Sending special thoughts and prayers to Neil F. / Nanosecond

angec
angec Member Posts: 924 Member
in Kidney Cancer #1

Neil, i know you have been having it rough for the past few months and I want to send a special message out to you, to let you know I am thinking about you!  I hope your scan goes well today and the Affinitor does the trick for you. In the meantime, I am praying for you. Keep up that positive attitude that you so generously spread around!  Sending you and your family HUGE hugs and deep prayers.  Get back to your ole self so you can share more valuable information with us, you have been our rock!  Wishing you the best!  XXOO

 

Angec

«13

Comments

  • rook
    rook Member Posts: 7 Member
    #2
    I have been anxiously

    I have been anxiously awaiting an update to Nanosecond's PD-L1 trial. Did he fail and move onto Afinnitor? Are you sure? Normally one progression is allowed due to tumor inflammation. Given the timeline, he should be still be getting infusions. I hope all is well.

  • angec
    angec Member Posts: 924 Member
    #3
    rook said:

    I have been anxiously

    I have been anxiously awaiting an update to Nanosecond's PD-L1 trial. Did he fail and move onto Afinnitor? Are you sure? Normally one progression is allowed due to tumor inflammation. Given the timeline, he should be still be getting infusions. I hope all is well.

    I don't know it is my place

    I don't know it is my place to address this but I will.  Neil actually did get off of the trial he was on.  I think it was the Ipl not PD-Ll.  Neil, correct me when you can! :)  He did go on Cabo and that also failed him, and now he is on affinitor, which from the news he just posted on Smart Patients, he said he is stable since the last scan two weeks ago! That is wonderful news!  Hoping Affinitor is the one for him! There are so many now to choose from and with more experience and use, the doctors will be better able to match patients with different ones. Although, the same drug can work differently on different people. Neil would be able to address any questions for you, Rook.  But hang in there, not to worry.  Are you also on the pd-l trial?  I haven't been on the boards too much these days due to too many family members with cancer and other ills. I hope to be more active here in the near future.  Take care..

  • NanoSecond
    NanoSecond Member Posts: 653
    #4
    angec said:

    I don't know it is my place

    I don't know it is my place to address this but I will.  Neil actually did get off of the trial he was on.  I think it was the Ipl not PD-Ll.  Neil, correct me when you can! :)  He did go on Cabo and that also failed him, and now he is on affinitor, which from the news he just posted on Smart Patients, he said he is stable since the last scan two weeks ago! That is wonderful news!  Hoping Affinitor is the one for him! There are so many now to choose from and with more experience and use, the doctors will be better able to match patients with different ones. Although, the same drug can work differently on different people. Neil would be able to address any questions for you, Rook.  But hang in there, not to worry.  Are you also on the pd-l trial?  I haven't been on the boards too much these days due to too many family members with cancer and other ills. I hope to be more active here in the near future.  Take care..

    History

    Ange,

    Thank you so much for posting on my behalf.  As you know, due to the pain meds I am taking, I have had some difficulty concentrating and even just staying awake.

    Rook...

    I am afraid that I did fail that clinical trial.  BTW, it was for an anti-PDL1 drug made by EDS Serono.  Apparently not many participants are doing that well on this particular drug either.

    Regardless, I immediately moved on to Cabo.  But just as quickly failed it as well.

    So a little over 2 weeks ago I started on Afinitor.  A CT-scan yesterday showed (thanks to the grace of God and the prayers and wishes of good will I have been so fortunate to receive) that there has been no progression.  This, for me, is a first.  I have failed, in order: Sutent, Inlyta, anti-PDL1, and Cabo.

    Dr. Hammers was particularly shocked that I did not respond to Cabo at all.  He said I was his first failure.

    Regardless, I have a reprive which, to be honest, I actually did not think was in the cards for me.

    Thank you so very much,

     

    -Neil (NanoSecond)

  • APny
    APny Member Posts: 1,995 Member
    #5
    NanoSecond said:

    History

    Ange,

    Thank you so much for posting on my behalf.  As you know, due to the pain meds I am taking, I have had some difficulty concentrating and even just staying awake.

    Rook...

    I am afraid that I did fail that clinical trial.  BTW, it was for an anti-PDL1 drug made by EDS Serono.  Apparently not many participants are doing that well on this particular drug either.

    Regardless, I immediately moved on to Cabo.  But just as quickly failed it as well.

    So a little over 2 weeks ago I started on Afinitor.  A CT-scan yesterday showed (thanks to the grace of God and the prayers and wishes of good will I have been so fortunate to receive) that there has been no progression.  This, for me, is a first.  I have failed, in order: Sutent, Inlyta, anti-PDL1, and Cabo.

    Dr. Hammers was particularly shocked that I did not respond to Cabo at all.  He said I was his first failure.

    Regardless, I have a reprive which, to be honest, I actually did not think was in the cards for me.

