OK, this is why we do this.

foxhd
foxhd Member Posts: 3,181

This post is primarily for newer members and lurkers. Those in despair and scared to death. Desparate for hope. I'll humor veteran members and will even use "L,s".

I had been running, weight training, golfing and motorcycle riding for years. My joke was that I was going to be in the best shape of my life when I died. I was 58 y.o. Little did I know that in March 2011 with no warning, I began peeing blood faster than a race horse. Doubled over in pain. A couple days later my left kidney was removed due to cancer. Soon, I found out that I had mets through out my lungs, liver and chest lymph nodes. (Bone mets were soon to follow). I was told that maybe I would make it to see spring 2012. Scared? Hell yeah! My local oncologist said she could not help me. Next cancer center said good luck. Next one couldn't help either. I tried Yale New Haven Smilow Cancer center. I begged to be admitted. "Please, please, let me try HDIL-2." Dr. Harriet Kluger offered me a counter proposal. (Harriet is my God.) It seems they had a spot open in the clinical trial of MDX-1106, or anti-PD1. She said it held much promise. I would need to have many scans, blood work and biopsies to see if I would qualify. Besides, I could get HDIL-2 if I didn't qualify. (what the hell was MDX-1106? I never heard of it.)

I said, "Hell yeah!.........." Guess what? I QUALIFIED!!!!!! One of the few people in this country who met the criteria.....(What is important here is that NO OTHER ONCOLOGIST EVER mentioned anything like this to me!.......REMEMBER THIS!!!!!!!!!!   it could save your life!

Also keep in mind that had I accepted an adjuvant therapy before this point, I would not be eligible for this trial.

I got my first infusion about the start of 2012. By now I could barely walk and was living on percocets just to get around the house, due to bone pain in my spine and right hip.

By spring the pain was GONE! By summer I was back to full running, weight training, golf and motorcycle riding.

I recieve infusions every 3 weeks. Today was infusion number 22 !!!!!!!!!!!

I've probably had 20+/- tumors DISAPPEAR!!!!!. I am having issues with some mets in my spine and ribs which are a little more resistant. I have had some radiation and am also recieving zometa to work on those. I do have some pain but BIG DEAL! I'm in better shape than most. Next month I'll be 61 y.o., and by previous estimates, I'll have been dead a year! Now, I am being treated for what is essentially a chronic disease. Sort of like a diabetic, or heart patient. Could you live with that?  HELL YEAH!

So for all you freightened people not knowing where to turn, DO YOUR RESEARCH! Question your Drs., Learn about your options. And please know that this renal cell carcinoma does not have to be a death sentence for everyone.

Scarey? yep.  I may not become completely cancer free and doubt if I ever will. Will everyone be as lucky as me? I doubt that too. But what saved my life was the continued effort to search options. I knew little about kidney cancer when I started. I know a little more now. But not much. That's OK. Because next year I will know more. And maybe, just maybe, that next great treatment and cure will be available just around the corner. And remember it will only work for you if you are here to benefit from it. So stay tough and fight my friends.

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Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    HELL YEAH!

    Nothing more to add.

  • foxhd
    foxhd Member Posts: 3,181
    Where is the edit button?
     
    I

    Where is the edit button?

     

    I have got to add that it took a good bit of luck. More than my effort produced. I am so fortunate. This experience could have made many other turns. Then who knows the story line?  We'll just have to follow this trip.

  • KJones1969
    KJones1969 Member Posts: 158
    options Fox

    So today we asked my husband's doctor about Cometriq (if that is the correct spelling) and he said not an option. Okay if you go read my information on it spreading to the skin, heck it can't be as bad of an option as the drugs my husband has been on so far. I truly believe you have to push for something that maybe isn't offered to get the results you wish for. Duke is one of the top hospital's in the world and and has a great cancer center but they told us that after 3 drugs there are really no more options there for my husband. How can you be world class and not have options there but you can at John Hopkins? It has me frazzled.

