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Who says, "You can't always get what you want."

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011
Jan 15, 2016 - 6:32 pm

...but if you try sometime, you just might find, you get what you need!!!!

Saw my onc today. I will begin nivo next week and get my stereotactic radiation as soon as I get it scheduled. I am thrilled beyond words. No more votrient side effects! No more white hair in the drain. No more nausea or diarrhea. Despite having new tumor growth, I am feeling ready to put up another good fight. I am so excited. When I was on nivo in the trial phase, I was on the highest dose studied at 10mg/kg body weight. The dose will be only 3mg/kg body weight. So unless my chemistry has changed drasticly, it will be a walk in the park. I am so confident that this plan will work. I've got tingles all over. FLY!
Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
 Joined: Jul 2014
Jan 15, 2016 - 7:44 pm

Good for you, Foxy.  Go get 'em and kick cancer's ***!
todd121's picture
todd121
Posts: 1444
 Joined: Dec 2012
Jan 15, 2016 - 8:23 pm

I wish you the best with this new medicine.

Hugs,

Todd
marosa's picture
marosa
Posts: 333
 Joined: Feb 2015
Jan 15, 2016 - 8:37 pm

Oh, la laaaaaa!

 
dancnbear1
Posts: 86
 Joined: Dec 2013
Jan 15, 2016 - 9:14 pm

Thats great news. Time to kick some ***!
Bonngo's picture
Bonngo
Posts: 79
 Joined: May 2012
Jan 15, 2016 - 10:03 pm

So happy for you! 

~Bonnie
medic1971's picture
medic1971
Posts: 203
 Joined: Sep 2015
Jan 15, 2016 - 10:13 pm

Smile
Jojo61's picture
Jojo61
Posts: 1310
 Joined: Oct 2013
Jan 15, 2016 - 10:45 pm

What fabulous news, Foxy. I can't think of a better way to start my holiday! I am SO happy for you!

Big hugs

Jojo

XOXOXO
Racinreggie's picture
Racinreggie
Posts: 16
 Joined: Jul 2015
Jan 15, 2016 - 11:11 pm

Awesome news. Enjoy the rest of 2016!☺
Srashedb
Posts: 482
 Joined: Dec 2013
Jan 16, 2016 - 12:01 am

this is great news; having specialists to provide information and advisement is important but equally important is researching for yourself and making informed choices from the menu.

i too have  very good feeling about this.

to new patients, overwhelmed with the news of the diagnosis, read these posts and there will be much to learn once the shock and fear recede (somewhat).

Sarah 
foroughsh's picture
foroughsh
Posts: 779
 Joined: Oct 2014
Jan 16, 2016 - 3:02 am

You deserve the best and I'm sure you'll have it.

F.L.Y 2(Forough loves you too)Wink

 
APny's picture
APny
Posts: 1992
 Joined: Mar 2014
Jan 16, 2016 - 8:05 am

Excellent news. So happy for you. Go get 'em!
Pandabear1011
Posts: 123
 Joined: Jun 2014
Jan 16, 2016 - 8:46 am

So excited for you, Foxy!! Gonna kick some cancer ***!!!!
foxhd's picture
foxhd
Posts: 3183
 Joined: Oct 2011
Jan 16, 2016 - 11:30 am

It is pretty bizarre. New people might read this and wonder why the hell am I so excited that my cancer has spread again. Our treatment options are expanding. Being able to discuss a plan of care with receptive doctors is priceless. It says alot about my medical team and the information available to us to implement informed decisions. But the most important factor is, I'M OFF VOTRIENT!! Thanks everyone. FLY! FLY! FLY!
Srashedb
Posts: 482
 Joined: Dec 2013
Jan 16, 2016 - 2:01 pm

Fox: 

you're right about the craziness of cheering progression and how someone new to cancer might view it.

after being a lawyer for close to 30 years, I guess I have gotten used to the absurd making sense. 

I am hoping that votrient will have a successor that does not impact quality of life; all cancer treatments seem primitive and brutal 

as Susan Love, the breast cancer guru puts it "mutilate, burn and poison" are not ways to treat breast cancer but we have been stuck there for decades despite all the awareness and early detection 

nevertheless, your news is good and your heavy involvement in treatment are very valuable 

Sarah
hardo718's picture
hardo718
Posts: 853
 Joined: Jan 2016
Jan 16, 2016 - 10:17 am

HAha.  Best wishes.  I'll keep you in my prayers.  Keep on keepin on.  If anyone will kick this thing, it'll be YOU!  Looking forward to hearing good news from you in the near future.
Skagway Jack's picture
Skagway Jack
Posts: 224
 Joined: Oct 2013
Jan 16, 2016 - 10:48 am

FOX,   Glad to hear your treatment plan is moving on to bigger and hopefully better options.  These changes kinda of remind me of paddling a canoe, becuse when you paddle you use different strokes to keep it going straight.  Sometimes you just get tired of paddling on the same side and you need to switch to give your arms a break.  Best of luck with keeping the canoe going in the right direction!

