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I'm going back in!

foxhd
foxhd Member Posts: 3,181

Results are in from latest scan. My remaining tumors have been shrinking from the IL-2! I will be readmitted on the 30th for round #3 of IL-2. Still some issues with bone mets but we will deal with that later if they remain. I look forward to the treatment. I don't look forward to miserable side effects.  I'll be out of circulation until at least thanksgiving. Who wants to come and visit? I'll need someone to rake leaves! I probably won't feel good again until the snow flies. My post Il-2 skin peeling and redness will be a hit on Halloween. Can't wait. I think that for the next week and a half I am giving myself a green light to eat, drink, and party too much. Just more fun and games. See, there is life with cancer. Sometimes we have to look a little harder.

 

There have been many new people on board. Sorry about that. But here is a brief synopsis of my past couple years.

I have been very strong and fit since always. March 2011 brought me a radical nephrectomy. By oct. 2011 I was loaded with mets. I began the clinical trial of MDX-1106 in dec. 2011. I responded beautifully and was nearly cured until a few new mets developed in june 2013. I then began with the IL-2 in july 2013. Results are above.

To everyone. Keep looking for the right treatment. Don't take the first suggestion from your Dr. It may limit future options. There is plenty of information out there now. Read and learn. Choose carefully. Good luck to everyone. We can do this. FLY. Fox loves you!

«13

Comments

  • alice124
    alice124 Member Posts: 896
    Shrinking! What a tremendous

    Shrinking! What a tremendous sound to that word!!!! You still make smiles Fox!

    Couldn't be happier with the news. Sorry you have to return to the hell chamber though. Wouldn't it be nice if they could just put you out for the duration?

    Anyway, we'll be with you vicariously and sending back to you all that good karma you so graciously give to us. You know we love you!

  • Gordon Charles
    Gordon Charles Member Posts: 91
    Talk about No Prisoners....

    A man who walks the talk... what can I say but you're an inspiration!  Be sure to write when you get work!!!

  • Alexandra
    Alexandra Member Posts: 1,308
    Great news on tumors shrinking Foxy!

    There is no such thing as "party too much". Go nuts! I'm not good at raking leaves, but if you need an experienced leaf blower, PM me. Wink

    Lov ya!

     

  • Baaa-bs
    Baaa-bs Member Posts: 50
    Such great news for you!

    Looks like you've hit on the right drug for you. Shrinkage!!!!! Awesome. Good luck to you. Big hugs and prayers to help with the shakes.

  • rainsandpours
    rainsandpours Member Posts: 136
    Proud of you Fox! You've got

    Proud of you Fox! You've got a strong constitution:)

     

    Will you start a new "Live from the Cuckoo's nest" thread while you're in there?  I need something to motivate me while I'm in the hospital too.

     

    Best of luck to you, and best wishes xoxo

  • angec
    angec Member Posts: 924
    FOX!  This is AWESOME news! I

    FOX!  This is AWESOME news! I am so glad that it seems to be helping!  Party all the way through and don't look back.  It is a pity the stuff doesn't work on bone mets but I thought you already had radiation on them.  Did it not work? Sorry for the memory not working.  In any case, it is good news and i hope this puts this C word on the back burner one day soon!  Love ya!

  • DMike
    DMike Member Posts: 259
    Woo Hoo!

    Way to go Fox! I'm so happy for you. You'll do well on the next 2 cycles. You are obviously a great candidate for immunotherapy. 

    I'll be pulling for you.

    --David

  • AprilandChuck
    AprilandChuck Member Posts: 110
    So glad to read the news! Go

    So glad to read the news! Go get them Fox you got this! Shrinking is an awesome report! So excited for you! Lots of huggss and well wishes as you step back into side affect hell..but its going to be so worth it!

  • MDCinSC
    MDCinSC Member Posts: 574
    Go Get em Tiger!  Bring back

    Go Get em Tiger!  Bring back some great news!  God knows we all need it!

  • Eims
    Eims Member Posts: 423
    MDCinSC said:

    Go Get em Tiger!  Bring back

    Go Get em Tiger!  Bring back some great news!  God knows we all need it!

    fox you are the ultimate

    fox you are the ultimate warrior....go get em xxx

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

    fox you are the ultimate

    fox you are the ultimate warrior....go get em xxx

    I AM the warrior!

    But not to seem invincible, I will admit that I am scared. IL-2 is hard. Passing away is not in my plan. But I do hate thinking about how sick I will become with IL-2. But you know what? Bring it on. Ask Tex if he would trade places with me. We NEED to fight because only the accumulation of data will find the solution. I am amazed at the amount of people who won't attempt a clinical trial. Try that first. Then you are part of the solution. Not a byproduct. I'll tell you that trials are available. Search them out. Accept approved drugs only when necesary. They will always be there but so far they haven't become the cure.

  • donna_lee
    donna_lee Member Posts: 1,018
    foxhd said:

    I AM the warrior!

    But not to seem invincible, I will admit that I am scared. IL-2 is hard. Passing away is not in my plan. But I do hate thinking about how sick I will become with IL-2. But you know what? Bring it on. Ask Tex if he would trade places with me. We NEED to fight because only the accumulation of data will find the solution. I am amazed at the amount of people who won't attempt a clinical trial. Try that first. Then you are part of the solution. Not a byproduct. I'll tell you that trials are available. Search them out. Accept approved drugs only when necesary. They will always be there but so far they haven't become the cure.

    The foxy guy will ride again

    All my hugs sent cross country.  Let's hope #3 series meets the challenge of the cancer cells and we can lift your arm as the winner of that round.

    No Harley riding on US 101 this weekend...it's raining here in southern Oregon.  

    Good Luck.

    Donna

  • TillieSOK
    TillieSOK Member Posts: 252
    foxhd said:

    I AM the warrior!

