MDX -1106

foxhd
foxhd Member Posts: 3,181
Going for second infusion tomorrow. Next week it is another pet scan and biopsy. It has become a full time job. About 14 medical visits/blood draws in about 8 weeks... Had a case manager call me a week ago. I told her I was slowing down a bit and getting tired. She said she wasn't surprised. She wanted to know if I'm still transferring OK, and if I can still get into the shower by myself. I told her I do. But that was not what I meant by my slowing down.I told her that it takes me 2 more minutes to run my 3 miles! Had a good laugh. I told her she doesn't have to call me to often. Despite all, I'm doing great.
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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    MDX - 1106
    Excellent news. Maybe this drug is going to be just what you needed. Fingers crossed for the scan and biopsy results next week. How I wish I could run 3 miles, but if I stick to your advice perhaps it won't be too long before I can.

    Looking for the redeeming features of the situation we're in seems pretty important and I'll keep re-reading Kat's inspirational message. My Wife and I have upped our daily walk to 5 miles and our pace has picked up to around 2 1/2 m.p.h. We reached a lovely little Church a few miles from home a couple of days ago and found a Historic Scotland information board there which tells us that there has been a place of worship there, on the little knoll the Church stands on, since 700 A.D. It's almost on our doorstep but we didn't know that. It also made us resolve to go and look at the unique collection of Pictish stones housed in a little cottage museum nearby. Life can still be very good if you give it a chance.

    I wish you many more miles, many more showers, positive results next week and far fewer medical visits!
  • garym
    garym Member Posts: 1,647

    MDX - 1106
    Excellent news. Maybe this drug is going to be just what you needed. Fingers crossed for the scan and biopsy results next week. How I wish I could run 3 miles, but if I stick to your advice perhaps it won't be too long before I can.

    Looking for the redeeming features of the situation we're in seems pretty important and I'll keep re-reading Kat's inspirational message. My Wife and I have upped our daily walk to 5 miles and our pace has picked up to around 2 1/2 m.p.h. We reached a lovely little Church a few miles from home a couple of days ago and found a Historic Scotland information board there which tells us that there has been a place of worship there, on the little knoll the Church stands on, since 700 A.D. It's almost on our doorstep but we didn't know that. It also made us resolve to go and look at the unique collection of Pictish stones housed in a little cottage museum nearby. Life can still be very good if you give it a chance.

    I wish you many more miles, many more showers, positive results next week and far fewer medical visits!

    Good luck today...
    Fox,

    I'm with T as far as wishing I could run, but I'll stick with walking since there is a lot less pain in it for me. My regular walk is also 5 mi., but I'm a little quicker at around 4.3 mph. (4.5 when we don't have snow & ice). I know this is going to work, I can feel it in my bones, as they say. I'm pulling for you as hard as I can my friend!! Keep that sense of humor.

    Gary
  • foxhd
    foxhd Member Posts: 3,181
    garym said:

    Good luck today...
    Fox,

    I'm with T as far as wishing I could run, but I'll stick with walking since there is a lot less pain in it for me. My regular walk is also 5 mi., but I'm a little quicker at around 4.3 mph. (4.5 when we don't have snow & ice). I know this is going to work, I can feel it in my bones, as they say. I'm pulling for you as hard as I can my friend!! Keep that sense of humor.

    Gary

    MDX
    Thanx guys. Do not be impressed with my runs. I do train regularly, but when I'm in good shape, that is what most people are like when they do nothing. I guess after all this time I have learned to red line it. I am cutting down for the winter. Hate running in the cold. I'll do more weight training. ....... Had my infusion today. Nothing to it. Just like a regular I-V drip. How can something so easy be the magic bullet? Too many out here have suffered through treatments... Since this is a clinical trial, I am a ginney pig. But I feel extremely lucky to be in this trial. And I am optimistic. I have little fear. I've already booked two motorcycle camping trips for this summer. ( Which will be several months beyond than my october prognosis). People laugh when they see me and hear how active I am. I told an intern today to take a good look as I am going to be the poster child for a kidney cancer cure. I am not in denial of the severity of cancer. But damn, This is why I was accepted into this trial. I AM A SURVIVOR!! and they know it. Here is hoping that MDX-1106 will be the cure for all!
  • jhsu
    jhsu Member Posts: 80
    foxhd said:

