MDX, part 3

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Comments

  • garym
    garym Member Posts: 1,647
    #22
    Texas_wedge said:

    On the ball as ever Gary. Yes, I'm afraid they are. I'm now in the metastatic camp and moving to plan B. New tumour in lower right abdomen. After imminent round the table discussion with input from a renal oncologist and others I'll get perceived options and recommendations. We'll probably also procure an expert second opinion in Harley St. since this is a decidedly critical juncture for me.

    Such a strange illness - I was hoping to get back to being able to row 10k and reckoned to aim for getting under 50 mins. Did 10k yesterday in under 45 mins. and didn't feel any effects today while playing Carnoustie in a gale. Such a disconnect between the diagnostic and the experiential aspects - it's totally discombobulating.

    T,

    Certainly not what we had hoped to hear, but your own research has prepared you well. In fact, you are perhaps the most physically and mentally prepared person that I know of in this fight. Nothing I can say that you don't already know, but in the words of Yogi Berra "It ain't over till its over!", I'll bet Jerry White would agree. Sounds like you are formulating a plan, you know what I like to say, ATTACK WITH EXTREME PREJUDICE!! For what its worth, from my perspective your odds of winning are much better than most. Please accept my virtual hug, wish I could offer it in person.

    Your friend and brother in battle,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #23
    garym said:

    T,

    Certainly not what we had hoped to hear, but your own research has prepared you well. In fact, you are perhaps the most physically and mentally prepared person that I know of in this fight. Nothing I can say that you don't already know, but in the words of Yogi Berra "It ain't over till its over!", I'll bet Jerry White would agree. Sounds like you are formulating a plan, you know what I like to say, ATTACK WITH EXTREME PREJUDICE!! For what its worth, from my perspective your odds of winning are much better than most. Please accept my virtual hug, wish I could offer it in person.

    Your friend and brother in battle,

    Gary

    Thanks Gary, very much appreciated.
  • lbinmsp
    lbinmsp Member Posts: 266
    #24
    Texas_wedge said:

    On the ball as ever Gary. Yes, I'm afraid they are. I'm now in the metastatic camp and moving to plan B. New tumour in lower right abdomen. After imminent round the table discussion with input from a renal oncologist and others I'll get perceived options and recommendations. We'll probably also procure an expert second opinion in Harley St. since this is a decidedly critical juncture for me.

    Such a strange illness - I was hoping to get back to being able to row 10k and reckoned to aim for getting under 50 mins. Did 10k yesterday in under 45 mins. and didn't feel any effects today while playing Carnoustie in a gale. Such a disconnect between the diagnostic and the experiential aspects - it's totally discombobulating.

    WELL
    HELL! This is a kick in the head, isn't it! I know you're strong and I know you're a fighter, but I think you deserve to take a little time to feel crummy.

    I had stereotactic radiosurgery to my pancreatic tumors (RCC) - and had such high hopes for at least some response. When the next set of scans revealed continued growth instead of shrinkage (and a new liver tumor), I had a melt-down. I've had this beast of a disease for 11 years (on/off/on/off/on) - and this was my first melt-down. I figured I had a right. It lasted about 24 hours and then I was back to my usual optimistic - 'it is what it is' - one day at a time - attitude.

    My prayers are with you - hoping that Plan B is magic!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #25
    lbinmsp said:

    WELL
    HELL! This is a kick in the head, isn't it! I know you're strong and I know you're a fighter, but I think you deserve to take a little time to feel crummy.

    I had stereotactic radiosurgery to my pancreatic tumors (RCC) - and had such high hopes for at least some response. When the next set of scans revealed continued growth instead of shrinkage (and a new liver tumor), I had a melt-down. I've had this beast of a disease for 11 years (on/off/on/off/on) - and this was my first melt-down. I figured I had a right. It lasted about 24 hours and then I was back to my usual optimistic - 'it is what it is' - one day at a time - attitude.

    My prayers are with you - hoping that Plan B is magic!

    Trials!
    LB, these little things are sent to try us and some are a little bit more trying than others. Prayers gratefully received. Over, but not out!
  • cww71964
    cww71964 Member Posts: 97
    #26
    Texas_wedge said:

    Thanks Gary, very much appreciated.

    Hi TW,

    Sorry to hear that but I know you are more than capable of overcoming this bump. Think of it as a double bogey on the first hole only to come back and shoot under par on the next 17. You are in my prayers.

    Health and happiness to all,
    Wayne
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #27
    cww71964 said:

    Hi TW,

    Sorry to hear that but I know you are more than capable of overcoming this bump. Think of it as a double bogey on the first hole only to come back and shoot under par on the next 17. You are in my prayers.

    Health and happiness to all,
    Wayne

    Thanks Wayne. Started with a double bogey on the first this morning, as it happens, but unfortunately the rest of your scenario didn't ensue. I was buttonholed by a club secretary afterwards who had good news about an action going to the high court on which I had been giving help so the bad score on the course was soon forgotten, like the CT results.

