IL-2 Update

24

Comments

  • 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.

  • 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.

  • faithlou
    faithlou Member Posts: 41
    foxhd said:

    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.

    Thanks fox!

    Thank you all for your encouraging words.  And I can not say how helpful all the information on this blog is, I am a need to know person.  This place truely helps me prepare for each round of the battle.  Thanks again all.

  • alice124
    alice124 Member Posts: 896 Member
    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!

    Wishing you luck+

    Surrounding you with positivity and good wishes as you start week two. Stay strong and fight hard. You can do this!!!

  • DMike
    DMike Member Posts: 259
    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!

    Round 1

    Hi Lou,

    Glad to see you have week one behind you. You're tough! Week 2 was hard but it was easier in some ways because I knew what to expect. One thing that happened to me in week 2 was massive skin peeling. You may have that to look forward to. You've proven you're tough, so you can handle it!

    Best of luck and I'll be thinking about you like I was on this round.

    --David

  • faithlou
    faithlou Member Posts: 41
    DMike said:

    Round 1

    Hi Lou,

    Glad to see you have week one behind you. You're tough! Week 2 was hard but it was easier in some ways because I knew what to expect. One thing that happened to me in week 2 was massive skin peeling. You may have that to look forward to. You've proven you're tough, so you can handle it!

    Best of luck and I'll be thinking about you like I was on this round.

    --David

    Week 2 Done.

    Ok. This is day 3 home from my week 2.  It did not kill me.  yea....  (Only felt like it.) Got 8 this time. Stop go. Stop go. Blood work all over the place.   Mike same here, massive dry skin and peeling.  Still itching and lotioning. Starting to feel better today was able to eat breakfast.  Now for the wait on scans in mid July.  Wishing the best for you on your upcoming scans Mike.

  • alice124
    alice124 Member Posts: 896 Member
    faithlou said:

    Week 2 Done.

    Ok. This is day 3 home from my week 2.  It did not kill me.  yea....  (Only felt like it.) Got 8 this time. Stop go. Stop go. Blood work all over the place.   Mike same here, massive dry skin and peeling.  Still itching and lotioning. Starting to feel better today was able to eat breakfast.  Now for the wait on scans in mid July.  Wishing the best for you on your upcoming scans Mike.

    Way to go

    I feel your pain Lou (and David). That itching and peeling that come from the IL-2 are brutal; I watched how miserable it made John. And it's not a nice memory.  In fact, I'm reaching for the skin cream as I respond here. But you both have proven you're tougher than the enemy you're facing and I'm betting you come out on the winning side of this battle.  Keeping fingers and toes crossed.  You both rock. Stay strong and determined and feel all our support behind you!

  • DMike
    DMike Member Posts: 259
    alice124 said:

    Way to go

    I feel your pain Lou (and David). That itching and peeling that come from the IL-2 are brutal; I watched how miserable it made John. And it's not a nice memory.  In fact, I'm reaching for the skin cream as I respond here. But you both have proven you're tougher than the enemy you're facing and I'm betting you come out on the winning side of this battle.  Keeping fingers and toes crossed.  You both rock. Stay strong and determined and feel all our support behind you!

    Time To Rest

    Lou,

    Glad to hear you have round 2 behind you. Great job on getting through it! The itching and peeling are tough but they will pass. It's time to relax for a few weeks. Dr. Sosman told me recovery time is 5 weeks. I felt good enough after 4 weeks to get back on my bike. I've been riding most days lately. I hope you feel strong soon too and I hope IL2 is a huge success for you! I have my scan on Monday at an in-network facility, then I see Dr. Sosman on June 18th to see what's next. Thanks for the nice thoughts and well wishes. I'm sending them right back at you.

    Alice, thanks for being so kind as usual. It helps as my scan date approaches!

    --David

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

    Time To Rest

    Lou,

    Glad to hear you have round 2 behind you. Great job on getting through it! The itching and peeling are tough but they will pass. It's time to relax for a few weeks. Dr. Sosman told me recovery time is 5 weeks. I felt good enough after 4 weeks to get back on my bike. I've been riding most days lately. I hope you feel strong soon too and I hope IL2 is a huge success for you! I have my scan on Monday at an in-network facility, then I see Dr. Sosman on June 18th to see what's next. Thanks for the nice thoughts and well wishes. I'm sending them right back at you.

    Alice, thanks for being so kind as usual. It helps as my scan date approaches!

    --David

    Time to rest

    Lou and David, congrats to you both - keep up the good work!  I hope the upcoming scan confirms all going to plan David.

  • DMike
    DMike Member Posts: 259
    Thanks!

    Thanks TW! I'm hoping for the best.

    --David

  • faithlou
    faithlou Member Posts: 41
    DMike said:

    Thanks!

    Thanks TW! I'm hoping for the best.

    --David

    Hoping for the best!

