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foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Being admitted today for the Il-2. Maybe I can post during the week. (if I can get on). I'll let you know how I'm doing when I can. I'm in a kick ass mood.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I thought it was cool!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Like us, its carbon based

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

to think that I am made of pizza and beer.

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

You are an inspiration to us all. It's so good to see you're back and I pray you will have good results.

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Fox..... I had no idea that you were going on the IL-2 ride.  Good times!  Yes, wild and crazy stuff.  I had some of the crazys with my first week but not so much with my second.  I did have more of the emotional thing on the last couple of days of the second week.   Like David, I found the second week different but a little harder.  Also, I was not expecting that it would take me more time to recover the second time around. It took me a couple of weeks just to get my thought process back to 100%.   I am just starting to feel like myself. (about 6 weeks later.)  The itching thing was worst and lasted about 3 weeks this last time compared to 1 week the first.  This too shall pass. 

Thank you for capturing some of the process.  I know it was difficult.  For me, I just did not want to talk about it when I got home.  Just wanted to heal.  It is strange how all the tough stuff in the hospital seems to fade quickly and readys you for next round.

Feeling pretty good this week.  And yes, we do what we have to do.  You will be back to your old self in no time ready to jump on the IL-2 ride once again.  IL-2 kicks cancer butt!

Lotion, Lotion, Lotion..

 

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

so much Faithlou. I may be crazy but I don't like being insane. Tough day today.  Going back in monday.

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

to be allowed to share in your journey.  Much of my treatment is a fuzzy blur.  I remember the rigors and the comfort of the Demerol.  I remember the slow task of filling the output urinal. The waiting for the creatinine report to see if I could continue. I remember the dry heaves. Thank goodness the memory dulls it all after time.  I hope this for you as well Fox. And you will return....because in the end... we fight not so much for ourselves but for those we love.  No prisoners!

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Wow..!  Fox, so glad to hear  from you...  I hope and pray that the treatments prove successful..  Reading your story put tears in my eyes and yet I want you to know that you have enriched me (us) for telling it "like it is".  No sugar coating here..  Be well my friend.. thrive and survive and then get back on and ride...

Ron

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

Let the second IL-2 round be gentler on you than the first one. Let your nurses be attentive and smart and your insurance be all-inclusive. And no more tigers in a tree.

===========================================================================================

A handsome young lad went into the hospital for some minor surgery and the day after the procedure, a friend stopped by to see how the guy was doing.

The friend was amazed at the number of Nurses who entered the room in short intervals with refreshments, offers to fluff his pillows, make the bed, give back rubs, etc.

"Why all the attention ?" the friend asked. "You look fine to me."

"I know !" grinned the patient. "But the Nurses kinda formed a little fan club when they all heard that my circumcision required twenty-seven stitches."

==============================================================================================

Two doctors were in a hospital hallway one day complaining about Nurse Jenny.

"She's incredibly dumb. She does everything absolutely backwards", said one doctor.

"Just last week, I told her to give a patient 2 milligrams of Percocet every 10 hours. She gave him 10 milligrams every 2 hours. He nearly died on us!"

The second doctor said, "That's nothing. Earlier this week, I told her to give a patient an enema every 24 hours. She tried to give him 24 enemas in one hour! The guy nearly exploded!"

Suddenly, they hear a blood-curdling scream from down the hall.

"Oh my gosh!" said the first doctor, "I just realized I told Nurse Jenny to prick Mr. Smith's boil!"

============================================================================================

A new intern is getting a tour of the hospital he will be working in.

He walks past a room where a man is vigorously masturbating non-stop, and asks the doctor why was the man doing such a thing out in the open?

The doctor replies, "Oh he has a medical condition where the sperm builds up so quickly in his body, he has to masturbate constantly or he will explode."

"Oh, I see," says the intern.

They walk past another room where the intern sees a man laying on a stretcher getting a blow job from a nurse.

Again, he asks the doctor "What's up with that?"

The doctor says, "Same condition, better medical plan."

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

You're so totally uninhibited Alex, that I wonder if, short of a special silo (or limiting some sorts of humour to Gary's dedicated threads where everyone knows almost anything goes) you should attach a sensibility alert to some of your postings!  Some of us here will be splitting our sides over your invariably brilliantly told jokes but I fear there are many whose sense of decorum may find some of it too distasteful?  Just a thought.

