Well folks, we didn't get what we were hoping for. The MRD results came back very quickly and we now know that she is at 12% MRD. As a reminder we were hoping for < 0.1% MRD. This means that her leukemia did not respond well to the chemotherapy. To be clear, the total amount of leukemic cells dropped dramatically, but they did not drop significantly quicker than her non-leukemic stem cells.
The high MRD in combination with her high risk karyotype causes a change in her treatment plan. The goal now is bone marrow transplant as quickly as possible. To do the bone marrow transplant they need to get rid of all of the existing bone marrow. In babies they do that with chemotherapy. They are actually going to be using the same chemotherapy treatment that Clara just had called induction II.
The plan for those interested is this:
Cytarabine: 100mg/m^2 IV over 30 minutes every 12 hours on days 1-8 (16 doses)
Daunorubicin: 1.67mg/kg IV over 6 hours on days 2, 4, 6 (3 doses)
Etoposide: 100mg/m^2 IV over 4 hours on days 1-5 (5 doses)
In addition to chemotherapy she will get valproic acid:
Day -2: 30 mg/kg once
Day -1: 22.5mg/kg/dose twice
Day 0: 10 mg/kg/dose three times
Days 1-6: 10 mg/kg/dose three times per day
Valproic acid is a new method that they are trying which has been shown to increase the effect of cytarabine by 30x. It words as a histone deacetylase inhibitor which means that it keeps the DNA in a less compact state (this is a very loose explanation). I imagine that the mechanism of action has something to do with keeping important genes on that the cancer would otherwise try to shut down to prevent action of the chemotherapy. The actual mechanism of action is unknown and this is still experimental, but has shown some good results so far. Valproic acid has been used to treat neurological diseases in children so the risks are pretty well known. The main risk is to the liver which will be monitored closely.
The goal is to start this treatment today with stem cell transplant in a week. This is highly dependent on being able to find a donor. Because of our background, the doctors are pretty confident that she will find a match. I will make a post about the stem cell transplant when we have more information.
13 comments:
Brooke and Alan - I've been checking the blog over and over since yesterday, hoping for good news. I'm devastated but will keep praying. I hope you can feel the constant love and prayers we're sending your way!
So amazed at how well you guys are holding up under this incredible burden. I am very, very proud of Clara's remarkable parents. I am hopeful that the decision to go straight to stem cell transplant ends up being God's merciful answer to our prayers because ultimately her treatment is shortened significantly...the ultimate grace being her total healing! Just do it, God! You hear me?! Amen.
Just FYI she is 6.2kg and has a body surface are of 0.32m^2. Surface area seems like such an odd measure for a person (at least a baby).
Best...best...best of luck to you all, we are certainly sending our good vibes from Durham to help her stem cell transplant go well. I'm glad she has access to Etoposide because there is a national shortage of this medication. Valproic acid is realtively well handled, the liver adverse effects are relatively rare. Clara is in good hands with you and the docs at Stanford. Our thoughts are with you as always.
Oh Brooke and Alan! I continue to pray for her speedy and miraculous recovery every day. You guys are astounding in how you have handled this (really, judging entirely by blog posts...which I am glued to...), and I pray that God grant you the peace of mind and heart that y'all deserve!
Love & prayers for Clara from the Garsys family in SC.
Wow. So I'm a little confused. Is the stem cell transplant the same as the bone barrow? Or are these 2 different transplants she will need?
God bless you all!! I LOVE YOU! WE WILL GET THROUGH THIS!!!
Same thing. Hematopoietic stem cell transplant is what a bone marrow transplant is.
Praying, praying, praying. Wish we could do more! Suzy & Dick Cashwell
I'm praying constantly for better news with this second round of chemo. Will Clara be coming to Memphis at St. Judes? Or will the transplant be done at Stanford?
Is it possible to get tested to see if Katherine or I would be a match?
Nick, the only way is to register with the national bone marrow registry. They have kits you can order online (marrow.org) or you can go to a drive. There are multiple upcoming in the Denver, CO area:
http://www.marrow.org/JOIN/Join_in_Person/index.html
I'm going to ask the President myself.
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