    But not to seem invincible, I will admit that I am scared. IL-2 is hard. Passing away is not in my plan. But I do hate thinking about how sick I will become with IL-2. But you know what? Bring it on. Ask Tex if he would trade places with me. We NEED to fight because only the accumulation of data will find the solution. I am amazed at the amount of people who won't attempt a clinical trial. Try that first. Then you are part of the solution. Not a byproduct. I'll tell you that trials are available. Search them out. Accept approved drugs only when necesary. They will always be there but so far they haven't become the cure.

    Fox, you ARE the warrior!

    Fox, you ARE the warrior!  And now that you know what to expect, it won't be so bad. (Yeah, listen to me...I've never gone through it.  Easy for me to say, huh?)  You have done it before, and while it wasn't fun...it sure as hell wasn't fatal.  You are a hero in my eyes and I say a prayer for you every day.  You are the man with the machete, cutting through the jungle, in order that the rest of us will have a clearer path to travel.  Hugs!

  • NanaLou
    NanaLou Member Posts: 71
    TillieSOK said:

    Fox, you ARE the warrior!

    Fox, you ARE the warrior!  And now that you know what to expect, it won't be so bad. (Yeah, listen to me...I've never gone through it.  Easy for me to say, huh?)  You have done it before, and while it wasn't fun...it sure as hell wasn't fatal.  You are a hero in my eyes and I say a prayer for you every day.  You are the man with the machete, cutting through the jungle, in order that the rest of us will have a clearer path to travel.  Hugs!

    Great News!!

    I am so glad to hear this news. I know you are dreading it. But it doesn't last that long. You just got to make it through it. When I went in I would be focusing on the things I would be doing a week out of the hospital. That is about the time I started to feel normal again. If you keep this up You will get to go back a thrid time like me!! It is rough stuff. But I'd do it again in a heartbeat. Keep it up. Prayers headed your way.    

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

    Great News!!

    I am so glad to hear this news. I know you are dreading it. But it doesn't last that long. You just got to make it through it. When I went in I would be focusing on the things I would be doing a week out of the hospital. That is about the time I started to feel normal again. If you keep this up You will get to go back a thrid time like me!! It is rough stuff. But I'd do it again in a heartbeat. Keep it up. Prayers headed your way.    

    Nancy, no-one could have failed to be impressed with the way you handled IL2 and to be utterly delighted with how it's treated you - particularly with your having, like me, a very unfavourable high sarcomatoid component. 

    Likewise, we were knocked out by the way John took it on (even allowing for the inestimable asset of having the lovely Alice at his side).

    However, true to what we've come to expect, what a display of courage by Fox!!!  This is a strong man who says he was "broken" by his earlier experience on IL2 and yet he's got the grit to go back for more! He's a tough guy and still he's not shy of saying he's scared!  No wonder we're the crew who are changing the numbers.

    As Fox says, we need folks to commit themselves to trials (when appropriate - so far all the adjuvant trials looking at preventing recurrence have been an almost complete waste, other than that if they hadn't been tried we wouldn't have known!!) because it's a major source of discovery and progress, albeit far, far too slow.  I'm working on trying to get back to a status that would enable me to get into a trial, should there ever be one that accepts a heavily metastatic sarcomatoid chromophobe case who's now had to be taken out of a first line TKI treatment.

    Here's to Fox getting a total response to HD IL2 - if anyone ever earnt the right to it, it must surely be him.

  • foxhd
    foxhd Member Posts: 3,181

    Nancy, no-one could have failed to be impressed with the way you handled IL2 and to be utterly delighted with how it's treated you - particularly with your having, like me, a very unfavourable high sarcomatoid component. 

    Likewise, we were knocked out by the way John took it on (even allowing for the inestimable asset of having the lovely Alice at his side).

    However, true to what we've come to expect, what a display of courage by Fox!!!  This is a strong man who says he was "broken" by his earlier experience on IL2 and yet he's got the grit to go back for more! He's a tough guy and still he's not shy of saying he's scared!  No wonder we're the crew who are changing the numbers.

    As Fox says, we need folks to commit themselves to trials (when appropriate - so far all the adjuvant trials looking at preventing recurrence have been an almost complete waste, other than that if they hadn't been tried we wouldn't have known!!) because it's a major source of discovery and progress, albeit far, far too slow.  I'm working on trying to get back to a status that would enable me to get into a trial, should there ever be one that accepts a heavily metastatic sarcomatoid chromophobe case who's now had to be taken out of a first line TKI treatment.

    Here's to Fox getting a total response to HD IL2 - if anyone ever earnt the right to it, it must surely be him.

    only moderate panic

    Nana, this will be my 3rd week of IL-2. A week off, then #4. I'm amazed at how you could recover in a week. I don't think I felt like myself until 6-8 weeks after discharge. So weak. Mentally drained. I am fine now but I wondered if I would make a comeback. I began to feel like our old friend Paula who admitted she just couldn't do it anymore. I  relied on my comprehension of the process and the fact that I believe that I can recover from anything if it doesn't kill me first. And I'll admit that at times I worried it might kill me. What is most amazing to me is that I could only handle 6 doses the first time as I was on the verge of insanity and have never been that sick before. (give me a nephrectomy any day). The second round I was hanging in until my physiology dictated the end. I expect the liver and kidney complications will determine the number of infusions this time also. There will be no mental or emotional issues. Now that I know what I'm in for. The biggest worry I had the second time was when I could no longer urinate. Dialysis is not my definition of fun.

    Courage? I think not. I have been given the 2 biggest opportunites at curing kidney cancer. MDX-1106 and IL-2. I am incredibly fortunate. I will not squander the chances I've been given. What a shame that would be to me, my family at home, and here. Desparate may be a more fitting description of me. I want to live. I've realized that the only short term goals I have are doing well with my treatments. I am thinking long term goals. 5 year plan at least to finish up my projects. I have no plan B in the works. If the IL-2 is a failure, then new plans will be made. All my eggs in one basket? So., I'm committed and going for it. No other thoughts in the way.