    David,  thinking of you today.  Hoping that you got a good report from your scans.  I know that the waiting is hard.  I go for my scans on July 15th.  Wondering what is next.

  • alice124
    alice124 Member Posts: 896 Member
    faithlou said:

    Hoping for the best!

    David,  thinking of you today.  Hoping that you got a good report from your scans.  I know that the waiting is hard.  I go for my scans on July 15th.  Wondering what is next.

    David and Lou - IL 2 scans

    Lou - I'm posting under your note to bring the post to the top and  let David know we all join you in thinking of him and wondering how his scan went.  David -- Hope you're just away celebrating the good news scan!!!

     

    Also sending positive energy your way--Lou--for your upcoming scan. 

  • NanaLou
    NanaLou Member Posts: 71
    alice124 said:

    David and Lou - IL 2 scans

    Lou - I'm posting under your note to bring the post to the top and  let David know we all join you in thinking of him and wondering how his scan went.  David -- Hope you're just away celebrating the good news scan!!!

     

    Also sending positive energy your way--Lou--for your upcoming scan. 

    Joining in Hoping for the best

    David,

    I just want to let you know I am joining Lou and Alice in Hoping for the best. I have been thinking of you all week long. Right now I am on my way to walk in Relay of Life. Take care and hope to hear from ya soon.

    Nancy

     

  • DMike
    DMike Member Posts: 259
    Latest

    Thanks for thinking of me everyone! 

    I met with my IL-2 doctor this week. It's sort of a long story but here goes. I had my scans done the week before I went to Vanderbilt for insurance purposes. So, I knew the results before I went to Vanderbilt. The results weren't good. All nodules had grown.

    It was a little frustrating because my doctor at Vanderbilt had a hard time viewing the scans from the discs I brought with me, so he was going more on the radiology reports than the scans. He said he thought I had minor growth, so he wants to wait 4 weeks and do another scan in case there is a delayed response. He says the new scan has to show shrinkage (stability won't do) or we won't continue IL2. I'm supposed to contact him next week after he studies the scans more to see if he still wants to proceed with this plan.

    My oncologist at UAB (local) says there is no way he can get another CT scan approved with insurance with such a short time span between scans, so I'll have to get it done out of network (maybe not covered at all) by insurance at Vanderbilt.

    So, we thought we were going to get a definite answer last week, but we're back in waiting mode for 4 weeks.

    Thanks again for thinking of me, David

     

     

     

  • AprilandChuck
    AprilandChuck Member Posts: 110
    DMike said:

    Latest

    Thanks for thinking of me everyone! 

    I met with my IL-2 doctor this week. It's sort of a long story but here goes. I had my scans done the week before I went to Vanderbilt for insurance purposes. So, I knew the results before I went to Vanderbilt. The results weren't good. All nodules had grown.

    It was a little frustrating because my doctor at Vanderbilt had a hard time viewing the scans from the discs I brought with me, so he was going more on the radiology reports than the scans. He said he thought I had minor growth, so he wants to wait 4 weeks and do another scan in case there is a delayed response. He says the new scan has to show shrinkage (stability won't do) or we won't continue IL2. I'm supposed to contact him next week after he studies the scans more to see if he still wants to proceed with this plan.

    My oncologist at UAB (local) says there is no way he can get another CT scan approved with insurance with such a short time span between scans, so I'll have to get it done out of network (maybe not covered at all) by insurance at Vanderbilt.

    So, we thought we were going to get a definite answer last week, but we're back in waiting mode for 4 weeks.

    Thanks again for thinking of me, David

     

     

     

    hoping the 4 weeks bring good news

    Waiting is tough..but we are all here waiting and hoping and praying with you..please keep us updated!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    hoping the 4 weeks bring good news

    Waiting is tough..but we are all here waiting and hoping and praying with you..please keep us updated!

    Scans

    Really sorry to hear about this situation David and hoping and praying that the next scan brings good news.  We're all sharing the wait with you to shorten it for you and willing that good result!

  • alice124
    alice124 Member Posts: 896 Member
    DMike said:

    Latest

    Thanks for thinking of me everyone! 

    I met with my IL-2 doctor this week. It's sort of a long story but here goes. I had my scans done the week before I went to Vanderbilt for insurance purposes. So, I knew the results before I went to Vanderbilt. The results weren't good. All nodules had grown.

    It was a little frustrating because my doctor at Vanderbilt had a hard time viewing the scans from the discs I brought with me, so he was going more on the radiology reports than the scans. He said he thought I had minor growth, so he wants to wait 4 weeks and do another scan in case there is a delayed response. He says the new scan has to show shrinkage (stability won't do) or we won't continue IL2. I'm supposed to contact him next week after he studies the scans more to see if he still wants to proceed with this plan.

