I'm wondering if anyone has any information about CML patients with secondary chromosomal translocations. My initial onc-hematologist seemed unconcerned with mine, but the specialist in myeloid leukemias that I got a second opinion from had it first on her list of things to discuss. Evidently, some secondary translocations can impact the effectiveness of treatment. Mine (10:17) is not in that group, but it is extremely rare and so there is, apparently, little known about it. I'm new to all this, my CML was caught very early and so I'm in the beginning stages of everything. I'm just reaching out to gather as much information as possible. Has this topic already been discussed on the CML forum? Does anyone know of any good research that is reported?
CML with Second Chromosome Translocation
#1
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Posted 21 April 2016 - 10:00 PM
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
#2
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Posted 22 April 2016 - 08:44 AM
The t(10;17) translocation is rare, only 4 reported cases. None have been seen during the era of the TKI drugs. It could (emphasize could) indicate you have Philadelphia Chromosome positive AML leukemia (PH+ AML), so you should discuss this with your Onc.
Also, your Onc will not be qualified to deal with it since it is so rare. At a minimum your specialist needs to consult with Dr Neil Shah at the UCSF Medical Center since he is one of the few Onc specialists who has some experience with this. In fact, I would suggest your get a second opinion from him, or maybe Dr Brian Druker at OHSC in Oregon:
http://cancer.ucsf.e.../shah_neil.3658
http://www.ohsu.edu/...bout-us/druker/
You said you are taking Gleevec but I believe you need to be taking Sprycel. Gleevec does not deal with such unusual issues as well as Sprycel.
http://atlasgenetics...5q21ID1234.html
http://www.hemoncste...(14)00079-X/pdf
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Posted 22 April 2016 - 11:25 AM
Thanks, Trey. I found similar articles, too. Trying to remain calm. I am a month away from my first 3-month checkup, so very early in the process, which I hope will be to my advantage. I will contact Drs. Druker and Shah. Good advice.
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
#4
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Posted 23 April 2016 - 10:30 AM
Just a word about researching this issue. This is NOT the same t(10;17) which is called a "clear cell sarcoid tumor". Your issue is a blood cell translocation, and the other one is a solid tumor of the kidney cells, so that is quite different.
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Posted 23 April 2016 - 10:54 AM
Thanks for the clarification. I did see those articles, too.
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
#6
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Posted 25 April 2016 - 05:05 PM
Follow-up: I heard back from one of the experts. Sounds like, because I was diagnosed in chronic phase CML, there is a good possibility that I will respond to TKIs in a manner similar to patients who do not have second chromosome translocations. We will know more about that in a month, when I have my first 3-month checkup and PCR. (There is a possibility that the disease has evolved prior to treatment, but I think if that were the case I would have seen different results in recent CBCs. My red blood cell and platelet counts have always been normal; my WBC was 55K at diagnosis. My WBC dropped to 16K 2 weeks after starting Imatinib. Now all counts are a little low.) There is also the possibility that I was born with the second chromosome translocation but that it wasn't picked up until I had a BMB, which is interesting, given my family history (sibling and father both recently died of blood cancers).
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
#7
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Posted 25 April 2016 - 05:31 PM
Good that you were diagnosed very early. And good start with the TKI. But I would urge caution about early results because secondary translocations can sometimes respond well for a relatively short time and then the response may stop, or maybe the good results will continue. Only time will tell the story. So I would still suggest switching to Sprycel and seeing Dr Shaw at UCSF. The part about being born with the t(10;17) is probably not the most likely scenario. But overall the news so far is good. I would just not make too many assumptions early on. This needs to be treated more aggressively then standard CP CML.
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Posted 25 April 2016 - 07:48 PM
Thanks, Trey. You can be sure that I will monitor this closely and carefully.
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
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Posted 03 May 2016 - 07:17 AM
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Posted 07 May 2016 - 10:07 PM
Hi Lucas - Thanks for the great information! How did you find out that you had a constitutional chromosome translocation, that you were born with it? Is there a test for that? I just had my first bone marrow test and that's how they found it, as well as 9:22=BCR-ABL. And do you know how you can tell if it's a minor or major route?