    Adjuvant trials. I guess there are some who have had several years of benefits. But nothing curative. Having been offered a votrient trial in the beginning just didn't sit well with me.  But trials are the basis of research. I have always been very pro-trial. I encourage that anyone offered a trial choose carefully. It may mean changing doctors and clinics. Not everything is offered everywhere. We enter trials to contribute to science,research, and recovery. To find the cure. Do what is right for yourself and family first. Find a way to stay alive. Let science learn from that.

    . It bothers me when new people come here in a panic. Then after a few posts we never hear from them again. I don't know if that reflects their character or not. I wish they would hang around for a while. We all share in the joy or misery experienced. They look for information and compassion then drop us like a blind date gone wrong. We have made strong friendships here. Friendships that would not have happened if we were next door neighbors. Sometimes it takes a while. I know that I am now slower at welcoming new people. Sorry. I'm hoping new friendships become self generating.

    Tex, I'll keep on moving forward. I am doing well despite mets that are getting tougher. But I'm clear cell. Not sarcomatoid or chromophobe. I do have a greater chance for response. (there is a survivors guilt there too.) So I entirely commit to doing well. Just as I expect everyone on this board to do. I have no more right to good health than you or anyone else. No fighter has ever won by taking a dive. I'll follow your lead. In the meantime I have this week to enjoy living. I've got plans for golf, motorcycling, beer and pizza. My granddaughters say, "Poppy, you are squeezing me too hard!" Maybe someday they will get it.

     

     

  • DMike
    DMike Member Posts: 259
    foxhd said:

    only moderate panic

    Nana, this will be my 3rd week of IL-2. A week off, then #4. I'm amazed at how you could recover in a week. I don't think I felt like myself until 6-8 weeks after discharge. So weak. Mentally drained. I am fine now but I wondered if I would make a comeback. I began to feel like our old friend Paula who admitted she just couldn't do it anymore. I  relied on my comprehension of the process and the fact that I believe that I can recover from anything if it doesn't kill me first. And I'll admit that at times I worried it might kill me. What is most amazing to me is that I could only handle 6 doses the first time as I was on the verge of insanity and have never been that sick before. (give me a nephrectomy any day). The second round I was hanging in until my physiology dictated the end. I expect the liver and kidney complications will determine the number of infusions this time also. There will be no mental or emotional issues. Now that I know what I'm in for. The biggest worry I had the second time was when I could no longer urinate. Dialysis is not my definition of fun.

    Courage? I think not. I have been given the 2 biggest opportunites at curing kidney cancer. MDX-1106 and IL-2. I am incredibly fortunate. I will not squander the chances I've been given. What a shame that would be to me, my family at home, and here. Desparate may be a more fitting description of me. I want to live. I've realized that the only short term goals I have are doing well with my treatments. I am thinking long term goals. 5 year plan at least to finish up my projects. I have no plan B in the works. If the IL-2 is a failure, then new plans will be made. All my eggs in one basket? So., I'm committed and going for it. No other thoughts in the way.

    Adjuvant trials. I guess there are some who have had several years of benefits. But nothing curative. Having been offered a votrient trial in the beginning just didn't sit well with me.  But trials are the basis of research. I have always been very pro-trial. I encourage that anyone offered a trial choose carefully. It may mean changing doctors and clinics. Not everything is offered everywhere. We enter trials to contribute to science,research, and recovery. To find the cure. Do what is right for yourself and family first. Find a way to stay alive. Let science learn from that.

    . It bothers me when new people come here in a panic. Then after a few posts we never hear from them again. I don't know if that reflects their character or not. I wish they would hang around for a while. We all share in the joy or misery experienced. They look for information and compassion then drop us like a blind date gone wrong. We have made strong friendships here. Friendships that would not have happened if we were next door neighbors. Sometimes it takes a while. I know that I am now slower at welcoming new people. Sorry. I'm hoping new friendships become self generating.

    Tex, I'll keep on moving forward. I am doing well despite mets that are getting tougher. But I'm clear cell. Not sarcomatoid or chromophobe. I do have a greater chance for response. (there is a survivors guilt there too.) So I entirely commit to doing well. Just as I expect everyone on this board to do. I have no more right to good health than you or anyone else. No fighter has ever won by taking a dive. I'll follow your lead. In the meantime I have this week to enjoy living. I've got plans for golf, motorcycling, beer and pizza. My granddaughters say, "Poppy, you are squeezing me too hard!" Maybe someday they will get it.

     

     

    Trials & decisions

    I am a big believer in trials. They are our way forward, no doubt. BUT I have been told numerous times by my insurance company that they will not cover trials. Now, how does someone who is not independently wealthy get involved in trials without insurance?

    I know if you can find a trial at NIH, they cover everything, but they are an exception. Living in Mississippi like I do, I'll have to travel to participate in any trial. I'm not one to give in to many things but this is one time I'm close to saying enough. I made myself a promise when this all started 2 years ago that I would not leave my wife bankrupt. I enjoy life and want to keep on living but I will keep that promise.

    I had to go out of network (insurance) for IL2 treatment. Even though we had the treatment reclassified as in-network, just about every charge that came through was billed at the out-of-network rate and we had to appeal all of them. 5 months after treatment we are still dealing with incorrect charges. This takes a toll mentally and emotionally. Money isn't everything, I totally get that, but it takes money to exist in this world.

    I don't mean for this to sound negative or like an attack on trials, it's just another viewpoint. I encourage everyone to participate in trials. I still keep up with what's out there. I wish I could participate.

    Fox, I hope I didn't rain on your parade. That's the last thing I would want to do. I'm so very happy you are getting another round of IL2. You'll do well. Nancy is showing you the way forward.

    By the way, I'm back putting in the miles on my bike and enjoying life. My next scan is on Thursday. I'll move forward from there!

