TP53 Testing

[EastBayDad]

Good afternoon. My oncologist called me last month to tell me that my FISH test indicated that I had Trisomy 12. He went on to say “You should feel lucky that you don’t have TP53.” I watched this excellent video yesterday. The doctors discussed the importance of having the separate TP53 test with FISH, Flow and IGHV. Did your CLL specialist do this test when they did the other tests? Has anybody been negative for 17 on FISH and positive for TP53 on that separate test?

m.youtube.com/live/ep_lrYdn...

[Skyshark]

TP53 is mutation within a chromosome, this requires NGS test. FISH is for 17p and other chromosomes like Trisomy 12+.

Yes it is possible to have 17p deletion and TP53 mutation separately although it's a minority.

[wellbeingwarrior]

I have never had a FISH (it is only done in NZ when facing treatment) only a Flow, and IGHV testing was sent off to Australia (as we don't have that testing available in NZ).

The results came back as IGHV inclusive (so I'm none the wiser about that) but TP53 negative (when I didn't even know they'd be testing for that).

That's all I have to offer. 😎

[AussieNeil Administrator in reply to wellbeingwarrior]

It's not usual to do FISH testing in countries with universal health care systems (that's most countries), because FISH results are used to influence the treatment decision and they can change over time. In fact, the only prognostic CLL test that is highly unlikely to change is IGHV mutation status. So while prognostic testing is sometimes essential to know for us in informing our future planning, it's seen as a nice to know by clinicians.

Neil

[wellbeingwarrior in reply to AussieNeil]

I'm totally Ok with that, now that I get the purpose of FISH, and that results can change over time anyway - I don't feel robbed over not having one.

I was most curious about my IGHV status. Another day - it will have it's day! Feels almost like a gender reveal thing but not quite... M or U .. oh the tension until it's revealed! lol

[EastBayDad in reply to AussieNeil]

Neil,

I was negative for 17 on my FISH and was excited because I thought it meant I didn’t have 17 OR 53. I just learned today that you aren’t negative for 53 unless you have the specific 53 test. This was distressing news.

Best,

East Bay Dad

[That1Guy]

This is how it showed up on my FISH. I was under the impression that they were related.

TP53 FISH

[EastBayDad]

Apparently, you can be 17 negative on FISH and TP53 positive on the TP53 assay.

[morepork]

Interesting comment from your oncologist that you were lucky not to have TP53 diagnosed- many of the old research papers on Google still see Fish test results showing TP53/17p deletion as meaning a BAD outcome. I had my FISH test here in NZ in about 1999 with those mutation results - but no treatment needed till the end of 2016, when I was lucky enough to get access to the new drug BTKI Ibrutinib, and I am currently carrying on on a 140mg 'maintenance' Ibrutinib dose all these years later. So much individual variation for us CLLers !

[Skyshark in reply to morepork]

The word the doctor was looking for is "fortunate".

Do you know your IgHV results? m-CLL with TP53/17p aberration is rare (2.5-6% at first treatment, 24-37% of TP53/17p) but these patients on novel drugs appear to do just as well as m-CLL without TP53/17p aberrations.

[morepork in reply to Skyshark]

No alas re IgHV results - some of my old paper records have been left behind over the years and moving houses.

[Kam73 in reply to morepork]

I also have the Del17p along with TP53. My oncologist told me my CLL could stay indolent for years or I could have a steady progression to treatment. From reading so many posts here I have come to the conclusion that CLL is different for all of us.

[morepork in reply to Kam73]

Yes, that 's how it seems.

[Peoniesandtulips]

Yes, I am one of those rare types! Mutated IGHV, 13q deleted, TP53 mutation. My 17p is normal. I really don't know what to make of it. Diagnosed early 2022, still W and W.

[IkebanaL]

was just in hospital for dangerously low sodium level.. had lots of attention. The on call hematologist ordered IGHV. Left hospital before she discussed results. In my appt with my hematologist I asked about results and he didn’t explain anything just with all my various test results I was medium risk?? It was a difficult appt.

I am 75 yr old woman, diagnosed in November after questioning my PCP for a year about massive amount of swollen lymph nodes. She finally ordered CBC and was devastated to realize indications were CLL.

I met with hematologist and was started on Calquence in January because I had also lost 45 lbs in 5 months and had debilitating fatigue. Was fine for several weeks but have several new sets of issues-sleeplessness, severe joint pain,problems with sodium. Etc basically told that most of problems had had nothing to do with Calquence and to see my other drs for them. Didn’t address joint pain.

Very disappointed since I initially had confidence in drs,, now not so sure. If my problems were not listed on list of Calquence side effects not their problem.

Sorry for rambling it has been a stressful week.

Bottom line what is “optimal risk”. And how do you put all the test results together to make sense of them.

Thanks so much for this forum.