You've a good memory and a great talent for cutting to the chase as well.  What you've just said to Fox is so appropriate that I almost said that you took the words out of my mouth but, in fact, I don't think I could have matched your eloquence.  I think it unlikely that anyone else will put it better than you just have, but there will be many wanting to give voice to the same sentiments and for those who don't get here in time before Fox is back in again, you're speaking for the horde of his admireres who'll be wanting the very best for him in the next round, because: ELF - we're all thinking of you, man, and praying for everything to go well.

Djinnie's picture
Djinnie
Posts: 751
Joined: Apr 2013

Wow!! Fox, true grit does not come close in describing you. I pray for your treatment to be 100% successful. I hope all goes well for you tomorrow.

 

Djinnie x

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

In spades!

You'll be at the top of my prayer/warm fuzzy/positive energy lists this entire week.

You are a powerful, strong willed man. We'll be here waiting!

Warmly,

Michael

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Foxster... just sing a bit.. and pass the time....  "I don't want a pickle.. jus wanna ride my motor sickle...  Ya gotta sing it with such enthusiasm..  like you just squashed a cop..."...  :) that line always makes me smile...  Now go kick butt..!   Holler back at us when you can... while us wussies sit here and wait... and tell dirty jokes..  :)

Ron

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

My sincere apologies to anyone offended by "below-the-belt" humour. Embarassed 

Luckily my upcoming tattoo is safely tucked in the Ovarian locker room http://csn.cancer.org/node/261234. Wedge, DO NOT follow this link.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

 

 

oh my Alexandra... Yes I looked at that tattoo picture.. That poem about you fits here as well. Ron

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

I have no problem with you Alex,so now a question is sex as good now as it was before,just thought i would ask.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

You'll slam it this week fox...you know what to expect...keep a picture of your grandaughters near by as a reminder of why you are doing this...every ounce of good karma we can scrape together here is on its way...ROCK ON my brother!

 

Alex, you keep stretching the boundaries and I'll try to keep up (no small task I betcha!!!)

jimpeg
Posts: 7
Joined: Jul 2013

Hang in there - it punches but you can  hang in there - stay in the ring it is worth it!

 

Peggy & Jim

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Peg and Jim - seems as if you've picked up a sense of community here pretty fast? 

Of course this forum is devoted exclusively to kidney cancer (as K-O was) with a few interlopers from other CSN forums whom we're happy to welcome.   Less scholarly here but very friendly and a good sense of fun as well as abundant reciprocal support. Horses for courses - hope you'll enjoy time spent here.

NanaLou
Posts: 67
Joined: Oct 2011

I have just read this thread. Best wishes to ya. I hope it goes by fast for you, and you get  just enough to kick cancers butt good bye. I know how hard it is and am so glad it is behind me. The first time was the worst for the mind games it plays. I was foggy each time in.  I threw-up all six times , all the way through.  I think the dihera got worse each time. I took Depends with me my last three times in. It was pretty bad messing up the bed in the middle of the night and having to sit up waiting for them to change the bedding. My eyes would water after leaving the hospital. I took benydrl. Hope all goes well. Just keep your eye on the cure and keep thinking it will be over soon. I kept thinking I will be okay next week this time.

Much love,

NanaLou

 

  

I am alive
Posts: 212
Joined: Jul 2012

Fox,

I haven't prowled around this site for a while and was SHOCKED to discover that you've moved onto IL2. Going for the gold, as usual. Many thanks for your blow-by-blow account of the experience. Your very personal description educates the rest of us, many of whom are contemplating the IL2 plunge, in a way that mere facts can't. You are brave and ornery - two excellent characteristics with which to cloak yourself in battle. And it's reassuring - isn't it? - to think of all your CSN friends who have weathered this particular hell. There is an end in sight. Here's hoping you can float through this experience in a Zen bubble, if you know what I mean. Sending you  love and light. Go Fox!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Great post, Peg.  You've been conspicuously missing here for a long time - please don't become a stranger.  Your posts are always worth reading.  Where are you currently, trial-wise?  You're an outlier (like me) on a different path from virtually everyone else (except, I suppose, some people on the same trial as you) so your experience is going to be interesting and informative for everyone.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It's approaching 9 a.m. now in Scotland so I calculate there's still time for you guys Statesside to wish good luck to the man made of pizza and beer (and a hell of a lot of steel too, if you ask me) before he goes in to do battle again.