    You offer inspiration to many that don't ask for what doctor's think of as the impossible. I did read above about a anti-PD1, that is what his doctor said at Duke would be the next option, just not there because it isn't available. Apparently John Hopkins has some options available but his doctor said we would have to go 8 hours or so. I told him we didn't care if it was across the country as long as it helped him. When you are running out of options you'll try anything that is promising.

     

  • angec
    angec Member Posts: 924

    options Fox

    So today we asked my husband's doctor about Cometriq (if that is the correct spelling) and he said not an option. Okay if you go read my information on it spreading to the skin, heck it can't be as bad of an option as the drugs my husband has been on so far. I truly believe you have to push for something that maybe isn't offered to get the results you wish for. Duke is one of the top hospital's in the world and and has a great cancer center but they told us that after 3 drugs there are really no more options there for my husband. How can you be world class and not have options there but you can at John Hopkins? It has me frazzled.

    You offer inspiration to many that don't ask for what doctor's think of as the impossible. I did read above about a anti-PD1, that is what his doctor said at Duke would be the next option, just not there because it isn't available. Apparently John Hopkins has some options available but his doctor said we would have to go 8 hours or so. I told him we didn't care if it was across the country as long as it helped him. When you are running out of options you'll try anything that is promising.

     

    Karen, how about any other

    Karen, how about any other trials?  Where do you live?  I wonder just when bms will be available.  Keep searching..

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    Karen, how about any other

    Karen, how about any other trials?  Where do you live?  I wonder just when bms will be available.  Keep searching..

    Survivors

    Fox is one of a kind, as we all know, but we shouldn't let that make us overlook the fact that there are many other suvivors against very long odds.  Jerry White is one of those. 

    Another example has lately been posted on ACOR:  a man who has just turned 70 and was given 3 months to live, 14 years ago.  He's had prostate cancer and a nephrectomy for his kidney cancer.  His RCC metastsised to his lymph nodes, lung and pancreas.  In December, in icu with acute renal failure, his docs said he wouldn't make it home.

    Like Fox, he's in the anti-PD1 trial and his Wife says his blood levels are better than for years and that, at 70, to look at him you'd never know he was ill, seeing him going about his normal life!

  • dhs1963
    dhs1963 Member Posts: 513
    F*** YES!

    This is good!  I love nyou attitude.

     

    I think it is part of the process....we start in shock, feel sorry for ourselfs...then say what the h***, and do what we have to do to keep going, but get back to enjoying the good times.

     

    David (living scan to scan) S.

     

  • dhs1963
    dhs1963 Member Posts: 513
    F*** YES!

    This is good!  I love nyou attitude.

     

    I think it is part of the process....we start in shock, feel sorry for ourselfs...then say what the h***, and do what we have to do to keep going, but get back to enjoying the good times.

     

    David (living scan to scan) S.

     

  • garym
    garym Member Posts: 1,647
    Just look at you now...

    fox,

    I remember the day you showed up here and from the very first it was obvious that you were a different kind of newbie.  You had a heightened awareness of the importance of attitude and a strong desire to fight, and when the "experts" gave you no chance you answered "Screw you!".  Impressive to say the least, but even more impressive is your selfless desire to help others along the way, you must have been one heck of a PT.  I think there should be a thread just for the stories like yours, tex, donna, one putt, and many others that are the true survivors here and it should be permanently afixed to the top of the page where all the newcomers would find it first.  FLY is more than just your mantra, it is your essence, not bad for a guy so far past his expiration date.

