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cabo, the update.

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

Well, I've completed 6 months of nivo infusions with some radiation. Unfortunately the results are less desirable than anticipated. So within a couple weeks it is back to the TKI  approach to my care. Maybe I'll learn to like diarrhea and nausea this time. I've had growth in strange areas. Including in  my left brachial cephalic vein. I'll see what the vascular surgeon says. The good news is that my pain levels have significantly been reduced. Numbness and feelings of being tased that shoot down my arms are also diminishing. I see my radiation oncologist weds. and maybe he can give it another shot. The bad news is that after 5 years of treatments, I keep developing secondary issues like clots, and afib. It is weird because I am so damn healthy.

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

Tough results. But carry on being healthy and dont forget to buy those moist towelettes!

Airie
Posts: 45
Joined: Mar 2016

So sorry for the new growths Fox especially since you've been feeling so good! This cancer sucks so bad! I have a friend who told me "at least you don't have a portal only a pill" etc.  WTF? I wanted to say. No portal but the side effects are just as toxic! If you aren't in this you just don't get it. I'm on the way to pharmacy now for more udder cream due continued feet sores. This is our life.So thankful we have this post. We're here for you!!

Please keep us updated. 

 

Pandabear1011
Posts: 123
Joined: Jun 2014

Dear Fox...I am so sorry to hear about the progression with the Nivo. Hoping you have good luck with the Cabo and that the side effects, if any, are mild. Stay strong! Always sending you good karma...Panda

 

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

Fox, sorry to hear about news.  Indeed, hope there is some more good news coming along.  All the best with your appointments this week. 

As for learning to like diarrhea and nausea... The Victor Valley Wastewater Reclamation Authority has a mascot named Mr. Dingle (Yes, he's what you think he is). They have an energy generating plant that uses poop in its processing, too.  Every time you flush the toilet, they say that they are very appreciative (assuming you live in the VVWRA service area).  Also, people have gone more than just a little overboard with the plushie craze and you can get a stuffed plushie in the form of happy poop, angry poop... the options are endless (Even unicorn poop -- that's my favorite). Also, slippers that are happy poop.  As for vomit, that too -- Plushies, key rings....  Who knew? 

All it takes is some key words googled.  Starting with "plush" and "poop" the world is your... um... your...

Jerzy

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

fell over laughing!

pamstayner's picture
pamstayner
Posts: 111
Joined: Apr 2014

That's all I'm gonna say right now Fox.

On second thought, no, I'm adding this. . . . Nivo was good, for you.  you feel well because you ARE doing good Fox, the karma will stay with you , and side effects WILL NOT wear you away any more.. Cancer be dammed.. Scans be dammed... You are bigger than any new spots that creep in on you. Get the new stuff, suck it in and fly some more.

APny's picture
APny
Posts: 1987
Joined: Mar 2014

If anyone can handle this you can. I agree with Pamstayner, you're bigger than any new adverse developments and will kick their butts. Hugs and best xo

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

wonderfull things going on for you Fox.  Im very sad this new treatment did not give the expected results but I too join in what Pamstayner, APny and the rest have said here.  You can do this, you will.  Sending all the good karma and good vibes you so very much deserve!  Tons of loving thoughts going your way.

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

I'm sorry Fox.  I'll be praying for you and sending the good karma & vibes your way as well.  Gotta hit it with everything we've got, right?

Carry on Sir...

Donna~

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

I just hope it doesn't screw up this summer.

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

Fox, thank you for the laugh. 

Just before I was diagnosed with the most-likely-malignant kidney tumor, I decided maybe I'd get the courage together to get back in circulation. I'd even discussed possible strategies with my daughter, which was every bit as weird as it sounded. I figured she'd done this since I had, plus she did have some very sensible unscary ideas to help me to figure out if certain persons were even interested. We were only discussing my hanging out with friends, possibly determining interest (NOT going out, etc).