    My oncologist at UAB (local) says there is no way he can get another CT scan approved with insurance with such a short time span between scans, so I'll have to get it done out of network (maybe not covered at all) by insurance at Vanderbilt.

    So, we thought we were going to get a definite answer last week, but we're back in waiting mode for 4 weeks.

    Thanks again for thinking of me, David

     

     

     

    Latest

    Let's hope that the next scan shows marked improvement, but--if it doesn't--has your oncologist mentioned possible next steps -- Votrient/Sutent or trials?  I would love to see you get in a nivolumab trial; sure wish I could distribute them  to all my dear friends on CSN.

    Just keep in mind there's belief by some ocologists of a latent benefit of IL-2. And considering how well John has done, I believe it.

    Now I am going to share a totally unscientific observation that can probably be blown out of the water by people on this board much smarter than me. But I consider you a friend David, and I'm going to go ahead and share it. When you were able to take the high number of IL-2 doses, I was  a little concerned. If my memory is accurate, you and John hold the record on this CSN board as far as IL-2 doses (24 and 25 respectively) in recent years.  I even searched out other sites to satisfy my curiousity and you guys pretty much hold the  lead spot.  During the first round when John did the entire 14 doses, he had doctors galore stopping by and shaking the "IRON MAN's" hand. Many of them mentioned he was the first person they had known to do the entire 14. While this was encouraging for him, I remember on numerous occasions when this was going on, I'd ask the doctor. "Is this good?" And the answer I would get everytime would be, "it's remarkable"  or "it's extraordinary" but never did  they say it "was good" for his response chances. The doctor's responses combined with their disconcerting expressions suggested to me that it meant  just the opposite. I never shared this with John until after his treatments were over, but in hindsight, I think he saw it too. I've never seen anything in research equating IL-2 success with IL-2 dose tolerance, but I would be interested to see if my limited observations hold up on a larger scale.

    On the up side, the IL-2 may have you set up to respond completely to the next treatment. Or maybe the four week scan will be better than expected. I certainly hope so.

    Lou - this is in no way meant to discourage you. It appears to me (in my totally unscientific formula) that you're on course for complete response!

    David - You're way too tough and too much a jock not to beat this thing. I'm confident your success is just around the corner. Know we're all proud of you and squeezing your hand  in support. 

     

     

  • DMike
    DMike Member Posts: 259
    IL2

    Hi everyone,

    Thanks for joining me with encouragement on this crazy journey. We'll see what happens on the next scan. Alice, I know what you're saying and it very well could be. Some days I think I'm beginning to understand RCC and then the next day I say what the heck. I don't know what to think.

    It looks like Votrient will be the next step if IL2 doesn't work. They do have the 4 arm Nivolumab/sutent/votrient/yervoy trial in Nashville. I talked to them and my insurance company about trial finances. My initial contact with BCBS showed that they won't cover trials. I talked with the trial group and it looks like I'd have to pay for more than I can pay for. I haven't given up on it yet, but it doesn't look good.

    My IL2 doctor has one of his melanoma patients in the trial and he (doctor) was very concerned about the toxicity of the trial. He told me they were currently not taking patients there at this time. He said they may be taking more people in the trial in 4 or 5 weeks. He is at Vanderbilt and the trial is at the Sarah Cannon Research Institute in Nashville. He also said Nivolumab may eventually replace IL2.

    I'll be at the next crossroads on July 23rd.

    David

     

  • DMike
    DMike Member Posts: 259
    Lou - Good Luck

    Hi Lou,

    I think Monday is your big scan day, right? I hope you have great results. I'll be there the following Monday for my 4 week 2nd chance scan. I'll be thinking about you on Monday.

    David

  • Limelife50
    Limelife50 Member Posts: 476
    DMike said:

    IL2

    Hi everyone,

    Thanks for joining me with encouragement on this crazy journey. We'll see what happens on the next scan. Alice, I know what you're saying and it very well could be. Some days I think I'm beginning to understand RCC and then the next day I say what the heck. I don't know what to think.

    It looks like Votrient will be the next step if IL2 doesn't work. They do have the 4 arm Nivolumab/sutent/votrient/yervoy trial in Nashville. I talked to them and my insurance company about trial finances. My initial contact with BCBS showed that they won't cover trials. I talked with the trial group and it looks like I'd have to pay for more than I can pay for. I haven't given up on it yet, but it doesn't look good.

    My IL2 doctor has one of his melanoma patients in the trial and he (doctor) was very concerned about the toxicity of the trial. He told me they were currently not taking patients there at this time. He said they may be taking more people in the trial in 4 or 5 weeks. He is at Vanderbilt and the trial is at the Sarah Cannon Research Institute in Nashville. He also said Nivolumab may eventually replace IL2.

    I'll be at the next crossroads on July 23rd.

    David

     

    Hi David

    Heres hoping you get some positive news on the 23rd