Monday, July 28, 2014

Week 16- Seeing Improvement in Ambulation!

Sorry for the no-posting lately. Things have been busy but I am getting a handle on them!

One new thing to report- my walking: 

A Bit of History
     I am a tall gal, almost 6' and with those long legs I was always a fast walker. As teens my sister would always ask me "where's the fire?" when we were out shopping or pal-ing around. Well over the years I guess I slowed considerably. I remained fully ambulatory but would need to take 'rest periods' in large shopping places or at the grocery store. I began to resort to the store-provided mobile cart on occasion but always felt silly doing this. 

   In the past two years I stopped accompanying my husband on errands all together. I could no longer walk any part of a grocery store trip and it was just frustrating. I became good at 'hiding' this from family and friends by 'saving up' my endurance for special occasions like Birthdays and Christmas. In the end, I doubt I was fooling most people...

The News
  Well Tuesday we were off to the 'big city' for my neuro visit (which turned out was an NP visit) and I HATE running late. So by the time we parked I was focused on getting to my appointment on time- my husband had to actually ask me to SLOW DOWN!!! 

Another Ah-Ha moment brought to you by Lemtrada!

Ever thankful,
Emma


Sunday, July 27, 2014

Week 16 Labs


I am not sure how these labs will show up on here, the weeks are piling up. I think it is important to look at 'changes over time' so for my own purposes I like to see how things are changing. But all this data may push the chart off the page so I may need to figure out a new way to post it here.

In this batch no abnormalities on the Complete Metabolic Panel. Basically this means liver and kidneys are functioning normally.

CBC
No major surprises here. Not a lot of improvement though. This may be due to a sinus cyst picked up on MRI. I may have a slight sinusitis and have begun to treat that.

Thyroid
It was not time to do a thyroid test but my neuro requested it. It is normal. Peak for thyroid problem is year 3 if memory serves- it is on past blog posts during the week of Lemtrada infusion.

Subset Panel
Not a lot of change here either.

This week I learned that Rituximab treatment monitors CD19 % (the CD19 refers to a marker on the cell surface of that particular type of immune cell). When Retuximab is given CD19% is monitored monthly. When it climbs above 1% another dose is given. This is usually every 6-9 months. This is interesting because it may be an avenue to explore to prevent Thyroid and Platelet problems (ITP) but there are concern about how much immune suppression is too much (Lemtrada and Rituximab are both immune suppressants)

How you can help others
I am currently working on a week by week report of what to expect Post Lemtrada. If you have been given Lemtrada and kept a diary, journal or emailed with someone regularly post infusion I would be interested in your symptoms so I can make the list as complete as possible. My current neurologist is planning to use this list to help patients know what to expect- in anticipation of FDA approval of Lemtrada, fingers crossed :)


3/25/2014
CMP
Baseline
5/2/2014
5/30/2014
6/27/2014
7/24/2014
Normal Range
Glucose
70
86
98
98
79
65-99
mg/dL
BUN
16
17
13
14
13
7-25
mg/dL
Creatinine
0.94
0.96
0.99
1.13
1.00
.5-1.10
mg/dL
eGFR
76
74
71
61
70
> OR = 60
mL/min/1.73m2
B/Creatinine Ratio
n/a
n/a
n/a
12
n/a
6-22
(calc)
Sodium
139
138
140
138
134
135-146
mmol/L
Potassium
3.6
4.9
4.5
4.3
4
3.5-5.3
mmol/L
Chloride
106
106
109
106
102
98-110
mmol/L
Carbon Dioxide
25
23
22
21
23
19-30
mmol/L
Calcium
8.7
9.1
9.3
9.4
9.5
8.6-10.2
mmol/L
Protein, Total
5.7
6
6.2
6.6
6.9
6.1-8.1
g/dL
Albumin
3.7
4.2
3.9
4.3
4.4
3.6-5.1
g/dL
Globlulin
2
1.6
2.3
2.3
2.5
1.9-3.7
g/dL
Albumin/Globulin Ratio
1.9
2.3
1.7
1.9
1.8
1.0-2.5
(calc)
Bilirubin total
0.3
0.4
0.3
0.3
0.3
0.2-1.2
mg/dL
Alkaline Phosphatase
80
76
56
68
61
33-115
U/L
AST
15
15
14
16
17
10-30
U/L
ALT
13
12
13
16
14
6-29
U/L

CBC
Baseline
5/2/2014
5/30/2014
6/27/2014
7/24/2014
Normal Range
White Blood Cell Count
9.3
3.2
3.1
4.5
5.1
3.8-10.8
Thousnd/uL
Red Blood Cell Count
4.45
4.5
4.54
4.57
4.79
3.90-5.10
Million/uL
Hemoglobin
13.1
13.4
13.5
13.4
13.9
11.7-15.5
g/dL
Hematocrit
38.6
39.8
39.9
39.6
40.8
35-45
%
MCV
86.7
88.5
87.9
86.5
85.3
80-100
fL
MCH
29.3
29.7
29.7
29.4
28.9
27-33
pg
MCHC
33.8
33.5
33.8
34
33.9
32-36
g/dL
RDW
14.9
16.9
15.6
15.2
15.4
11-15
%
Platelet count
183
228
189
248
223
140-400
Thousnd/uL
Absolute Neutrophils
4957
2854
2403
2934
3585
1500-7800
cells/uL
Absolute Lymphocytes
3357
112
288
806
806
850-3900
cells/uL
Absolute Monocytes
660
205
282
486
393
200-3900
cells/uL
Absolute Eosinophil
288
22
112
266
291
15-500
cells/uL
Absolute Basophils
37
6
16
9
26
0-200
cells/uL
Neutrophils
53.3
89.2
77.5
65.2
70.3

%
Lymphocytes
36.1
3.5
9.3
17.9
15.8

%
Monocytes
7.1
6.4
9.1
10.8
7.7

%
Eosinophils
3.1
0.7
3.6
5.9
5.7

%
Basophils
0.4
0.2
0.5
0.2
0.5

%









Thyroid
Baseline
5/2/2014
5/30/2014
6/27/2014
7/24/2014
Normal Range
TSH
1.45
0.95


1.09
.40-4.50
mU/L
Reflex to T4
n/a
n/a


n/a





T & B Subset
Baseline
5/8/2014
5/30/2014
6/27/2014
7/24/2014
Normal Range
% CD3 (Mature T Cells)

7
97
97
98
57-58
%
Absolute CD3+ cells

<20
316
582
643
840-3060
cells/uL
% CD4 (Helper Cells)

3
7
13
11
30-61
%
Absolute CD4+ cells

<20
23
78
67
490-1740
cells/uL
% CD8 (Suppressor T Cells)

3
85
80
82
12-42
%
Absolute CD8+ cells

<20
276
480
490
180-1170
cells/uL
Helper/Suppressor Ratio

1.1
0.08
0.16
0.14
.86-5.00

% CD19 (B Cells)

3
2
1
1
6-29
%
Absolute CD19+ cells

<20
<20
<20
<20
110-660
cells/uL
Absolute Lymphocytes

138
325
599
655
850-3900
cells/uL







Vitamins
Baseline
Normal Range
B-12
939
5/2/2014
5/30/2014
6/27/2014
7/24/2014
200-1100

Folate
22.2


470
391
>5.4

Vitamin D, 25-OH, total
44




30-100