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Comments

  • 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

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    srbelle1 said:

    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

    Poor old Todd!

    Please don't run away and hide now Todd - it's good to have you looking in again.  I stand by what I said, but I didn't envisage you getting such an instant drubbing from all quarters Laughing

    I hope you'll continue to contribute here but I do also sincerely hope that you'll give due thought to the messages you're getting and that, even allowing for our hobby-horses, you'll believe we genuinely have your best interests at heart.

  • angec
    angec Member Posts: 924

    Poor old Todd!

    Please don't run away and hide now Todd - it's good to have you looking in again.  I stand by what I said, but I didn't envisage you getting such an instant drubbing from all quarters Laughing

    I hope you'll continue to contribute here but I do also sincerely hope that you'll give due thought to the messages you're getting and that, even allowing for our hobby-horses, you'll believe we genuinely have your best interests at heart.

    I have to laugh!  Poor old

    I have to laugh!  Poor old Todd!  We love you so much that we are pointing our fingers at you and scolding you to get you in shape!  I cracked up at seeing Trevor's last post above! He is right though, who would have thought that we would all get on the band wagon and get at ya?  HA!

    In all seriousness, I hope all things turn out ok. It is normal to get depressed and worried over your health. Over drinking now and then, i guess it can easily happen. But now that you know you can help yourself a little more, I hope you decide to take to heart what both Neil and Trevor have written!  They don't only suggest a better lifestyle, they surely live by it!  You don't really want to blame yourself if you get worse. You owe it to yourself to treat your body better! ;)

    Keep coming back to the boards Todd, especially when you are down and depressed! I am sure Gary's jokes will give you a good laugh.  Did you read the one with the little leaguers? It had me rolling!  Check it out!

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

    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!

    dosage

    Ange


     

    Posts: 657
    Joined: Jul 2012

    Aug 04, 2013 - 2:56 pm


    I am so glad that you are back Fox and you got a free chemical peel too. Rest up.

    Here's what I found about the IL-2 dosage. It also has a built-in calculator.

    http://reference.medscape.com/drug/interleukin-2-proleukin-aldesleukin-342203

    Metastatic Renal Cell Carcinoma, Metastatic Melanoma

    600,000 International Units/kg (0.037 mg/kg) IV over 15 minutes q 8hr x maximum 14 doses, THEN  9 days of rest, then a maximum of 14 more doses

    Retreatment: evaluate after 4 weeks, advisable only if tumor shrinkage & no retreatment contraindications



     

    , Here is a repost from Alexandra.

  • NanoSecond
    NanoSecond Member Posts: 653

    Poor old Todd!

    Please don't run away and hide now Todd - it's good to have you looking in again.  I stand by what I said, but I didn't envisage you getting such an instant drubbing from all quarters Laughing

    I hope you'll continue to contribute here but I do also sincerely hope that you'll give due thought to the messages you're getting and that, even allowing for our hobby-horses, you'll believe we genuinely have your best interests at heart.

    No offense intended

    Todd,

    I solidly endorse Tex's last sentance.  We all only have your best interests at heart.  It certainly is not anyone's intention to add more stress or cause for further depression.

    However, I was must confess to reading between your lines. I felt that you might just be sharing your latest info so that many of us might offer some additional moral support.  I know you intellectually understand the importance of a healthy diet and exercise (as you said as much).  The only question is how best to do it.

    Regardless, please accept my apology if my post offended you.  I actually can talk about lots of other things that have nothing to do with diet or nutrition.  Just don't get me started about flying.  It's my particular passion (just as motor-sickles are to Ron and Fox, amongst others).  But since starting on Sutent I am now grounded by the FAA - so that is the one topic that depresses me the most.

  • Limelife50
    Limelife50 Member Posts: 476
    foxhd said:

    dosage

    Ange


     

    Posts: 657
    Joined: Jul 2012

    Aug 04, 2013 - 2:56 pm


    I am so glad that you are back Fox and you got a free chemical peel too. Rest up.

