Hi everybody. I respect your knowledge so much I would appreciate advise. My Fish test came out negative after only 3 mos of đź‘Ť Sprycel. I saw my Doctor today and found this out. She says I am in Remission and that I will stay on the 60 mg for minimal of 5 years and then maybe come off of it. I questioned her three times about the PCR test. She continues to state it is not necessary that the Fish is the same.I understand that the PCR picks up minimal disease and is more accurate. Has anyone else had this issue? I am looking for a CML spec. In south Florida but have not found one yet. Any advise and thoughts appreciated. Thanks Dawn
You are here
Fish suggests remission
Categories:
Dawn, did your doc say if PCR would be done at your six month check? She isn't following NCCN guidelines for monitoring by not doing it at three months. Did you get a copy of your pathology test reports? If not, you can ask for them and they must give them to you. I find the reports to be interesting.
Here's a snippet of my PCR report:
Hi RC thank you for reply. No she is not doing PCR and this is concerning. Thanks for your reply. She is not following guidelines:(
If your doc doesn't do a PCR test, you won't know what your molecular response is. Since you've had a complete cytogenetic response (CCyR), a major molecular response (MMR) is the next goal of therapy.
This is really simple. If your doctor won't do a PCR test, you need to find a new doctor. By refusing to order one they are displaying their incompetence in their management of this particular disease.
David
Hello Dawn. Your FISH result sounds very encouraging. I will get my 12-week result tomorrow for FISH and PCR. I will have waited six weeks for the result. My haematologist did show me the computer slide which is used as the best practice in Europe and that indicates that FISH and PCR are undertaken at three months (or twelve weeks).
https://www.leukemia-net.org/content/leukemias/cml/recommendations/e8078...
Dawn, you may have already thought of this. Maybe the LLS could help. If you were to call and speak with an advisor to explain your situation, hopefully they could help you narrow your search for a competent doctor in your area.
Here's the LLS info: "Feel free to reach out to an LLS Information Specialist with questions or concerns; call 800-955-4572 9am to 9pm Eastern Time, Monday to Friday."
Good luck!
Kirk
FISH and PCR are very different tests. FISH looks at cells under the microscope and is very prognostic regarding disease progression potential.
Achieving FISH = zero in 3 months is excellent and you are doing very well. Chances of you progressing to advanced disease is near zero. Your doctor is correct when she says you are in remission. But she is not correct when she says you do not need PCR testing. If she does not know what PCR is or why you need it - get a new doctor.
PCR is a molecular test and is exquisitely sensitive to the protein that CML cells make. Just a little bit and this test can detect it. It is the "canary" in the mineshaft for CML. People without CML will not have this protein and that is why - even though you are FISH negative, you are very likely PCR positive.
You should have PCR tests taken every six months in order to track the depth of your TKI response. At FISH just becoming zero, you PCR is around 0.1 to 1.0% (rough equivalence). Over time your PCR should continue to fall another log or two. An ideal level is anything below 0.01%. At this level, the amount of CML cells active in your body is very very low.
I am not doing quite as well as you, Dawn. At 12 weeks, my FISH is 17% against a requirement of less than 35%.
My PCR is 15% against a target of less than 10%. But my consultant is unconcerned telling me that "FISH trumps PCR at this stage".
On imatinib, I have no side effects but I have gained some weight and I have lost some energy.