Tuesday, August 16, 2011

August 16

Dr. Rosenberg called us today. It turns out that he would like to try a treatment other than MAGE. It’s a different type of TIL treatment. They have already grown my new cells for TIL; Dr. Rosenberg said he checked on them and they have grown very well and are showing great activity, so that’s good news.  He wants me to do a treatment where they take the new cells and genetically engineer them with IL-12. IL-12 is a substance that your body naturally produces (like IL-2) that stimulates your natural immune system to amplify specific activity of T cells. He said the IL-12 makes the TIL cells super powerful. Because the TIL cells themselves will be infused with IL-12, I do not have to also have IL-2, which is the most fabulous news. Also, because we are local to NCI, I can do a lot of this treatment outpatient, which means much less time away from baby Kai! First I will get chemo for seven days to kill my current immune system. It is a combination of two drugs.  The first one is given for two days. It is very toxic and I do have to be in the hospital to receive it (and for two days prior to receiving it so I can be properly hydrated). The second one is given for five days, and for that one I can stay at home and go to the Clinical Center every day for an infusion. After the seven days of chemo, they will give me the new cells. I don’t know how long I have to stay in the Clinical Center for that process, but at least a few days. Then I can go home again, but I have to go back to the Clinical Center every day for a number of hours to be monitored (so they can ensure that my white blood cell counts are increasing like they should, since they will be at zero after the chemo). I don’t know for how many days I have to return to the Clinical Center for monitoring, but I am guessing a couple of weeks. Here is the exciting part: I will be the first person in the entire world to ever receive this treatment at the dose they will give me. They have tried it previously at lower doses with good results and have just obtained approval from the FDA to try a higher dose. Dr. Rosenberg said that they are projecting that the dose they want to give me will be the ultimate dose for this treatment. He said in the trials they have done with mice, the IL-12 has made the TIL cells 100 to 1,000 times more powerful than seen with the standard TIL treatment. Because this is not only an experimental treatment (like all of NCI’s cell therapies), but also that I will be the first person to ever receive this dose, they will be monitoring me very closely to observe the results, side effects, and everything else that might happen. I’m very excited. It’s exciting to be the first person to get this dose, it’s exciting not to have to do IL-2, and it’s very exciting to not have to be away from baby Kai for more than a few days at a time rather than 3-4 weeks straight! Dr. Rosenberg was very excited about this treatment. It’s experimental, so there are no promises (not that there are promises with any cancer treatments, but with this one there’s not even any human data for what I’ll be receiving), but he said “I have the utmost confidence that this will solve your problem.” Now that is not a guarantee and should in no way be taken as one, but when Dr. Rosenberg, the pioneer of almost every existing treatment for melanoma, tells me that he is confident in my next treatment based on my specific health information, that’s about as much hope as I could ask for.  And for that, I am thankful.

I will still go to the Clinical Center on Friday for apheresis, because they will freeze those white blood cells just in case I need to do the MAGE treatment in the future (they want to take cells before I get any chemo) and I still need an MRI of my brain. And after the TIL/IL-12 treatment, it is still going to be a long road to recovery because of the magnitude of what I will be going through physically. But I am ready, bring it on. I am going to kick some cancer ass. You messed with the wrong momma, cancer, because you mess with me, you mess with my baby, and for that I will destroy you. So new plan, new treatment, new hope. I’m feeling feisty, watch out.
Today I am thankful for this exciting new opportunity; I am thankful that Dr. Rosenberg called us personally to explain this treatment and why he thinks it is right for me; I am thankful to be young(ish) and strong and ready to fight; I am thankful for the time I will be able to be home with baby Kai instead of in the hospital; I am thankful for our extraordinary MMG family who has already begun making plans for how to support us through this next round of treatment (we love, love, love you); I am thankful for our amazing friends and family; and, as always, I am thankful for my wonderful husband Jeff and our perfect baby Kai. I have no more tears, sweet baby, there’s no doubt I will win now.

10 comments:

  1. Wooohoooo!!! This made my day :) I am so excited for you! Cancer better start running now ;)

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  2. "wrong momma" indeed! Yes, indeed! Cancer didn't know whom it was amessing with. Go, Jamie, my dear, favorite niece. And even though I've never met him, you gotta just love Dr. Rosenberg, shining hero, brilliant researcher, steadfast companion on the journey. I have no doubt you will set the gold standard on his new treatment. Love, joy, celebration to you, Kai & Jeff.

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  3. Yippee! I'm doing my happy dance and hugging you from afar. This is so exciting. Three cheers for NCI and Dr. Rosenberg, and three million or so for you, Jeff and Kai. I love you!

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  4. Great news....my thoughts will be with you through this exciting treatment!

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  5. Awesome news, Jamie! Make that cancer your bitch!

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  6. Jamie, you will come through this as a trailblazer in the Melanoma world. You will make history! First to have the new breakthrough treatment that will help so many more after you as well. You will do this as a champion for the cause. God bless you
    NKH

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  7. Jamie,
    Once again you are just totally awesome in your response. You are a beautiful person through and through. Agree with NKH ... sure to end up in medical literature as a champion. So very proud of you and so happy that Dr. Rosenberg has given you this new hope in an even better treatment option. Sending love and light and a big hug,
    Joy

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  8. Jamie,
    Exciting news! Big hug to all of you.
    Faye

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  9. We are so excited to hear about this new treatment. The first person ever-can't get more cutting edge than that. It sounds like Dr. Rosenberg has a lot of confidence in it. Go to it. Less time away from home and your family is also wonderful.
    Our love and prayers-

    Carol and Bill

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  10. No more tears...that is a good thing!!!! That moment when tears stop ..determination, then the power and the will to keep moving forward. I am thinking of you and sending you all my love for this next round.

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