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Winter of Fox? Really?

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

Ok, Results are in. It still just blows my mind that the nivo didn't work. Anyway radiation and cabozantinib on the other hand work real good. I think that I mentioned that I am currently painless. Radiation needs to not scare people so much. Lately the radiation has whippped me out. Almost like a milder IL-2. But it has worked every time. We've stopped tumors and pain in their tracks. A couple /three weeks later I forget about all of it It is history. Nice. The cabo has reduced most soft  tissue mets by 50% Everything under a cm. Then no mention of any clots or tumors growing toward my heart. I told them up front that they would disappear and guess what? And my heart echo still shows a runners heart. They tell me to start running again any time I want to. Yeah, I know. I'm an old man now. But wouldn't it be a hoot to train and do a 5K with my daughter? We last raced together 30 years ago. Too bad winter is coming because I can't stand the cold anymore and I also don't want to fall. However a new problem has developed that needs it's own thread.

FLY!!! We do this together. We need to support and cheer each other on so that we know we can still live good lives.

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

Happy to hear you are doing better.  Pain free?....that's awesome.  Sounds like you've been given the green light on adventure.  Winter is sneaking up on us soon enough here too in Illinois and not looking forward to it at all.  Not my favorite season, not a fan of the cold.  And I'm little fearful this year because I walk the trails everyday with my pup and lately I've been seeing wooly willy's.  It's pretty early for that and the squirrels have been going crazy burying nuts too. 

Hope you have many great days ahead.

Donna~

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

you are always so supportive and nice to everyone. Thanks.

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

Sounds great! Certainly better than a winter of discontent. I'll keep my faith in Nivomulab and hope for the Abscopal Effect.

Donna, I hesitate to ask, but what exactly is a "wooly willy"?

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

They are dark, almost black, really furry caterpillars.  :-)

Donna~

stub1969's picture
stub1969
Posts: 855
Joined: Jul 2016

Start training, Fox--I'll run one with you!  It's like riding a bike; your body won't forget. 

Stub

Jan4you's picture
Jan4you
Posts: 1325
Joined: Oct 2013

Okay there is not only Foxy-sexy, loving, supportive-caring man, we have RUNNING MAN!!!

Only luv you more!

Hugs, Jan

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

Was always a middle of the pack runner. Always somewhere in the middle third. I met a lot of great health minde d people and I always like living in concurrent cultures. Health professional, biker, golfer, guitar player, runner and weight trainer. Different groups of people dedicated to special interests. Of course the most important one is with you guys. We do this together.

Jan, runners can go the distance....When I was circling the drain a couple years back, being able to hang on just a little longer and not letting go, was from runners traing. There is no doubt  about it. I had trained to exceed normal tolerence. And it saved me. That is why I can still be here to flirt with you.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

You got this. Pizza and beer for all. . . 

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

Fantastic news! Might i add that i knew it would go this way! Great meds and a wonderful attitude equal success! If TW were here, he would remind you that you are our poster boy!  What is the new development? ELF

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

As my pain disappeared after radiaion, I decreased my opiates too quickly. So I am finishing withdrawl now. Even at low dose of oxy, 1-3 pills day, it was the duration of time I have been taking them. I was feeling wired and couldn't put my finger on it. I'm glad we figured that out.

All I really know is that these brief periods of good health reports don't last. I want to get the most out of the coming weeks before the other shoe drops. So far so many shoes have dropped, it is like a bare foot centipede.

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

I just saw this one after i posted on a later post. You know, withdrawal can cause fast heart beat as well.  I hope it is passing now, usually it can take two weeks or so, but if you are still on the pills it shouldn't be that bad the withdrawal.  Hopefully!  Hang in there, Fox!  You got this!  Hugs!

Bellweather
Posts: 100
Joined: Jun 2013

I have a guest cottage on the MS Gulf Coast, you are welcome anytime.  Pleasant weather most of the year, Just let me know and we will set it up, sleeps 6, 2 queens and two singles.  New Orleans is 55 min. to the West.

donna_lee's picture
donna_lee
Posts: 950
Joined: Feb 2009

and we'll set the finish line waaaaaaay out in the future.  Like Infinity and beyond.  Glad to hear things are better and you at least feel like you might run a 5K.

I could ship my 10 year old granddaughter to you; she finished 27th out of over 100 in the Prefontaine for Kids run 3K last month.  And she doesn't even train for running.

No checkered flags here.

Love,

donna_lee

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Haven't logged in here in a few weeks. So glad to see good news Fox!

Can you find somewhere to train indoors?

Todd

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

I'm far from that healthy.  And ned will never happen. So I'll hold on the running for now. Remember, I've taken a beating the last few years. I think I'll be happy if I just remain stable for awhile. There is still that something that I can't express but I am far from what I consider normal. It's got to be the radiation and withdrawl. We'll see. Another week or two.

Bell, WOW! Someday I'll get down there. Awesome offer. Thanx.

Srashedb
Posts: 482
Joined: Dec 2013

Fox:

great news about good scans; yesterday, Smart Patients had a link with results to Cabo and lengthy progression-free in stage 4 renal cancer.

it is very, very promising and appears better than any drugs currently used.

Sarah

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

Not sure how active you've been lately, Fox, but those "Couch to 5K" (or 10K) training schedules always make me figure I actually manage them. My 5Ks and 10Ks have mostly been walking, hiking, swimming or cycling. I run downhill, on the flat, and when pursued by a mama bear after erroneously walking between her and her cubs. Aside from the last situation (which I'm sure was a personal best, but nobody started the clock), my running times tend to be miserable.

