Clinical Trial - Anti KIR, Anti PD-1

lilacbrroller
lilacbrroller Member Posts: 412 Member
in Colorectal Cancer #1

Well, I am officially a rhesus monkey!

I got accepted into a clinical trial and my first treatment starts... tomorrow!  I am excited and scared at the same time.  This is the trial: http://clinicaltrials.gov/show/NCT01714739   I found out about the PD-1 trials through Maia, who mostly posts on the Colon Club forum.  Thank you Maia! I read through her posts, and talked to my oncologist, and I think he found this study for me - I had found several on the NIH site but he recommended this drug combo. My onc and his team may have had something to do with getting me into it because I am the only colorectal patient in this facility's group, and one of ten nationwide.  It's a phase 1, so no placebo. 

I'm a stage IV "SOL" patient, alive two years since diagnosis. No surgery ever since I've always had too many mets since diagnosis - primary rectal tumor, multiple liver and lung mets, and now adrenal spread. It's spread even further (not to the brain and CNS, thankfully) but after my last scan I didn't even ask or want to know! I know it's bad but just don't care anymore.  I've had FOLFOX with avastin (had good results with that combo), xeloda (am now resistant to 5FU), erbitux and irinotecan (did not work at all) plus a dendritic cell therapy from Germany which which worked kind of but not really b/c my cancer is too aggressive. I'm pretty much out of options on standard therapy so decided to go the clinical trial route. 

I'll keep everybody posted. I really hope it shrinks my tumors. Wish me luck!

KarinCool

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
    Good luck Karin...I really

    Good luck Karin...I really hope it works too!  Looking forward to positive updates from you.

  • wolfen
    wolfen Member Posts: 1,324 Member
    #3
    jen2012 said:

    Good luck Karin...I really

    Good luck Karin...I really hope it works too!  Looking forward to positive updates from you.

    Karin

    As I read your positive post, I have all my fingers and toes crossed for you. Am so hoping this will be the "one".

    Luv,

    Wolfen

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #4
    That is good news

    Karin, you are such a trouper, and a first class example of how to live with cancer. 

    Of course you know it is my prayer that this treatment is succsessful for you. I admire anyone who goes on trial drugs, paving the way for other in the future. 

    Stick with us, and we'll be by your side. 

    Cyber hugs!

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #5
    Thats great news Karen. Maia

    Thats great news Karen. Maia is amazing. Unfortunately she was banned from here. That is why she doesnt post on here. She is a tue angel for us battling colon cancer. She has helped me so much with information and support.

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #6
    janderson1964 said:

    Thats great news Karen. Maia

    Thats great news Karen. Maia is amazing. Unfortunately she was banned from here. That is why she doesnt post on here. She is a tue angel for us battling colon cancer. She has helped me so much with information and support.

    Whaaaat?

    How was Maia banned? Ridiculous. Well, I'll write to her on cC. 

    Karin

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #7
    lilacbrroller said:

    Whaaaat?

    How was Maia banned? Ridiculous. Well, I'll write to her on cC. 

    Karin

    Yea that's what she told me.

    Yea that's what she told me. It had to do with posting about voting fot Dr. Lin for researcher of the year. I thought there were some other reasons as well. It's funny that they ban the most helpful and selfless person that I have met through this journey.

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #8
    Update

    Hi, all. Well, I promised an update and here it is.  The miracle cure that is the anti PD-1 did not work for me, and after six weeks in the study I was let go for lack of progress.  I believe the research doctor told me that the treatment worked for significantly fewer colorectal patients than say those with melanoma! so I didn't feel so bad. The Dr. could tell I wasnt responding based on scans and the fact that I had significant growth, rather than shrinkage or stabilization.  Interestingly, he did not test CEA at all. 

    All in all it was a good experience. The Dr. Was great, and seemed genuinely interested in helping me, and followed up trying to solve my ancillary problems - constipation, lack of appetite.  The support staff were nice and the hospital (Johns Hopkins) was well organized and clean.  Certain clinical trials are not free, so sorting out my responsibilities vs insurance vs JHU had a few bumps was challenging at times.

    now I'm on stivarga, and am not sure how that is going. I think I would win a "most mets contest" - primary tumor, liver, too many to count in lungs, adrenal gland, huge goiter like swollen lymph node in my neck,and lots of other lymph nodes.  I'm still walking and talking though. I drive and can more or less function normally, except that I get really tired and have energy intermittently. 

    I must say that I did not take this diagnosis lying down, and tried both standard and experimental treatments.  Wish it all had worked better, though.

    atb

    Karin

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #9
    only the best

    im,looking at another trial as well

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #10
    Sundanceh said:

    only the best

    im,looking at another trial as well

    Good experience

    I would do it again, a trial. What are you interested in, Craig? Which trial?

  • Easyflip
    Easyflip Member Posts: 588 Member
    #11
    Thank you

    For blazing trails. Your attitude is great and you seem ready to fight the good fight bravely. Keep us posted on your journey and know we're all pulling for you.

    ((((((((Karen )))))))))  cyberhugs : )

    Easyflip

     

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #12
    Easyflip said:

    Thank you

    For blazing trails. Your attitude is great and you seem ready to fight the good fight bravely. Keep us posted on your journey and know we're all pulling for you.

