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New diagnosis - curious about your stats prior to treatment

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Hi everyone,

New to this. Diagnosed within the last week. I'm 31 years old.

I'm curious about the profile of people with CML prior to starting treatment. What was your BCR-ACL% before treatment, if you had a cytogenetics FISH panel? How quickly did it improve?

WBC? Platelets? Eosinophils? Myelocytes/Metamyelocytes? Total % of blasts?

I'm just starting out on this journey, and I want to know everything. Please feel free to share any other pertinent information you feel was helpful to you, or in understanding your diagnosis.

Thank you - from what I have read, this feels like a great resource for people with CML.

With hope,

O

Welcome to the forum. My diagnosis was incidental and I was feeling quite healthy at the time. My oncologist was thorough with the testing. In the first year of treatment I had three bone marrow biopsies. Spleen size was normal. My response to treatment was typical. Here's a copy and paste of my intitial testing. Sorry for all the extraneous stuff, but the numbers are in there if you can find them. :)
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.
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Early PCR, FISH and cytogenetics:

09/2012 - diagnosis
p210 transcript b3a2 and b2a2 118.683% IS (88.57%), p190 transcript e1a2 0.01% @ Dx, t(9;22) translocation in all 20 of the metaphases examined, FISH - 93%, WBC 65.5, began Gleevec 400mg/day, with allopurinol 300mg/day for a few weeks.

12/2012
003.590% IS (1.438%) & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome, FISH - 5.5%

2013
000.914% IS (0.813%)
000.434% IS (0.574%)
000.412% IS (0.611%)
000.360% IS (0.859%) & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormality

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Various Lab Results for September 25, 2012:

Lab Result Range Source Physician Comments
Absolute neutrophil
count, manual (ANC
(M))
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
25.15 x 10^3/uL 1.8 - 7.7
Neutrophil band,
percent (Band %)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
17% 0 - 3
Basophil, percent
(man) (Basophil %)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
1% 0 - 1
Eosinophil, percent
(man) (Eosinophil %)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
1% 1 - 3
Hematocrit
determination (HCT)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
39.5% 40 - 51
Hemoglobin
determination (HGB)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
13.3 g/dL 13.5 - 17
Lymphocyte, percent
(man) (Lymphocyte %)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
28% 20 - 45
153
Mean corpuscular
hemoglobin
determination (MCH)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
29.4 pg 26.3 - 34
Mean corpuscular
hemoglobin
concentration
determination (MCHC)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
33.7 g/dL 31.5 - 36
Mean corpuscular
volume (MCV)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
87.4 fL 80 - 100
(MPV)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
10.4 fL
Metamyelocyte,
percent (manual)
(Metamyelocyte %)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
7%
Lab Comments
Ref. Range: <1
Monocyte, percent
(man) (Monocyte %)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
5% 6 - 12
Myelocyte, percent
(manual) (Myelocyte
%)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
6%
Lab Comments
Ref. Range: <1
Neutrophil (M)
(Neutrophil % (M))
35% 43 - 65
154
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
Platelet count (PLT)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
340 x 10^3/uL 140 - 440
Plt Est (Platelet
estimate)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
Adequate
Lab Comments
Ref. Range:
(Platelet morphology)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
Few Large Platelets
Lab Comments
Ref. Range:
Red blood cell count
(RBC)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
4.52 x 10^6/uL 4.4 - 5.9
Red cell distribution
width determination
(RDW)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
16.7% 11.5 - 14.5
White blood cell count
(WBC)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
48.4 x 10^3/uL 3.9 - 10.6
Albumin measurement
(Albumin)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
4.7 g/dL 3.5 - 5
Alkaline phosphatase 59 U/L 45 - 122
155
measurement
(Alkaline
phosphatase)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
Urea nitrogen
measurement (BUN)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
21 mg/dL 6 - 20
Bicarbonate
measurement (CO2)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
28 mmol/L 22 - 31
Calcium measurement
(Calcium)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
9.6 mg/dL 8.4 - 10.2
Chloride measurement
(Chloride)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
101 mmol/L 96 - 108
Creatinine
measurement, serum
(Creatinine)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
0.8 mg/dL 0.5 - 1.2
Glucose measurement
(Glucose)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
96 mg/dL 70 - 115
Potassium
measurement
(Potassium)
Facility: Northwest
Cancer Specialists-
4.2 mmol/L 3.5 - 5.1
156
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
Sodium measurement
(Sodium)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
138 mmol/L 135 - 145
Alanine
aminotransferase
measurement
(ALT/SGPT)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
20 U/L 0 - 40
Aspartate
aminotransferase
measurement
(AST/SGOT)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
38 U/L 0 - 41
Anisocytosis (manual)
(Anisocytosis (size))
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
1+
Lab Comments
Ref. Range:
FISH, BCR-ABL
rearrangement (BCRABL
FISH
rearrangement)
Facility: Northwest
Cancer Specialists-
Prov 5050 NE Hoyt St.
#256 Portland, OR
97213
See BCR/ABL by
FISH Pathology
Report
Lab Comments
Testing performed at
Compass Oncology
5050 NE Hoyt St.,
Suite 256 Portland,
OR 97213
(BCR/ABL : ABL ratio
by RT-PCR, quant)
Facility: Northwest
Cancer Specialists-
Prov 5050 NE Hoyt St.
#256 Portland, OR
97213
See BCR/ABL Report
Bilirubin, total
measurement
(Bilirubin, total)
Facility: Northwest
Cancer Specialists-
0.3 mg/dL 0 - 1
157
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
(Cytogenetics,
hematology)
Facility: Northwest
Cancer Specialists-
Prov 5050 NE Hoyt St.
#256 Portland, OR
97213
See Cytogenetics
Report
(Elliptocyte)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
1+
Lab Comments
Ref. Range:
(GFR non-African
American, estimated)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
>60
Lab Comments
Units:
mL/min/1.73m^2, . Ref.
Range: >60
mL/min/1.73m\S\2
Globulin measurement
(Globulin)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
2.9 g/dL 1.8 - 3.6
Hypochromia (manual)
(Hypochromia)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
1+
Lab Comments
Ref. Range:
Lactate
dehydrogenase
measurement (LDH)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
884 U/L
Lab Comments
Testing performed at
Compass Oncology
19260 SW 65th Ave.
Suite 435 Tualatin, OR
97062
110 - 250
Microcytes (manual)
(Microcytosis)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
1+
Lab Comments
Ref. Range:
(Pathology/Cytology
Lab result note)
See Bone Marrow
Pathology Report
158
Facility: Northwest
Cancer Specialists-
Van 210 NE 136th
Ave. Vancouver, WA
98684
Lab Comments
See Bone Marrow
Pathology Report
Spherocyte (M)
(Spherocytes)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
Occasional
Lab Comments
Ref. Range:
Teardrop cell
measurement
(Teardrop cells)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
1+
Lab Comments
Ref. Range:
Uric acid
measurement (Uric
acid)
Facility: Northwest
Cancer Specialists-
Prov 5050 NE Hoyt St.
#256 Portland, OR
97213
7.3 mg/dL
Lab Comments
Testing performed at
Compass Oncology
5050 NE Hoyt St.,
Suite 256 Portland,
OR 97213
3.6 - 7.8
Protein measurement
(Total protein)
Facility: Northwest
Cancer Specialists-
MP19260 SW 65th
Ave#435 Tualatin,OR
97062
7.6 g/dL 6.4 - 8.3
159

