Wednesday, December 18, 2019

Not the results I'd hoped for.

After days (that seemed like weeks) of waiting, the results of my bone marrow biopsy and the final genetic testing results (next gen sequencing) of my leukemia both came in on Tuesday afternoon.

The first hope, that the bone marrow would be hypoplastic ("empty") and that the blasts would be under 5%, was not met. I have between 15-20% blasts still in my marrow. I had started with 40%.

This was not completely unexpected, as some of the genetic information came out over the last few days. If what was suspected was true, the 7+3 chemo was not a good match for my particular leukemia. While this is frustrating, I was in a bad enough condition upon admission that *something* had to be done, and so it wasn't a terrible idea to start with the 7+3. (Apparently some cancer hospitals do hold off on any treatment until they get the results from the genetic testing.)

Leukemia is not staged like other cancers. Instead, one of the ways it's grouped is by the favorability of the outcome. Best is "favorable;" worst is "unfavorable" or "adverse;" and in between is intermediate. These are the best guesses as to whether the leukemia will respond to chemo and go into remission. And remission must be obtained before a bone marrow transplant is attempted. (If you leave leukemic bone marrow and put new bone marrow in, they'll compete and the leukemic bone marrow will eventually win.)

My leukemia, unfortunately, has a lot of unfavorable things going for it.
1. Being treatment-associated AML (t-AML) automatically makes it less favorable
2. Having greater than three chromosomal mutations is unfavorable; my leukemia has fourteen(!)
3. One particular gene deletion is highly unfavorable--p53 (involved in signaling for such important things as cell cycle arrest, apoptosis/cell death, and DNA repair). And I have only one copy of p53.

But we have a plan to move forward, and it takes into account the p53 aspect.

There are two chemotherapies that are recently out of Stage 2 Clinical Trial (I think... maybe only one, or the combo?), as tested on elderly patients. If you're into that kind of thing, I think this is the paper my doctor referred to. Although I did not achieve complete remission with the first chemo regimen, this is not a second attempt (ie: failure of first attempt) but a re-induction--or a second first attempt.

I will receive a 7 day infusion of Vidaza (azacitidine), separated by 21 "rest" days and will get that 2-3 times. I will also take a daily oral chemo called Venclexta (venetoclax). The hope is that this regimen will put me into remission. The best part in my mind right now is that they are both done as outpatient treatments.

(For those who are fascinated with the genetic components, Vidaza is a hypermethylating agent--which would turn on the defective p53 and Venetoclax blocks the BCL2 protein, which would allow apoptosis.)

Before I can go home, and before I am considered recovered enough from the first round of chemo, I need to get my neutrophils up to 0.5.  They're currently too low to measure, although my total white blood cell count is slowly increasing, and neutrophils are a subset of white blood cells, so I'm hoping that they, too, will soon start to inch up.

Time to switch that positive energy into making my neutrophils rebound so I can get home and so I can start on the new chemo.

It's a plan and I always do much better with a plan.

And I need to get home to this:

12 comments:

  1. Lori,
    This is definitely frustrating. Will continue to send you all of the positive vibes. Thank you for keeping us posted.

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  2. praying for you to get home for christmas. sorry the results weren't good

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  3. I'm sorry the results weren't what we'd all hoped for. Sending you love and white light. <3
    --Michelle

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  4. Lori,

    I am sorry to hear about the news that is not what you hoped for. At the same time I am glad that you will be able to take your treatment outpatient.

    I am sending you warm thoughts and positive energy for healing.

    Melissa

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    Replies
    1. Well, tried to fix a typo and then rewrote it correctly and posted. Deleted the old one and voila my boo-boo is here for all to see. Woohoo!

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  6. You definitely need to get home to those loving people. Just being with them will help you move forward positively. I love your attitude, your strength and beauty. Prayers and positive thoughts. Love and happiness to you from me. You are a very special lady and I look forward to your blog updates and news.

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  7. So sorry the results were not what you hoped for .You turn those neutrophils around and get home to that beautiful family.Positive vibes and love being sent your way.Keep the faith and know so many are fighting this battle with you.Prayers my dear friend .Stay strong and lean on those loved ones ...they will help you through

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  8. Aw Lori! Such a frustrating journey!! I’m sorry the results weren’t what you hoped for but I’m ever hopeful this second attempt will be exactly what you need. Glad to hear you can take the next fight from home. That will help!! Take care and know I’m thinking of you

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  9. Lori, not the news we wanted to hear. You have an amazing internal strength that will defy the odds, we've seen you be you! I will remain prayerful for you and thank you for sharing your journey. You're surrounded by love.

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  10. I'm so sorry Lori. Enjoy this holiday season with your lovely family. It's been so many years, but I still think about you- you were so warm, kind, and thoughtful. God bless you!

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  11. Thank you for the continuing lessons in science- you are and ever will be a teacher :)
    Here’s a thought:
    A series of discrete yet infinitely packed points even within a finite interval makes for a continuous curve...
    May your holidays and moments with Greg, Ash, Travis and Cara be as dense as the reals :)
    Love & Hugs Friend.

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