    David

     

     

     

  • srbelle1
    srbelle1 Member Posts: 123
    foxhd said:

    only moderate panic

    Nana, this will be my 3rd week of IL-2. A week off, then #4. I'm amazed at how you could recover in a week. I don't think I felt like myself until 6-8 weeks after discharge. So weak. Mentally drained. I am fine now but I wondered if I would make a comeback. I began to feel like our old friend Paula who admitted she just couldn't do it anymore. I  relied on my comprehension of the process and the fact that I believe that I can recover from anything if it doesn't kill me first. And I'll admit that at times I worried it might kill me. What is most amazing to me is that I could only handle 6 doses the first time as I was on the verge of insanity and have never been that sick before. (give me a nephrectomy any day). The second round I was hanging in until my physiology dictated the end. I expect the liver and kidney complications will determine the number of infusions this time also. There will be no mental or emotional issues. Now that I know what I'm in for. The biggest worry I had the second time was when I could no longer urinate. Dialysis is not my definition of fun.

    Courage? I think not. I have been given the 2 biggest opportunites at curing kidney cancer. MDX-1106 and IL-2. I am incredibly fortunate. I will not squander the chances I've been given. What a shame that would be to me, my family at home, and here. Desparate may be a more fitting description of me. I want to live. I've realized that the only short term goals I have are doing well with my treatments. I am thinking long term goals. 5 year plan at least to finish up my projects. I have no plan B in the works. If the IL-2 is a failure, then new plans will be made. All my eggs in one basket? So., I'm committed and going for it. No other thoughts in the way.

    Adjuvant trials. I guess there are some who have had several years of benefits. But nothing curative. Having been offered a votrient trial in the beginning just didn't sit well with me.  But trials are the basis of research. I have always been very pro-trial. I encourage that anyone offered a trial choose carefully. It may mean changing doctors and clinics. Not everything is offered everywhere. We enter trials to contribute to science,research, and recovery. To find the cure. Do what is right for yourself and family first. Find a way to stay alive. Let science learn from that.

    . It bothers me when new people come here in a panic. Then after a few posts we never hear from them again. I don't know if that reflects their character or not. I wish they would hang around for a while. We all share in the joy or misery experienced. They look for information and compassion then drop us like a blind date gone wrong. We have made strong friendships here. Friendships that would not have happened if we were next door neighbors. Sometimes it takes a while. I know that I am now slower at welcoming new people. Sorry. I'm hoping new friendships become self generating.

    Tex, I'll keep on moving forward. I am doing well despite mets that are getting tougher. But I'm clear cell. Not sarcomatoid or chromophobe. I do have a greater chance for response. (there is a survivors guilt there too.) So I entirely commit to doing well. Just as I expect everyone on this board to do. I have no more right to good health than you or anyone else. No fighter has ever won by taking a dive. I'll follow your lead. In the meantime I have this week to enjoy living. I've got plans for golf, motorcycling, beer and pizza. My granddaughters say, "Poppy, you are squeezing me too hard!" Maybe someday they will get it.

     

     

    I applaud your grit; I think

    I applaud your grit; I think it a bit harsh to judge those who for one or another reason, choose not to do trials.

    i understand that progress on treatments is made through these trials yet not everyome will choose participation. This does not mean that they are either selfish or lack courage.

    my husband is not at this point but he certainly could be facing this choice; as a breast cancer patient 22 years ago, my gyn referred me to a private oncologist so that I would not be steered into any trials. Thankfully, in my case, this was never an issue and I am a long-time survivor (breast cancer never gets cured).

    i needed to get my 2cents in and I think this is such an excellent information resource.

    wishing you the best!! Sarah

  • foxhd
    foxhd Member Posts: 3,181
    srbelle1 said:

    I applaud your grit; I think

    I applaud your grit; I think it a bit harsh to judge those who for one or another reason, choose not to do trials.

    i understand that progress on treatments is made through these trials yet not everyome will choose participation. This does not mean that they are either selfish or lack courage.

    my husband is not at this point but he certainly could be facing this choice; as a breast cancer patient 22 years ago, my gyn referred me to a private oncologist so that I would not be steered into any trials. Thankfully, in my case, this was never an issue and I am a long-time survivor (breast cancer never gets cured).

    i needed to get my 2cents in and I think this is such an excellent information resource.

    wishing you the best!! Sarah

    Didn't judge anyone

    srbelle1, I've made no commentary about people enrolling in trials or not. Specifically, I said, "Do whats right for yourself." There are numerous variables affecting ones treatment. There is no judgement what so ever. Do what is right  for you. Todays kidney trial drugs include the anti-PD1. It has been the most effective drug to fight kidney cancer to date. Many more indications are being found. Including, melanoma,colon, prostate cancer and more. This category of drugs wasn't available 22 years ago. There is no comparison. Every news article re: new cancer treatments includes the anti-PD1 immunotherapy drug. It will cure many people. It is nearly side effect free. Thank you for the best wishes, Sarah.

    David, maybe living in southern new england affords greater opportuniy for clinical trials. The large drug companies like Bristol meyer squib fund the studies. Not personnal health insurance. Charges are only for things like office visits,some blood work, etc. Most insurance doesn't cover clinical trials anyway because the drugs used are not approved by the FDA. Where I live, I can be in Boston or New York in 2 hours. Dana Farber, Sloan Kettering offer trials. I am at Yale New Haven where the MDX-1106 was offered. I don't know what is available in Ole Miss.

  • srbelle1
    srbelle1 Member Posts: 123
    foxhd said:

    Didn't judge anyone

    srbelle1, I've made no commentary about people enrolling in trials or not. Specifically, I said, "Do whats right for yourself." There are numerous variables affecting ones treatment. There is no judgement what so ever. Do what is right  for you. Todays kidney trial drugs include the anti-PD1. It has been the most effective drug to fight kidney cancer to date. Many more indications are being found. Including, melanoma,colon, prostate cancer and more. This category of drugs wasn't available 22 years ago. There is no comparison. Every news article re: new cancer treatments includes the anti-PD1 immunotherapy drug. It will cure many people. It is nearly side effect free. Thank you for the best wishes, Sarah.