    However, this is a different game, where I shall aim to match Fox's achievements.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #28
    Texas_wedge said:

    Trials!
    LB, these little things are sent to try us and some are a little bit more trying than others. Prayers gratefully received. Over, but not out!

    mulligans
    TW, sometimes local club rules allow for opportunities not afforded in normal play. I can think of no one better than you to interpret available options. Honestly, I think that you will provide insights to your Drs. that they haven't thought of. We'll see you at the 19th hole.And not soon. No doubt about it.
  • adobe
    adobe Member Posts: 72
    #29
    Dancing Shoes
    I am pumped also for you, put on your dancing shoes, and I have mine on for you!! You give all of us another shot on the stage. Remember you might have to dance at a wedding!

    ADOBE
  • myboys2
    myboys2 Member Posts: 50
    #30
    Fabulous
    My gosh that is just fabulous. Now you can ride your bike in comfort. I tried to change my photo to me on my bike but because I am so tech impaired I can't get it to work LOL. Anyway, keep up the continued status, it gives us such hope!!
  • jhsu
    jhsu Member Posts: 80
    #31
    Texas_wedge said:

    On the ball as ever Gary. Yes, I'm afraid they are. I'm now in the metastatic camp and moving to plan B. New tumour in lower right abdomen. After imminent round the table discussion with input from a renal oncologist and others I'll get perceived options and recommendations. We'll probably also procure an expert second opinion in Harley St. since this is a decidedly critical juncture for me.

    Such a strange illness - I was hoping to get back to being able to row 10k and reckoned to aim for getting under 50 mins. Did 10k yesterday in under 45 mins. and didn't feel any effects today while playing Carnoustie in a gale. Such a disconnect between the diagnostic and the experiential aspects - it's totally discombobulating.

    Name of the game
    TW, my plan B became plan A long time ago.

    For those of us in RCC stage IV camp, recurrence is the name of the game. I already aimed my target at preparing for recurrence instead of preventing recurrence years ago. Relax and keep on breathing, eat balanced diet, drink properly, get rid of your constipation, don’t hold your water, sleep well and most importantly exercise as much as you can. All these are what I do everyday, 356 days a year.

    When recurrence shows up we need to have our strength, stamina and immunity at the top level to deal with it. Every time before my regular checkup I prepare myself like prepare running a marathon. Long term and everyday exercise will start to restructure your physical body to be a stronger fighter no mater what your age is now.

    This game is not over until our life is over.

    Jon
  • foxhd
    foxhd Member Posts: 3,181 Member
    #32
    myboys2 said:

    Fabulous
    My gosh that is just fabulous. Now you can ride your bike in comfort. I tried to change my photo to me on my bike but because I am so tech impaired I can't get it to work LOL. Anyway, keep up the continued status, it gives us such hope!!

    thanks again all.
    Thanks again all! Jon, I completely buy into your proactive fitness plan. I have told everyone that when I die, I'll be in the best shape of my life!LOL.
    Myboys2, Looks like you're hanging out at a biker bar. Unless thats your living room! I was riding in comfort after maybe 3 weeks. Had to get in shape. Laconia was coming up...Had a friend from New Brunswick coming to Laconia. She had kidney surgery a couple months before me. Her Dr. would not let her ride yet. She was bummed.
  • alice124
    alice124 Member Posts: 896 Member
    #33
    Texas_wedge said:

    On the ball as ever Gary. Yes, I'm afraid they are. I'm now in the metastatic camp and moving to plan B. New tumour in lower right abdomen. After imminent round the table discussion with input from a renal oncologist and others I'll get perceived options and recommendations. We'll probably also procure an expert second opinion in Harley St. since this is a decidedly critical juncture for me.

    Such a strange illness - I was hoping to get back to being able to row 10k and reckoned to aim for getting under 50 mins. Did 10k yesterday in under 45 mins. and didn't feel any effects today while playing Carnoustie in a gale. Such a disconnect between the diagnostic and the experiential aspects - it's totally discombobulating.

    Tex,

    It follows no rhyme or reason, and most dealing with this horrible disease find themselves in a glazed eye state wondering what critical component the medical world is missing in this puzzle. You feel it is right there and you should be able to touch it/grab it. It's astonishing that you are in the metastatic camp now despite the level of your physical activity. Your doctors are fortunate to have you as a patient as you'll undoubtedly become a dynamic patient/doctor(s) team and learn from each other.

    You instill optimism in others and that optimism is coming back to you by the many you have positively impacted. Good luck in taking the next step.


    Fox - WOO HOO! Congratulations.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #34
    foxhd said:

    thanks again all.
    Thanks again all! Jon, I completely buy into your proactive fitness plan. I have told everyone that when I die, I'll be in the best shape of my life!LOL.
    Myboys2, Looks like you're hanging out at a biker bar. Unless thats your living room! I was riding in comfort after maybe 3 weeks. Had to get in shape. Laconia was coming up...Had a friend from New Brunswick coming to Laconia. She had kidney surgery a couple months before me. Her Dr. would not let her ride yet. She was bummed.