    MDX
    Thanx guys. Do not be impressed with my runs. I do train regularly, but when I'm in good shape, that is what most people are like when they do nothing. I guess after all this time I have learned to red line it. I am cutting down for the winter. Hate running in the cold. I'll do more weight training. ....... Had my infusion today. Nothing to it. Just like a regular I-V drip. How can something so easy be the magic bullet? Too many out here have suffered through treatments... Since this is a clinical trial, I am a ginney pig. But I feel extremely lucky to be in this trial. And I am optimistic. I have little fear. I've already booked two motorcycle camping trips for this summer. ( Which will be several months beyond than my october prognosis). People laugh when they see me and hear how active I am. I told an intern today to take a good look as I am going to be the poster child for a kidney cancer cure. I am not in denial of the severity of cancer. But damn, This is why I was accepted into this trial. I AM A SURVIVOR!! and they know it. Here is hoping that MDX-1106 will be the cure for all!

    Keep us posted
    I was trying to get in for RAD001 (Everolimus / Afinitor) clinical trial when I got my recurrence with one nodule (0.9cm) met to the right lung back in 2009. It needed to be at least one met with nodules size larger than 1cm to be qualified. Had to pay the visits almost every other weeks to the medical center to take all that scans. I could feel my body glowed like a X-mas tree in the dark:-) A year later the nodule (still the only one) was large enough to get in the door, but I backed out the trial by surgical removed it instead.

    Jon
  • garym
    garym Member Posts: 1,647
    foxhd said:

    MDX
    Thanx guys. Do not be impressed with my runs. I do train regularly, but when I'm in good shape, that is what most people are like when they do nothing. I guess after all this time I have learned to red line it. I am cutting down for the winter. Hate running in the cold. I'll do more weight training. ....... Had my infusion today. Nothing to it. Just like a regular I-V drip. How can something so easy be the magic bullet? Too many out here have suffered through treatments... Since this is a clinical trial, I am a ginney pig. But I feel extremely lucky to be in this trial. And I am optimistic. I have little fear. I've already booked two motorcycle camping trips for this summer. ( Which will be several months beyond than my october prognosis). People laugh when they see me and hear how active I am. I told an intern today to take a good look as I am going to be the poster child for a kidney cancer cure. I am not in denial of the severity of cancer. But damn, This is why I was accepted into this trial. I AM A SURVIVOR!! and they know it. Here is hoping that MDX-1106 will be the cure for all!

    Poster child...
    fox,

    Aren't you also the poster child for "Ritalin for Seniors"? Good to hear everything went and is going so well. There are many cases where the magic bullet proved to be something easy, polio and small pox come to mind, lets hope and pray that MDX makes that list. Your pic should also be in the dictionary under survivor, you are an inspiration to so many here.

    FLY on,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Poster child...
    fox,

    Aren't you also the poster child for "Ritalin for Seniors"? Good to hear everything went and is going so well. There are many cases where the magic bullet proved to be something easy, polio and small pox come to mind, lets hope and pray that MDX makes that list. Your pic should also be in the dictionary under survivor, you are an inspiration to so many here.

    FLY on,

    Gary

    Poster child
    Ain't that the truth!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Poster child...
    fox,

    Aren't you also the poster child for "Ritalin for Seniors"? Good to hear everything went and is going so well. There are many cases where the magic bullet proved to be something easy, polio and small pox come to mind, lets hope and pray that MDX makes that list. Your pic should also be in the dictionary under survivor, you are an inspiration to so many here.

