Bad news? I'm upset
Posted 27 July 2017 - 10:34 AM
Posted 27 July 2017 - 11:15 AM
08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)
Posted 27 July 2017 - 12:26 PM
Sandrea - I think only Trey is going to be able to interpret your BMA findings, so I hope he answers you. In the meantime, I can't help but think you're not in imminent danger or they wouldn't have waited so long (April to July) to let you know the findings; also the doctor said just observation was called for. Nobody has rushed you into the hospital or suggested a transplant. I do think it's terrible that you're left with no explanation and having to look things up on the internet yourself. They are not treating the whole you! It does appear that Gleevec is losing its ability to keep you safe, and I can't help but think that 600 mg must be making you feel absolutely awful. A drug switch is in order, maybe?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Posted 27 July 2017 - 02:55 PM
Trey or Scuba, but definitely more clarity from your hematologist/oncologist. You deserve better than "we will observe." Your doctor should tell you exactly what the BMA results mean, why he/she is recommending no action, and what the risks are of just observing.
We will all keep your in our thoughts.
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
Posted 27 July 2017 - 03:35 PM
You are showing a chromosomal variation:
Five cells out of 20 sampled (20%) show a deletion on chromosome 16 on the long arm at band 22.
15 out of 20 cells were normal for a human female.
The significance of this chromosomal variation (in adults) is not known which is why they are "observing".
They tested you for signs of Acute leukemia:
translocation t(16;16)(p13;q22) and inv(16)
where the presence of inversion chromosome 16 is diagnostic as well as the fusion of two genes CBFB and MYH11 (out of 200 cells). You were negative on this test. This means none of the cells looked at (200) show fusion of these two genes or inversion of chromosome 16. This is good news.
You almost certainly do not have AML.
Additional information on chromosomal nomenclature is summarized in part here:
Given your history of a rising PCR - it would be best if you could switch drugs. It appears you are losing response to Gleevec. No FISH for CML was done. You should be re-tested to verify CCyR given that your PCR is above 1%.
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"
Posted 27 July 2017 - 03:48 PM
The karyotyping does NOT show any CML Philadelphia Chromosome. So that is the good news.
46,XX,del(16)(?q22) shows 5 cells have a del(16)(q22)
46,XX shows 15 cells were normal female (is there such a thing? Just kidding...)
The del(16)(q22) is fairly rare. It must be distinguished from a translocation such as t(16;16)(p13;q22) or an inversion such as inv(16). Your Onc did a test for both and they were not detected. So what you have is a partial deletion of chromosome 16 in 25% of your white blood cells. If chromosome 16 were missing entirely your 46XX would be either 45XX or 44XX depending on whether one or both were deleted.
A couple months ago I said in a post to you: "Overall, if your PCR continues to do well in the future but you still have the high myeloblast levels, it would probably indicate a second type of marrow disease called Myelodysplastic Syndrome (MDS) along with the CML." This del(16)(q22) could be further evidence of an MDS condition, but of course I do not know for certain. But you have always been anemic which is also a clue for MDS. Another possibility is the del(16(q22) could be caused by the Gleevec itself, although that has never been reported; but that does not make it impossible.
Did you have a karyotype done at diagnosis 2 years ago or any other time?
Do you have elevated eosinophils (EOS) on you CBC report? If so that would be more of a concern.
Posted 27 July 2017 - 09:59 PM
Thank you all for your answers. Kat, I think my hem didn't want to scare me and at the same time she does not know exactly what might happen...
Scuba, thanks for the links, this clarified the meaning of the second analysis for me. Also these phrases from "Introduction to Chromosomes" give hope: "At the same time there is a group of microdeletions that are not associated with a specific clinical picture. These deletions (del 15q11.2, del 15q13.3, del 16p11.2) may be found in patients with various abnormalities as well as In healthy persons." "Although all genes in a normal person exist in 2 copies (one inherited from each parent), in fact, in many cases, the loss of one copy (maternal or paternal) does not have clinical significance." Picture on the report shown that I had a deletion in only one of the two copies of the chromosome 16.
As for the switching of the drug, there is no speech and will not be until I absolutely do lose the response, the hematologist wants to do PCR in 4 months after the dose increase (in October).
Trey, the number of myeloblasts is normal at this time, and all other parameters in the myelogram within the limits of the norm, it is only indicated that the number of megakaryocytes is increased. At the time of diagnosis, eosinophils were 1 on CBC, and the last year fluctuating between 1 and 4. I had 4 BMA and the karyotype was made always; on diagnosed, it was 100% Ph chromosome, in April 2016 the karyotype: 46XX, chromosomal aberrations were not detected. Why does this clone grow so fast? During the year, 25% of the cells became abnormal...
Posted 28 July 2017 - 10:48 AM
It seems that two possibilities for the del16(q22) are "more likely" given your EOS is normal:
1) Higher dosage Gleevec may be causing the del16(q)
2) MDS may be developing and in early stages
Of course, I do not know, but these seem to be the more likely candidates.
Posted 28 July 2017 - 12:41 PM
Thank you Trey, you always help us and find an explanation, I'll hope this is the first variant...
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