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Treatment Plan Changes

February 21, 2009

And I wish I were writing a post about David Bowie instead of this.

Isa’s treatment plan changed on Thursday.

Dr. Fallon decided to change her from Average to High Risk.

Upon diagnosis the doctors assign the patients to an over-all category, Standard, or High, based on their blood counts when they arrive. Originally, Isa was placed into the Standard-Average category. Now, she is Standard-High. Trust me, Papa & I questioned the doctor about all the risks of continuing with the lower protocol and decided against forcing the issue. She will continue with the more intensive Consolidation.

Remember Consolidation comes after the Induction period. Her Consolidation phase will last 8 weeks (56 days).  Her MRD, or minimal residual disease, which is basically the leukemia cells, determines in which category she is placed.   So instead of being .09 % or less, hers is .15% .  If you think this seems like a tiny number. It is.    ****UPDATE*****   Her MRD was actually .24% according to the flow cytometry done by John Hopkins. The original number calculated was wrong, or counted by a different method.

In fact we thought so too. Ulitmately from what this doctor said, the higher number, even though it is less than 1% increases her risk of relapse by 50%, and relapse decreases her survival rate from 90% to 20%.  The higher MRD, indicates that the Vincristine/Dexamethasone combo did not decimate the leukemia cells as well as the doctors would have liked.

With the new protocol, she will have six drugs over an eight-week period whereas the previous one she would have had only three drugs in a month. With the new protocol, she will have to have IV medications at home. This means that a home-health nurse will come to the house to show us how to inject the medications through her port.  Instead of having the smooth skin over her magic button, she will have a tube that extends from it. This is where the Cytarbine will be injected. I suppose that we have to do it. All of that was unlcear. Papa thought the nurse did it. I thought that the nurse just comes to show us how to do it.

Papa said, “This is chemo.”  Even though he was just a first-grader when his younger brother went through it, he distinctly remembers how it looked. Now it will be his daughter who experiences the side-effects of chemotherapy.

She couldn’t start this Thursday because her Absolute Neutrophil Count, ANC, was too low, 500 instead of the 750 required. So she will start on next Thursday if her numbers are good. (Even though it is void-of-course moon, and I don’t want to start.)

Four Spinal Taps with Intrathecal Methotrexate

Two sets of Two shots of PEG-asparaginase

Mercaptopurine by mouth for two weeks, twice.

Cyclophosphamide over a 60 minute period by infusion, twice

Vincristine four more times.

If she had testicles, she’d also receive radiation. Thank God for small miracles and an extra prayer to all those boys who have leukemia. Radiation and chemo both increase the risk of other cancers developing as well as possibly lowering the ability to have children.

Other Side Effects of these medications may include:

loss of appettite, nausea, vomiting, hair loss, mouth sores, fewer red blood cells which leads to weakness and tiredness, fewer white blood cells which leads to increased risk of infections, fewer platlets which leads to easier bleeding and bruising.

These are just the most likely side-effects, each of these medications has less likely and rare side-effects as well.

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9 Comments leave one →
  1. Jo Ash permalink
    February 25, 2009 8:56 pm

    Thank you Melissa and thank you for putting Isa on the prayer list at JoyFM.

    Your co-worker 🙂

    and Isa’s Gran

  2. Melissa permalink
    February 25, 2009 1:41 pm

    I am keeping Isa and her family in my prayers. God bless all of you!

  3. Deadra aka Demie permalink
    February 24, 2009 7:08 pm

    you guys are always on my mind, every day. wishing i could hug you – – – – -(ps, thinking of changing my name to october, maybe nickname tobie???)

  4. DAWN CROXTON ONGKIKO permalink
    February 24, 2009 11:52 am

    thinking of you, praying for you. thinking of you some more!

  5. Jill Elston Deputy permalink
    February 23, 2009 8:11 pm

    Thinking and Praying for your family and Isa

  6. Merrick Bartlett permalink
    February 23, 2009 12:15 am

    I’m crying with you and praying for God’s Healing Hands to cradle you all.

    I’m praying, I’m praying, I’m praying, I’m praying, I’m praying, I’m praying

    All my love,
    Merrick

  7. Ashley Anderson permalink
    February 22, 2009 6:46 pm

    Sweet little Isa and family,
    I am sorry to hear about the “change of course”, but the new treatment will be for the better. We will send extra prayers your way during all of Isa’s consolidation phase.
    We check your website regularly.
    Ashley

    • February 26, 2009 1:42 pm

      Thanks Ashley

      Each and every family going through this has a different experience, and can lend a hand, but you and your family feel so much closer to me and mine because of the similarities. We are doing it all together. we will make it through and this treatment is most likely going to help her better than the other. So Hobie Ho!

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