    Fox!
    Was she really?! The things you bikers get up to! I hope her doctor wasn't involved.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #35
    Texas_wedge said:

    Fox!
    Was she really?! The things you bikers get up to! I hope her doctor wasn't involved.

    Lateral thinking
    Fox, Jon, Alice, thanks for all the kind words. A bit of imagination may be in order in addition to the established prescription for healthy living. I'll be asking about cryo, hyperthermia, HIFU etc. Unfortunately MDX-1106 has been ruled out (so far at least). Raj pointed me to an interesting brief YouTube video with one of his experts - Dr. Dutcher - which makes me wonder whether IL2 will be suggested (I don't much fancy poisoning a perfectly good immune system, even if it did let RCC slip through for maybe 20 years or more!).

    Jon, re your posting, I'm intrigued to know what you get up to on the other nine days of the year (ten this year, of course). Your life-style template is identical to mine. I was reading a bit of a classic textbook on nutrition and dietetics earlier today - a chapter on cancer and diet - and it expressed the view that physical inactivity in the last century is to blame for a large proportion of the upsurge in cancer numbers. All the evidence suggests that exercise is more important than most folks realise when it comes to cancer.

    Took another couple of seconds off my recent best (post-op) time for rowing 5,000 m yesterday and had a 5&3 win in golf winter league today, against a couple of big hitters. Like Fox, when I gonna go, gonna go healthy.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #36
    Texas_wedge said:

    Fox!
    Was she really?! The things you bikers get up to! I hope her doctor wasn't involved.

    Lateral thinking
    Fox, Jon, Alice, thanks for all the kind words. A bit of imagination may be in order in addition to the established prescription for healthy living. I'll be asking about cryo, hyperthermia, HIFU etc. Unfortunately MDX-1106 has been ruled out (so far at least). Raj pointed me to an interesting brief YouTube video with one of his experts - Dr. Dutcher - which makes me wonder whether IL2 will be suggested (I don't much fancy poisoning a perfectly good immune system, even if it did let RCC slip through for maybe 20 years or more!).

    Jon, re your posting, I'm intrigued to know what you get up to on the other nine days of the year (ten this year, of course). Your life-style template is identical to mine. I was reading a bit of a classic textbook on nutrition and dietetics earlier today - a chapter on cancer and diet - and it expressed the view that physical inactivity in the last century is to blame for a large proportion of the upsurge in cancer numbers. All the evidence suggests that exercise is more important than most folks realise when it comes to cancer.

    Took another couple of seconds off my recent best (post-op) time for rowing 5,000 m yesterday and had a 5&3 win in golf winter league today, against a couple of big hitters. Like Fox, when I gonna go, gonna go super-fit.
  • LISAinTN
    LISAinTN Member Posts: 143
    #37
    Yippeee!
    Fox, sorry I am late with the congrats. I've had an awful time accessing this site lately. Anyway, I am SO SO happy for your results. I agree with everyone else in that your time, caring, kindness and help that you have so freely given to all of us is coming back to you tenfold. I have tears in my eyes I am so happy for you. Keeping you in my prayers.

    Blessings,
    Lisa
  • LISAinTN
    LISAinTN Member Posts: 143
    #38
    Texas_wedge said:

    On the ball as ever Gary. Yes, I'm afraid they are. I'm now in the metastatic camp and moving to plan B. New tumour in lower right abdomen. After imminent round the table discussion with input from a renal oncologist and others I'll get perceived options and recommendations. We'll probably also procure an expert second opinion in Harley St. since this is a decidedly critical juncture for me.

    Such a strange illness - I was hoping to get back to being able to row 10k and reckoned to aim for getting under 50 mins. Did 10k yesterday in under 45 mins. and didn't feel any effects today while playing Carnoustie in a gale. Such a disconnect between the diagnostic and the experiential aspects - it's totally discombobulating.

    I don't hear a thing!!
    TX, I don't hear any fat lady singing, so you just keep on fighting, because it ain't over by a long shot! You are another person here that I feel is very deserving of some great news. I am continually amazed at all the time, effort and care that you give to others on top of everything that you are going through yourself. I am sending up extra prayers for you my friend.

    Blessings,
    Lisa
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #39
    LISAinTN said:

    I don't hear a thing!!
    TX, I don't hear any fat lady singing, so you just keep on fighting, because it ain't over by a long shot! You are another person here that I feel is very deserving of some great news. I am continually amazed at all the time, effort and care that you give to others on top of everything that you are going through yourself. I am sending up extra prayers for you my friend.

    Blessings,
    Lisa

    Fighting for sure
    Thanks Lisa - feeling the benefit already.

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