Wednesday, March 10, 2010

An un-eventful day! YEAH! We had a "normal" day today - a clinic visit to get my IV antibiotics and that's it. My arm is still very swollen. My right arm is about 7 cm larger in circumference than my left arm. However, the pain is drastically better. Dr. Rizzieri came to see us in the clinic today and the drug company (Synta Pharmaceuticals) has decided they want to give me almost the same dose (just a little bit lower) twice a week. The drug is called STA-9090. They have just finished a round of doing this on solid tumors and I will be the very first on this protocol for a liquid tumor. The FDA actually has to approve it for me first. So the plan is to have one more cycle (3 more treatments) of once per week then we will go to twice a week as long as we get FDA approval which should not be a problem.

Other exciting news - Joleen (Michael's aunt) got a letter today that she may be a possible bone marrow match for someone. They told her that she is one of "less than a handful" of possible matches and it is someone that is outside of the US. So I'm ecstatic that she may be a donor. The chances of her actually being a match are still low but it's still exciting. She registered for Be The Match at a bone marrow drive several years ago. One of the doctors (not a transplant doctor just an oncologist) told me that having a bone marrow drive was basically pointless because the chances of adding a new HLA type are so slim. (I couldn't believe he said this!) SO this shows that you never know when you will possibly add someone that would be a match. If everyone had his attitude there wouldn't be a bone marrow registry.

Pray for more days like today! (Not to mention the weather!)


  1. So glad that you're home and back to the "old routine"....Who would've thought that "it" would be so exciting?! And yeah, the weather will continue to improve...until it gets hot and yucky in Carolina....but even that sounds ok this year! Will miss having you guys over this week...Before long the buds will start popping out and you can enjoy some of the fresh spring colors on the drive. Hope to see you all very soon!

  2. Glad you had a good day. Ground-breaking new drug studies, and miracles. :) We will continue to pray and send lots of loving thoughts your way. Hope you can "feel" how much you're loved.

  3. I'm so glad you had such a boring day! and I'm still excited about such a good BMB report. I am so thankful for clinical trials, and especially STA-9090. It may turn out to be a big step to curing leukemia. I hope that is God's will and that you will reap the benefits. Miracles still happen. I love you, Grandma

  4. Thinking of you as you break new ground. Keep your positive thoughts and energy flowing. Thinking of you!

  5. Hi Amy-
    That is great news that you are starting to feel better! It was so good to see you last weekend. I hope to get down again soon. Love you tons! Stay strong!!!

  6. Delighted with the news and your improvement. Your dad's e-mail confirms it. We are praying for more of these days. Have a wonderful weekend!
    Trusting Him,
    David & Candy

  7. Good Good morning Amy and all-

    SO HAPPY to hear how well things are going-Thank God for you all, for Duke, for Synta and their drug, for meds, for a new kind of line and on and on-May he hold you close Amy and keep you all strong-

    Good news about Joleen also-I hope you all have a wonderful weekend and take good care-

    Prayers and positive thoughts beaming from Alabama!

    Lots of love-

  8. dear amy,

    just got off the phone with a representative of the new york yankees and they have agreed with your suggestion ( i gave you all the credit.... your very welcome!!!!!) to add sweepers in next years season between home and first base and between third and steinbrennar thinks it will improve their ratings by at least 72%!!!! especially for world patrons of holiday inns, ramadas, hiltons, sheratons, old barber shops... how cool will it be when the sweeper takes out the catcher with a broom as the base runner steals home to win the world series.....i only wish i had come up with such a game breaker idea......i suppose you should get at least 10% of next seasons gross profits. that should help with your medical bills or buy a truckload of ice cream......
    you might have to name your kids ben and jerry but that would be nice unless they're girls... how about bennette and jerri lynn????? keep up the great rock girlfriend!!!!
    xoxoxoxoxoxo always,

    ps. george has requested that instead of throwing out the first pitch of next years sweep the first base runners path......he even mentioned that they might have celebrity sweepers compete for charitys...what a novel idea....can't you see next years world series sweeper challenge... dick chenney vs martha stewart...or paris hilton vs alice cooper.....or alice off the brady bunch vs gomer pyle....i could go on and on and on....the possibilities are endless....

    have a great week!!!!!!!!!!

  9. Amy, I am not sure if my first post worked, I got some kind of error. Just wanted to let you know you have been in our thoughts and prayers. We hope things continue to improve and the pain goes away. Elizabeth is doing very good, next scans on April 15th. She asks about you all the time and she even wrote you a card this weekend, I just have to get it in the mail! Take care and know we love ya! Much hope, kathy