    I love you man,

    Gary

  • one putt
    one putt Member Posts: 72
    CARPE DIEM

    Fox,

    I couldn't agree with you more. I was fortunate enough to be at a hospital,Hopkins, with a lot of available options and a doctor,Hans Hammers, who explained them to Alice and me when we first met. We followed your success with MDX-1106 with great interest,even while I was undergoing HD-IL2 treatment. When that failed,I was eagerly awaiting an opening in an MDX/Votrient trial that began in May. Meanwhile, we followed your success and looked to you for inspiration. My kidney cancer had spread to my lungs,left hip, and right shoulder blade causing extremely painful micro fractures. To date, I've had a 51% overall reduction in my tumor burden. Like you,now we treat my cancer just like any other chronic disease. I've resumed all of my pre-cancer activities except golf(damn shoulder). My goal is to get to the land of my ancestors and play Carnoustie with you,Tex,and Gary. I'm not sure how the first 18 holes would go, but I'd be willing to bet the 19th hole would be a hell of a lot of fun. The first time I met with Dr. Hammers he told me I had picked a good time to get kidney cancer, meaning there were lots of treatment options available and many more in the pipeline. To you newer members,ask questions, stay informed, be positive. Enjoy the day,because tomorrow is going to be even better.

  • garym
    garym Member Posts: 1,647
    one putt said:

    CARPE DIEM

    Fox,

    I couldn't agree with you more. I was fortunate enough to be at a hospital,Hopkins, with a lot of available options and a doctor,Hans Hammers, who explained them to Alice and me when we first met. We followed your success with MDX-1106 with great interest,even while I was undergoing HD-IL2 treatment. When that failed,I was eagerly awaiting an opening in an MDX/Votrient trial that began in May. Meanwhile, we followed your success and looked to you for inspiration. My kidney cancer had spread to my lungs,left hip, and right shoulder blade causing extremely painful micro fractures. To date, I've had a 51% overall reduction in my tumor burden. Like you,now we treat my cancer just like any other chronic disease. I've resumed all of my pre-cancer activities except golf(damn shoulder). My goal is to get to the land of my ancestors and play Carnoustie with you,Tex,and Gary. I'm not sure how the first 18 holes would go, but I'd be willing to bet the 19th hole would be a hell of a lot of fun. The first time I met with Dr. Hammers he told me I had picked a good time to get kidney cancer, meaning there were lots of treatment options available and many more in the pipeline. To you newer members,ask questions, stay informed, be positive. Enjoy the day,because tomorrow is going to be even better.

    Sounds like a plan...

    I'm game, but the three of us on this side of the pond need to remember one thing...

    Mulligan

    An American went to Scotland and played golf with a newly acquainted Scottish golfer.
    After a bad tee shot, he played a "Mulligan" which was an extremely good one.
    He then asked the Scottish, "What do you call a Mulligan in Scotland?"
    "We call it 3."

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

    Sounds like a plan...

    I'm game, but the three of us on this side of the pond need to remember one thing...

    Mulligan

    An American went to Scotland and played golf with a newly acquainted Scottish golfer.
    After a bad tee shot, he played a "Mulligan" which was an extremely good one.
    He then asked the Scottish, "What do you call a Mulligan in Scotland?"
    "We call it 3."

    Mulligan

    Yeah, just remember that you guys!  and another thing .......

    By the way, I reckon I'll need to make sure the 19th hole is well-stocked.

  • BDS
    BDS Member Posts: 172
    BMS-936558 Questions

    Fox nice post. I have saved and printed off a copy of your post and I intend to give a copy to my oncologist the next time I see her. She is currently starting a phase III of BMS-936558 trial at Fox Chase Center in Philadelphia. But I have a few questions for you. Sorry…J I am curious I may need to go into this clinical when my Votrient stops working.

    1.      Are you currently still able to excise - running, weight training, golfing and motorcycle riding? If so are you able to exercise to the same levels as before?  In short how is your quality of life now with over one year of treatment? Is there anything you cannot do now which you could before?

    2.      What side effects have you experienced while on BMS-936558? Which ones did your oncologist warned you about?

    3.      What is the status of your treatment? Are you still getting regular infusions and how long does your oncologist plan to have you on BMS-936558? Has your oncologist ever mention how long they believe BMS-936558 will be effective?    

