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Back from SF — Good trip

August 23, 2010

[picapp align=”right” wrap=”true” link=”term=san+francisco&iid=304604″ src=”http://view2.picapp.com/pictures.photo/image/304604/usa-california-sunset-bay/usa-california-sunset-bay.jpg?size=500&imageId=304604″ width=”234″ height=”352″ /]As a whole, the trip to San Francisco was encouraging. It turns out that there are four experts in the US on breast cancer that has spread to the brain — one in San Francisco, one somewhere in the middle of the country, and two in North Carolina. So, the nudge from God to get down there was a good one.

Dr. Melisko hadn’t heard of the combo of drugs (Cytoxan/Xeldoa) that I’m taking and will be getting hold of the researchers at UW about that. She likes the Xeloda, but she recommends taking something called Temodar along with it rather than the Cytoxan. Temodar is a drug that they’re using for primary brain tumors (primary brain tumors are brain cancer; I have breast cancer that has spread to the brain — different monster). She’s seen lots of success with it, it comes in pill form, and it appears to be very successful when combined with Xeloda. She also recommends going on some sort of maintenance dose of Avastin — you know how much I love Avastin and the peeling purple face, raving anger, and high blood pressure. We shall see about that.

There are two or three new studies being done here and all over the country. She would like me to enroll in a study that’s showing a lot of promise; however, it’s “very toxic,” has to be administered twice a week, and would require me to move to San Francisco. I asked her how long I would have to do that (just out of curiosity) and she said “until it stops working.” I said, “That won’t work for me.”

Other than that, she agreed with me that triple negative breast cancer is in the research ghetto. She saw a patient right before me that has a similar diagnosis, but is 27 years old. Maybe seeing two of us in a row willl jog some sort of research toggle switch and get some more dollars and brains aimed in our direction.

She was also encouraging about the gamma knife — do it until you absolutely have to do whole brain radiation.She was also encouraging about whole brain radiation. She said that much of the research done on loss of cognitive ability following whole brain radiation was done on men 65 years and older who had lung cancer that spread to the brain, other problems like previous strokes, emphysema, heart conditions, kidney disease, diabetes, etc. She has seen only one woman in her clinic have a loss of cognitive ability and that was someone with additional underlying disease. So, if we have to go the whole-brain route, it’s getting less scary.

She then gave me her email address and ecouraged me to email her with questions. She also said to give it to my oncologist here. She’ll be sending him a full report within two weeks (their transcription service is slow).

It was well worth the trip.

As a whole, it was very encouraging. It turns out that there are four experts in the US on breast cancer that has spread to the brain — one in San Francisco, one somewhere in the middle of the country, and two in North Carolina. So, the nudge from God to get my butt down here was a good one. (Wow…maybe I need to write song, “I Left my Butt in San Francisco.” No, not with the amount of food I’ve been eating this week…. I think I gained at least one new butt and I’ll be bringing that home.)

Dr. Melisko hadn’t heard of the combo of drugs (Cytoxan/Xeldoa) that I’m taking and will be getting hold of the researchers at UW about that. She likes the Xeloda, but she recommends taking something called Temodar along with it rather than the Cytoxan. Temodar is a drug that they’re using for primary brain tumors. She’s seen lots of success with it, it comes in pill form, and it appears to be very successful when combined with Xeloda. She also recommends going on some sort of maintenance dose of Avastin — you know how much I love Avastin and the peeling purple face, raving pissed-off-ness, and high blood pressure. We shall see about that.

There are two or three new studies being done here and all over the country. She would like me to enroll in a study that’s showing a lot of promise; however, it’s “very toxic,” has to be administered twice a week, and would require me to move to San Francisco. I asked her how long I would have to do that (just out of curiosity) and she said “until it stops working.” I said, “That won’t work for me.”

Other than that, she agreed with me that triple negative breast cancer is in the research ghetto. She saw a patient right before me that has a similar diagnosis, but is 27 years old. Maybe seeing two of us in a row willl jog some sort of research toggle switch and get some more dollars and brains aimed in our direction.

