HDIL2 after Sutent

kellybeucler
kellybeucler Member Posts: 1

Hi All, my oncologist recently sent me to University of Miami for a consultation for HD Interlukin 2.  The Medical Oncologist there said he would not put me on HDIL2 because I have previously been on Sutent and a recent study showed a greater chance of cardiac complications.  I have been off Sutent for over a year, I dont get it?  He just flat out refused to do the treatment.  I am an otherwise healthy 46 year old woman has any one else heard of this issue with HDIL2 and Sutent or have any of you had HDIL2 after taking Sutent?

Comments

  • Darron
    Darron Member Posts: 310 Member
    Didn't hear that

    I am on Sutent-Nivolumab trial and when I started the trial, I was given the choice of the IL-2 or the trial. My doctor was quite clear that there may not be a trial spot if I went Il-2 first. In his words "if the trial doesn't work, we always have IL-2 as a plan B. I go for an appt. next Thursday, I will inquire.

  • Gordon Charles
    Gordon Charles Member Posts: 91
    my 1.5 cents....

    My oncologist described the HD IL2 therapy as a treatment that needed to be done before any other treatment.  I got the impression that the drug liked a clean playing field to work with, not altered by other drugs. I suppose that with its low success rate they don't want IL2 facing a modified disease.  I remember him saying that the sequence of other drugs was the next step after IL2.

  • faithlou
    faithlou Member Posts: 41

    my 1.5 cents....

    My oncologist described the HD IL2 therapy as a treatment that needed to be done before any other treatment.  I got the impression that the drug liked a clean playing field to work with, not altered by other drugs. I suppose that with its low success rate they don't want IL2 facing a modified disease.  I remember him saying that the sequence of other drugs was the next step after IL2.

    Same story here.

    I received the same story from my oncologist as Gordon.  I was thinking (my 1 cent) that it was because all the treatments take a toll on your body and want a person to be in the best shape as possible to take the IL-2.  ????  Tough stuff.  Good luck.

  • NanaLou
    NanaLou Member Posts: 71
    faithlou said:

    Same story here.

    I received the same story from my oncologist as Gordon.  I was thinking (my 1 cent) that it was because all the treatments take a toll on your body and want a person to be in the best shape as possible to take the IL-2.  ????  Tough stuff.  Good luck.

    I did it.

    I was on Sutent from Late Jan 2012 to Sept. 1st 2012.  I started IL2 September 20,2012. Both are hard on your heart. My Doctor didn't want to start with IL2, in case it didn't work on me. I had 95% Sarcomotiod. After two round of Sutent it was down 50%. After two more round there was no change. That is when we did the IL2. Dec 2012 there was slight shrinkage, so I went again in Jan 2013 and that took it down to 8mm in two spots. So I did my thrid round of IL2 in April/May 2013. Scans in July show no change still two spots 8mm. Doctor is calling it a full response. We follow up with more scans in October. If you truly want it I would look for a Doctor willing to try. They did all these test on me to make sure I was healthy either to go through IL2. Best  wishes to you.

     

    NanaLou  

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

    I did it.

    I was on Sutent from Late Jan 2012 to Sept. 1st 2012.  I started IL2 September 20,2012. Both are hard on your heart. My Doctor didn't want to start with IL2, in case it didn't work on me. I had 95% Sarcomotiod. After two round of Sutent it was down 50%. After two more round there was no change. That is when we did the IL2. Dec 2012 there was slight shrinkage, so I went again in Jan 2013 and that took it down to 8mm in two spots. So I did my thrid round of IL2 in April/May 2013. Scans in July show no change still two spots 8mm. Doctor is calling it a full response. We follow up with more scans in October. If you truly want it I would look for a Doctor willing to try. They did all these test on me to make sure I was healthy either to go through IL2. Best  wishes to you.

     

    NanaLou  

    You sure did do it!

    Nancy, you're a landmark success.  I don't know of another patient who has demonstrated the value of the newer meds FOR SARCOMATOID in the way you have.

    I believe that Janice Dutcher, one of the top two experts on rare cancers, still reckons that the old cytotoxics are the best chance for sRCC treatment because of the high mitotic rate.  I've had high expectations, however, for some of the latest agents as being promising for highly aggressive cancer pathologies, so it's a great thrill to see you bearing that out!

     

  • Limelife50
    Limelife50 Member Posts: 476
    Hi Kelly

    Hey Kelly so glad to see you hook up with CSN,you are one of my facebook friends and also one of my kidney cancer warrior associates.Just to let you know i Love You and think about you every day,we got some really cool people here with a lot of knowledge so please keep posting here.