    Thanks - BDS

  • one putt
    one putt Member Posts: 72
    19th hole

    Tex I can't speak for Gary and Fox but I would hope there would be more than just a single,single malt at the 19th hole.

  • foxhd
    foxhd Member Posts: 3,181
    BDS said:

    BMS-936558 Questions

    Fox nice post. I have saved and printed off a copy of your post and I intend to give a copy to my oncologist the next time I see her. She is currently starting a phase III of BMS-936558 trial at Fox Chase Center in Philadelphia. But I have a few questions for you. Sorry…J I am curious I may need to go into this clinical when my Votrient stops working.

    1.      Are you currently still able to excise - running, weight training, golfing and motorcycle riding? If so are you able to exercise to the same levels as before?  In short how is your quality of life now with over one year of treatment? Is there anything you cannot do now which you could before?

    2.      What side effects have you experienced while on BMS-936558? Which ones did your oncologist warned you about?

    3.      What is the status of your treatment? Are you still getting regular infusions and how long does your oncologist plan to have you on BMS-936558? Has your oncologist ever mention how long they believe BMS-936558 will be effective?    

    Thanks - BDS

    BDS questions

    Thanks for your concern and support BDS. Regarding my exercise. Currently I am having too much pain in a couple ribs to do much ex. But my pains tend to go away after a week or two and then I am able to do everything again at a pretty good intensity for a few weeks. Then I seem to repeat the process. I believe the pain  is  a tumor flare up from the medicine working. I have a couple bone mets that are being resistant to the treatment but my history has shown that I will heal from these without any other intervention. (I do get zometa at a reduced frequency of every 6 weeks). I'm a patient guy so I have no problem dealing with this. My quality of life is awesome! I have several hobbies that keep me busy every day. Those and having my granddaughters to watch almost daily keeps me real busy. I have to say that I only experience fatigue as a side effect but alot of this is due to winter cabin fever. It won't bother me once I can spend all day working and being outdoors. Again, I am still in better shape than almost all my friends and most other 60 year olds. But I have been slowing down a little bit as I age. I really have no other side effects what so ever.

    I recieve my infusions every 3 weeks and according to protocol, I will recieve infusions until there is evidence that the drug no longer is working. This may be several years with good luck. I really want this treatment to work without other interventions. Although sometimes I think that maybe I should have my bone lesions removed. I think the nature of the MDX is that the cancer cells don't adapt as they may be able to do with some treatments. The MDX works on my own immune system so that it continually identifies the cancer as an invader.

    I look forward to golf season and riding my bike. I have several booked camping trips for this summer. I plan on doing well for a long time to come. As I have mentioned several other times, my Dr. says that when I do die, she doesn't think it will be from kidney cancer. She tells me I can buy green bananas as I will be around for awhile. Let's hope she is right.

  • foxhd
    foxhd Member Posts: 3,181
    one putt said:

    19th hole

    Tex I can't speak for Gary and Fox but I would hope there would be more than just a single,single malt at the 19th hole.

    19th hole

     I can hold my own at the 19th hole. At one of my biker parties this summer,we purchase a bottomless insulated quart mug for about $30. Beer flows non-stop for 4 days. Thankfully my liver and remaining kidney get checked every 3 weeks. It is my responsibility to give them something to check.

  • roaddr23
    roaddr23 Member Posts: 77
    Dude, I love Ya!!

    You are so right...one thing everyone needs to remember when it comes to their medical care...YOU are in charge and you don't have to accept what any Dr says...a good Dr. won't be offended if a patient asks for a 2nd, mine actually encouraged me too...and who cares if you offend some Dr...he is probably one didn't want anyway...and sometimes we just have to let our inner maniac loose...!! Research, research, research and I too believe this is one of the best sites for support but also for information...Fox...you remind me of my sister, yep, a girl but a tough girl like me...20 years ago she was diagnosed with Hepatitis C (the same time as whats her name Judd was) She researched and called and finally found a Dr who got into her into the initial trial of Interferon etc that is now the standard treatment...she went through hell but at the end it was totally worth....she was one of the people that was literally cured of Hep C...and she continues to test negative to this day...she could have just listened to the Dr and resigned herself to dying from it but not my girl...Last May at 56 she graduated from Nursing School...We just can't stop fighting...