    FLY on,

    Gary

    Poster child
    Ain't that the truth!
  • foxhd
    foxhd Member Posts: 3,181

    Poster child
    Ain't that the truth!

    poster child
    Ok. Here is the thing. I've continued with my exercise as previous over past several years. Occaisionally I stretch a little different or change the angle I lift just a little. As a result I've had some amazing pain in some muscles and tendons that I've never experienced before. Figured out today that that is due to the medication targeting any inflammation or abnormal tissue response to stress. This will go into the category of " side effects from MDX-1106 " Makes me think it is working like crazy. That is my story and I'm sticking to it. We'll see what my dual phase pet scan and biopsy show this week. Won't get results until the 25th.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    foxhd said:

    poster child
    Ok. Here is the thing. I've continued with my exercise as previous over past several years. Occaisionally I stretch a little different or change the angle I lift just a little. As a result I've had some amazing pain in some muscles and tendons that I've never experienced before. Figured out today that that is due to the medication targeting any inflammation or abnormal tissue response to stress. This will go into the category of " side effects from MDX-1106 " Makes me think it is working like crazy. That is my story and I'm sticking to it. We'll see what my dual phase pet scan and biopsy show this week. Won't get results until the 25th.

    poster child
    Praying that MDX-1106 is immunotherapy's silver bullet and I like your interpretation. Those results on the 25th are going to be good!
  • garym
    garym Member Posts: 1,647

    poster child
    Praying that MDX-1106 is immunotherapy's silver bullet and I like your interpretation. Those results on the 25th are going to be good!

    Amen...
    AMEN TO THAT!!!
  • rae_rae
    rae_rae Member Posts: 300
    garym said:

    Amen...
    AMEN TO THAT!!!

    Praying for awesome results!
    Praying for awesome results! :-)
  • Olsera
    Olsera Member Posts: 38
    foxhd said:

    poster child
    Ok. Here is the thing. I've continued with my exercise as previous over past several years. Occaisionally I stretch a little different or change the angle I lift just a little. As a result I've had some amazing pain in some muscles and tendons that I've never experienced before. Figured out today that that is due to the medication targeting any inflammation or abnormal tissue response to stress. This will go into the category of " side effects from MDX-1106 " Makes me think it is working like crazy. That is my story and I'm sticking to it. We'll see what my dual phase pet scan and biopsy show this week. Won't get results until the 25th.

    poster child
    I am sure it is working like crazy with your positive attitude it has to be. Good luck with your results they will be excellent!
  • foxhd
    foxhd Member Posts: 3,181
    Olsera said:

    poster child
    I am sure it is working like crazy with your positive attitude it has to be. Good luck with your results they will be excellent!

    fox
    Thanx all. They must have used a lot of radioactive contrast for my scans today because my biopsy has to be no less than 18 hours after. I asked How come? They said for the safety of the surgical staff.....Hold on, my cell phone needs a recharge. I think I'll stick the cord in my butt...Boy that was fast. May as well try my MP3 player...Damn!..Think I'll jump start my Harley....
  • foxhd
    foxhd Member Posts: 3,181
    foxhd said:

    fox
    Thanx all. They must have used a lot of radioactive contrast for my scans today because my biopsy has to be no less than 18 hours after. I asked How come? They said for the safety of the surgical staff.....Hold on, my cell phone needs a recharge. I think I'll stick the cord in my butt...Boy that was fast. May as well try my MP3 player...Damn!..Think I'll jump start my Harley....

    todays biopsy
    I've had nothing but excellent care from excellent people at Yale. Professional, compassionate and good sense of humor. Todays procedure was an endoscopic bronchial needle biopsy of a lymph node. Told the Doctor that his endoscopic tools had better taste like meat as I'd been npo for 15 hours. Got a good laugh. Nothing to it. Feel great.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    foxhd said:

    todays biopsy
    I've had nothing but excellent care from excellent people at Yale. Professional, compassionate and good sense of humor. Todays procedure was an endoscopic bronchial needle biopsy of a lymph node. Told the Doctor that his endoscopic tools had better taste like meat as I'd been npo for 15 hours. Got a good laugh. Nothing to it. Feel great.