    David, maybe living in southern new england affords greater opportuniy for clinical trials. The large drug companies like Bristol meyer squib fund the studies. Not personnal health insurance. Charges are only for things like office visits,some blood work, etc. Most insurance doesn't cover clinical trials anyway because the drugs used are not approved by the FDA. Where I live, I can be in Boston or New York in 2 hours. Dana Farber, Sloan Kettering offer trials. I am at Yale New Haven where the MDX-1106 was offered. I don't know what is available in Ole Miss.

    my apologies for

    my apologies for misunderstanding; 22 years ago, the experimental treatment for aggressive breast cancer was stem cell transplant. I had 3 friends who underwent this, at their expense since insurance wouldn't cover "experimental". 

    There was also a lot of mixing and matching different chemos. As I mentioned, I bucked medical advice and went with no chemo (cancer was not in the nodes) so trials would have never been offered to me.

    it is too soon to know what and where my husband's kidney cancer will go and what treatments he will be offered. For now, after nephrectomy, lumbar surgery and cyberknife radiation will be it with frequent scans.

    again, my apologies for misunderstanding and my gratitude for sharing your treatments. Sarah

  • NanaLou
    NanaLou Member Posts: 71
    foxhd said:

    only moderate panic

    Nana, this will be my 3rd week of IL-2. A week off, then #4. I'm amazed at how you could recover in a week. I don't think I felt like myself until 6-8 weeks after discharge. So weak. Mentally drained. I am fine now but I wondered if I would make a comeback. I began to feel like our old friend Paula who admitted she just couldn't do it anymore. I  relied on my comprehension of the process and the fact that I believe that I can recover from anything if it doesn't kill me first. And I'll admit that at times I worried it might kill me. What is most amazing to me is that I could only handle 6 doses the first time as I was on the verge of insanity and have never been that sick before. (give me a nephrectomy any day). The second round I was hanging in until my physiology dictated the end. I expect the liver and kidney complications will determine the number of infusions this time also. There will be no mental or emotional issues. Now that I know what I'm in for. The biggest worry I had the second time was when I could no longer urinate. Dialysis is not my definition of fun.

    Courage? I think not. I have been given the 2 biggest opportunites at curing kidney cancer. MDX-1106 and IL-2. I am incredibly fortunate. I will not squander the chances I've been given. What a shame that would be to me, my family at home, and here. Desparate may be a more fitting description of me. I want to live. I've realized that the only short term goals I have are doing well with my treatments. I am thinking long term goals. 5 year plan at least to finish up my projects. I have no plan B in the works. If the IL-2 is a failure, then new plans will be made. All my eggs in one basket? So., I'm committed and going for it. No other thoughts in the way.

    Adjuvant trials. I guess there are some who have had several years of benefits. But nothing curative. Having been offered a votrient trial in the beginning just didn't sit well with me.  But trials are the basis of research. I have always been very pro-trial. I encourage that anyone offered a trial choose carefully. It may mean changing doctors and clinics. Not everything is offered everywhere. We enter trials to contribute to science,research, and recovery. To find the cure. Do what is right for yourself and family first. Find a way to stay alive. Let science learn from that.

    . It bothers me when new people come here in a panic. Then after a few posts we never hear from them again. I don't know if that reflects their character or not. I wish they would hang around for a while. We all share in the joy or misery experienced. They look for information and compassion then drop us like a blind date gone wrong. We have made strong friendships here. Friendships that would not have happened if we were next door neighbors. Sometimes it takes a while. I know that I am now slower at welcoming new people. Sorry. I'm hoping new friendships become self generating.

    Tex, I'll keep on moving forward. I am doing well despite mets that are getting tougher. But I'm clear cell. Not sarcomatoid or chromophobe. I do have a greater chance for response. (there is a survivors guilt there too.) So I entirely commit to doing well. Just as I expect everyone on this board to do. I have no more right to good health than you or anyone else. No fighter has ever won by taking a dive. I'll follow your lead. In the meantime I have this week to enjoy living. I've got plans for golf, motorcycling, beer and pizza. My granddaughters say, "Poppy, you are squeezing me too hard!" Maybe someday they will get it.

     

     

    Just to be clear

    Just to be Clear. I didn't fully recover after a week. I started to feel myself. Meaning my mind wasn't scrambled. I was still very tired and not able to get up and do much of anything. I was able to get up and get my girl ready for school and on the school bus. Then come in the house and take a nap. I could not stand up for more than 15 or 20 mins without my hands swelling. The first few days home I did nothing but sleep. I think the recovery was easier the second and third time around. Because I knew what to expect. I can't say which treatment was the hardest. Each had it's own problems. You did it once you got it this time. Best wishes and prayers headed your way!

    Nancy    

  • Djinnie
    Djinnie Member Posts: 945
    foxhd said:

    Didn't judge anyone

    srbelle1, I've made no commentary about people enrolling in trials or not. Specifically, I said, "Do whats right for yourself." There are numerous variables affecting ones treatment. There is no judgement what so ever. Do what is right  for you. Todays kidney trial drugs include the anti-PD1. It has been the most effective drug to fight kidney cancer to date. Many more indications are being found. Including, melanoma,colon, prostate cancer and more. This category of drugs wasn't available 22 years ago. There is no comparison. Every news article re: new cancer treatments includes the anti-PD1 immunotherapy drug. It will cure many people. It is nearly side effect free. Thank you for the best wishes, Sarah.

    David, maybe living in southern new england affords greater opportuniy for clinical trials. The large drug companies like Bristol meyer squib fund the studies. Not personnal health insurance. Charges are only for things like office visits,some blood work, etc. Most insurance doesn't cover clinical trials anyway because the drugs used are not approved by the FDA. Where I live, I can be in Boston or New York in 2 hours. Dana Farber, Sloan Kettering offer trials. I am at Yale New Haven where the MDX-1106 was offered. I don't know what is available in Ole Miss.