However, should you start to train for a 5K, I promise to train, too, and not to whine (much). Maybe I can even get my daughter interested. That would be cool.

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

JG, I have continued to play golf. Actually always walked until a few weeks ago. I think it might be easier for me to hit the weights this winter and wait for spring to jog. Doing a future 5K is an awesome goal but I'm not strong enough to do it safely yet.

APny's picture
APny
Posts: 1982
Joined: Mar 2014

Pain free and doing well is wonderful news! I agree with post above... beer and pizza all around.

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

Oh how happy I am to find out your tumors have shrunk on the cabo. Get out there play golf and run. I want to dance again, it's not the same with my walker. lol So happy for you. My scans will be on the first. I am expecting the same good results you had. 

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

Rode in the cart and I'm exhausted. So, let's forget about running for awhile. My scans do show the clot and tumor at my heart. It was written on another page. Well as long as they don't cause problems. Anyway, it was gorgeous out there. Golf in New England.

mrou50
Posts: 389
Joined: Mar 2013

Time to get out the running shoes Fox, great news I am praying and hoping for a lot more good new for you brother.

Mark

rae_rae's picture
rae_rae
Posts: 300
Joined: Oct 2010

Hey Fox,

I am so happy to read how well you continue to do. I never had any doubt. Here's to Winter, Spring, Summer and Fall of Fox!

 

Hugs,

Rae 

Ree_Maryland's picture
Ree_Maryland
Posts: 158
Joined: May 2014

I am always encourged to see you on here and your outlook on the RCC. it has helped me to relax alittle and not dwell on the what iffs .glad you are at least better and ready to run .   Desi

LauraM3's picture
LauraM3
Posts: 27
Joined: Apr 2016

Glad you are doing well, my friend.  Cool

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hey Fox, during a recent break from Votrient, I felt like my physical prowess had returned - albiet temporarily. It was reassuring and uplifting to know the "old me" was still inside me.  I'm rooting for you to finish a run or other physical challege that you select.

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

Thanks Sarah, you've always back me up... Nice to see you Rae. You are looking healthy and happy. Keep it up... It's getting to be a long time isn't it Desi? We just keep on going...Thanks Laura, we aren't done yet. Hey rhom, I remember that feeling. Maybe someday when it gets close to check out time, I'll stop treatments also. I crave feeling like myself again.

However, another couple days in the hospital. Heart went wacko again. Tachycardia and a-fib again. Had to go by ambulance. I live near a congested area. The driver insisted she knew how to get to the closest cardiac hospital. About 25 miles and 25 min. later, she got there. She refused my input despite the hospital being only 7 miles away and like 12 minutes. She took me on a fall folliage run. My yard has a surveyors monument separating the 2 towns. She took me through 5 different towns. She must have been going nuts following a GPS that wasn't calibrated by quickest route. Oh well, it didn't turn out for the worse.

I'm ok but something is triggering thses episodes. Follow ups to come.

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

You keep yourself safe man. Keep a GPS on you at all times.

Srashedb
Posts: 482
Joined: Dec 2013

Fox: is there any specific info on the heart issue; is it cancer or something else? As for the Cabo, I have read that there are studies which show that using Cabo as a first line drug is more effective and less toxic producing long-term progression free time.

it seems that in the 3+ years that I have been involved with this cancer, there have been many changes in how meds are given and of course, Nivo. My husband is fortunate in having only cyber knife treatments and a partial adrenolectomy as treatment so that if we can hold this disease back, we may have better options. Maybe its wishful thinking but I have convinced him to reject votrient and xgeva; both offer some benefits but also a poorer quality of life. Of course, his mets have been amenable to radiation. He was offered radiation for the adrenal met but that had long-term impacts while the surgery has had none.

Strangely, just before getting here tonight, my friend told me she had been hospitalized for A-Fib; she doesn't have cancer.

Sarah

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

Definitely a crazy hospital run for sure. Glad your heart didn't go totally crazy (although I imagine the rest of you probably was). Maybe she works a couple of other jobs, tour guide, school bus driver, picks up the mail in the blue boxes. You're lucky she didn't show up driving a Duck. 

Hope they figure out what's making your heart act out. And soon. Would hate for you to have to go through a ride like that again and have the cops meet you at the hospital to charge you with car-jacking (and/or the FBI meet her there and charge her with kidnapping). 

Jerzy

firedude21
Posts: 52
Joined: Sep 2014

Fox -

Sorry to hear about your last issue. It seems that we are all on a rollercoaster ride that never stops. Hopefully you're feeling better now. Wishing you the best.

fd21

mrou50
Posts: 389
Joined: Mar 2013

Sorry to hear about the heart issues brother, stay strong and keep us posted.

Mark

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

Sorry to hear you aren't feeling too great! Any word yet on what is causing the AFIB/fast beat? I did hear that the Cabo can have that affect on the heart.  I knew a few other people who also developed fast rates.  Hope it is just a side affect that goes away and nothing else.  Praying for you and I know you are tough and will kick this to the curb also.  Let us  know how you are doing.  Love ya, Foxy! Ange

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

Im wishing things are picking up and we hear from you very soon!  Here for this short visit just to check on you.  I just had a second grandson last Sunday so kind of have been a bit busy!  Lots of love

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

And somehow missed this post. Foxy, so sorry for this latest challenge. Hope you are recovering nicely. That ambulance driver story is kind of funny....glad it didn't end badly!!

Take care of yourself! We love you!!

Hugs

Jojo

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