    Here's what I found about the IL-2 dosage. It also has a built-in calculator.

    http://reference.medscape.com/drug/interleukin-2-proleukin-aldesleukin-342203

    Metastatic Renal Cell Carcinoma, Metastatic Melanoma

    600,000 International Units/kg (0.037 mg/kg) IV over 15 minutes q 8hr x maximum 14 doses, THEN  9 days of rest, then a maximum of 14 more doses

    Retreatment: evaluate after 4 weeks, advisable only if tumor shrinkage & no retreatment contraindications



     

    , Here is a repost from Alexandra.

    Hey Fox

    Enjoy your ride and good luck hope you are up to toughing out yet another round.

  • todd121
    todd121 Member Posts: 1,448

    No offense intended

    Todd,

    I solidly endorse Tex's last sentance.  We all only have your best interests at heart.  It certainly is not anyone's intention to add more stress or cause for further depression.

    However, I was must confess to reading between your lines. I felt that you might just be sharing your latest info so that many of us might offer some additional moral support.  I know you intellectually understand the importance of a healthy diet and exercise (as you said as much).  The only question is how best to do it.

    Regardless, please accept my apology if my post offended you.  I actually can talk about lots of other things that have nothing to do with diet or nutrition.  Just don't get me started about flying.  It's my particular passion (just as motor-sickles are to Ron and Fox, amongst others).  But since starting on Sutent I am now grounded by the FAA - so that is the one topic that depresses me the most.

    No offense taken

    I just got around to coming back and reading again. Wasn't offended, because I hadn't seen the replies until later. Lol. But still not offended.

    Someone asked my age. I'm 51.

    As far as drinking goes, it's really a pretty occasional thing.

    I know what to do on diet and exercise, and I know it's important, but for whatever reason having trouble doing it regularly. I do it in fits and starts. I get busy at work, forget to shop, or have something going on, run out of food at home, or find myself off somewhere with friends or family and end up eating somewhere the choices aren't the best. It's all excuses, but it's what is happening.

    I live alone. I find it a real challenge shopping and cooking for one person.

    It's absolutely true. If having the cancer possibly come back isn't motivation enough to quit, for example, eating sugar, what would be? I can't answer that. I think eating has been how I've been managing my stress for awhile.

    Thanks to Texas for the advice on the anti-depressants. My onc sent me to see a psychiatrist today about the anxiety, and sure enough he wants to put me on an anti-depressant. I haven't started it yet. He did also advise me to exercise.

    Thanks for the advice everyone. I know you have my best interest in mind. I'm already pretty hard on myself, but I'm just as stubborn as I can be in some areas and this has been a life-long problem for me.

    Todd

     

  • angec
    angec Member Posts: 924
    foxhd said:

    dosage

    Ange


     

    Posts: 657
    Joined: Jul 2012

    Aug 04, 2013 - 2:56 pm


    I am so glad that you are back Fox and you got a free chemical peel too. Rest up.

    Here's what I found about the IL-2 dosage. It also has a built-in calculator.

    http://reference.medscape.com/drug/interleukin-2-proleukin-aldesleukin-342203

    Metastatic Renal Cell Carcinoma, Metastatic Melanoma

    600,000 International Units/kg (0.037 mg/kg) IV over 15 minutes q 8hr x maximum 14 doses, THEN  9 days of rest, then a maximum of 14 more doses

    Retreatment: evaluate after 4 weeks, advisable only if tumor shrinkage & no retreatment contraindications



     

    , Here is a repost from Alexandra.

    Thanks Fox! It sounds like an

    Thanks Fox! It sounds like an awful lot! Wow! No wonder so many reactions!  Overload, but well worth it!  I feel so sory for Alex too. I read she has recently had a recurrence! It stinks!  I hope she gets the treatment she needs sooner than later!  You all are an inspiration to me! I have grown immensely in many ways, just from reading your posts.  Everyone take care and keep living!

     

    Todd.... have you seen the book called "Saving Normal"?  It is interesting...  All my best!

  • Limelife50
    Limelife50 Member Posts: 476
    todd121 said:

    No offense taken

    I just got around to coming back and reading again. Wasn't offended, because I hadn't seen the replies until later. Lol. But still not offended.

    Someone asked my age. I'm 51.

    As far as drinking goes, it's really a pretty occasional thing.