    Trail Blazer!

    They really did break the mould when it came to you Fox, you are one of life's trail blazers. I can only imagine how tough this is going to be on you, but you are made of strong stuff! We will all be keeping you in our prayers. 

     

    Djinnie xx

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

    Just to be clear

    Just to be Clear. I didn't fully recover after a week. I started to feel myself. Meaning my mind wasn't scrambled. I was still very tired and not able to get up and do much of anything. I was able to get up and get my girl ready for school and on the school bus. Then come in the house and take a nap. I could not stand up for more than 15 or 20 mins without my hands swelling. The first few days home I did nothing but sleep. I think the recovery was easier the second and third time around. Because I knew what to expect. I can't say which treatment was the hardest. Each had it's own problems. You did it once you got it this time. Best wishes and prayers headed your way!

    Nancy    

    Experimental treatments

    Sarah, you are right. I don't think I would be excited about stem cell transplants. Drugs were designed to kill cancer by what is essentially poison or limiting capilllary growth. The concept of using our own immune system is more recent. Although  mega doses still require a watchful eye. I could not have imagined just how sick the IL-2 could make me. Fortunately it is temporary.

    Djinnie, I'm no trailblazer either. Opportunities have been presented to me and I am going with them. I'm lucky to be in the right place. The biggest message here is that it took several consults before I found the right dr. and clinic to take care of me. I've realized that this search for the right care is like buying a car. No dealership wants to send you to another dealsership. They want you to buy their car. Even if what you really want or need is just down the street. Seek and choose carefully.

    Nana, I guess the IL-2 treatments can be so variable to ones tolerance. I'm glad your recovery got easier. Mine was defintely harder. My Dr. tells me that she expects it to be even more difficult this time in. I met a guy who just finished his second round of IL-2 and he was already going to the gym within a week. I get skin peeling in sheets. It gets very tender and raw. He had a little dusting of dry skin. I'm hoping my response reflects the effectiveness of the treatment. In any event, BRING IT ON!

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

    Experimental treatments

    Sarah, you are right. I don't think I would be excited about stem cell transplants. Drugs were designed to kill cancer by what is essentially poison or limiting capilllary growth. The concept of using our own immune system is more recent. Although  mega doses still require a watchful eye. I could not have imagined just how sick the IL-2 could make me. Fortunately it is temporary.

    Djinnie, I'm no trailblazer either. Opportunities have been presented to me and I am going with them. I'm lucky to be in the right place. The biggest message here is that it took several consults before I found the right dr. and clinic to take care of me. I've realized that this search for the right care is like buying a car. No dealership wants to send you to another dealsership. They want you to buy their car. Even if what you really want or need is just down the street. Seek and choose carefully.

    Nana, I guess the IL-2 treatments can be so variable to ones tolerance. I'm glad your recovery got easier. Mine was defintely harder. My Dr. tells me that she expects it to be even more difficult this time in. I met a guy who just finished his second round of IL-2 and he was already going to the gym within a week. I get skin peeling in sheets. It gets very tender and raw. He had a little dusting of dry skin. I'm hoping my response reflects the effectiveness of the treatment. In any event, BRING IT ON!

    I believe you are right!!!

    If its hard on you it has to be hard on the mets, I can see them peeling away layer by layer and they don't like pizza and beer so no recuperation for them afterwards.  YOU ARE GOING TO ROCK!!!

  • GSRon
    GSRon Member Posts: 1,303
    garym said:

    I believe you are right!!!

    If its hard on you it has to be hard on the mets, I can see them peeling away layer by layer and they don't like pizza and beer so no recuperation for them afterwards.  YOU ARE GOING TO ROCK!!!

    Fox, you are one tuff

    Fox, you are one tuff Hombre..!   And glad to hear all that suffering is paying off..!!   Just think of the celebration you will have on Turkey day this year..!!  Go man Go..!!  

    Ron 

  • angec
    angec Member Posts: 924
    foxhd said:

    Experimental treatments

    Sarah, you are right. I don't think I would be excited about stem cell transplants. Drugs were designed to kill cancer by what is essentially poison or limiting capilllary growth. The concept of using our own immune system is more recent. Although  mega doses still require a watchful eye. I could not have imagined just how sick the IL-2 could make me. Fortunately it is temporary.

    Djinnie, I'm no trailblazer either. Opportunities have been presented to me and I am going with them. I'm lucky to be in the right place. The biggest message here is that it took several consults before I found the right dr. and clinic to take care of me. I've realized that this search for the right care is like buying a car. No dealership wants to send you to another dealsership. They want you to buy their car. Even if what you really want or need is just down the street. Seek and choose carefully.

    Nana, I guess the IL-2 treatments can be so variable to ones tolerance. I'm glad your recovery got easier. Mine was defintely harder. My Dr. tells me that she expects it to be even more difficult this time in. I met a guy who just finished his second round of IL-2 and he was already going to the gym within a week. I get skin peeling in sheets. It gets very tender and raw. He had a little dusting of dry skin. I'm hoping my response reflects the effectiveness of the treatment. In any event, BRING IT ON!

    Fox, after reading you

    Fox, after reading you comments about the effects being different for everyone, that is understandable since we are all individuals. But, I was wondering if they use the same amount for everyone or do they give higher doses for some?  Like when our friend Paula went in for her anti pd-1l, or whatever it was. She had a very high dose and it gave her alot of side affects. I know her treatment was different than yours, but you essentially did fine with your treatment, and only quit when it stopped working.  Does everyone get the same amount of IL-2?

     

    In any case Fox, I hope the time goes fast and the doc is wrong! I hope you do not have it worse this time!  I wonder why she said that?  Maybe it will be just the opposite and you will be on your toes sooner! That is my wish for you!  Sending lots of love and good thoughts!