Anyway, when I called her with the cancer news, she was appropriately concerned, offered help in any way she could, etc. I ended the conversation by saying, "The worst part is, this is going to REALLY screw up the whole dating thing." Yeah, we both thought it was pretty funny.

So, your summer thing, Fox? All I could think of was, "Round of golf? Bike? Get together? Sorry, I might be having a cancer treatment procedure, puking my guts out, in the hospital, stuck in the bathroom, ditzy all get-out, or binge-watching a sitcom I can't even remember name of. How flexible is your schedule?" And there's nothing but a dust cloud to mark the enquirer's escape route.

Here's to a not totally screwed up summer, Fox -- !

Jerzy

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

I don't have to say never give up, cause you never will!  Sending strength, hope, love, karma, and anything else that will help!

                                           Brenda

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

You are one tough dude.  I don't know if you have ever been called a dude.  I don't know if I've ever called anyone a dude.    Anybody else might decide to hang it up, but you keep taking on the beast no matter what he dishes out.  At least they keep adding drugs to the arsenal.  I do hope the side effects won't be too bad for you.  For me, immodium and lomotil often help but not 100%.   I am really glad to hear that you are feeling better.  I hope you are taking advantage of it.  Keep us posted.

Kathy

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

He's definately a dude, but I reckon you're a pretty tough dudette yourself, from what I've read over the years

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

It does. This disease does.

Sending you good vibrations and good wishes Fox.

Hugs,

Todd

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

I keep seeing new doctors. They are always impressed when comparing me with my chart. So now I tell them to treat the man, not the medical record. I have a lot to consider. The cabo will cost $4K a month. I won't do that. So far the financial assist programs can't help as they are out of money. My wife will negotiate a deal with someone somehow. Anyway, I'm getting a couple weeks or so of NO cancer drugs. Yeah! ....and the beat goes on.......

Srashedb
Posts: 482
Joined: Dec 2013

Fox: just happened to read SP yesterday and there is a member who has had mets for the last 5 years with CT scans every th months. Sometimes there is growth, sometimes not but he has chosen not to take any of the meds.

he is doing well; so, I wonder, if you chose to not take meds, if it would not be the same; none of the meds cure and all of them will work but then stop. And, is this "working " and then "stopping " something that will occur with and without meds once it becomes stage 4.

just a thought...

Sarah

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

Foxy! Don't know what to say! Not happy! But, one thing i do know, your positive attitude will keep you going!  How about trying a combination of drugs? Maybe the Nivo and the Votrient? What are the newer drugs on the market?   Let's see what the radiologist can do.  Keep going after new treatments. What about the one where they take your cells and make an antidote and put the cells back in? Also, they are doing trials with measles injections, have you seen those?  They insert the measles into your body and your immune system starts to fight it and kills the tumors.  I saw an interview online about that.  Whatever way it goes, i am sure you will come out on top!  Glad you are feeling well.. Ride smooth! Love ya!.. Ange

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

Arent they doing that at NIH

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

I've had great luck since diagnosed. Especially getting nivo as my first treatment.Still can't get over the fact that it didn't work this time. The guys who do the stents suggest no intervention. They think the tumor blockage in my rt. brach/cephalic vein has been there a while and it hasn't killed me yet. He actually said that I am still alive because I'm so active. I've developed collateral vascularzation.We know that won't change. It won't be the cancer that takes me out. It will be a complication.

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

Fox,  I have been offline for awhile and I read this.  All I can say is you have heard worse before, and you have proven that you can beat the odds.  Please continue to demonstrate the same determination and luck that we all know and love you for. 

Do take care my friend.   Jack 

 

sledhead
Posts: 11
Joined: Dec 2014

Fox, what about adding ipi to the mix? My insurance denied me but I was able to get BMS to pay for it (if/when I need it) after only a week or two. My understanding is that although there can be higher toxicities associated with the combo it can double the response rates and if you have handled nivo well then maybe it's worth a shot.

At any rate good luck with the Cabo and keep on truckin.

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