    Today's biopsy
    Wonderful. Rock on Fox!
  • garym
    garym Member Posts: 1,647

    Today's biopsy
    Wonderful. Rock on Fox!

    Today's biopsy...
    Good to hear, keep'em laughing foxy, what a great attitude!!

    Hey, I played 18 yesterday, a January rarity in Michigan, temp about 50F, ground frozen (extra roll), and you could bounce across the ice on the water hazards, had a blast and thought a lot about my golfing friends here, helps keep things in perspective.

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    Today's biopsy...
    Good to hear, keep'em laughing foxy, what a great attitude!!

    Hey, I played 18 yesterday, a January rarity in Michigan, temp about 50F, ground frozen (extra roll), and you could bounce across the ice on the water hazards, had a blast and thought a lot about my golfing friends here, helps keep things in perspective.

    Gary

    Golf and perspective
    Just got back from walking the Championship at Carnoustie with my regular playing partner (that's him in the frost, approaching the famous "Spectacles" this morning). When we went out it was -8C about 17F? so water hazards decidedly solid. Not much roll though because the frost was so thick it was sticky. The last hole I'd played was in November when I par'd the 18th there. Today I played a few holes with my pal's clubs and couldn't resist having a go at 18. Rashly, on the tee I grinned and reminded him I'd had par last time out, before my op. In the event, I had a 17' putt for par this morning and it looked absolutely perfect. I gave it plenty to get through the frost but the hole, on the winter green, was crowned and my ball stopped half an inch from dropping, dead centre. Hubris, I guess.

    This is where your remark about keeping things in perspective rang true, Gary. Since our last game in November my partner and I hadn't seen each other until Friday where we met at the funeral of the third member of our long-running golfing trio. To still be able to walk round Carnoustie on a beautiful, sunny, cloudless day with no wind (rare for Carnoustie!!) and not many golfers either - what more could a man ask for?
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Golf and perspective
    Just got back from walking the Championship at Carnoustie with my regular playing partner (that's him in the frost, approaching the famous "Spectacles" this morning). When we went out it was -8C about 17F? so water hazards decidedly solid. Not much roll though because the frost was so thick it was sticky. The last hole I'd played was in November when I par'd the 18th there. Today I played a few holes with my pal's clubs and couldn't resist having a go at 18. Rashly, on the tee I grinned and reminded him I'd had par last time out, before my op. In the event, I had a 17' putt for par this morning and it looked absolutely perfect. I gave it plenty to get through the frost but the hole, on the winter green, was crowned and my ball stopped half an inch from dropping, dead centre. Hubris, I guess.

    This is where your remark about keeping things in perspective rang true, Gary. Since our last game in November my partner and I hadn't seen each other until Friday where we met at the funeral of the third member of our long-running golfing trio. To still be able to walk round Carnoustie on a beautiful, sunny, cloudless day with no wind (rare for Carnoustie!!) and not many golfers either - what more could a man ask for?

    Bikers and doctors
    While trying to wait patiently for Fox's results on the 25th and my own path report (sometime soon, I hope), here's one for you bikers, with apologies if you've heard it before:

    A mechanic was removing a cylinder-head from the motor of a Harley when he spotted a well-known cardiologist in his shop.

    The cardiologist was there waiting for the service manager to come and take a look at his bike when the mechanic shouted across the garage.

    "Hey, Doc, want to take a look at this?"

    The cardiologist, a bit surprised, walked over to where the mechanic was working on the motorcycle.
    The mechanic straightened up, wiped his hands on a rag and asked

    "So Doc, look at this engine. I open its heart, take the valves out, repair any damage, and then put them back in, and when I finish, it works just like new. So how come I make $39,675 a year and you get the really big bucks ($1,695,759) when you and I are doing basically the same work?"

