CML Mariner's Queries

What questions to ask the doctor on FISH ?

One of the important questions to be asked about FISH is what FISH probe was used for the test and I'll explain why.

FISH tests can give false positives like you may be negative by FISH but the test shows a positive value. Different FISH probes give different false positive percentages so you need to know the kind of probe used.

Usually, nowadays, double fusion probes are used where the BCR-ABL fusion nuclei is scored twice to eliminate the degree of false positivity. This is called D-FISH. This has a lab cut-off point around 1-2%. In our lab, it is 1%, other labs may have different values. Any value above the cut-off point is a positive value and below the cut-off point is negative.

FISH tests using the single fusion probe (S-FISH) has a higher rate of false positivity. This can be around 7-10%. So, if S-FISH was used and the result is say 8%Ph and the lab cut-off point is 10%, actually that is a negative FISH result.

There is also the ES-FISH which also has a 1-2% lab cut-off point.

You need to ask also how many cells were looked at, the standard is 200 interphase cells. Cytogenetics will look at metaphase cells which are dividing cells and only at standard 20 cells since the technique is laborious. That is why FISH is more sensitive as it looks at more cells. Our lab does 1000 cell FISH but most do 200-500 cells. As you travel along your CML voyage and you may want to know more about testing, see the following article I wrote on testing.

Bear in mind that the Head of the Cytogenetics Lab is the best person to know the cut-off point for FISH probes in that particular lab if it is not already printed on your report. Hope this helps. Wishing you wonderful results on your FISH test!!

Kind Regards,
Anjana

Are puffy eyes and cheeks common with glivec ?

My husband has puffy eyes and puffy cheeks. Our doctor says that it is due to a Gleevec side-effect, periorbital edema for the eyes (edema being fluid retention.)

You can read about fluid retention in Dr. Druker's article, "Practical management of Patients with CML Receiving Imatinib" which is in Jennifer's medical file archives in her site, www.cmlsupport.com. There is a section on Edema and Fluid retention.  Since not all patients get this side-effect, the doctors cannot really pinpoint the cause of the edema.

Kind Regards,
Anjana

Looks like I am FISH negative, so what's next to look out for?

So, you are zero and in complete cytogenetic remission by FISH.(CCR)

Karyotype is another word for chromosome analysis and this test counts the chromosomes as well as documents structural changes in them.  In a FISH test, normal cells should only show the green and red signals due to the normal BCR and ABL genes whereas an abnormal cell should show the yellow fused gene signal.  Your karyotype shows only normal BCR and ABL genes, if you had a fused gene, it would have read BCRconABL.  You can look this up if you wish at the Vysis website.  http://www.vysis.com

Minimal residual disease (MRD)usually refers to a time when a patient is negative by FISH and cytogenetics.  That does not mean that there is no disease in the body.  It means the sensitivity of the FISH and cyto technique can no longer detect this disease.  This is when doctors advise monitoring by the PCR technique which can detect 1 bad cell out of up to 1 million good cells and is a much much more sensitive technique than FISH.  So, MRD is monitored by
PCR, usually quantitative PCR which will give a value for the low level of disease in the body.  When one is negative by this PCR technique, the patient is said to have reached molecular remission or MR.

  However, at this point in time, you are negative by FISH and I would celebrate if I were you!!  Increase in dosages have to be discussed in detail with your treating physician.  I can only relate my husband's experience.  He achieved FISH negative in 6 months like you on a 400mg dose and he is still on that dose.  Our doctor advises a BMA every 6 months and you may want to discuss the frequency of BMA's with your treating physician.  In a recent article, Dr. Druker, a CML expert, recommended routine BMA monitoring. 

Warm Regards,
Anjana


How does one deal with puffy eyes ?

Regarding remedies, I am quoting from the Druker article, "Some patients have found that limiting salt intake may help to control periorbital edema, and in some patients, there have been reports that topical phenylephrine 0.25% may be beneficial. In severe cases, diuretics may be indicated."

My husband does not take any remedy since his puffiness comes and goes. If your symptoms do not go away or become very severe, you may want to consult your treating physician. Everyone is different and the level of their Gleevec side-effects is different. Your doctor will prescribe the medicine that is right for you if symptoms persist.

Kind Regards,
Anjana

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