I originally found I had MDS in 2005. Could, and probably did, have it prior to then. Picked up on a routine CBC. Went to an oncologist/hemo guy who did a BMB. Looking at it he thought I had mild MDS. Gave me Procrit for maybe 8 months at 40 dose. He wanted to try 60, it wasn't working, had rotten insurance, and decided to get a 2nd opinion. This guy said, No, you don't have MDS. Went to a 3rd guy, he wasn't sure how to put his socks on.
Stopped all treatments for a few years, then my PCP had a CBC done and felt I should check with the cancer center again. BMB came out maybe just a bit better than my first one. Below is my diagnosis as part on my chart in their automated patient info section.
Oncology/Hematology Diagnoses
Diag Date
Type
ICD
Std Date
Description
Tx Setting
Status
Status Date
20111213 Primary 238.75 Myelodysplastic syndrome unspecified
20121002 Secondary 280.9 Anemia, iron deficiency, unspec
20121002 Secondary 585.3 Chronic Kidney disease, Stage III (mod. eGFR 30-59)
I took Vidaza subcu for the last 20 months. I did have the schedule changed from 7 days per month to 5 days. Worked just the same. My numbers HGB are basically in the 10's. That is the same as when I started basically. Below are labs for the past 8 months.
Result
08/19/13
07/15/13
06/17/13
05/20/13
05/08/13
04/22/13
04/10/13
03/25/13
WBC 9.5 7.2 7.6 7.2 6.1 8.2 6.3 7.5
ANC 7.1 5.5 5.5 4.8 4270 6.4 4139 5.6
RBC 3.34 3.31 3.24 3.29 2.96 3.18 3.03 3.39
Hgb 10.9 10.9 10.8 11.1 10.4 10.7 10.7 11.2
HCT 34.7 34.9 33.9 35.2 31.1 34.2 31.3 36.5
RDW 14.3 14.7 16.4 16.1 17.1 16.2 15.8 14.7
Plat 298 285 294 323 192 269 161 332
Lymph# 1.8 1.3 1.6 1.8 1330 1.3 1411 1.4
MONO# 0.6 0.4 0.4 0.6 244 0.5 347 0.5
BASO# 67 25
EOS# 189 378
Gran% 74.3 75.9 72.8 66.9 70.0 77.8 65.7 74.9
Lymph% 18.9 18.4 21.3 25.2 21.8 16.3 22.4 18.7
MONO% 6.8 5.7 5.9 7.9 4.0 5.9 5.5 6.4
BASO% 1.1 0.4
EOS% 3.1 6.0
Sodium 139 138 140 141 137 141
Potassium 3.8 3.6 4.0 4.2 4.6 4.1
Chloride 104 101 103 106 104 104
CO2 24 23 27 23 22 28
Glucose 143 306 166 130 145 125
BUN 14 19 23 20 20 16
Creat 1.3 1.2 1.2 1.4 1.7 1.2
eGFR NON-AFR. AMERICAN 58 64 64 54 43 64
eGFR AFRICAN AMERICAN 71 77 77 65 52 78
Calcium 9.4 9.4 9.2 9.1 8.8 9.4
Total Protein 6.2 6.5 6.2 6.3 6.4 6.6
Albumin 4.4 4.3 4.2 4.2 4.3 4.5
A/G 2.4 2.0 2.1 2.0 2.0 2.1
Globulin 1.8 2.2 2.0 2.1 2.1 2.1
Total Bili 0.42 0.39 0.29 0.30 0.25 0.34
Alk Phos 86 71 73 78 92 86
AST 20 16 17 18 18 16
ALT 23 20 20 20 23 20
IRON
TIBC
Ferritin
Erythropoietin
Iron Sat Percent
B12
Folate
MCHC 31.4 31.2 31.9 31.5 33.4 31.3 34.2 30.7
MPV 8.5 7.7 7.9 8.0 7.3 7.4
MCV 103.8 105.3 104.7 107.0 105.3 107.6 103.1 107.8
Anyway I got sick of getting around 14 shots per week in just my arms and stomach. Areas became very sore, and also felt rather crappy for about half of each month. Noticed I had a kidney deal which they had assured me was no big deal. I researched and found it can cause anemia, and anemia can be treated by a nephrologist. Told my oncologist my idea of stopping his treatment, and trying a kidney doc. Haven't done so yet, waiting for my blood test results which will be drawn and given to me this coming Monday.
Sorry for going on as I know only a few will understand some of this. Birgetta, and Neil are the two who seem to know quite a bit. Hopefully there are more of you that can pitch in. I know if my theory doesn't work, starting Vidaza again doesn't work too well. Might have to then go the transfusion route. Won't do that too long. Like to know your opinions, and what you might try for treatment if all the previous fails.
Thanks so much,
Rich