    ((((((((Karen )))))))))  cyberhugs : )

    Easyflip

     

    and thank you

    Thank you for the kind words - that is so sweet.  I figure I'm paying it forward, or backwards, by posting my results on CSN.  The more we share, the more we learn.

    atb

     

    Karin Laughing

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #13
    lilacbrroller said:

    Update

    Hi, all. Well, I promised an update and here it is.  The miracle cure that is the anti PD-1 did not work for me, and after six weeks in the study I was let go for lack of progress.  I believe the research doctor told me that the treatment worked for significantly fewer colorectal patients than say those with melanoma! so I didn't feel so bad. The Dr. could tell I wasnt responding based on scans and the fact that I had significant growth, rather than shrinkage or stabilization.  Interestingly, he did not test CEA at all. 

    All in all it was a good experience. The Dr. Was great, and seemed genuinely interested in helping me, and followed up trying to solve my ancillary problems - constipation, lack of appetite.  The support staff were nice and the hospital (Johns Hopkins) was well organized and clean.  Certain clinical trials are not free, so sorting out my responsibilities vs insurance vs JHU had a few bumps was challenging at times.

    now I'm on stivarga, and am not sure how that is going. I think I would win a "most mets contest" - primary tumor, liver, too many to count in lungs, adrenal gland, huge goiter like swollen lymph node in my neck,and lots of other lymph nodes.  I'm still walking and talking though. I drive and can more or less function normally, except that I get really tired and have energy intermittently. 

    I must say that I did not take this diagnosis lying down, and tried both standard and experimental treatments.  Wish it all had worked better, though.

    atb

    Karin

    Sometimes

    Words come out of your mouth that you cannot write here, I had a few cuss words come out of my mouth when I saw your update about your cancer.

    Did anyone see the Australia report about the JAK inhibitors that they found the tumors are "exquisitely sensitive" to.  This is specifically about colon or as they call it bowel cancer. They found them to stop tumor growth and prevents new tumor growth and that these JAK inhibitors are already approved drugs.  I do not know how to get the report on here but it came from abc.net.au at the Walter and Eliza Hall Institute of Research in Melborne, AU, if someone can figure out how to put the URL for it on here.

    Keep trucking Karin I've got fingers and toes crossed like Wolfen for you!!

    Winter Marie

  • coloCan
    coloCan Member Posts: 1,944 Member
    #14
    herdizziness said:

    Sometimes

    Words come out of your mouth that you cannot write here, I had a few cuss words come out of my mouth when I saw your update about your cancer.

    Did anyone see the Australia report about the JAK inhibitors that they found the tumors are "exquisitely sensitive" to.  This is specifically about colon or as they call it bowel cancer. They found them to stop tumor growth and prevents new tumor growth and that these JAK inhibitors are already approved drugs.  I do not know how to get the report on here but it came from abc.net.au at the Walter and Eliza Hall Institute of Research in Melborne, AU, if someone can figure out how to put the URL for it on here.

    Keep trucking Karin I've got fingers and toes crossed like Wolfen for you!!

    Winter Marie

    Is this what you are referring to?

    http://medicalxpress.com/print331366002.html

     

     

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #15
    coloCan said:

    Is this what you are referring to?

    http://medicalxpress.com/print331366002.html

     

     

    Yep

    Thanks!!

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member
    #16
    herdizziness said:

    Sometimes

    Words come out of your mouth that you cannot write here, I had a few cuss words come out of my mouth when I saw your update about your cancer.

    Did anyone see the Australia report about the JAK inhibitors that they found the tumors are "exquisitely sensitive" to.  This is specifically about colon or as they call it bowel cancer. They found them to stop tumor growth and prevents new tumor growth and that these JAK inhibitors are already approved drugs.  I do not know how to get the report on here but it came from abc.net.au at the Walter and Eliza Hall Institute of Research in Melborne, AU, if someone can figure out how to put the URL for it on here.

    Keep trucking Karin I've got fingers and toes crossed like Wolfen for you!!

    Winter Marie

    Another article on JAK inhibitors

    yeah,,cancer sucks,

    heres something from from the UK daily mail:http://www.dailymail.co.uk/news/article-2777316/Hope-bowel-cancer-patients-scientists-discovering-drugs-stop-growth-80-cent-cases.html

    i looked up the drug and it seems that xeljanz (sic) which is approved for,rheumatoid arthritis is in this class. Maybe there will be clinical trials for it soon? Like celebrex/adapt?

    cheers

    Karin

  • Phil64
    Phil64 Member Posts: 838 Member
    #17
    lilacbrroller said:

    and thank you

    Thank you for the kind words - that is so sweet.  I figure I'm paying it forward, or backwards, by posting my results on CSN.  The more we share, the more we learn.

    atb

     

    Karin Laughing

    Thank you Karin. And I am

    Thank you Karin. And I am praying rought now for you. keep the faith! Love and hugs to you. 

    Phil

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #18
    lilacbrroller said:

    Another article on JAK inhibitors

    yeah,,cancer sucks,

    heres something from from the UK daily mail:http://www.dailymail.co.uk/news/article-2777316/Hope-bowel-cancer-patients-scientists-discovering-drugs-stop-growth-80-cent-cases.html

    i looked up the drug and it seems that xeljanz (sic) which is approved for,rheumatoid arthritis is in this class. Maybe there will be clinical trials for it soon? Like celebrex/adapt?

    cheers

    Karin

    No reason

    They say they did the studies, no reason for waiting years for it to be approved drugs as the drugs are already approved and made.   The approval for the protocol  would be the only thing we have to wait on, whether the US is working on that is unknown to me.

    Winter Marie

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #19
    herdizziness said:

    No reason

    They say they did the studies, no reason for waiting years for it to be approved drugs as the drugs are already approved and made.   The approval for the protocol  would be the only thing we have to wait on, whether the US is working on that is unknown to me.

    Winter Marie

    I read the same article this

    I read the same article this morning. Hopefully there will be more info on the exact drugs they are using soon. I will watch it closely.

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