OK, I'm going in!
Comments
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Clear the ring - round 2Texas_wedge said:Bulletin
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.
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!).
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Wait...Texas_wedge said:Clear the ring - round 2
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!).
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
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Belated well wishes...Alexandra said:Good luck on Monday Fox!
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."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!!!)
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One year in and going strong
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.
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Great attitude...Great post...I am alive said:One year in and going strong
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.
Very good to hear from you again, we can all learn from your example. Now don;t be such a stranger, we need you!!!
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thanks again allgarym said:Great attitude...Great post...
Very good to hear from you again, we can all learn from your example. Now don;t be such a stranger, we need you!!!
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.
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Oh yes we do need to hearfoxhd said:thanks again all
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.
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!!!
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Hang in thereTillieSOK said:Oh yes we do need to hear
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!!!
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
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It's G-rated
http://www.youtube.com/watch?v=zarhI0hvYSw
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Gods speed to you Foxfoxhd said:thanks again all
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.
And thats really all there is to say...
/G
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Avastin & Affinitor TrialI am alive said:One year in and going strong
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.
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
. 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!)
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Thanks!
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.
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Amlodipine (Norvasc)I am alive said:Thanks!
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.
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.
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Physco? Not you Foxie! Ifoxhd said:thanks again all
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.
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.
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Back again!faithlou said:Thinking about you today..
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!
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!
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Fox Man..
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...
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Better..??GSRon said:Fox Man..
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...
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...
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