Quote:
Originally Posted by Hopeful
Hi wyle.e.kyote,
Wow - You have had a wild ride!
Make sure that you are being seen at a facility that has experience with the treatment of AA/MDS and the administration of ATG.
Why do your doctors think that you have Unclassified MDS? Why were you given prednisone and rituximab? Did your doctor run you through a battery of tests to rule out other possible causes of your bone marrow failure?
It is common to do a skin test before administering ATG to determine whether you are likely to have an adverse reaction to it. Confirm that the hospital does this!
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I am (now) at Medical City in Dallas under the care of Dr Bhusham. My understanding is that he has done several hundred stemcell transplants and "many hundreds of ATG" He does seem very personable and very willing to consider questions and provide answers. His staff seems very conscientious and there is much less of a "revolving door" feel here than there has been with my last two hematologists. This is a stem-cell facility attached to the hospital. They have an entire floor dedicated to marrow issues. Between the time I posted the original message and now I've talked to people undergoing ATG on the floor as of right now.
They tested me for all sorts of things .. Including a stent with an infectious disease doctor. I've had multiple CTs, and MRI, more bloodwork than I care to imagine. My spleen is normal sized and liver and renal functions are normal. I will have my third marrow biopsy a week from Thursday (I've had 2 different pathology clinics handle the samples, this will be the third (second time with this doctor) and done just prior to the ATG.
Quote:
Originally Posted by Marlene
what are you doing to get your B12 and folate up? And did they check your copper, zinc, Vitamin D and B6 levels also. These all play a critical role in blood production. Your B12 needs to be over 500.
Your B12 is low and needs to be corrected.
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Since my B12 was low they gave me B12 shots while in the hospital back in November. It has been at "therapeutic levels" since about December 12th. I currently take 5000mcg 3 times a day. It was 1130 as of 2 weeks ago. Folic normalized as well about the same time
Copper, Zinc, Lead, Mercury, Arsenic, and other heavy metals have been tested for and ruled out.
Radiation exposure was also considered a possibility as I was in Japan doing rescue work just after the typhoon. It was ruled out.
Initially Vitamin D was a little low, but they didn't have me do anything special for it, other than just "eat better" its been normal on all the subsequent tests.
Quote:
Originally Posted by marmab
Hi,
I am writing to say "ditto" to everything that Hopeful stated. If you do, in fact, have ATG/CsA treatment, you will probably have a better (not sure that "better" is the right word!) experience at a facility that is experienced in administering ATG, one staffed with expert docs and nurses.
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Thanks Marmab, I truly hope I sale through it like you did. I am fearful of it as even as of Friday I had another transfusion reaction.. Nothing like a body full of hives -- even after the IV of diphenhydramine its taken most of the day for them to clear.
Quote:
Originally Posted by Neil Cuadra
I can clarify one fact: what MDS-U means.
Even though it's called "Unclassified MDS" it does represent a specific condition: - You have one or more cytopenias, meaning that your red count, white count, or platelet count is low (not necessarily all 3).
- You have abnormal changes in the structure or form of your white blood cell precursors.
- You have abnormal changes in the structure or form of your platelet precursors.
- You do not have abnormal changes in the structure or form of your red blood cell precursors.
- Your blast counts are normal in blood and bone marrow.
- You aren't in the RCMD (Refractory Cytopenia with Multilineage Dysplasia) category. The difference depends on how many cytopenias you have, your monocyte count, and which and how many of your cell precursors are dysplastic.
1% to 2% of MDS patients fall into the MDS-U classification category. |
I have full Pancytopenia as all three lines are low. monocyte count has always been between .15 and .3 (at least since i've been getting twice weekly CBCs and tracking it)
Quoting from the Marrow Biopsy
BLOOD:
MARKED NORMOCHROMIC / NORMOCYTIC ANEMIA
MARKED THROMBOCYTOPENIA
BONE MARROW:
30% CELLULAR MARROW (HYPOCELLULAR FOR AGE) WITH TRIUNEAGE MATURATION.
NO INCREASE IN BLASTS.
NO DIAGNOSTIC EVIDENCE OF AN INFILTRATIVE DISEASE.
MILD DYSERYTHROPOIESIS PRESENT.
DECREASED NUMBERS OF N1EGAKARYOCYTES.
MARKEDLY INCREASED IRON STORES.
Flow Cytometry - Leukemia/Lymphoma Profile:
No definitive immunophenotypic evidence of high-grade hematopoietic neoplasia, Iymphoproliferative disease or
plasma cell dyscrasia.
Abnormal cells: None detected
Peripheral smear:
WBC: The neutrophils display normal nuclear segmentation as well as cytoplasmic granulation. There is
no evidence of a neutrophilic left-shift. Lymphocytes are heteromorphous and monocytes are
morphologically mature.
RBC: There is marked normochromic, normocytic anemia with mild anisopoikilocytosis.
Polychromatophilic cells are present, as well as red blood cells with basophilic stippling.
Platelets: The estimate agrees with the reported count which shows marked thrombocytopenia. Platelet
morphology is unremarkable.
Thank you all for the kind replies .. This is truly an unexpected and life altering event for me and I'm still in the over-load-myself-with-research phase of things. Hearing (and now talking) to people with successful ATG (or at least with less than debilitating side effects) has been quite helpful.