Hey! Thanks for sharing all that! Glad to hear you're responding to treatment.

Hi healthyhabits

So sorry to hear that you've just been diagnosed and that you've had to join our club. I am sure that all of this must be very frightening and overwhelming right now, if you're anything like me, and I just want to reassure you that you have a very survivable and manageable condition that, for the vast majority of patients, is successfully treatable with these incredible drugs. Feel free to reach out if there is anything you need to know - this community is absolutely incredible and has helped me through the ups and downs of living with CML (with the emphasis on *LIVING*!).

To answer your question, here were my stats at diagnosis (November 2015):

White blood cell count: 272.69
of which Neutrophils 169.07
Lymphocytes 8.18
Monocytes 5.45
Eosinophils 2.73
Basophils 2.73
Metamyelocytes 40.90
Promyelocytes 13.63
Blasts 6% in blood, 11% in bone marrow
(This blood profile gave me a differential diagnosis of either CML or CMML)

Red blood cell count: 4.12
Haemoglobin: 12.8
Haematocrit: 0.37

Platelets: 109

Spleen measured 22cm (11cm below the intercostal margin) and I had lots of symptoms: night sweats, bleeding on the retina, easy bruising, fatigue, abdominal pain and a general sense of doom!

All blood counts normalised within 6 weeks of starting Dasatinib 100mg. Spleen shrunk to normal size after 2 months.

And the history of my BCR-Abl is as follows:
Diagnosis 72%
1 month 36%
3 months 2.7%
6 months 1.6%
12 months 0.54%
18 months 0.3%
24 months 0.08%
Steady decrease with a few plateaus here and there. As you can see I missed the 6 month, 12 month and 18 month milestones but stayed the course.
Latest test 0.003% but I'm currently not taking any medication at all (I've got other threads about this complicated journey).

Hope this helps!

All the best for your continued recovery,

Martin

The numbers at the start (mainly excluding blast %) are often not really so important, but how they respond to treatment is the key thing.

You can have a sky high BCR-Abl at diagnosis, over 300% but respond really well. Equally you could be diagnosed at 50% but not respond so well. It’s one of the reasons that no matter what your % was at diagnosis we “pretend” it was 100% for everyone when test results are reported.

David.

Thank you, David, for this helpful posting. I was guided to consider the PCR at diagnosis to be 100%. I was also told that FISH trumps PCR until FISH reaches zero.

I did not get a PCR until three months had passed.

Curiously, I had a bone marrow sample taken at diagnosis by the RNA was stored and not analysed.

PCR fluctuates wildly at higher %s, and FISH is more stable at that point. But PCR comes into its own at the lower levels. There are many approaches to CML testing; in a perfect world where pain was no issue you’d just test bone marrow every time, but of course that’s not doable.

FISH testing does have its place, but isn’t always necessary as it can be quite a manual exercise.

David.