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cakelady
cakelady CSN Member Posts: 63
in Kidney Cancer #1

I haven't been around much. We ended not ever making it to MDA because, being self-employed, we were too busy to even consider leaving the area. Which is the strangest thing because we haven't been busy around that time of year for about 15 years. It's just a slow time every year in the business. So we ended up with a different doctor, then didn't get to see her because she went on maternity leave the day before we were to see her, saw another doctor who was randomly chosen. He kept John on Sutent for a full three month round and then we found out it wasn't working... he started talking about other options and touched on hdIL2, and it turns out John was the perfect candidate for it, he was in a narrow window between rounds because you have to be off the other drug, but of course, you don't want to be off too long because that's just not good. So we got approved for the hdIL2 with Dr. Milletello in Baton Rouge, a whole 40 miles away... THE guy to have! So rounds one and two were done, then five weeks, then scans to see if it worked. And if there's ANY improvement at all, any, any, any, you go back in for rounds three and four... well.

 

Y'ALL ARE NOT GOING TO BELIEVE THIS!!! JOHN WENT FOR A CT SCAN TODAY FOR THE INTERIM BETWEEN 1-2 AND 3-4 ROUNDS OF THE hdIL2 TREATMENT, AND...



 



IT WORKED!!!!



 



Dr. M. said his scan looked great; all the spots in his lungs are gone, and the one spot left looks like it is either an enlarged or inflamed lymph node. We called his surgeon to update her since she did such an awesome job looking after him, and she said she saw it on all his scans from 11/15 and had the opportunity to take it out if it was something in December, but she left it because it looked like nothing. We are going out of town for a wedding this weekend and he goes back in for his week in/out/in for rounds three and four of the hdIL2 and then, God willing, we are done. After that, it will be just routine scans to make sure nothing comes back.

 

I pray that everyone here can get some news like this at some point in their journey. We are stunned, shocked, awed, and grateful beyond belief. I guess God got tired of hearing John's name coming up in prayers, and decided to handle this to get it over with. The hdIL2 treatments are vicious; five weeks out, he's still dealing with side effects, and gets to do it all over again next week, but the juice is worth the squeeze.

 

God bless you all. I will keep all of you in my heart, thoughts, and prayers.

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Comments

  • hardo718
    hardo718 CSN Member Posts: 853 Member
    edited September 2016 #2
    That is awesome news!!

    So happy for you guys. 

    God bless,

    Donna~

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  • sblairc
    sblairc CSN Member Posts: 585 Member
    edited September 2016 #3
    How amazing, this is great.

    What a true miracle. You are blessed. 

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  • icemantoo
    icemantoo CSN Member Posts: 3,362
    #4
    Sounds like

    You should let uncle NED stat nibbling on the cake;

     

    Icemantoo

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  • JerzyGrrl
    JerzyGrrl CSN Member Posts: 760 Member
    #5
    That's just super

    That's just super. It's definitely time to start getting the cake ready for Uncle Ned.

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  • Kangaroorex
    Kangaroorex CSN Member Posts: 47 Member
    #6
    Awsome News!

    that is absolutely great news!  Thats a tough decision and a hard road.  its great to hear that there was a reward for the experience.  best wishes for long and continued success!

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  • pamstayner
    pamstayner CSN Member Posts: 111 Member
    edited September 2016 #7
    Go for it

    I am really happy to hear this news.  Here is to continued good stuff.

     

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  • penitent
    penitent CSN Member Posts: 79
    edited September 2016 #8
    Power of prayer

    Never underestimate!

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  • Footstomper
    Footstomper CSN Member Posts: 1,237 Member
    edited September 2016 #9
    IL2

    Done it. Know it. Got good results. Never heard of results as good as yours. Shows the power of science and your own personal bravery and endurance.

    Well done. You deserve it.

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  • Max57
    Max57 CSN Member Posts: 177 Member
    #10
    Great news

    So happy for you

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  • Jojo61
    Jojo61 CSN Member Posts: 1,310 Member
    #11
    Fabulous news!!! So happy for

    Fabulous news!!! So happy for you!!

    Hugs

    Jojo

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  • foroughsh
    foroughsh CSN Member Posts: 779
    #12
    Wonderful news, positive,

    Wonderful news, positive, promising and happy news, thanks for sharing it and wishing you great trip. Enjoy every minute of the wedding ceremony.

    Forough

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  • daisybud
    daisybud CSN Member Posts: 541 Member
    #13
    Great news!

    Great news!

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  • APny
    APny CSN Member Posts: 1,995 Member
    #14
    Fabulous news. So happy for

    Fabulous news. So happy for you!

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  • foxhd
    foxhd CSN Member Posts: 3,181 Member
    edited September 2016 #15
    thats why we do this

    AWSOME!! Against tough odds. Congrats to you guys!!

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  • Jan4you
    Jan4you CSN Member Posts: 1,330 Member
    edited September 2016 #16
    YAAAAY he is on his waaay!!!!

    YAAAAY he is on his waaay!!!!

    Thanks for the update. Best to you and your hubby!

    Hugs, Jan

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  • Teashea
    Teashea CSN Member Posts: 89 Member
    edited September 2016 #17
    Wonderful news

    My understanding is that IL2 only works for about 19% of patients. What wonderful news! I am baffled over the fact that University of Colorado hospital will no longer be giving IL2 as an option for renal or melanoma cancer patients.  I was told that it was not working for melanoma patients. What about the renal cancer patients that might need it?? Has any one else heard this news at your hospital?

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  • Allochka
    Allochka CSN Member Posts: 1,089 Member
    edited September 2016 #18
    Amazing! Continue the same

    Amazing! Continue the same way !!! Hurrah!

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  • Kangaroorex
    Kangaroorex CSN Member Posts: 47 Member
    edited September 2016 #19
    Teashea said:

    Wonderful news

    My understanding is that IL2 only works for about 19% of patients. What wonderful news! I am baffled over the fact that University of Colorado hospital will no longer be giving IL2 as an option for renal or melanoma cancer patients.  I was told that it was not working for melanoma patients. What about the renal cancer patients that might need it?? Has any one else heard this news at your hospital?

    high risk?

    I imagine that the hospital insurers probably had something to say about it, or the hospital didnt want to keep up the dedicated support.  With other less risky treatments (even if the possible gain is higher) I think we will see the number of hospitals offering IL2 shrink but thier wards become more dedicated and better suited to the treatment.

    And again, Great news on the successful treatment at the head of this thread!

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