Finished IL-2 treatments!

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Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #22
    Baaa-bs said:

    You are truly amazing

    I can't imangine how elated you are to be done with this for the moment. You have endured so much, and I can't tell you what an insiration you have been to all of us. 

    Enjoy rediscovering how "you" feel, and not the drugs.

    In 3 weeks, we start talking about how I'm reacting to the votrient.

    Thanks everyone

    We do what we got to do. Finally coming around. Starting to feel ok, but weak and tired. All my muscle is gone. Went from 203 to 176 pounds. I've got a long way back to get fit again. And I'm not ready to even start. Maybe another week. My mind has cleared so that is good. Still a sense of being chilled to the bone. Totally amazing. Too bad there is no correlation to effectiveness and how badly it treats the rest of the body. I also get sharp,tearing pains in my arms at times when I move. Like muscle ripping. I don't think I have heard of anyone else who has had such a difficult reaction to the IL-2. Oh yeah, Blood work shows no permanent damage to my heart. Enzymes have returned to normal along with muscle enzymes. I resume zometa next week. Fortunately I've had no bone pain, so that is good. What a trip. Funny thing is everyone who sees me, even at the cancer center says, "You are looking great." I laugh. They don't see my muscled arms reduced to wrinkly toothpicks. They look like the arms of an anorexic bed bound 90 yo. Incredible. My doctor tells me everything will come back and I believe her. I'm patient. And motivated. Not for a moment do I think I won't do well. Maybe not cured, but stable for life. Considering how many tumors I had 2 years ago, and now only a few have remained. Stubborn but persistant. But so am I.

    I do hope that I am able to display the take no prisoners approach to fighting this crappy disease. The fear and helplessness many feel after diagnosis must be replaced with agression. There is no room for doubt. Find the proper care team. Agree with the plan of care and attack. It is your life. Your family needs you. I hope everyone here dies from old age. I love you all. Fox.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #23
    foxhd said:

    Thanks everyone

    We do what we got to do. Finally coming around. Starting to feel ok, but weak and tired. All my muscle is gone. Went from 203 to 176 pounds. I've got a long way back to get fit again. And I'm not ready to even start. Maybe another week. My mind has cleared so that is good. Still a sense of being chilled to the bone. Totally amazing. Too bad there is no correlation to effectiveness and how badly it treats the rest of the body. I also get sharp,tearing pains in my arms at times when I move. Like muscle ripping. I don't think I have heard of anyone else who has had such a difficult reaction to the IL-2. Oh yeah, Blood work shows no permanent damage to my heart. Enzymes have returned to normal along with muscle enzymes. I resume zometa next week. Fortunately I've had no bone pain, so that is good. What a trip. Funny thing is everyone who sees me, even at the cancer center says, "You are looking great." I laugh. They don't see my muscled arms reduced to wrinkly toothpicks. They look like the arms of an anorexic bed bound 90 yo. Incredible. My doctor tells me everything will come back and I believe her. I'm patient. And motivated. Not for a moment do I think I won't do well. Maybe not cured, but stable for life. Considering how many tumors I had 2 years ago, and now only a few have remained. Stubborn but persistant. But so am I.

    I do hope that I am able to display the take no prisoners approach to fighting this crappy disease. The fear and helplessness many feel after diagnosis must be replaced with agression. There is no room for doubt. Find the proper care team. Agree with the plan of care and attack. It is your life. Your family needs you. I hope everyone here dies from old age. I love you all. Fox.

    Well you did the really hard

    Well you did the really hard part.. now it is up to the drugs to do their part...  Hope you are back to your old body soon..  I did have pizza and water last Friday in your honor..!  First time I had pizza in well over a year.. tasty..!!    Too bad the weather won;t be nice for a bike ride... but somehow that will happen too..!!   Your take no prisioner approach has always inspired me from day one...  Nice to see you here again..!

    Ron - I don't want a pickle... jus wanna ride my motor sickle... and I don't wanna die... jus wanna ride my motor... sy... cle....

  • DMike
    DMike Member Posts: 259
    #24

    Hey Fox,

    Good to see that the haze is clearing up! My IL2 doc told me 5 weeks after treatment to feel good again. He was pretty close with that figure.

    I remember looking at my arms and legs after treatment and thinking, what the hell happened to my muscles? I was in shock, but it will all come back...to some degree! I just looked and I was doing 2 mile walks, 3 weeks after treatment and I was back on the bike for my first post-IL2 ride of 10 whopping miles :) one month after my last treatment. (Yeah, I'm a workout record nerd!) However, I only had one round of IL2 while you've had 2, but hopefully the 5 week estimate will be good for you too.

    Take care, David

  • foxhd
    foxhd Member Posts: 3,181 Member
    #25
    DMike said:

    Hey Fox,

    Good to see that the haze is clearing up! My IL2 doc told me 5 weeks after treatment to feel good again. He was pretty close with that figure.

    I remember looking at my arms and legs after treatment and thinking, what the hell happened to my muscles? I was in shock, but it will all come back...to some degree! I just looked and I was doing 2 mile walks, 3 weeks after treatment and I was back on the bike for my first post-IL2 ride of 10 whopping miles :) one month after my last treatment. (Yeah, I'm a workout record nerd!) However, I only had one round of IL2 while you've had 2, but hopefully the 5 week estimate will be good for you too.

