Addendum to previous post FISH Test: Sorry I did... - CLL Support

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Addendum to previous post FISH Test

10 months ago•2 Replies

Sorry I did not make clear my question in my previous post because it was late and I was ready to doze off! Lol My question is being my husband had poor prognosis results from his FISH testing as it also relates to response to treatment, shouldn't this be considered an important issue to be discussed with us instead of saying "we don't apply or use that any longer with "watch and wait" so we don't go over the results with you". Is this common or are the results commonly shared and reviewed with most patients ? Thank you

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Debcap61

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lankisterguyVolunteer10 months ago

Hi Debcap61,

I'm sorry for your sudden and devastating loss.

I received the same FISH and Unmutated results as your dear departed husband, when I was diagnosed in 2008. I also had a doctor that was extremely poor at communicating and dismissed all my questions. In those days there were very few treatment options and the significance of being Unmutated was not understood or widely accepted.

In the 15 years since, the science has advanced dramatically, with ~9 different non chemo targeted treatments approved since 2013 and a clear understanding that Unmutated patients usually need treatment sooner and more often.

However what has not changed is the understanding that early treatment does not improve survival, but all CLL patients are immune compromised. Infections, especially many different forms of pneumonia (bacterial, viral and fungal), sepsis and heart complications are far more likely to cause a sudden fatal event than the CLL.

So like me, your husband's Tri 12 FISH results meant he was intermediate risk of CLL progression. The Unmutated raised the progression risk somewhat, but would not have changed the treatment choices or indicate that early cancer treatment would have saved him.

IMO (I am not medically trained) the combination of COVID, sepsis and heart issues should have been identified as needing serious attention. Treatment with Paxlovid for the COVID, treatment of the sepsis with serious antibiotics and treatment of his heart should have been all considered, since his unfortunate result occurs for us CLL patients far more often than people with normal immune systems.

Again, I am sorry for your loss.

Len

Skyshark10 months ago

Very sorry to hear about your loss.

FISH/NGS markers are really only of interest when the time comes for selecting treatment. The key marker for that and poor prognosis is TP53 which your husband didn't have. IgHV unmutated would indicate that progression could be expected. Treatment would have been needed at some future time when symptoms reached the criteria for treatment.

CLL is chronic and slow. The saying is you die with it and not from it. But as Len says it makes small illnesses more severe and severe illnesses are critical.