  • todd121
    todd121 Member Posts: 1,448
    foxhd said:

    only moderate panic

    Nana, this will be my 3rd week of IL-2. A week off, then #4. I'm amazed at how you could recover in a week. I don't think I felt like myself until 6-8 weeks after discharge. So weak. Mentally drained. I am fine now but I wondered if I would make a comeback. I began to feel like our old friend Paula who admitted she just couldn't do it anymore. I  relied on my comprehension of the process and the fact that I believe that I can recover from anything if it doesn't kill me first. And I'll admit that at times I worried it might kill me. What is most amazing to me is that I could only handle 6 doses the first time as I was on the verge of insanity and have never been that sick before. (give me a nephrectomy any day). The second round I was hanging in until my physiology dictated the end. I expect the liver and kidney complications will determine the number of infusions this time also. There will be no mental or emotional issues. Now that I know what I'm in for. The biggest worry I had the second time was when I could no longer urinate. Dialysis is not my definition of fun.

    Courage? I think not. I have been given the 2 biggest opportunites at curing kidney cancer. MDX-1106 and IL-2. I am incredibly fortunate. I will not squander the chances I've been given. What a shame that would be to me, my family at home, and here. Desparate may be a more fitting description of me. I want to live. I've realized that the only short term goals I have are doing well with my treatments. I am thinking long term goals. 5 year plan at least to finish up my projects. I have no plan B in the works. If the IL-2 is a failure, then new plans will be made. All my eggs in one basket? So., I'm committed and going for it. No other thoughts in the way.

    Adjuvant trials. I guess there are some who have had several years of benefits. But nothing curative. Having been offered a votrient trial in the beginning just didn't sit well with me.  But trials are the basis of research. I have always been very pro-trial. I encourage that anyone offered a trial choose carefully. It may mean changing doctors and clinics. Not everything is offered everywhere. We enter trials to contribute to science,research, and recovery. To find the cure. Do what is right for yourself and family first. Find a way to stay alive. Let science learn from that.

    . It bothers me when new people come here in a panic. Then after a few posts we never hear from them again. I don't know if that reflects their character or not. I wish they would hang around for a while. We all share in the joy or misery experienced. They look for information and compassion then drop us like a blind date gone wrong. We have made strong friendships here. Friendships that would not have happened if we were next door neighbors. Sometimes it takes a while. I know that I am now slower at welcoming new people. Sorry. I'm hoping new friendships become self generating.

    Tex, I'll keep on moving forward. I am doing well despite mets that are getting tougher. But I'm clear cell. Not sarcomatoid or chromophobe. I do have a greater chance for response. (there is a survivors guilt there too.) So I entirely commit to doing well. Just as I expect everyone on this board to do. I have no more right to good health than you or anyone else. No fighter has ever won by taking a dive. I'll follow your lead. In the meantime I have this week to enjoy living. I've got plans for golf, motorcycling, beer and pizza. My granddaughters say, "Poppy, you are squeezing me too hard!" Maybe someday they will get it.

     

     

    Hi

    You guilted me into posting when I wasn't going to...Lol. Came here in a panic, and then haven't been around for awhile.

    I hope that you continue to get benefit from the IL2. I'm rooting for you Fox.

    On my side, I'm still on the Everolimus adjuvant therapy trial. My side effects were pretty mild. The first 3-4 months some fatigue and nausea and very minor mouth sores, which cleared up. It all cleared up for what seemed like 2-3 months. I've been on it for nearly 9 months now. My scans have been clean so far NED. I'm due new scans October 16th. My blood tests have been good. Last test my creatinine was up to 1.83 (normally in the 1.6 range), but my doctor seemed to think I just hadn't drank enough water that morning.

    The fatigue and nausea have returned the past 2 weeks and I"ve been having some annoying twitching in a muscle in my neck and also some really bad anxiety and depression at times. The anxiety has increased to the level of panic attacks today and last Friday. The anxiety and depression may have nothing to do with the drug.

    I pop in once in awhile and read what's going on with you guys, but I rarely post. I'm hoping I stay NED, but afraid I won't. My stage 3a tumor is still worrying me 11 months afterwards. I'm afraid I'm not doing all I can lifestyle-wise to stay healthy. Still eating pretty much what I want and not exercising, working too much, and having occasionally a little too much to drink. I'm too stubborn to change my life I guess. A bit worried if it comes back, I'm going to blame myself.

    This is where I am.

    I hope you sail through this round and it does you a world of good. I wish everyone here the best. This cancer SUCKS. We all deserve to be healthy.

    Best wishes,

    Todd

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    todd121 said:

    Hi

    You guilted me into posting when I wasn't going to...Lol. Came here in a panic, and then haven't been around for awhile.

    I hope that you continue to get benefit from the IL2. I'm rooting for you Fox.

    On my side, I'm still on the Everolimus adjuvant therapy trial. My side effects were pretty mild. The first 3-4 months some fatigue and nausea and very minor mouth sores, which cleared up. It all cleared up for what seemed like 2-3 months. I've been on it for nearly 9 months now. My scans have been clean so far NED. I'm due new scans October 16th. My blood tests have been good. Last test my creatinine was up to 1.83 (normally in the 1.6 range), but my doctor seemed to think I just hadn't drank enough water that morning.

    The fatigue and nausea have returned the past 2 weeks and I"ve been having some annoying twitching in a muscle in my neck and also some really bad anxiety and depression at times. The anxiety has increased to the level of panic attacks today and last Friday. The anxiety and depression may have nothing to do with the drug.

    I pop in once in awhile and read what's going on with you guys, but I rarely post. I'm hoping I stay NED, but afraid I won't. My stage 3a tumor is still worrying me 11 months afterwards. I'm afraid I'm not doing all I can lifestyle-wise to stay healthy. Still eating pretty much what I want and not exercising, working too much, and having occasionally a little too much to drink. I'm too stubborn to change my life I guess. A bit worried if it comes back, I'm going to blame myself.

    This is where I am.

