IL-2 Update

DMike
DMike Member Posts: 259

Well, round 1 of HD IL-2 is behind me. Today is my 3rd day home.

I managed to take 11 of 14 infusions. I took the first 9 in a row, then we had some problems with elevated billirubin. In fact, I turned a nice shade of orange. My natural billirubin reading is always high normal, so that probably has something to do with that problem.

It's interesting that each day home seems to offer up a new set of side effects. Monday and Tuesday were all about peeling skin and itching. Today, it feels like I'm getting an infusion again with the nausea and flushed skin feelings. Overall, it's not so bad. I'm just hoping for good results. I start round 2 next Tuesday, April 23rd.

--David

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Comments

  • alice124
    alice124 Member Posts: 896
    IL-2 Update

    David,

    So glad to see you're home from round one and you're feeling reasonably well. John and I have been wondering how you were doing in the wake of the treatment. Try to get lots of rest before next round. I know that was a challenge for John. Treatment left him with a raw edge that made sleep/rest difficult, intensified by the peeling and itching.

    Positive thoughts continue to bullseye you from Baltimore. Take good care of yourself and keep us updated!     

  • foxhd
    foxhd Member Posts: 3,181
    alice124 said:

    IL-2 Update

    David,

    So glad to see you're home from round one and you're feeling reasonably well. John and I have been wondering how you were doing in the wake of the treatment. Try to get lots of rest before next round. I know that was a challenge for John. Treatment left him with a raw edge that made sleep/rest difficult, intensified by the peeling and itching.

    Positive thoughts continue to bullseye you from Baltimore. Take good care of yourself and keep us updated!     

    Awesome!

    Good Work. Glad you did so well. Get some good rest and be ready for the next one. You know all the side effects will go away. You are well prepared.

  • Limelife50
    Limelife50 Member Posts: 476
    Great

    Good going David,i am also hoping for those good results

  • AprilandChuck
    AprilandChuck Member Posts: 110
    Good job..HD IL2 is a

    Good job..HD IL2 is a bugger...hydrate and rest in this short break time...keep lotioning..You are doing great :D 

  • DMike
    DMike Member Posts: 259
    Thanks

    Thanks everybody. I'll do my best to make myself and the group proud!

    David

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

    Thanks

    Thanks everybody. I'll do my best to make myself and the group proud!

    David

    IL2

    David, we know you'll do your best and I'm sure you will succeed.

  • toolman1
    toolman1 Member Posts: 44

    Good job..HD IL2 is a

    Good job..HD IL2 is a bugger...hydrate and rest in this short break time...keep lotioning..You are doing great :D 

    Having been down that same road, last November, (2012) for my 2 rounds, I was SOOO relieved to be out of that hospital room. The first round (11 infusions) went fairly easily, and the side effects weren't too terrible, (itching was the worst), but after the second round, (7 infusions), my wife couldn't get me outta that hospital fast enough! I was miserable. Had massive skin peel going on EVERYWHERE, (yea, even the private's region), and all the Eucerin in the world wasn't relieving the never ending itch. My Oncologist was truly inspired, telling my wife and I that when patients had such a massive response to the IL-2 treatments, it was usually a good sign that the treatment would be a success. He also prescribed Hydroxyz HCL 50 mg to combat the itching. It wasn't until the first 3 month scan that the realization hit us all, that for me, the treatment had no impact on any of the mets. GRRRR!!!! And even then, the peeling and itching was still present, mostly at the extremities, (feet and hands). 

    The ONLY anatomical improvement for me was, that I had been treated for decades for a scalp condition called Seborreah (sp?), which miraculously, cleared up, and hasn't returned as of yet. I'm certain that my dermatologist is wondering where I disappeared to. So stay strong my friend. We all are fighting a common foe! Gary

  • faithlou
    faithlou Member Posts: 41
    I am right behind you!

    Starting IL-2 May 14th.  I will be following your process, if you don't mind.  I have not posted in some time.  I had to take a detour for radiation to fix a problem before I could start IL-2.  Good luck David!  Lou

  • DMike
    DMike Member Posts: 259
    faithlou said:

    I am right behind you!

    Starting IL-2 May 14th.  I will be following your process, if you don't mind.  I have not posted in some time.  I had to take a detour for radiation to fix a problem before I could start IL-2.  Good luck David!  Lou

    May IL2

    Lou,

    I know about those detours before starting IL2. I didn't think I would ever get started. I'm more relaxed heading in to round 2 because a lot of the "unknowns" are now knowns.

    Best of luck to you and I'll be glad to try to answer any question you may have.

    --David

  • DMike
    DMike Member Posts: 259
    Round 2

    I'm home after round 2. I managed 13 of 14 infusions this time. I had a couple of bad days of itching and peeling but that has passed. I don't think the peeling will stop for awhile. I'm tired and brain dead but I'm carrying on. I gained 14 lbs. which is a freak- out moment for a cyclist but that should go away soon, I hope. Alice, I think I'm different from John when it comes to food. I'm starving all of the time. And it's good to get home and have a proper cup of tea!