    The cardiologist paused, smiled and leaned over, then whispered to the mechanic..........

    "Try doing it with the engine running."

    And the moral of this story is - get the right expert for the job you need done and then trust her/him to do the job right.
  • foxhd
    foxhd Member Posts: 3,181

    Bikers and doctors
    While trying to wait patiently for Fox's results on the 25th and my own path report (sometime soon, I hope), here's one for you bikers, with apologies if you've heard it before:

    A mechanic was removing a cylinder-head from the motor of a Harley when he spotted a well-known cardiologist in his shop.

    The cardiologist was there waiting for the service manager to come and take a look at his bike when the mechanic shouted across the garage.

    "Hey, Doc, want to take a look at this?"

    The cardiologist, a bit surprised, walked over to where the mechanic was working on the motorcycle.
    The mechanic straightened up, wiped his hands on a rag and asked

    "So Doc, look at this engine. I open its heart, take the valves out, repair any damage, and then put them back in, and when I finish, it works just like new. So how come I make $39,675 a year and you get the really big bucks ($1,695,759) when you and I are doing basically the same work?"

    The cardiologist paused, smiled and leaned over, then whispered to the mechanic..........

    "Try doing it with the engine running."

    And the moral of this story is - get the right expert for the job you need done and then trust her/him to do the job right.

    golf at 17 degrees?
    OK, I'll start with the obvious. What are you NUTZ? 17 degrees? Must be like smacking rocks! On the other hand, I am still hoping to go to Myrtle beach in a couple weeks. I'll play anything above 40. As for going to the right specialist, I've 35 years in health care. Nearly half in hospitals. So I have alot of experience to base my opinion. I can not say enough about how excellent everyone at Yale/New Haven hospital has been. There is absolutely nowhere else I would rather be. I am thankful and very fortunate. Regardless of the final outcome. T-W, you are so right. The Smilow cancer hospital at Yale is a world class operation. I'm lucky. On the other hand, my truck needs new tires. But I'll wait until my follow up on the 25th before I spend any money.
  • garym
    garym Member Posts: 1,647
    foxhd said:

    golf at 17 degrees?
    OK, I'll start with the obvious. What are you NUTZ? 17 degrees? Must be like smacking rocks! On the other hand, I am still hoping to go to Myrtle beach in a couple weeks. I'll play anything above 40. As for going to the right specialist, I've 35 years in health care. Nearly half in hospitals. So I have alot of experience to base my opinion. I can not say enough about how excellent everyone at Yale/New Haven hospital has been. There is absolutely nowhere else I would rather be. I am thankful and very fortunate. Regardless of the final outcome. T-W, you are so right. The Smilow cancer hospital at Yale is a world class operation. I'm lucky. On the other hand, my truck needs new tires. But I'll wait until my follow up on the 25th before I spend any money.

    Golf at 17 degrees or colder...
    After playing last Wednesday, the weather turned and by Friday it was in the teens, windy, and we had 6" of snow on the ground, bummer.

    Some of my friends and I set up a course and play ice golf in the winter when the conditions are right regardless of the temp. We play on the lake, shovel snow off the ice to make tees and greens, bore holes with an auger and actually have flag sticks. The problem is that usually by the time the ice is safe the snow is too deep, but once in awhile it works out. We set up a standard nine holes, winter rules of course, you're only allowed 2 clubs, as much beer as you can carry, power carts (snowmobiles) are not allowed, and sometimes we have to drill a hole through the ball to attach colored yarn to help find them in the snow, we lose very few. You're allowed to clear the snow around your ball for second, third, etc. shots. You'd be surprised how well you can hit it dressed in boots, gloves, and Carharts. You don't have to be nutz, but it helps.