Possible CML dx?
Posted 06 April 2015 - 11:10 AM
I have spent a few days reading post after post here and the information is truly wonderful. My husband (35 yrs) received an abnormal CBC last Friday and I am not sure if we are even anywhere near a dx of CML, but Dr. Google has lead me down this road. With this in mind, if this post is inappropriate and/or unwelcome please let me know and I will delete it promptly.
My husband went in for a routine physical for a new job. He received a call the next day that his Platelets and Basophils were both critically high, 1170 and 11.2%. His WBC is also high, 18.5. Other highs were his Absolute Lymphocyte 6.2 and Absolute Eosinophil 0.9. He was told to go see his primary physician. The primary said we will rerun the CBC on Thursday.
We are hoping that these results are just a perfect storm of events that lead to these results between my husband being a Type 1 Diabetic, a double dose of Advair inhaler the night before (steroid), the fact he was a bit sick the week before and hay fever season being in full force here.
I have 2 questions. One, does this seem like results that could lead to a CML dx? I know a BMB is needed but any insight would be nice. Two, is the standard of care really a week to rerun the CBC with platelets and basophils so high?
Thank you very much for any info you can provide.
Posted 06 April 2015 - 11:19 AM
There are many knowledgeable people who will be posting soon. I do not know enough about your questions to answer them or give you thoughts.
Best of luck with whatever is going on, I hope you never have to post here again except to say it is not CML, but if you do....you have found a good place.
Posted 06 April 2015 - 03:26 PM
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
Posted 06 April 2015 - 07:35 PM
Except for the high Plateletcount (1.1 million) I would not have been so concerned. The other things could be explainable by combined allergies and recent illness. But the platelets are very high, and this can be the early signs of a blood cancer. Of course I do not know, and I cannot diagnose him, but that would be my primary input. So very high platelets can be the early signs of a blood cancer, but not always (and CML is not the only possibility -- PolycythemiaVera and Essential Thrombocythemia are others).
It may actually be too early to diagnose him with the WBC barely high. Most of us with CML were diagnosed with WBC above 100, and he is only at 18. That WBC is not high enough to assume it is CML, and it may also mean his marrow would not show the signs this early if a bone marrow biopsy (BMB) were done now, although it may. So do not be led astray if the docs perform a BMB and find it negative with his barely high WBC, since the test is not sensitive enough to diagnose CML unless the disease is far enough along. So he needs to be monitored for at least a year for any signs of a blood cancer. If all returns to normal and stays there, then it was just a series of odd flukes aligned together, which can occasionally happen. But you have valid reason for concern with the very high platelet count.
Edited by Trey, 06 April 2015 - 07:42 PM.
Posted 07 April 2015 - 02:00 AM
Trey - all my counts were normal apart from slightly elevated Basophils and even the level of them had a couple of my GPs dismissing the idea that anything was happening. I had no other side effects. BMB showed CML though.
Posted 07 April 2015 - 03:00 AM
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Posted 07 April 2015 - 05:26 AM
Posted 07 April 2015 - 07:24 AM
Posted 07 April 2015 - 07:28 AM
My thoughts are with you at this scary time of uncertainty, but you have certainly found the right place to come to for advice and support. There is also another discussion board here called "Waiting for a Diagnosis". You could repost there (mention you have been here or you will be directed here by someone, I'm sure) and see if you hear back from anyone whose journey was similar to your husband's.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 07 April 2015 - 12:23 PM
Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15
22% 5/15 0.13% 6/15 PCRU attained 9/15
Initial dose Sprycel 100 mg 3/15 Lowered 80 mg 5/15 Lowered 50 mg 1/16
Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage
Sprycel: Currently 50 mg per day - taken 10 pm
Posted 07 April 2015 - 04:35 PM
If you can talk the docs into doing a BCR-ABL PCR or maybe a BCR-ABL FISH that could rule in/out CML earlier than a BMB. Like Gerry mentioned, a BMB can sometimes show CML early with relatively low WBC, but sometimes not, so it can be a false negative early on. Also, he may have ET or PV instead, which FISH and PCR tests will not help with. So the docs may be reluctant to go on a "fishing expedition" with specific tests since they often prefer to "watch and wait" for a while, but try anyway.
Edited by Trey, 12 April 2015 - 12:50 PM.
Posted 07 April 2015 - 07:30 PM
I had to google what elevated Basophils meant after a cholesterol blood test. It took nearly a year, but my regular GP took it seriously enough to send me off to a Specialist. Other GPs I saw at the clinic thought it was nothing. Over that time my Bashophils didn't go up any further and everything else remained in the normal levels.
Perhaps my immune system just needed the boost from the Gleevec to help it control the CML, which has allowed me to be off the Gleevec for 17 months now.
Posted 11 April 2015 - 04:40 PM
Posted 11 April 2015 - 06:58 PM
I'm not sure if all labs are the same, but my Australian report shows 0 - 0.15 are the normal range for Basophils.
Mine were only a little bit outside of that, so that was why it took a bit of time before I was sent to the hematologist. Plus I had no other signs of anything. I chased it up because I felt so well, no infections which could raise it, and I wanted to know why it kept showing up.
Posted 11 April 2015 - 07:08 PM
I've just gone back and dug up my records - Basophils were 0.47 and Platelets were 463 (normal range 150 - 400) on 13/07/10. Interesting when I went on the Gleevec the next test had the Basophils at 0.56 and the Neutrophils at 10.90 ( normal range 1.5 - 8.0) which was the only time the WCC was out of normal range.
A month after starting Gleevec everything was normal.
You need the BMB to tell the full story.
Posted 11 April 2015 - 10:06 PM
What is your basophil history? If only slightly elevated then not really a concern. Normal BAS Abs is 0 - .1
Posted 12 April 2015 - 06:36 AM
Posted 12 April 2015 - 10:01 AM
You have not been diagnosed with CML, so the meaning of these issues is unclear. Some people have higher counts than others for unknown reasons. It could be related to allergens, or autoimmune issues, or a developing issue which is not yet known. But there is no clear sign of CML.
Regarding BAS and allergens, it doesn't have anything to do with being "allergic", just allergens in the air that get into the body by breathing and the BAS levels rise to meet the need. It is just what the body does to deal with invaders. Being "allergic" is when your body responds with nasal flushing, itchy eyes, etc. I don't know if this has anything to do with your issues, but it could.
The issues should be monitored to watch for changes over time. If you want to rule out CML you should have your doc request a BCR-ABL PCR test (qualitative).
Posted 12 April 2015 - 11:10 AM
"The issues should be monitored to watch for changes over time. If you want to rule out CML you should have your doc request a BCR-ABL PCR test (qualitative)."
Trey - Why not a FISH test first?
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
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