    Thank you so very much,

     

    -Neil (NanoSecond)

    My thoughts and prayers are

    My thoughts and prayers are with you and I'm hoping Afinitor does what the other meds couldn't.

  • I am alive
    I am alive Member Posts: 315
    #6
    Three cheers for Afinitor!

    I recently ended 22 months on a trial with Afinitor & Avastin. Enjoyed stability the whole time - still stable, as far as I know. Left because of SEs. Like you, I have chromophobe. My onc told me Afinitor is one of the few drugs that chromophobe traditionally responds to so I am hoping you enjoy a nice long run on it. Wishing you all the best. Your posts on these forums are golden. Pax.

  • adman
    adman Member Posts: 336
    #7
    God Bless....

     

    ...Sending you good thoughts and vibes, may God bless you and keep you safe!! 

     

     

  • todd121
    todd121 Member Posts: 1,448 Member
    #8
    NanoSecond said:

    History

    Ange,

    Thank you so much for posting on my behalf.  As you know, due to the pain meds I am taking, I have had some difficulty concentrating and even just staying awake.

    Rook...

    I am afraid that I did fail that clinical trial.  BTW, it was for an anti-PDL1 drug made by EDS Serono.  Apparently not many participants are doing that well on this particular drug either.

    Regardless, I immediately moved on to Cabo.  But just as quickly failed it as well.

    So a little over 2 weeks ago I started on Afinitor.  A CT-scan yesterday showed (thanks to the grace of God and the prayers and wishes of good will I have been so fortunate to receive) that there has been no progression.  This, for me, is a first.  I have failed, in order: Sutent, Inlyta, anti-PDL1, and Cabo.

    Dr. Hammers was particularly shocked that I did not respond to Cabo at all.  He said I was his first failure.

    Regardless, I have a reprive which, to be honest, I actually did not think was in the cards for me.

    Thank you so very much,

     

    -Neil (NanoSecond)

    Glad for the news of your reprieve.

    Neil,

    So glad to have your update. I had noticed few posts in recent weeks. You've been missed.

    You're in my thoughts and I hope Afinitor does the job.

    Best wishes,

    Todd

  • brea588
    brea588 Member Posts: 240
    #9
    NanoSecond said:

    History

    Ange,

    Thank you so much for posting on my behalf.  As you know, due to the pain meds I am taking, I have had some difficulty concentrating and even just staying awake.

    Rook...

    I am afraid that I did fail that clinical trial.  BTW, it was for an anti-PDL1 drug made by EDS Serono.  Apparently not many participants are doing that well on this particular drug either.

    Regardless, I immediately moved on to Cabo.  But just as quickly failed it as well.

    So a little over 2 weeks ago I started on Afinitor.  A CT-scan yesterday showed (thanks to the grace of God and the prayers and wishes of good will I have been so fortunate to receive) that there has been no progression.  This, for me, is a first.  I have failed, in order: Sutent, Inlyta, anti-PDL1, and Cabo.

    Dr. Hammers was particularly shocked that I did not respond to Cabo at all.  He said I was his first failure.

    Regardless, I have a reprive which, to be honest, I actually did not think was in the cards for me.

    Thank you so very much,

     

    -Neil (NanoSecond)

    nano

    So happy to see this drug is working for you.  I will pray for you daily.  God Bless you.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #10
    Angec, what a wonderful

    Angec, what a wonderful friend to offer this update. Thanks~

     

    And Neil, I didn't know. So now I will no longer wonder.

    Know this, although we don't know one another, I will be

    joining the others by sending healing thoughts and prayers

    your way. I cannot imagine all you have been through.

     

    Whatever you are feeling is okay.

    You are never forgotten, but remembered and appreciated

    for your knowledge and help.

     

    Gentle hugs,

    Jan

  • Djinnie
    Djinnie Member Posts: 945 Member
    #11
    NanoSecond said:

    History

    Ange,

    Thank you so much for posting on my behalf.  As you know, due to the pain meds I am taking, I have had some difficulty concentrating and even just staying awake.

    Rook...

    I am afraid that I did fail that clinical trial.  BTW, it was for an anti-PDL1 drug made by EDS Serono.  Apparently not many participants are doing that well on this particular drug either.

    Regardless, I immediately moved on to Cabo.  But just as quickly failed it as well.

    So a little over 2 weeks ago I started on Afinitor.  A CT-scan yesterday showed (thanks to the grace of God and the prayers and wishes of good will I have been so fortunate to receive) that there has been no progression.  This, for me, is a first.  I have failed, in order: Sutent, Inlyta, anti-PDL1, and Cabo.

    Dr. Hammers was particularly shocked that I did not respond to Cabo at all.  He said I was his first failure.

    Regardless, I have a reprive which, to be honest, I actually did not think was in the cards for me.

