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Winter of Fox? Really?
 |
Oct 07, 2016 - 7:54 pm
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. |
Joined: Jan 2016
So happy for you Fox
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~
Joined: Oct 2011
donna
you are always so supportive and nice to everyone. Thanks.
Joined: Dec 2014
Winter of Fox
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"?
Joined: Jan 2016
Wooly Willy
They are dark, almost black, really furry caterpillars. :-)
Donna~
Joined: Jul 2016
5K
Start training, Fox--I'll run one with you! It's like riding a bike; your body won't forget.
Stub
Joined: Oct 2013
Okay there is not only Foxy
Okay there is not only Foxy-sexy, loving, supportive-caring man, we have RUNNING MAN!!!
Only luv you more!
Hugs, Jan
Joined: Oct 2011
Running
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.
Joined: Feb 2014
You're the man.
You got this. Pizza and beer for all. . .
Joined: Mar 2012
Fantastic news! Might i add
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
Joined: Oct 2011
ange
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.
Joined: Mar 2012
I just saw this one after i
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!
Joined: Jun 2013
Migrate South
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.
Joined: Feb 2009
Another day, another lap done
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
Joined: Dec 2012
Great news!
Haven't logged in here in a few weeks. So glad to see good news Fox!
Can you find somewhere to train indoors?
Todd
Joined: Oct 2011
It was only a thought
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.
Joined: Dec 2013
Cabo
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
Joined: Jun 2016
Not sure how active....
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.
Joined: Oct 2011
That would be cool
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.
Joined: Mar 2014
Pain free and doing well is
Pain free and doing well is wonderful news! I agree with post above... beer and pizza all around.
Joined: Feb 2016
Wonderful news Fox
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.
Joined: Oct 2011
golfed today
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.
Joined: Mar 2013
Happy For You
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
Joined: Oct 2010
Hey Fox,
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
Joined: May 2014
Fox
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
Joined: Apr 2016
Fox
Glad you are doing well, my friend.
Joined: Nov 2015
Yo!
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.
Joined: Oct 2011
Well, that's the good news.
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.
Joined: Dec 2014
Fox
You keep yourself safe man. Keep a GPS on you at all times.
Joined: Dec 2013
Heart issue
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
Joined: Jun 2016
Wow, Fox
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
Joined: Sep 2014
Fox -
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
Joined: Mar 2013
Fox
Sorry to hear about the heart issues brother, stay strong and keep us posted.
Mark
Joined: Mar 2012
Sorry to hear you aren't
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
Joined: Feb 2015
Came by to see how you are doing Fox
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
Joined: Oct 2013
I've been checking in sporadically
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