    Take care, David

    Ron, I had pizza last night. Yum! Beer to come soon. David, amazing ,isn't it? I've had a couple walks. My hips give out easily. But I'll keep at it. I'm a workout nerd also. I want to jog and get my muscles back. I think 5 weeks may be a fair estimate. I can  sleep all night and several hours a day. All I think is WOW! Had my a$$ kicked.

  • TillieSOK
    TillieSOK Member Posts: 252
    #26
    foxhd said:

    Ron, I had pizza last night. Yum! Beer to come soon. David, amazing ,isn't it? I've had a couple walks. My hips give out easily. But I'll keep at it. I'm a workout nerd also. I want to jog and get my muscles back. I think 5 weeks may be a fair estimate. I can  sleep all night and several hours a day. All I think is WOW! Had my a$$ kicked.

    I'm so glad to see you back

    I'm so glad to see you back on the forum and sounding like your old self, kinda sorta.  Can't wait to see those arms all muscled back up.  You'll have to post a new photo when your muscles start popping back under your skin!  You are still my hero.  Right now I'm being a bit of (as my Mammaw would have said) a panty-waist...so time to pull on my big girl granny panties and take care of business, huh?

  • izzycohen
    izzycohen Member Posts: 80
    #27
    God bless you Fox

    You are an inspiration to us "lesser" club members.  You are exactly right about a special membership for those who have been through what you have experienced.  Thinking of and praying for you in Chicagoland.

     

    Izzy

  • I am alive
    I am alive Member Posts: 315
    #28
    "There is no room for doubt" - Fox

    Amen, brother. You did it! Congratulations and welcome back to the pack. We missed you. But go ahead and take it easy. Enjoy your vacay from the forum. I wander off quite a bit myself. Whatever you need to do, when you need it do it -  that's how to surf this baby.   Hugs,

    Peg

  • foxhd
    foxhd Member Posts: 3,181 Member
    #29
    I am alive said:

    "There is no room for doubt" - Fox

    Amen, brother. You did it! Congratulations and welcome back to the pack. We missed you. But go ahead and take it easy. Enjoy your vacay from the forum. I wander off quite a bit myself. Whatever you need to do, when you need it do it -  that's how to surf this baby.   Hugs,

    Peg

    thanx

    for all the support and encouragement. For a while there I didn't know what month, year, or who the president was. All behind me. I'll keep up with the walks and will begin strengthening shortly. I need to continue demonstrating committment toward fighting RCC. It takes effort. I just read that even when the IL-2 works on soft tissue tumors, it isn't as effective on bone mets. That sux. I guess the fight has more rounds to go. Good thing I have got the time.

  • faithlou
    faithlou Member Posts: 41
    #30
    foxhd said:

    thanx

    for all the support and encouragement. For a while there I didn't know what month, year, or who the president was. All behind me. I'll keep up with the walks and will begin strengthening shortly. I need to continue demonstrating committment toward fighting RCC. It takes effort. I just read that even when the IL-2 works on soft tissue tumors, it isn't as effective on bone mets. That sux. I guess the fight has more rounds to go. Good thing I have got the time.

    You are the MAN!

    You are the man!  Just know that anything else from here on out is a piece of cake compared to the IL-2.  You can do anything! As for me, my liver is taking a break from the Votrient.  Don't know what is next for me.  But I am feeling amazing!  Enjoy your recovery time.

    Lou

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #31
    foxhd said:

    thanx

    for all the support and encouragement. For a while there I didn't know what month, year, or who the president was. All behind me. I'll keep up with the walks and will begin strengthening shortly. I need to continue demonstrating committment toward fighting RCC. It takes effort. I just read that even when the IL-2 works on soft tissue tumors, it isn't as effective on bone mets. That sux. I guess the fight has more rounds to go. Good thing I have got the time.

    You defiitely are an

    You defiitely are an inspiration! You are a poster model for strength, resilience and positive attitude!

    Great role model for us all. Keep kicking Big C's A$$ !!!

    Take care!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #32
    Jojo61 said:

    You defiitely are an

    You defiitely are an inspiration! You are a poster model for strength, resilience and positive attitude!

    Great role model for us all. Keep kicking Big C's A$$ !!!

    Take care!

    still work to do.

    Can't win in this war if we don't fight. I've been limited even in walking. Legs tire so much and hips give out. Feet feel like I'm walking barefoot on hot pavement. But I'm going out after I type this. Probably 2 miles. Began first weight training session this morning. Strength is amazingly low. Mostly just went through the routine with minimal weights. Almost embarassing compared to what I used to do just for maintenance. Still down over 20 pounds. But I'll keep at it. Our bodies are resilient. They need to be reintroduced to what we have considered our "normal". There is a built in memory and if we work at what we were used to, it recovers pretty well. If I was not an exerciser, I might be closer to normal. But I don't accept that. It is sort of like the rustiness one gets after putting down the guitar or piano for a year or so. It seems unrecoverable. But surprisingly, stick to it tiveness will prevail. It's our most important job not to give up and accept defeat. We don't bounce back without hard work. and I'm up for it. This is proving more difficult than recovering from surgery. Less pain, but much harder. So, I understand it will take longer than anticipated. Discouraged? Nope. Surprised, for sure.  It will be quite awhile before I can jog again. But the day is coming. (it keeps my buns tight) so it's gotta be in the program. Stay tough everyone. We all do this together.

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