    BTW, If you are cruising on your bike in VT maybe you can come by and say Hey....we have 113 acres in the middle of fricking nowhere in a little town called Victory, in Essex County in the wonderful Northeast Kingdom..we are in Victory technically but our property is literally on the line between Victory and Granby...eventually we are moving there...right now we have an awesome cabin there and go up about 4 or 5 times a year for 10days or so...I really need to get my hubby to frickin retire...

  • vdm13
    vdm13 Member Posts: 47
    Here, Here!!!

    Love you, Fox. Keep it up.

  • Hanno
    Hanno Member Posts: 45
    An inspiring story fox...

    Thank you for sharing fox. I intentionally did not open this post immediately as I just knew I would want to spend a good chunk of time reading it. I was right. I love your story. I love your determination and zest for life. I love that you didn't take no for an answer. And I love that you are an advocate and inspiration for so many people here. 

    With your can do attitude and that special knack to remain smart, strong and stubborn... i have no doubt you will kick the crap out of those bone mets. 

    As for all these golf and motorbike jokes... Even though half the time I have no idea what you guys are talking about, it's still a good laugh to watch you all having fun. 

    Cheers, Mel

  • foxhd
    foxhd Member Posts: 3,181
    roaddr23 said:

    Dude, I love Ya!!

    You are so right...one thing everyone needs to remember when it comes to their medical care...YOU are in charge and you don't have to accept what any Dr says...a good Dr. won't be offended if a patient asks for a 2nd, mine actually encouraged me too...and who cares if you offend some Dr...he is probably one didn't want anyway...and sometimes we just have to let our inner maniac loose...!! Research, research, research and I too believe this is one of the best sites for support but also for information...Fox...you remind me of my sister, yep, a girl but a tough girl like me...20 years ago she was diagnosed with Hepatitis C (the same time as whats her name Judd was) She researched and called and finally found a Dr who got into her into the initial trial of Interferon etc that is now the standard treatment...she went through hell but at the end it was totally worth....she was one of the people that was literally cured of Hep C...and she continues to test negative to this day...she could have just listened to the Dr and resigned herself to dying from it but not my girl...Last May at 56 she graduated from Nursing School...We just can't stop fighting...

    BTW, If you are cruising on your bike in VT maybe you can come by and say Hey....we have 113 acres in the middle of fricking nowhere in a little town called Victory, in Essex County in the wonderful Northeast Kingdom..we are in Victory technically but our property is literally on the line between Victory and Granby...eventually we are moving there...right now we have an awesome cabin there and go up about 4 or 5 times a year for 10days or so...I really need to get my hubby to frickin retire...

    Vermont

    I do ride into Vermont a few times in the summer. Last year I rode up Rt. 100 from one end to the other. I came home down 91 which is close to there.

  • foxhd
    foxhd Member Posts: 3,181
    Hanno said:

    An inspiring story fox...

    Thank you for sharing fox. I intentionally did not open this post immediately as I just knew I would want to spend a good chunk of time reading it. I was right. I love your story. I love your determination and zest for life. I love that you didn't take no for an answer. And I love that you are an advocate and inspiration for so many people here. 

    With your can do attitude and that special knack to remain smart, strong and stubborn... i have no doubt you will kick the crap out of those bone mets. 

    As for all these golf and motorbike jokes... Even though half the time I have no idea what you guys are talking about, it's still a good laugh to watch you all having fun. 

    Cheers, Mel

    Having fun

    We've said it here many times. If you can't have fun and laughs on a cancer site, then where can you? It's all Gary's fault.