    I know what to do on diet and exercise, and I know it's important, but for whatever reason having trouble doing it regularly. I do it in fits and starts. I get busy at work, forget to shop, or have something going on, run out of food at home, or find myself off somewhere with friends or family and end up eating somewhere the choices aren't the best. It's all excuses, but it's what is happening.

    I live alone. I find it a real challenge shopping and cooking for one person.

    It's absolutely true. If having the cancer possibly come back isn't motivation enough to quit, for example, eating sugar, what would be? I can't answer that. I think eating has been how I've been managing my stress for awhile.

    Thanks to Texas for the advice on the anti-depressants. My onc sent me to see a psychiatrist today about the anxiety, and sure enough he wants to put me on an anti-depressant. I haven't started it yet. He did also advise me to exercise.

    Thanks for the advice everyone. I know you have my best interest in mind. I'm already pretty hard on myself, but I'm just as stubborn as I can be in some areas and this has been a life-long problem for me.

    Todd

     

    Diet

    I buy those 2 pound bags of ready to eat lettuce from Sams Club i also get me eggs ham and turkey and other veggies and then i put it all together to make salads to eat for my lunch during the week.I also bike any where from 50 to 100 miles a week and i still have all of my hair and very little if any grey hair and i am 52  years of age and sorry but  considering the three cancer surgeries i have endured i still look better than most guys my age.Now for the dark side i also just love that Miller Lite beer for which i usually drink maybe anywhere from a 12 pack to at times a case a week and what can i say i am pretty Damm Happy.I think sometimes its all about perspective and how we veiw ourselfs.Hey Todd just a quick question have you ever seen the movie called Shawshank Redemption if so their is a quote Morgan Freeman makes during that movie,well i will let you figure that out.

  • todd121
    todd121 Member Posts: 1,448

    Diet

    I buy those 2 pound bags of ready to eat lettuce from Sams Club i also get me eggs ham and turkey and other veggies and then i put it all together to make salads to eat for my lunch during the week.I also bike any where from 50 to 100 miles a week and i still have all of my hair and very little if any grey hair and i am 52  years of age and sorry but  considering the three cancer surgeries i have endured i still look better than most guys my age.Now for the dark side i also just love that Miller Lite beer for which i usually drink maybe anywhere from a 12 pack to at times a case a week and what can i say i am pretty Damm Happy.I think sometimes its all about perspective and how we veiw ourselfs.Hey Todd just a quick question have you ever seen the movie called Shawshank Redemption if so their is a quote Morgan Freeman makes during that movie,well i will let you figure that out.

    Shawshank Redemption

    I did see the movie. Can't remember the quote.

    With regards to hair...mine's been gone since I was in my early 20's. I saved a heck of a lot of money on shampoo and haircuts. :)

    I have thought about getting a bike. I think that needs to happen soon. I live in a beautiful hilly area and there's a nice place to bike nearby.

    To everybody else that were giving me heck, I've gone on 3 walks in the last 2 days and I joined the gym right next to my office today so it's convenient to stop in for an hour after work a few days a week. My dog really liked the walks. Can exercise work almost immediately? Because I feel better already. We've had gorgeous weather here.

    I decided it was that or anti-depressants. The box of anti-depressants is sitting on my coffee table to remind me to decide what I want to do: take pills, or eat well and exercise.

    Todd

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

    Shawshank Redemption

    I did see the movie. Can't remember the quote.

    With regards to hair...mine's been gone since I was in my early 20's. I saved a heck of a lot of money on shampoo and haircuts. :)

    I have thought about getting a bike. I think that needs to happen soon. I live in a beautiful hilly area and there's a nice place to bike nearby.

    To everybody else that were giving me heck, I've gone on 3 walks in the last 2 days and I joined the gym right next to my office today so it's convenient to stop in for an hour after work a few days a week. My dog really liked the walks. Can exercise work almost immediately? Because I feel better already. We've had gorgeous weather here.

    I decided it was that or anti-depressants. The box of anti-depressants is sitting on my coffee table to remind me to decide what I want to do: take pills, or eat well and exercise.

    Todd

    Your redemption.

    Sure can, Todd.  Good for you and good for your dog too! Congratulations on making such a fine start. Stick at it and it becomes its own reward.