It'll be easier this week, Fox, now you know what the opposition's got, but don't keep posting at the cost of your energy for the fight (though I must admit we'll all be dying to catch any snippets about how it's going!).

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Wait a minute.. after all the crap Fox went through.. not much mentioned of the nurses...  :)   Hope this week is easier than last week Mr Foxster..!

Ron

I am alive
Posts: 212
Joined: Jul 2012

Hey Tex! Thanks for the inquiry. We outliers do need to keep the torches lit for others following our path. The end of Fox's 18-month run in the MDX trial was a sobering reminder of the inevitable wall we all will hit at some point in any of these trials. I celebrated my 1-year anniversary this month in the non-clear cell trial of Avastin & Afinitor at Memorial Sloan Kettering (Dx with chromophobe RCC in '04, mets surgically removed in '08, radiation to small bone met 12-11,  drug trial began 7-13, kyphoplasty to relieve vertebral fracture pain 5-11) I am happy to report that I feel pretty damn great, all things considered. Since the first of the year my numbers have started to climb - tryglycerides, cholesterol, BP - and I have started using the various drugs to control them, sometimes with their own sideffects to deal with. I am currently  changing BP meds, for instance, because of swelling in one foot and leg. Went to the E.R this weekend for an ultrasound of the leg to rule out a blot clot. No clot! As Rosanne Roseanadada (SNL Gilda Radner fans, anyone?) used to day, "It's always something." But I feel so good, with so much energy, and am so happy, generally, that it's easy sometimes to forget the dire situation I'm really in. I've lost 16 pounds, which is really kind of thrilling because now I'm down to the weight I used to be in my 20s. Size 2, ladies. Yes! An excellent excuse to run out and buy new hip clothes! Is it silly to think this party will go on forever? I am amazed sometimes at how innately hopeful the human spirit is.  It's not that we don't understand the reality we're in. I just think that as a species we are programmed to survive and our instinct is to keep moving forward, keep seeking out the light, keep the dance in motion. And how can that be bad? I am humbled by the brilliant doctors and researchers, and the awesomely compassionate and capable nurses and technicians I have come into contact with. They make me hopeful for all of us. Bottom line: today is a good day. I'm going to enjoy the heck out of it. Tomorrow? I will deal with that when it comes.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Very good to hear from you again, we can all learn from your example.  Now don;t be such a stranger, we need you!!!

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Here I sit a half hour away from the first infusion. I'd rather be drinking beer, eating pizza, golfing or riding my bike. But many years ahead to do that. Over and out. No one needs to hear from a guy who goes psycho for the next week or so. FLY.

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Oh yes we do need to hear from you!  Check in whenever you feel up to it.  You are going to rock this second week!!!

NewDay's picture
NewDay
Posts: 166
Joined: May 2012

Hi Fox,

I guess you have survived your first treatment by now.  Hopefully, the IL-2 will torture the cancer more than it does you this time around.  At least when it gets bad this time, you know there's a light at the end of the tunnel.

 

Love ya,

Kathy

Galrim's picture
Galrim
Posts: 267
Joined: Apr 2013

 And thats really all there is to say...

/G

angec's picture
angec
Posts: 614
Joined: Mar 2012

Physco?  Not you Foxie!  I hope and pray this week was easier on you, though I fear not! You take care of yourself and write only when you can. Just know that we are all praying for you and i have said a looooooooooong pray for you!  Keep up the fight!  XXOO

 

Nice to hear  you are doing well Peg, you have been missed! You take care and be sure to be on top of that bp med, it does have alot of bad side affects, my mom also had to get off of it due to ankle swelling and her breathing, neasus and headaches.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hi Peg,

Happy one year anniversary belatedly. It's so good to hear from you. I always enjoy reading your posts and you've been missed.

