Although today the importance of IGHV mutational status is not a secret, it was a very quiet part of the discussion until the recent 24 months.
I believe that this is the beginning of a paradigm shift in CLL treatment ideology, I have been patiently awaiting this news. I am excited in the hope that with the latest trial data coming into view, that the disease staging protocol "watch and wait" will be replaced with "why wait? eliminate". Rather than people diagnosed with high risk CLL having to struggle with the impact of physical and mental digression facing a slow indignant financial strangle. They may now be offered the hope of overcoming the disease early and getting on with a productive life.
When I was diagnosed in 2015 much of the oncology communities top level investigators would only discuss IGHV in brief. The conversation was a mere statement of what mutational status was, and that those who were unmutated expressed poorer outcomes when treated with FCR. There was no conversation as to how to address it, much like what we still see with Richter’s transformation.
In my observations of those at the top level, Dr. John Byrd and Dr. Jeff Sharman were the first and only ones in this early era to openly address the importance of IGHV beyond the generic clinical conversation. Being unmutated and having been given the poorer prognosis, I remember it well when Dr. Sharman stated in a 2018 interview that treating those with unmutated IGHV or 17p with FCR "is wrong". At that time, it was a bold thing to say such before colleagues, as it was not yet accepted by the status quo. A good number of the leading research investigators were still expressing skepticism about novel treatment and early data not providing enough history. Not long after watching the interview with Dr. Sharman my disease progressed, and I needed treatment. I decided to enrolled in a front-line trial that Dr. Sharman was overseeing. The trial was so successful that it gained FDA front line approval before completion.
With this trial in part came verification, that the addition of obinutuzumab prior to Venetoclax now reduced the risk of tumor lysis allowing the expediency of this powerful drug to be administered safely. Venetoclax had already proven efficacy.
Early in 2018 there was so much success being observed with all of the novel targeted therapies including 2nd generation small molecule advances that the majority of top investigators could not avoid agreeing that patients having 17p or unmutated IGHV should not be treated with FCR.
For now, I hope that the Covid19 challenge would end so that the CLL research dynamic can be restored.
Thanks, JM, for an interesting post/reply. We, indeed, are fortunate to have the likes of Drs Byrd and Sharman in the field of Oncology and Haematology and we will be eternally grateful.
When my wife and I see the advances made in the last few years it does make for a more optimistic future.
When she was diagnosed in Spain, back in 2009, we were given favourable markers, however this was tempered with the discovery that some of these markers could reverse later in the condition (I'm quite amazed that some diagnosed in the UK have not even had a FISH test and have limited knowledge of their prognosis).
So a further test of IGHV status would at least give us an indication of what to expect with regard to treatment, etc. However, it's an expensive test we're told, so we must wait until the need for treatment arrives. We are presuming/hoping that the length of wait so far could mean she has mutated IGHV.
Agree also with the halt to the research dynamic. Let's hope that some of the Covid research in the immune-system can flow over into CLL.
I understand your trial, JM, was due to complete January this year? I do hope all is well and that you are a successful outcome.
I completed the trial on December 12, 2019, and my bone marrow showed UMRD in August 2019 and again on March 4, 2020. I believe that I am doing very well, and I am scheduled for a follow up in September.
My FISH was taken from a bone marrow/aspirate in 2015, and it costed $12,000 which included the IGHV status. The cost of IGHV status was not itemized on the bill, nor could anyone explain the individual cost to me. Even though all information sources and commentaries that I have located refer to the cost of IGHV testing as expensive and from experience I am sure it is. to this day I have not been able to verify a cost by any source.
Initially I received my bill as a surprise! I was not asked if I wanted the procedure or informed of what is was for before, during, or after. The biopsy was done at what was suppose to be an informative visit, instead I was escorted into a procedure room, biopsied, released, and eventually provided a bill/confusing lab report which I learned to read and understand on my own. Outcome = New Doctor.
The insurance company did eventually cover the entire cost due the fact that I did not approve it. My thought is that insurance should cover IGHV testing now that we have learned the importance of the test with regard to choosing treatment. Yet, It is a given that any insurance will not cover costs for undefined importances or undefined costs.
With the latest data stating the importance of IGHV testing combined with a numeric value for the test, maybe we can hope that in the near future that it will be both required and covered by insurance.
I hope that your wife's disease is the most indolent, and that when she reaches treatment, that the treatment is inexpensive, effective, and well tolerated.
Very pleased to hear that you are UMRD, JM, and that you are doing very well.
I'm quite surprised at the costs you mentioned. It appears that without health insurance one can be in a very bad place indeed. Even so, insurance will not cover certain things. Isn't that true the world over.
On initial diagnosis, in Spain, my wife had a CBC and FISH, from blood, at the same time. Under the reciprocal health arrangements between UK National Heath Service and the Spanish Department of Health, we didn't have to pay. In Spain the FISH is standard procedure, but not in the UK apparently. Whether the Spaniards would, in 2020, conduct an IGHV test as routine would be interesting.
We'll certainly be looking at how the IGHV situation develops.
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