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Great interview with Dr. Furman of Cornell. ... - CLL Support
Great interview with Dr. Furman of Cornell. Important discussion of new treatments verse FCR. Very positive for all of us.
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Hoffy
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Thanks Holly, very encouraging discussions! I am 13q but my bro-in-law is 17p del. Dr. Firman seemed to be saying the longer a patient does well on ibrutinib the better the chances he will continue to do well.
Great information. Thanks.
Distressing for me because Fuhrman included Notch 1 in with 17P - which I had never heard before. More questions for my oncologist...
Notch 1 is a new prognostic marker. I wouldn't be too distressed. It won't change much right now.
Treatment would still be ibrutinib or venetoclax in a trial.
Jeff
NOTCH 1 isn't yet a tested prognostic marker in the clinic, but there are indications that it confers higher risk of Richter's transformations in Trisomy 12 patients... similar to c-MYC which isn't tested for either...
Dr. Sharman has written about these in the past...
cll-nhl.com/2013/02/cll-pro...
Was it Dr Byrd or Dr Kipps who was involved in its discovery? I think it's Dr Kipps. Notch -1 I'm referring to.
Davide Rossi and the Italian CLL Group
I had asked my oncologist about Notch 1 and Richters. He said part of the problem was that the Notch 1 people in the statistics who transformed had multiple treatments over time and that those treatments may have had more of an effect than the Notch 1. He said that in general I am high risk but not highest risk. Cold comfort.
Virginia
My only comfort having read Dr. Sharman's report is that it was 4 years ago...
They are looking at CDKN2A now and apparently in the lab the Mayo docs think Richter's can be predicted by telomere length. Years away from the clinic ...if ever.
There hasn't been much pure research on RT published in the last few years, the focus has shifted to new RT treatments, since patients are living longer, RT becomes a greater risk...
link.springer.com/article/1...
~chris
It would be interesting to see prior treatment info on Richter's patients.
The Jain, O'Brien study found that 40% of Richter's occurs prior to treatment and 60% during or post treatment. Their data was from many clinical trials but in the era of FCR.
New data on the Imbruvica (ibrutinib) failures, posted here last week, suggests about a 10% transformation rate, so it would appear that the rate is up a bit in the small molecule age, but this could be explained by patients living longer...
The Mayo study has clearly shown, that the length of time from diagnosis increases the risk of Richter's, so age plays a role.
~chris
It's certainly my nightmare!
My husband is also Notch 1 +. From reading the research and talking with Dr Byrd, Notch 1 gives no additional information other that your IVGH is unmutated.
Hi ikahan, I am trying to test my Notch 1, cannot find a doctor/place who does it. Have scheduled an appt. with dr.Byrd and office told me t hat they do not test for Notch. Do u mind sharing where you did your test and who ordered it? Thanks
Murzik
The problem with NOTCH1 testing is it currently has no clinical impact. It does not guide treatment or treatment choices.
So...
You probably will have to get private lab testing for NOTCH1 ...a number of companies do it.
Cancer Genetics Inc. does it for many clinical trials in the U.S.... as well as many other forms of advanced testing.
cancergenetics.com/laborato...
NOTCH 1 according to the leading Richter's expert from MDAnderson, Dr. Jain..stated
A study in the British Journal of Haematology in 2012 investigated the risk associated with NOTCH1 mutations in pateints with CLL. They found that patients with a NOTCH1 mutation have a 20% to 30% risk of Richter syndrome, compared with a 5% risk in patients without the NOTCH1 mutation.
Dr. Jain
hematologyandoncology.net/a...
Rossi et al BJH 2012
onlinelibrary.wiley.com/doi...
~chris
Am I taking this the wrong way? Isn't the interviewer in essence suggesting that FCR is in fact a very potent CLL strategy ? Where as Dr. Furman is taking the opposite view and basically discrediting the use of Chemo? Where the whole interview leaves me scratching my head ,is the perspective that FCR causes some harsh side effects according to the interviewee,therefore it breaks with the doctor's notion that a remedy should never"CAUSE NO HARM!" But based on all the comments I see on five CLL sites suggesting that a sizable portion of those people on CLL do have side effects to the point where they stop using Ibrutinib.....isn't it kind of a fact that both remedies may cause some side effects in certain patients? Or am I not getting this right?
Ibruvica has side effects but most are not permanent. If you get off it due to side effects then you can try other drugs without look term issues.
With FCR from what I understand it does permanent damage to the bone marrow.
That is why he says to "do no harm"
cllady01Former Volunteer
Am I wrong in thinking Afib caused by Ibrutinib is permanent?
I had prexisting A.fib due to doxorubicin damage.. and it got worse on Imbruvica (ibrutinib). When I stopped the drug, due to bleeding, the A.fib lessened, but it has never returned to pretreatment levels... so Imbruvica (ibrutinib) in my case, had a minor permanent impact...
My bleed issue did stop after a period of about two months.
Currently on idelalisib and only issue has been diarrhea that waxes and wains...
~chris
It can be treated I am told or if you stop the drug it will go away. It is permanent if one dies from it .... this would apply to bleeding as well.