Happy to hear you are feeling so well, but I am a little envious of the size 2 Frown. I've never been a size 2. My gorgeous 20 year old niece is a size 2 though; you two need to meet at the beach! I refuse to go with her these days. She looks too damn good!

Keep that wonderful, upbeat positive attitude. You are a walking testament to "the harder you fall, the higher you bounce"!

 

(P.S. Thanks for that Rosanne Roseanadada  Gilda Radner flashback. Loved her!)

 

 

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012
GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

And here I was hoping it would be G-String rated...  :)  Go Fox Go..!!

Ron

I am alive
Posts: 212
Joined: Jul 2012

Alice,

  Beach? Oh my goodness those days are way way behind me. Folks here in the Keystone State tend to go about their day fully clothed and I, for one, am grateful! 

  Re my current foot & leg swelling, for the record, I found out today that everolimus (Afinitor) can cause this swelling and it is not uncommon to experience it in one appendage, as opposed to two. Once you rule out blood clot there's no real need to break a sweat about it (although my onc did recommend against flying coach across the Atlantic - he basically said fly business class with extra leg room or stay home). My cardiologist (yep,got one of those on board this spring) had become concerned because swelling in only one  foot/leg can be a symptom of deep vein thrombosis (DVT) or blood clot. He was correct. But this is an example of someone not familiar with cancer drugs who didn't recognize that it is also a possible side effect of one of them. I'm still changing my BP med though because the one I was using - amlodipine (Norvasc) - can also cause swelling and - who knows? - may actually be the culprit. Ever get the feeling we now are all involved it a giant invisible Rubrik's Cube? Click, click, click.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

There's such a wealth of writing talent here.  As Alice said, you're always a good read (and that's high praise, coming from Alice). I love the metaphors you come up with, Peg, and yes to the Rubik's cube! [As a bit of lateral thinking here - maybe we need more kids working on cancer cures at a really early age!?  The neural plasticity of childhood, which we all lose as we age, accounts for the ease with which kids make fools of us oldies on the Rubik front.  We are seeing some brilliant school kids (Angela Zhang is just one who comes to mind) making huge contributions now to the cancer research and treatment world and we can hope for a great deal more, I believe.]

Your reference to "someone not familiar with cancer drugs" needs to be taken on board by some folks on other current threads here, where there's failure to realise how little it's possible, in this day and age, for a medical specialist to know outside their own little patch.   We see alarm and despondency caused, and bad advice given, on the basis of this ignorance.

I headed this post "Amlodipine" for good reason.  I'm only a patient but I fear most doctors aren't that much better off than I am in their knowledge of the side-effects of BP meds, unless it's a central part of their practice.   I don't know whether you've picked up my near obsession with Amlodipine - did you contribute to the Conversation on SP about it?  I forget.  That drug is fine for some people (how many, I wonder though) and I seem to recall that Ron is one such.  For me it was the worst med I've ever had and one I won't ever go near again!  I got a late-manifesting allergic response that was detected by sheer chance and could have been fatal.  However, I also found, by elimination, that many nasty side-effects that I was ascribing to Votrient or other things I was taking were due to Amlodipine, one being arthritic joint pains.  As soon as I got switched to other BP meds I was a whole lot better. 

Someone on SP, who was having a similar experience, took the trouble to analyse which BP meds most there had problems with and concluded that Amlodipine was the clear standout culprit.  From Ben Goldacre's book "Bad Pharma" one learns about the murky circumstances in which it got original approval and I, for one, would like to see it taken off the market - there are plenty of excellent alternatives and for me it didn't even do the job it was supposed to - the BP control was ineffective.

Good, glad I got that off my chest - feeling better already!!  I hope you're feeling better soon, too, Peg and that the leg swelling goes down. 

 

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I'm thinking about you and sending good vibes.

EYE ON THE PRIZE, hang in there!

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Thinking about you today..hoping things went better for you this time around.  Rest up and let us know when you are ready to chatt.  It may take you a little longer for you to recover this time... but you will feel better soon!

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

WOW! What a tough trip this stuff is. But this time it was not as bad as the first. I held my mind together. Skin? That's another issue. Or is it tisuue? I beter not committ any crimes cuz any dog coulds follow my trail. Flakes here, chunks there. My face has been so refreshed that I look like I'm 12 again. "cept the whiskers.

