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And now it starts

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

 

 

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

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
Posts: 123
Joined: Jun 2014

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

Shecka1121
Posts: 114
Joined: Apr 2015

Your wife rocks and so do you.  

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

Good luck and positive thoughts coming your way.

Stub

Kangaroorex
Posts: 45
Joined: Jul 2016

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
Posts: 45
Joined: Mar 2016

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's picture
marosa
Posts: 333
Joined: Feb 2015

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's picture
Skagway Jack
Posts: 224
Joined: Oct 2013

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
Posts: 86
Joined: Dec 2013

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

DB

 

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

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

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

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's picture
DMike
Posts: 259
Joined: Nov 2011

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's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

 

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

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

Srashedb
Posts: 482
Joined: Dec 2013

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

APny's picture
APny
Posts: 1988
Joined: Mar 2014

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's picture
Jan4you
Posts: 1326
Joined: Oct 2013

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's picture
Allochka
Posts: 929
Joined: Nov 2014

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

You are something else.  I wish you the best.

Love ya man.......Donna~

Kangaroorex
Posts: 45
Joined: Jul 2016

You keep hanging in there!  Take care of yourself and the best to both of you!

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

 Have been thinking about you all and had to come on and check on you.  SO i see you on new drugs and big things going on with you.  But what a sense of humor you still have.  You paint such a pretty picture with words.  I pray this med works better than any before and the least side effects.  Have missed talking to you.  With all you been through I dont even want to talk about whats up with me, but I will in another post, because I need your thoughts and prayers.  Love you I forgot  your wife is a fighter to get what you need and not giving up.  Bless her heart!  What a woman you have

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Take care of that woman who takes care of you! You are in my thoughts, hope you had good news this afternoon! 

Dave

angec's picture
angec
Posts: 924
Joined: Mar 2012

Too funny! Sick and all and you are still ahead of others. Your positive attitude goes  a long way!  Cabo was easy on a lot of folks, even children. So, chances are you will do well!!  Your wife is amazing. That Erin is amazing also! 

I opened my email today and there was an email from Trevor (tw). Spam, but for a moment there, i forgot he wasn't emailing me anymore.  Glad to come on here and see you pushing ever forward!  YOU GO FOX!  ELF! (Everyone Loves Fox)..... HUGS!

Ange

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

<p>Even wives like that!</p>

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Good luck dear Fox

You have a wonderful wife. So do your best to stay around her for so many years to come.

As one of your admirers I wish you best results and no side effect.

 

mrou50
Posts: 389
Joined: Mar 2013

You are truly and inspiration Fox, and thank God you have a wife who looks out for your and does not take no for an answer.  My wife is the same way it sure makes fighting easier having a good support system.

 

Mark

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