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Day 36: The Johns Hopkins test results

Monday, October 15, 2007 - As you may remember, last Wednesday Mady's bone marrow and spinal fluid were sent to Johns Hopkins for ultra-accurate MRD (Minimal Residual Disease) analysis. Dr. Friedmann reported today that Mady has less than 0.01% leukemia cells in her bone marrow samples. This technically means that she has No Detectable Leukemia! (Much thanks to you all for the NDL chanting) This is the best news we could have hoped for from JH.

Is she cured? Unfortunately, no.

There are over a trillion (1,000,000,000,000) cells in the bloodstream. Traditional testing methods can detect leukemia cells only if they make up more than 1% of the studied cell population. With these tests a patient could still have almost one billion leukemia cells and have "no detectable leukemia."

The Johns Hopkins tests are much more accurate, but Mady could be at less than 0.01% and still have almost 10 million leukemia cells in her body. She probably doesn't have that many, but her doctors know that she is very unlikely to be completely leukemia-free at this point--and even if she was, there would be no way to know. All it takes is ONE surviving leukemia cell to surface later and start this horrible disease all over again... Thus the required 2 1/2 year chemotherapy protocol, regardless of the results of any currently-available test.

The next step is the Consolidation Phase, in which she will begin another round of chemotherapy as soon as her ANC reaches 750 (Unfortunately her ANC was still at 38 again today, so that could be a while it seems). I don't yet know the details of the Consolidation protocol, but I'm pretty sure it involves more of the dreaded subcutaneous asparaginase, along with other chemo delights.

Bottom line: The best possible news from JH, and on to the next step in this long odyssey. Friends and family, thank you so much for your encouragement, support, and help... they mean a lot to Mady and to us. --T

12 comments:

Anonymous said...

Great news on the MRD test! That's a great way to complete induction.

(And I know how it feels to turn 50 with all of this going on.)

Doug Johnson

Anonymous said...

Yeah!! That is great news -One day at a time. xoo , andrea

Anonymous said...

Wonderful, wonderful news!!!! So happy for you!
Larisa.

Unknown said...

We are so happy and relieved to hear of the test results!!!
Joce and family

char43 said...

Thanks for the clear update on the cell life - wanted and unwanted inside Mady. We're holding the vision for more of the white blood cells to allow for the trip home for a bit.

Hugs in our name,
Connor and Donna and Charlotte

Anonymous said...

We love you all very, very much. You are in our thoughts throughout every day. Love, J,T,F

Anonymous said...

Glad to know MGH and Johns Hopkins are on a similar track, and thanks for the explanation of the circumstance. We will keep up the positives for more neutrafils ( I think I forgot how to spell it!) XXXXOOOOGP&E

Marcia Westcott said...

I am so glad to read the good news!
Happy 50th! That's three of us the same age, you, me and Doug!
Marcia

Anonymous said...

No detectable leukemia.... yeah! That is wonderful news.
Marthaa

Anonymous said...

Hey Guys!

I've been following the daily reports and I just want to say.....Thats Wicked Great Freakin News!!!

I couldn't think of a better 50th birthday present for Trey....
so I wont even bother sending the In-The-Egg-Egg Scrambler that I got for him!!! (I saw it on TV)

CONGRATS TO MADDY and
Happy B-Day to Trey!!!

(im so relieved that Im getting a little verklempt)

all the best from NYC John

Anonymous said...

Yay!!! Less than 0.01%!! Yay!!! No detectable leukemia!!! Yay!!!
~~Stephanie~~

expressivetherapy said...

NDL! NDL! NDL!

that's great news!!!!!!

been saying our prayers every day for you all.
Love, Karen, Paul, Sam and Margaret