Visit to NIH.

By Judith M. Capen

Dr. NIH (National Institute of Health)  is quite lovely. And her PA, J —, was fantastic:  they spent time (maybe 2 hrs of face time) with us answering a lot of questions that have been plaguing me. These are government scientist and they were not rushing off to their next patient, or lunch. They even took time to show us the scans.

Dr. NIH dismissed all the SCCOHT literature as “anecdote.” (She’s a scientist. She wants to see real data, studies, proof, analysis to how ever many dot dot dot points of certainty. When I asked her so what do we do to select chemo agents out of all the zillions out there? She said:  “ask around.”…)

She said it’s a rare form of rare form of a rare form of cancer…

She said two of the country’s best pathologists have confirmed the diagnosis and she was 100% confident there is no need for any further questions there.

Dr. GWU (George Washington University) was hoping NIH would have a drug/agent that he doesn’t have access to…doesn’t appear so. Dr. NIH said there was no magic bullet.

She said with such a fast growing cancer (which Kirb’s is) doing a four week washout to begin a trial seems hazardous.

And, it seems like most of the trials out there are combining Avastin and other “moleculars” and K has to have been on treatment for her pulmonary embolisms for six months before they, NIH, would let her into an Avastin study that eliminates her as a candidate.  But it would be possible to Dr. GWU to try one, and there is one study that does not require the wash out. Check back end of February.

We talked about the agent Dr. GWU started her on Friday (irinotecan). Dr. NIH says should give anything at least two cycles/rounds to see if it is working. Seems that once you hit a tumor with an agent there is no going back: you can never use it again. So you want to give it a chance to see if it works before abandoning it.

She, too, said surgery and radiation are not indicated (as did Dr. WHC (Washington Hospital Center), Dr. MSK (Memorial Sloan Kettering) and Dr. GWU ). This cancer is systemic. One of the OCD things I do is read and reread the Yahoo posts of other SCCOHT patients. So many of them had multiple surgeries and radiation, sometimes radiation WITH chemo agents…I remain puzzled as to why it was indicated for them…Of course, some of this may be because Kirby’s tumors are SO widespread and fast growing. I get that. Maybe not all SCCOHT is created equal? Maybe there’s a subset that is resistant to C + E and insanely fast-growing?

Bottom line:  manage quality of life with treatment program.


6 Comments (+add yours?)

  1. Becca
    Dec 25, 2011 @ 20:16:35

    I wish I could make all of this go away. A big hug from 1 of your 14,000+ fans!
    (Looking forward to our Tea Party- of the non political type).


  2. Olya
    Dec 26, 2011 @ 02:26:08

    I think about you every day, and pray for you every day. And like Becca, how I wish I had the power to make this thing go away.
    Love and hugs and all my best wishes…


  3. Letty Shapiro
    Dec 26, 2011 @ 15:42:37

    We think of you all daily and want so much to be helpful. Seems the best we can do is send hugs and kisses through the ethernet, keep our colds to ourselves, and make cranes. We’re here is you need use and even if you don’t.

    Letty, Jim, and Hannah


  4. Alison Carlson
    Dec 27, 2011 @ 17:02:11

    Hi Kirby,
    I’m Rochelle Juran’s Step-daughter. I met you in the late 80’s. You were a little girl and I was a teenager with big hair and a bad attitute. Stay Strong!
    Alison Carlson


  5. Rebecca
    Dec 28, 2011 @ 16:23:58

    You are in my thoughts every day. The medicine we send is tons of good wishes, prayers, cranes and laughter. All our best,
    Rebecca and Tom


  6. Katie Shinberg
    Dec 29, 2011 @ 15:56:07

    Great to see you on Christmas, Kirby! I really loved The Help- I hope you enjoy the book as much as the movie! I’m also showing off my new necklace and bragging about its creator 🙂


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