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Old Sun Jun 19, 2016, 07:12 PM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Waiting and More Waiting (and platelets, PRBCs, antibiotics)

I wrote this post eight days ago and never managed to get it online. An update should be coming shortly.


That’s the essence of our time here at Duke. We are 25 days in from the first day of chemo, and we’re still waiting to see what it did, so we know what we need to do next.

My docs did a bone marrow biopsy on 5/31 - Day 14 - which is the standard course of treatment here. It took couple of days to get the results.

The BMB found that I still have five percent blasts (those pesky leukemia white blood cells), but my marrow is so hypocellular (or aplastic) that it’s not clear whether those blasts are new ones produced by cancerous stem cells (called “clones”) that were not killed by the chemo or if they are leftovers that will eventually be killed by the chemo, which my docs reminded me is still working. This I know to be the case because it is gradually subtracting hairs from my head and face.
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Hypocellular marrow is not uncommon at this stage of induction chemo; mine is at 5-10 percent. A normal person of my age (60 in November) would have cellularity of about 40 percent. What we are waiting for now is for the marrow to rebuild itself after the chemo shock.

Because I had MDS before an explosion of blasts lifted my disease into higher-risk status, my marrow is expected to rebound more slowly. Think about it: MDS is a disease in which some of your bone marrow stem cells are defective and produce blood cells that don’t mature properly, or are broken in other ways. Kicking out the leukemic stem cells (which produce blasts) doesn’t fix these broken MDS stem cells.

So, as my marrow recovers, both MDS and non-MD,S stem cells will be part of that recovery. That means a percentage of my newly recovered cells will be junk. So, it could take a bit longer for my counts to increase.

Tomorrow is the beginning of the period when a response is expected; it’s probably more realistic to expect a response from my marrow a bit later in the month.

That’s the big picture. On the small picture side, I’m having trouble with pain in my knees, hips, and lower back; the occasional fierce headache; and fevers most every day. The fevers appear to be a result of the disease itself, rather than an infection. All but one of my blood cultures (of which I have had many) have come back negative. The exception grew a gram-postive Staph epidermis bug, which was wiped out the next day by Vancomycin.

I have a rash covering my entire abdomen that the docs explain is *reaction to medication. Fortunately, it neither burns nor itches.

So we wait. And transfuse. And imbibe lots and lots of antibiotics.
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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