 

Skagway
DMike's picture
DMike
Posts: 259
 Joined: Nov 2011
Jan 16, 2016 - 11:44 am

You put in the work up front to get the drug approved for RCC. I can't think of anyone more deserving of a second chance!

Please let us know how Medicare handles the billing. My trial drug is working but I may eventually end up on Nivo too and I'm concerned about the cost.

Thanks and good luck!

David
Allochka's picture
Allochka
Posts: 934
 Joined: Nov 2014
Jan 16, 2016 - 1:59 pm

Excellent! It is a start of good fight with great results ahead, so glad for you! :-)
mrou50
Posts: 389
 Joined: Mar 2013
Jan 16, 2016 - 8:52 pm

Great News Fox I hope that all goes well.

 

Mark
Jan4you's picture
Jan4you
Posts: 1326
 Joined: Oct 2013
Jan 17, 2016 - 10:47 am

EXCELLENT NEWS!!

Well deserved!

We'll be on your side fighing the fight along side you!!

JLF=Jan loves Fox!

Sending you healing vibes~gentle hugs!

Jan
foxhd's picture
foxhd
Posts: 3183
 Joined: Oct 2011
Jan 17, 2016 - 11:20 am

David made a great point in a message to me. Basically that since I was part of the drug trial for so long, I deserve a shot at nivo now. That sure is true. Having played the ginney pig has allowed others to benefit from the risk I took. Sort of another Karma.

and..I love you too Jan.
angec's picture
angec
Posts: 924
 Joined: Mar 2012
Jan 17, 2016 - 8:10 pm

Awesome news, Fox!  You are chromopobe righ?  You just might get that Harley out very soon!

 

Go Fox!
foxhd's picture
foxhd
Posts: 3183
 Joined: Oct 2011
Jan 17, 2016 - 8:53 pm

Clear cell all the way.  3rd day off votrient. Yah Hoo! It feels great. I hope my insurance is going to pay for this.
angelsnls
Posts: 67
 Joined: Nov 2014
Jan 19, 2016 - 7:58 am

Well done and good luck fox you deserve this. I am off votrient as well now due to progression and have been put on axitinib (inlyta) 

Take care and FLY fox

Angela x
nancybuck's picture
nancybuck
Posts: 117
 Joined: Sep 2015
Jan 19, 2016 - 1:25 am

I am so happy to read your post. I have tears of happiness for you and your awesome fight against this monster called cancer.\\

Love and hugs

Nancy
foxhd's picture
foxhd
Posts: 3183
 Joined: Oct 2011
Jan 19, 2016 - 10:42 am

5th day off votrient. I feel so human! I am eating great and food is tasting awesome. I even feel stronger. My arm and leg hurt but that will be over shortly. Mentally I am pumped up like being told "You're gonna be a grandpa!" Absolutely no second thoughts what so ever. I can honestly say I haven't felt this good in at least several years. This brief drug holiday has made my gut feel as if nothing has ever been wrong. I'm giddy with excitement. I better take a new selfie while I still look like an Edgar Winter. Since I lost so much weight, I donated most of my clothes. It will be time for a new wardrobe. (big deal. t-shirts and jean shorts.)

I am so confident in nivo and radiation that I'm putting all my eggs in the same basket. I would worry if someone else did this. But I'm all in. Easy peazey. The concept of my cancer being a manageable chronic disease is only a little out of my grasp. But I can touch it. I can taste it. I am living the yang of confidence and excitement equal to the ying of a newbies fears when first diagnosed. I also think the timing is perfect. I get the rest of winter and spring to exercise. Light weights and yoga is where my effort will be focused. People have often asked me why I only use light weights in my exercise. The answer is, "because I can't pick up heavy weights!" (I use that line every chance I get.

I'm so glad I didn't sell my Harley. I have recovered my motor skills and my guitar playing. Working with tools is still a challenge but I am overcoming that too. My family is well, beer tastes good, and pizza is a gift from god. Simple pleasures for a simple man. Glenn Fry tells me it's a "Peaceful, easy feeling." Karma all around. Seconds for everyone!