She was also encouraging about the gamma knife — do it until you absolutely have to do whole brain radiation. However, she was encouraging about whole brain radation. She said that much of the research done on loss of cognitive ability following whole brain radiation was done on men 65 years and older who had other problems like previous strokes, heart conditions, kidney disease, diabetes, etc. She has seen only one woman in her clinic have a loss of cognitive ability and that was someone with additional underlying disease. So, if we have to go the whole-brain route, it’s getting less scary.

She then gave me her email address and ecouraged me to email her with questions. She also said to give it to Dr. Ingber. She’ll be sending him a full report within two weeks (their transcription service is slow).

It was well worth the trip. Well worth it.

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11 Comments leave one →
  1. August 23, 2010 7:27 pm

    Sounds very good, Jill!

  2. Murray permalink
    August 23, 2010 8:02 pm

    Sounds like good news!

    Take care of yourself!

    Maria

  3. Sarahtee permalink
    August 23, 2010 8:31 pm

    Jill, good to know she has some different strategies and more detailed information for you.

  4. mom permalink
    August 23, 2010 8:32 pm

    I will still keep praying hard an d long that this is the answer to your problems. God WILL listen. You are aware that He does. Even my Jehovah Witness friend is praying with his group and any prayer that goes directly to GOD from anywhere is lasting and listened to. God does wondrous things. And praying for Dick too and Hank and Daniel. I love you my dear one.
    Mom

  5. Bemused Boomer permalink
    August 23, 2010 8:46 pm

    It’s great to get to one of the gurus, isn’t it? Nice to get a more complete picture and additional info. I just don’t understand why you aren’t jumping at the chance to move to one of the most expensive cities in the world, leave your family behind, and spend your days with a purple peeling face while in a rage! (yup, some of the so-called “options” the medical community offers us are just so far out of touch with the realities of our lives it’s almost laughable.)

    Blessings to you.

  6. Jennifer permalink
    August 23, 2010 8:55 pm

    What an encouraging post, Jill! I am so glad that this trip proved worth the time and energy. I’m with your mom, we’re praying for you and for the best possible outcome…orchestrated by the One who is above all, knows all and is intimitely involved in your life. Thank you for sharing and for letting us “in”…

  7. Sandy Bartell permalink
    August 24, 2010 7:45 am

    The fact that this doctor is encouraging you to e-mail her with questions after your visit means she is a doctor above other doctors. I don’t know many (if any) doctors who do that with their patients. She obviously really cares. The advice and feedback (other than that crazy option about moving to San Fransisco to get poisoned)seems nothing but positive. It sounds like this was a good trip for you in so many different ways. I am so glad! 🙂

  8. Babs McNeely permalink
    August 24, 2010 8:17 am

    You could start a whole new tread – purple would be the new “tan” 😉
    Hugs girl! With ya 100%. If you ever want to do the NC thing, let me know. I’m a couple of hours away from there.
    Babs

  9. Ellen permalink
    August 24, 2010 12:59 pm

    Very encouraging and wonderful news!!!

    I hope you and Hank had some time to do some sight seeing!

    Funny how I suddenly have a craving for Rice a Roni. 🙂

  10. August 24, 2010 1:18 pm

    Hi Jill 🙂 Just saying hi! Way to go Girl! You are doing such a great job researching best treatment, and sticking up for yourself.
    You are in my prayers all the time!
    xoxo
    Liz

  11. E Lis permalink
    August 24, 2010 3:13 pm

    Jill,

    As you know my Dad has had lymphoma for about two year by now. The odds of it ever leaving his system completely were slim to none. A miracle occurred right as they restarted “maintenance chemo”, i.e. every three months and his kidneys were shutting down. The lymphoma is GONE! His kidneys now function at a normal level. After all of this, I do believe in miracles again and in the power of prayer, modern medicine (derived from our heavely father) and so much more. I share as a means of hope!

    I hope and pray a similar miracle comes for you and yours soon. You are always in my thoughts and prayers.

    God bless, Lisa

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