13 replies to this topic

[tiredblood]

At diagnosis:  Diagnosed with PCR only 123% BCR-ABL1

 

Reached hematologic response at 1 month after starting TKI (only on the one-month lab)

 

Reached 0.000% by 3 months and have maintained 0.000% per PCR testing for just under 2 years

 

WBCs, neutrophils have remained elevated somewhat throughout

 

Saw a new doc who isn't convinced of my diagnosis (CML, no CML, CML plus polycythemia vera and/or myelofibrosis, etc.)

 

Options:  Stay on TKI, decrease dosage of TKI (side effects), or discontinue TKI, in an effort to loose CMR and monitor frequently via PCR (CMR most often lost within 6 months following TKI discontinuation, per doctor)

 

I chose to discontinue the TKI with frequent monitoring.  IIUC, if I loose MR between now and 6 months, I'll have a BMB, or in 6 months, have a BMB to get a more definitive diagnosis.

 

Anyway, just waiting to see what happens and thought I'd share my current situation.  TKI rash is dissipating.  I'd love for my skin to not be so dry.  Maybe that will be next.

 

Hope everyone has a great weekend!

[Melanie]

Did you have a BMB at dx? Was the Philadelphia chromosome ever seen or positive? Surprise that Onc doesn't want to do more definitive test to determine correct dx.

Taking or discontinuing TKI treatment without a correct dx is rather unusual. Don't blame you for wanting to discontinue the TKI, but I would want to know if the dx is correct more.

Good luck to you!

[snowbear]

I wouldn't discontinue meds or accept a change in diagnosis without a BMB.  Hope all goes well with whatever you decide.

[missjoy]

What caused your new doctor to have doubts about your diagnosis? Elevated wbc and neutrophils or becoming PCR Undetectable too soon? Did you have a bone marrow biopsy at diagnosis?

[Trey]

She had no BMB and no FISH at diagnosis.  Very poor practice.  Her very high PCR (123%) did not match her barely high WBC (stayed about 16 - 18).  Now she doesn't know whether she needs the TKI drug or not thanks to an Onc who refused to follow proper procedure.  And a BMB now would not show anything about CML.

[tiredblood]

Did you have a BMB at dx? Was the Philadelphia chromosome ever seen or positive? Surprise that Onc doesn't want to do more definitive test to determine correct dx.

Taking or discontinuing TKI treatment without a correct dx is rather unusual. Don't blame you for wanting to discontinue the TKI, but I would want to know if the dx is correct more.

Good luck to you!

No BMB at dx, but Ph+ CML per PCR.  He does want to do a BMB to make a more definitive dx.  That is the plan.

[tiredblood]

I wouldn't discontinue meds or accept a change in diagnosis without a BMB.  Hope all goes well with whatever you decide

 

She had no BMB and no FISH at diagnosis.  Very poor practice.  Her very high PCR (123%) did not match her barely high WBC (stayed about 16 - 18).  Now she doesn't know whether she needs the TKI drug or not thanks to an Onc who refused to follow proper procedure.  And a BMB now would not show anything about CML.

If I loose response to the TKI, then IIUC, a BMB would probably show CML.  But, being on the TKI 22 months, if I add correctly, I wonder would a BMB show CML at all if I maintained the response.  Doc seems to think I'd loose response within 6 months.  He has also suggested a lab/clerical error re: the PCR, although highly unlikely.  If I didn't have CML, I'd hate to have to take a TKI for the rest of my life unnecessarily.  We will see.  The Lord has a plan.

[tiredblood]

She had no BMB and no FISH at diagnosis.  Very poor practice.  Her very high PCR (123%) did not match her barely high WBC (stayed about 16 - 18).  Now she doesn't know whether she needs the TKI drug or not thanks to an Onc who refused to follow proper procedure.  And a BMB now would not show anything about CML.

Really, I think there are probably a lot of MDs that use only PCR which is not good practice.  I personally have had three doctors tell me that a PCR would suffice for dx, which is concerning.

[Frogiegirl]

My mind can't help but wander and put myself in your shoes. ....the possibility of not having CML.......that would be amazing!

[Gail's]

I think your new doc's plan is reasonable. Perhaps discontinuing, waiting a while for pcr to rise (if it does) then BMB to confirm diagnosis, will get you the correct diagnosis then proper treatment. If you do have CML then resuming the TKI should get you back where you need to be number wise. What have your latest WBC and neutrophil counts been?

[tiredblood]

What caused your new doctor to have doubts about your diagnosis? Elevated wbc and neutrophils or becoming PCR Undetectable too soon? Did you have a bone marrow biopsy at diagnosis?

Yes, continued elevated WBCs and Neutorphils, CMR very soon. No, no BMB at dx.  He felt that the clinical course wasn't adding up and was diagnosed on only one blood test, PCR.

[tiredblood]

My mind can't help but wander and put myself in your shoes. ....the possibility of not having CML.......that would be amazing!

I would love not to have CML, but a lab or clerical mix up is from what I understand highly unlikely.  I do know that two patient identifiers were checked when the labs were drawn.  The dry skin is very uncomfortable today.

 

Oh, and a low positivity of JAK2 V617F (0.1%)

[Terran]

"We will see. The Lord has a plan."

Yes, yes, thank you.

[soundoff]

Just stop taking the TKI
Wait untill your white blood reaches over 40k then you will know. Normall people without CML show positive PCR.