FLY!!!!!
Srashedb
Posts: 482
 Joined: Dec 2013
Jan 19, 2016 - 4:53 pm

feeling just as good as being told you will be a grandpa captures joy so well; how wonderful to regain life's good things.

on a more serious note, how can a drug that causes such awful side effects  a negligible impact on cancer ?

So glad that you will be on  low side-effect med that has shown good promise for you,

Sarah
hardo718's picture
hardo718
Posts: 853
 Joined: Jan 2016
Jan 20, 2016 - 12:04 pm

....and thankful that you're feeling better.  Hope you don't mind I'm going to steal your line about the weights, that's awesome!!   I agree: pizza is a gift from God, altho I'll pass on the beer and substitute it with another gift from God....WINE!!  Cheers!

R.I.P. - Glenn Fry

Donna~
cakelady's picture
cakelady
Posts: 63
 Joined: Nov 2015
Feb 02, 2016 - 1:04 am

Your post made me cry. Good cry. I'm so happy for you.  Now maybe I won't need to offer my 'fattening up' services.

 

Congrats, Fox, so much, so many.
alice124's picture
alice124
Posts: 898
 Joined: Mar 2012
Feb 03, 2016 - 10:54 pm

and had to tell you I am thrilled that you and nivo have reunited. Know that Baltimore is rooting for a repeat peerformance!
Limelife50's picture
Limelife50
Posts: 476
 Joined: Nov 2011
Feb 04, 2016 - 9:04 pm

Yep beer pizza and a Harley what a life

Darron's picture
Darron
Posts: 310
 Joined: Jun 2013
Feb 15, 2016 - 9:05 pm

welcome back to the good stuff!

the one complaint I have about the Nivo trial has been the progression rules. GlD you are back!
danbren2's picture
danbren2
Posts: 311
 Joined: May 2013
Jan 19, 2016 - 10:44 am

Continuing Flying for us Fox, this is just another door that you are opening for all of us!!

                          Love to the greatest flyer!

                           Brenda
Pandabear1011
Posts: 123
 Joined: Jun 2014
Jan 19, 2016 - 1:41 pm

Just reading your posts make me happy. It is a warm, sunny day here in this part of Texas and I just have a really good feeling about your new treatment plan. Sending warm, sunny good vibes your way, Foxy!! Hugs, Panda
BDS's picture
BDS
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 Joined: Aug 2012
Jan 19, 2016 - 3:17 pm







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Just read your post, I am happy for you Fox. I wish you the best of luck in your return to treatment with Nivo. Believe me, I can really relate to dealing with the side effects of Votrient.  I glad your taste and appetite for pizza and beer have returned. Soon you will be getting your “fat” jeans out of the attic. Smile LOL –Take care - BDS   
Jan4you's picture
Jan4you
Posts: 1326
 Joined: Oct 2013
Jan 19, 2016 - 5:08 pm

Hey hey EASY RIDER!! Glad to hear you are feeling so much better. AND you can play guitar again?

WHOO HOOOO!!!!!!

I am so happy I have tears!! So well deserved my dear Foxy~

Hugs, Jan
Bellweather
Posts: 100
 Joined: Jun 2013
Jan 21, 2016 - 6:14 pm

AWESOME, Keep us posted, as if I had to ask lol
Dave418's picture
Dave418
Posts: 95
 Joined: Aug 2014
Jan 22, 2016 - 11:08 am

WOW, that's what i call optimism and confidence!! LIKE IT!!!!!!

Dave
Footstomper's picture
Footstomper
Posts: 1238
 Joined: Dec 2014
Feb 01, 2016 - 4:50 pm

Congratlations to an inpiration! I have a scan next week and I get the distinct impression that my Doc wants the mets to grow so that he can take me off the trial and put me on the Nivowhateveritscalledab. Quite simply it sounds like the dogs bollocks as far as cancer treatment goes
APny's picture
APny
Posts: 1992
 Joined: Mar 2014
Feb 01, 2016 - 6:06 pm

That sounds fantastic and I'm so thrilled to read this, Fox. I'm also glad you didn't sell that Harley :)
Jojo61's picture
Jojo61
Posts: 1310
 Joined: Oct 2013
Feb 01, 2016 - 9:40 pm

Foxy, your reports just keep improving! That makes us all want to celebrate along with you! Beer and all!

And the way the weathr is going, you will be able to ride your bike sooner than you think!

Salud!!

Jojo
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