    I hope you sail through this round and it does you a world of good. I wish everyone here the best. This cancer SUCKS. We all deserve to be healthy.

    Best wishes,

    Todd

    "Stubborn" or foolish?

    Todd, good to hear from you and to know that your scans continue to show you NED. 

    I take it that it's still just educated guesswork as to which trial arm you're in and you don't actually know you're on the drug?  If you are on Afinitor, it's good to know the side-effects are so bearable.

    Now for the pep talk! 

    "Still eating pretty much what I want and not exercising, working too much, and having occasionally a little too much to drink. I'm too stubborn to change my life I guess. A bit worried if it comes back, I'm going to blame myself."  

    If it were to come back, perhaps you should blame yourself? Living a healthy lifestyle is the one contribution within your power to make in the team that's trying to keep you healthy.

    What's more, you're still having anxiety and panic and depression at times!  Please remember that until depression is at severe levels, anti-depressant drugs are actually less effective than exercise.  What's more, the drugs have side-effects and exercise doesn't!  Bottom line - take better care of yourself!                        

  • NanoSecond
    NanoSecond Member Posts: 653
    todd121 said:

    Hi

    You guilted me into posting when I wasn't going to...Lol. Came here in a panic, and then haven't been around for awhile.

    I hope that you continue to get benefit from the IL2. I'm rooting for you Fox.

    On my side, I'm still on the Everolimus adjuvant therapy trial. My side effects were pretty mild. The first 3-4 months some fatigue and nausea and very minor mouth sores, which cleared up. It all cleared up for what seemed like 2-3 months. I've been on it for nearly 9 months now. My scans have been clean so far NED. I'm due new scans October 16th. My blood tests have been good. Last test my creatinine was up to 1.83 (normally in the 1.6 range), but my doctor seemed to think I just hadn't drank enough water that morning.

    The fatigue and nausea have returned the past 2 weeks and I"ve been having some annoying twitching in a muscle in my neck and also some really bad anxiety and depression at times. The anxiety has increased to the level of panic attacks today and last Friday. The anxiety and depression may have nothing to do with the drug.

    I pop in once in awhile and read what's going on with you guys, but I rarely post. I'm hoping I stay NED, but afraid I won't. My stage 3a tumor is still worrying me 11 months afterwards. I'm afraid I'm not doing all I can lifestyle-wise to stay healthy. Still eating pretty much what I want and not exercising, working too much, and having occasionally a little too much to drink. I'm too stubborn to change my life I guess. A bit worried if it comes back, I'm going to blame myself.

    This is where I am.

    I hope you sail through this round and it does you a world of good. I wish everyone here the best. This cancer SUCKS. We all deserve to be healthy.

    Best wishes,

    Todd

    Being stubborn

    Todd,

    I don't want to pour salt on a wound, but please explain to me how else you think it should work?  You say, "we all deserve to be healthy", a sentiment we all share around here.  But how can we be healthy if we don't eat healthy?  Do you really think that just taking an unproven drug (for adjuvent therapy) can restore one's health?  How, exactly, does that work?

    Tex rightly suggests some more exercise. But I believe that if improper nutrition is dragging your body (and mind) down more exercise (alone) will be mostly futile.  I would rather put the primary emphasis on getting your diet right to begin with.  I am sure that advice is not a surprise coming from me.

    Fatigue is adding to your depression (no matter what the actual source might be).  But you can address fatigue by diet and exercise.

    If you want to feel (and really be) healthy you do have to do more than remaining complacent in your old habits.  If the fear of graduating to stage IV does not provide adequate motivation - then why are you still in that clinical trial?  Why did you even start on it in the first place?

  • srbelle1
    srbelle1 Member Posts: 123
    todd121 said:

    Hi

    You guilted me into posting when I wasn't going to...Lol. Came here in a panic, and then haven't been around for awhile.

    I hope that you continue to get benefit from the IL2. I'm rooting for you Fox.

    On my side, I'm still on the Everolimus adjuvant therapy trial. My side effects were pretty mild. The first 3-4 months some fatigue and nausea and very minor mouth sores, which cleared up. It all cleared up for what seemed like 2-3 months. I've been on it for nearly 9 months now. My scans have been clean so far NED. I'm due new scans October 16th. My blood tests have been good. Last test my creatinine was up to 1.83 (normally in the 1.6 range), but my doctor seemed to think I just hadn't drank enough water that morning.

    The fatigue and nausea have returned the past 2 weeks and I"ve been having some annoying twitching in a muscle in my neck and also some really bad anxiety and depression at times. The anxiety has increased to the level of panic attacks today and last Friday. The anxiety and depression may have nothing to do with the drug.

    I pop in once in awhile and read what's going on with you guys, but I rarely post. I'm hoping I stay NED, but afraid I won't. My stage 3a tumor is still worrying me 11 months afterwards. I'm afraid I'm not doing all I can lifestyle-wise to stay healthy. Still eating pretty much what I want and not exercising, working too much, and having occasionally a little too much to drink. I'm too stubborn to change my life I guess. A bit worried if it comes back, I'm going to blame myself.

    This is where I am.

    I hope you sail through this round and it does you a world of good. I wish everyone here the best. This cancer SUCKS. We all deserve to be healthy.

    Best wishes,

    Todd

    Todd:
    i am reasonably new to

    Todd:

    i am reasonably new to this board and am here because my husband has kidney cancer.

    if it does not offend you, may I ask your age? The more I learn about this disease, the more I realize how past habits impact and have made some changes in my own lifestyle.

    drinking too much after having a stage 3 diagnosis sounds odd to me; without really dating myself, I will say that we are part of the "me" generation, if it feels good, do it. You probably get my drift. 

    My husband has struggles with cigarettes and I finally blew up, let all of his family and friends know so that he understood how outraged we are in fighting for him while he selfishly smoked, KNOWING what effect smoking has on kidney cancer.

    i mean you no disrespect but why would you drink too much? 

    Sarah