10 replies to this topic

[worriedwife1]

my husband was diagnosed july 2013 with three transloaction (8 9 22). he started taking sprycel in august. his first PCR was 0.6, in December 2013, his Pcr started going down pretty quick, he had finally reached MMR last April .05 but his new PCR  showed increase .1854. His ONC seemed to be concerend and wants to repeat the test in October. Honestly i am getting really worried. His should be PCRU since he has been taking medicine for 2 years now. Is he mutating?

 

 

[Busa]

I am sure Trey or some one more knowledgeable than me (actually that would be everyone) will be along shortly to assist with words of wisdom.  I can only offer my support and remember to take a deep breath, relax a little and both you and your husband enjoy the day.

[tazdad08]

It is a shock when numbers fluctuate, but I feel like its not unheard of. I was extremely upset when I became detectable again after almost 4 years being undetectable. I am no specialist, but I would let it soak it in a little, take a breath, and try to relax until next test

[Trey]

I assume you have not posted here previously about him.  So welcome to our group.

 

First, it is certainly a very good idea to repeat the PCR test.  Sometimes there are errors. 

 

But given the complex translocation, some additional issues should be addressed.  Drug response for three-way translocations is not as easy to predict as for the standard CML translocation which is t(9;22).  Your husband has a t(8;9;22) translocation.  It usually takes a couple years to see whether the long term response to TKI drugs will continue to be as good as the short term drug response for these complex translocations.  So your husband is at the point where he will find out.  So a fast initial response is not always continued for complex translocations, but only time tells the story.

 

Did the Onc tell him whether the diagnosis was CML or was it Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia (Ph+ ALL)?  I ask because some of the three-way translocations where chromosome 8 is involved can be ALL leukemia, not CML.  I would ask the Onc the following:

1) Is the diagnosis CML or Ph+ ALL?  What is the basis for that conclusion?

2) Was a Flow Cytometry test done at diagnosis?  (If a Flow Cytometry was not done, the Onc does not know the true diagnosis).  Did it show involvement of significant numbers of lymphoid cells in the leukemia?  If yes, can Ph+ ALL still be ruled out?

3) Should another Flow Cytometry test be done now?

 

It is important to distinguish between CML and Ph+ ALL.  Although CML patients have a very high rate of long term drug response (although switching drugs may be required), Ph+ ALL drug response can be less predicable and sometimes short lived.  Knowing this information can help your husband be better equipped to deal with this disease.

 

 

 

 

https://www.google.c...ssl#q=t(8;9;22)

[worriedwife1]

thank you Trey for your response,
i donot think flow chart was done. His onc doesnot seem to know a whole lot !his karyotype at diagnosis was 46,x,y t(8,99,22) (p11.2, q34, q11.2) his report indicates Cml . beside three way translocation everything else was leading towards Cml . his wbc at diagnosis was 187000, blast were only 1% . at this point i really do not know what else to do.

[Trey]

I would suggest focusing on repeating the PCR.  But ask the Onc the questions I listed above.  This would be a very good case for a second opinion from a leukemia specialist (expert).

 

Where are you generally located?

[worriedwife1]

Thanks Trey
we will ask all those questions to his Onc. we are from oklahoma.

[worriedwife1]

Trey,
flow cytometry was done along with bone marrow smears, cytogenetics anf fish tests. , i just found his reports, it doesnot not say anything about lymphiod cells. i hope i am reading this right.
Thank you

[Trey]

If you want me to look at the Flow Cytometry and other lab reports you can send images using the "Messenger" (click on the envelope icon at the top right in the black bar).

[worriedwife1]

update
his new pcr is .06 down from .189, so hopefully it will go further down in 3 months

[Trey]

No worries. 

 

After more than 2 years he is doing well with the 3-way translocation.  The 2 year point is generally the milestone where if there is no loss of drug response up until that time, the patient will most likely continue to do well. 

 

All is well.