    Thank you so very much,

     

    -Neil (NanoSecond)

    Neil, sorry to hear you have

    Neil, sorry to hear you have been going through such a tough time. Thank god that Afinitor has come through for you, may that long continue! I am due to transfer to Afinitor, my Oncologist has a lot of faith in it. I will keep you in my thoughts and prayers Neil, I hope you start to feel more at ease soon:)

    Djinnie x

  • angec
    angec Member Posts: 924 Member
    #12
    Jan, thank you so much, for

    Jan, thank you so much, for your kind words.  I pray for everyone on these boards, patients and caregivers.  I am so thankfful for everyone here.  Everyone is a family! 

     

    XX

  • NanoSecond
    NanoSecond Member Posts: 653
    #13
    I am alive said:

    Three cheers for Afinitor!

    I recently ended 22 months on a trial with Afinitor & Avastin. Enjoyed stability the whole time - still stable, as far as I know. Left because of SEs. Like you, I have chromophobe. My onc told me Afinitor is one of the few drugs that chromophobe traditionally responds to so I am hoping you enjoy a nice long run on it. Wishing you all the best. Your posts on these forums are golden. Pax.

    Pain meds

    What more can I say?

    Thank you all for your continued support and prayers.

    I do hope to be participating more - but my pain medications have been limiting how much and for how long I can stay focused.  It is, of course, very frustrating for someone like me.

    Many thanks to everyone,

     

    -Neil

  • DMike
    DMike Member Posts: 259
    #14
    Keep Fighting

    Hi Neil,

    I've been wondering and worrying about you. It's good to hear from you. Sorry about the Cabo but very happy about the Afinitor. I wish you the best!

    David

  • Darron
    Darron Member Posts: 310 Member
    #15
    Hate the news

    I hate to hear that you have been struggling. Please know my thoughts and prayers are with you. 

     

  • NanoSecond
    NanoSecond Member Posts: 653
    #16
    Darron said:

    Hate the news

    I hate to hear that you have been struggling. Please know my thoughts and prayers are with you. 

     

    Thank you

    Thank you Darron and Mike, very much appreciated.

    I am doing and feeling much better these days.

  • NanoSecond
    NanoSecond Member Posts: 653
    #17
    DMike said:

    Keep Fighting

    Hi Neil,

    I've been wondering and worrying about you. It's good to hear from you. Sorry about the Cabo but very happy about the Afinitor. I wish you the best!

    David

    Ooops

    Oops.  I meant thanks to David - not Mike.

    I guess my brain is still foggy...  :)

  • cran1
    cran1 Member Posts: 139
    #18
    You are in my thoughts Nano.

    You are in my thoughts Nano.

  • pamstayner
    pamstayner Member Posts: 111 Member
    #19
    My concentraited thoughts are for you Neil

    Neil, I think of you every day.  I have secured such comfort and security from all the information you have posted...

    What I wonder, and it bothers me so greatly, is the wording:   "I failed the trial, or failed sutent, or Cabo, or infinitor.." or whatever. I have read that line so many times from other posts, and just have to say something about it here...

    Personally, saying the words I failed makes it seem too defeatest... seems to me we do not fail the trial, or drug... the drug or trial failed us...

    We work too hard on all this stuff and endure so much with side effects and QOL, that fail is not something WE do... I believe mind set is a huge percentage of our resolve in this fight... failure is just not something we do... we respond, we work, we DO THIS, and if mets progress, then it is the drug failure... not us.

    Sorry for the rant... but I just have to get it out.

    Pam...Battle On!

     

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #20
    NanoSecond said:

    Thank you

    Thank you Darron and Mike, very much appreciated.

    I am doing and feeling much better these days.

    Congrats Neil!  So glad that

    Congrats Neil!  So glad that you continue to feel better every day.  It is really great that you have continued to think of all of us and have shared your journey.  I hope you continue to feel better each and every day.

    pam:  I really like what you wrote about drugs failing us!  Good Point!

    Annie

  • NanoSecond
    NanoSecond Member Posts: 653
    #21
    pamstayner said:

    My concentraited thoughts are for you Neil

    Neil, I think of you every day.  I have secured such comfort and security from all the information you have posted...

    What I wonder, and it bothers me so greatly, is the wording:   "I failed the trial, or failed sutent, or Cabo, or infinitor.." or whatever. I have read that line so many times from other posts, and just have to say something about it here...

    Personally, saying the words I failed makes it seem too defeatest... seems to me we do not fail the trial, or drug... the drug or trial failed us...

    We work too hard on all this stuff and endure so much with side effects and QOL, that fail is not something WE do... I believe mind set is a huge percentage of our resolve in this fight... failure is just not something we do... we respond, we work, we DO THIS, and if mets progress, then it is the drug failure... not us.

    Sorry for the rant... but I just have to get it out.

    Pam...Battle On!

     

    I agree

    Thank you all.

    Pam, I fully agree with you.  I my brain was not a bit foggy I would have caught that.  These drugs have failed me - not vice aversa.  Thanks for a very pertinent rant.

    Right now I am dealing with a buildup of fluid in my lungs and my abdomen. 

    It's always sumptin'...

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