    --David

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

    Round 2

    I'm home after round 2. I managed 13 of 14 infusions this time. I had a couple of bad days of itching and peeling but that has passed. I don't think the peeling will stop for awhile. I'm tired and brain dead but I'm carrying on. I gained 14 lbs. which is a freak- out moment for a cyclist but that should go away soon, I hope. Alice, I think I'm different from John when it comes to food. I'm starving all of the time. And it's good to get home and have a proper cup of tea!

    --David

    Round 2

    That's a fantastic performance David.  More power to your elbow! That athleticism is standing you in great stead, isn't it?

    Glad to hear you're back to enjoying a good cuppa.

  • foxhd
    foxhd Member Posts: 3,181

    Round 2

    That's a fantastic performance David.  More power to your elbow! That athleticism is standing you in great stead, isn't it?

    Glad to hear you're back to enjoying a good cuppa.

    Yep, knew you would do it

    I feel the same as Wedgie. Being an athlete isn't all about being physically strong. It is having learned how to dig in and tough it out. You are proving that now. I wonder frequently how I would respond to the treatment. I'm impressed. Keep doing good. I'm pulling for you.

  • alice124
    alice124 Member Posts: 896
    DMike said:

    Round 2

    I'm home after round 2. I managed 13 of 14 infusions this time. I had a couple of bad days of itching and peeling but that has passed. I don't think the peeling will stop for awhile. I'm tired and brain dead but I'm carrying on. I gained 14 lbs. which is a freak- out moment for a cyclist but that should go away soon, I hope. Alice, I think I'm different from John when it comes to food. I'm starving all of the time. And it's good to get home and have a proper cup of tea!

    --David

    Way to tough it out David~

    Wow, that's impressive David -- 11 out of 14 and then 13 out of 14 -- and still hungry.  I think that ravenous  appetite is a wonderful and positive sign. 

     

    Will be anxiously waiting with you for the scans!

     

     

  • DMike
    DMike Member Posts: 259
    Thanks!

    Thanks everyone. Your support means so much to me!

    --David

  • faithlou
    faithlou Member Posts: 41
    Following your updates

    Following your updates and glad you are doing well.  Wishing you the best on your results and next round of scans!  I'm starting IL-2 at Vanderbilt on Tuesday.  Wish me luck.

    Lou

     

     

  • DMike
    DMike Member Posts: 259
    faithlou said:

    Following your updates

    Following your updates and glad you are doing well.  Wishing you the best on your results and next round of scans!  I'm starting IL-2 at Vanderbilt on Tuesday.  Wish me luck.

    Lou

     

     

    Good Luck!

    Lou,

    The IL2 staff at Vanderbilt is wonderful. The nurses will look out for you. They have a strict protocol 

    they follow and they know what they are doing. It will be difficult at times, but you can do it.  I'll be thinking about you and I wish you the best.

    David

  • alice124
    alice124 Member Posts: 896
    faithlou said:

    Following your updates

    Following your updates and glad you are doing well.  Wishing you the best on your results and next round of scans!  I'm starting IL-2 at Vanderbilt on Tuesday.  Wish me luck.

    Lou

     

     

    Tagging Along

    Lou,

    Just want to mimic David's good wishes as you begin your journey tomorrow. While it's a tough treatment, as David says, the facilities such as Vanderbilt are so proficient and professional, they put you at ease. Good luck. Will be waiting for the positive results to follow!

     

    P.S. Curious about your picture??? I had a similar look a few years back when I was put behind bars for a fund raiser and had to raise bail money for charity.

  • faithlou
    faithlou Member Posts: 41
    alice124 said:

    Tagging Along

    Lou,

    Just want to mimic David's good wishes as you begin your journey tomorrow. While it's a tough treatment, as David says, the facilities such as Vanderbilt are so proficient and professional, they put you at ease. Good luck. Will be waiting for the positive results to follow!

     

    P.S. Curious about your picture??? I had a similar look a few years back when I was put behind bars for a fund raiser and had to raise bail money for charity.

    Thanks for the well wishes

    Thanks for all the well wishes. Alice about my pic, you guess it, MS fund raiser a couple of years ago. Laughing

  • faithlou
    faithlou Member Posts: 41
    faithlou said:

    Thanks for the well wishes

    Thanks for all the well wishes. Alice about my pic, you guess it, MS fund raiser a couple of years ago. Laughing

    9/14 first round

    Week one done. Got 9 of the 14.  Never a dull moment, went into Afib on #8, stopped.  Fixed it and rested one day and took 2 more doses.  It' true, it's true!  Was does not kill you makes you stronger. Cool

    Starting week 2 on Tuesday wish me luck!

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

    9/14 first round

    Week one done. Got 9 of the 14.  Never a dull moment, went into Afib on #8, stopped.  Fixed it and rested one day and took 2 more doses.  It' true, it's true!  Was does not kill you makes you stronger. Cool

    Starting week 2 on Tuesday wish me luck!

    Good luck!!!!!!!

    I just got a chill. Good work. Boy, I really like tough women. I knew you would prove it to us. Amazing how strong we can be. They will need a cage to keep you away from completing the treatments. we are pulling for you. We do this together.