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
#11
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Posted 08 May 2016 - 01:14 PM
C,
Was the t(10;17) in 100% of cells examined by the BMB? If not, it is unlikely you were born with it. But even if it was in 100% at the BMB, that does not mean you were born with it. There would be no way to tell unless you had a previous blood chromosome analysis. And it must be blood cells, not other tissue. A t(10;17) for blood cells is different than a t(10;17) for tissue.
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Posted 08 May 2016 - 03:59 PM
Trey - Yes, all 20 cells had both 9:22 and 10:17 translocations. It is my understanding, too, that people are born with chromosome translocations that go undetected until they get a BMB. But I'm wondering, if that is the case, how do you ever know for sure if you have a constitutional chromosome translocation - that you were born with it? It would ease my mind to know more about this...
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
#13
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Posted 08 May 2016 - 05:38 PM
There is no way to know for certain. But as you respond to TKI therapy, if future BMBs show the t(9;22) diminishes or goes away entirely but the t(10;17) remains in all blood cells -- both those with t(9;22) and those without t(9;22) -- and all leukemia symptoms are reversed and go away, then an assumption may be made that the t(10;17) is benign and possibly has always been there. But I would think that is the less likely scenario, and that the two translocations go together as a leukemic bundle, meaning they appeared together in the originating CML translocation. Personally, I would treat the t(10;17) as a leukemic translocation, even though the symptoms may have been masked so far by the t(9;22) symptoms. I would highly suggest seeing Dr Shah at UCSF since he is one of the very few Oncs to have seen this translocation in a patient. I believe he would switch you to Sprycel right away.
#14
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Posted 09 May 2016 - 08:09 PM
Lucas - Do you mind my asking what your second chromosome translocation is?
Trey - I did hear back from Dr. Shah. He indicated that it is possible to have a constitutional chromosome translocation, in which case BCR-ABL disappears and 10:17 stays after treatment with TKIs. It is also possible that the disease might have evolved prior to treatment. BUT, if the patient is correctly diagnosed as CP CML, the treatment outcome with TKIs is similar to patients who do not have secondary chromosomal translocations (I believe inferring that the disease did not progress prior to treatment). He didn't mention Sprycel. He suggests getting another BMB done in the future, rather than just relying on blood testing for PCR. If I don't reach 10% detectability or less at 3 months (late May), I will ask for a BMB then to see what is going on. I have responded well to treatment so far, and if I continue to respond well, I will have a BMB done in about a year or so. With any luck, I won't need to go see him or switch to Sprycel, but only time will tell. I will be vigilant. And I'll keep you posted. Thanks for your input! The available online literature on this subject is old, spotty and scary, but I've had two specialists basically say that there's no need for alarm (yet) and to just keep a close eye on everything.
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
#15
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Posted 11 May 2016 - 10:34 AM
It is good to have Dr Shah's input, which should be reassuring. Either way I would have a BMB at 6 months, not 1 year. The information is so sparse on this issue that extra testing is a very good idea. The BMB is the only way to know what is going on with the t(10;17).
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Posted 11 May 2016 - 10:40 PM
#17
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Posted 12 May 2016 - 08:33 AM
The t(13;14) is a Robertsonian translocation and is not a blood translocation. In leukemia, only blood translocations matter.
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Posted 24 May 2016 - 11:13 PM
Three month PCR results in from 5/18/16: BCR-ABL1 P210 = 0.88% (down from 59.4492% on 2/15/16). I'm VERY relieved!
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
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Posted 25 May 2016 - 12:55 AM
Three month PCR results in from 5/18/16: BCR-ABL1 P210 = 0.88% (down from 59.4492% on 2/15/16). I'm VERY relieved!
Great progress campanula! 
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
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Posted 26 May 2016 - 01:42 AM
Three month PCR results in from 5/18/16: BCR-ABL1 P210 = 0.88% (down from 59.4492% on 2/15/16). I'm VERY relieved!
That is great and well on your way to PCRU.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
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