an awesome

    Awesome wife and an awesome sense of humor. Way to go, Fox! Just promise us that you'll post a picture with those stockings rolled down and the black shoes :)

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    APny said:

    Awesome wife and an awesome

    Awesome wife and an awesome sense of humor. Way to go, Fox! Just promise us that you'll post a picture with those stockings rolled down and the black shoes :)

    Of COURSE your wife would

    Of COURSE your wife would fight this fight along side you and not take no for an answer! YAY! But of course, YOU chose her!

    Glad to know you are hanging in there so far so  good-ish with this new drug. Yes, I remember when you were circling the drain, so to speak and my heart was breaking for all you went through, unable to even let us know at the time.

    YOU are the most special man, heart loving, funny and only one I know to find SEXY in this journey!!

    Sending you my heart's continued connection, and all that it takes for you to realize how much I just love you and your wife!

    Spirited Hugs, Jan

  • Allochka
    Allochka Member Posts: 1,004 Member
    You and your wife are an

    You and your wife are an inspiration! When (and if) hard times come to our family, I hope to be as supportive and brave fighter as she is

  • foxhd
    foxhd Member Posts: 3,181
    Tomorrow

    is a week of taking cabo. Already! So far, so good. Blood work and office visit tomorrow. I'm proof you can live on borrowed time. I spent the day walking around a PGA event. It is amazing how my body remembers being fit and it is so ingrained in me, it responds automatically. It just takes time. The guy I went with had to walk behind a bit. I could hear him sucking wind. Now part of what I say I back up by saying that the guy used to run marathons with me but gave up all exercise 25 years ago. Amusing in a way.