Only 6 infusions again. Creatine up to 2.8 and urine stopped flowing for about 24 hours. Thankfully. I was ready for more but had no problem saying OK.

Can't understand how some of you can do 14 infusions. Do we get the same dose? I heard them confirm my dose was 600 million units. Does that sound right?

Very tired. I'll need time to catch up with all the posts. Now, we wait and see.

FLY! Fox loves ya!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Sorry you are facing  this, but at the same time, I'm glad its here for you!

You sound more up and energetic this time and thats a heartening sign!

Keep standing strong Fox my man!

Pax!

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

I am so glad that you are back Fox and you got a free chemical peel too. Rest up.

Here's what I found about the IL-2 dosage. It also has a built-in calculator.

http://reference.medscape.com/drug/interleukin-2-proleukin-aldesleukin-342203

Metastatic Renal Cell Carcinoma, Metastatic Melanoma

600,000 International Units/kg (0.037 mg/kg) IV over 15 minutes q 8hr x maximum 14 doses, THEN  9 days of rest, then a maximum of 14 more doses

Retreatment: evaluate after 4 weeks, advisable only if tumor shrinkage & no retreatment contraindications

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Like the general said in Apocalypse Now.... "Son if you eat those shrimp you'll never need to prove your manhood in any other way!"  Seems like IL-2 is pretty much the same thing.  And I can't believe that the way it attacks the body, that it isn't doing SOMETHING to the disease.  No prisoners!

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

I'm so glad to see you posting again!  I didn't figure you would let that crap beat you up too bad!  And like Alex said, you got a new complexion out of the deal!  Women pay big bucks for that every day!  Welcome back.

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Happy to see that you made it back from the other side. Cool

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Ah... I (and others) were waiting to hear from you..!  Glad the deed is over for now..!   So, my mind is the shits at time.. and while on the Loo a bit ago.. I read your brief comment..  So I wrote this little parady...  based on the Beatles song The Tax Man... (I am back in to the olde music again..)  Here is part of it....

Welcome back Fox Dude..!!  Ron

 

Let me tell you how it will be...

One pill for you nineteen for me.

Cause I'm the Fox Man... yea I'm the Fox Man...

 

Should that one pill appear too small,

Be thankful I don't take them all..

Cause I'm the Fox Man... yea I'm the Fox Man...

 

 

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Let me tell you how it will be...

One DOSE for you nineteen for me.

Cause I'm the Fox Man... yea I'm the Fox Man...

 

Should that one DOSE appear too small,

Be thankful I don't take them all..

Cause I'm the Fox Man... yea I'm the Fox Man...

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I've been following your posts and am glad you're finished. Keeping my fingers crossed for you! When do you get a scan? Are you done with IL2 or will there be more? I'm not familiar with how this works. 

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Home for several days. Really just getting going. Sleeping alot. Peeling like a zombie. Diarrhea, upset stomach. Haven't even turned on computer for a day or so. What doesn't kill you makes you stronger right? Probably down 10-15 pounds of muscle mass. Wrinkled like a prune. I've got to say it again with utmost respect, How on earth could some of you do 12-14 doses? First round broke me mentally and physically. This time it broke me physically. Kidney and liver were shutting down. They even put me on a couple psych meds. I don't think I need them but if it helps with recovery, I'll do it.

Everyone, thanks so much for your concerns, support, and interest in my escapades. Love you Alex. It's not like you don't have your own issues. I'll need some more time to address so many posts but I'll catch up with my own brand of encouragement and humor. Just cut me a little slack. I don't mean to be so ego centric.

Fox loves you.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Hang tough Amigo!  I can't feature what hell you are experiencing.

It is that egocentrism (positive dynamic attitude is the way I would describe it) you worry about is one of the keys to your successful completion of this.  Keep the attitude and kick this cancer's ass!

 

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

This has been the longest thread ever outside of two general discussions of Votrient and Nephrectomy. This is how much everybody loves Fox.

You talking about wrinkles reminded me the most romantic quote from "Airplane!" http://www.rpmswavs.com/airplane/wrinkleit.wav

Rest up, get your strength back and then let's go riding and drinking beer before summer is over. With Mrs Fox's written permission of course... Smile

BEER

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