Findings presented in an OncLive® interview with Michael R. Grunwald, MD.
Findings from the real-world, observational REVEAL study (NCT02252159) presented at the 2024 EHA Congress showed that at a median follow-up of 3.7 years, 6.7% of evaluable patients with PV (n = 2023) progressed to myelofibrosis.
A univariate analysis of patients with vs without progression demonstrated that significant covariates associated with progression included disease duration, history of thrombosis, white blood cell count, hematocrit level, and variant allele frequency.
The Mayo Clinic doctor I saw by video twice early on in my diagnosis of PV had me do extra blood draws for further genetic tests, which he said indicated that I was less likely to progress in the disease to MF, etc. I don't know how hard it is to get these genetic tests done/approved, or how widely accepted they are, but evidently this is another PV to MF indicator one could use.
The HCT factor in the study above really puzzled me, and I did not really get their explanation as to why lower HCT would indicate more likelihood to progress! Sounds backward. It would also be interesting to get the study's precise number for white blood cell count and allele frequency--how high is too high in this study?
Very interesting to see the emerging data on progression. The HCT finding seemed a bit counterintuitive. As I understand it, they think it is an artifact of the study rather than a predictive factor.
An interesting observational study! Thank you for posting - your effort in finding and sharing this type of information is always very much appreciated.
Thanks so much, Hunter. I have PV which was diagnosed after I'd experienced a blood clot and heart attack at 57 (had a stent fitted), most likely caused by PV which hadn't been diagnosed at that point. I'd had unbearable pruritus for a few months which in hindsight was a telltale sign. I am sure that others on the forum who have experienced thrombosis also regularly see a cardiologist, but that is key. I am extremely lucky to have a cardiologist and hematologist in the same health care system, so they see each other's notes and medications, and my cardiologist is completely focused on monitoring my blood pressure, cholesterol, and doing scans and tests to make sure my arteries remain clear. My hematologist is also very focused on my hematocrit levels and on preventing future thrombosis. In terms of another indicator in the report, I also had a high allele burden on diagnosis, which has been reduced from 60% to 25% on Jakafi/rux. My white blood cell count and hematocrit are low, due to Jakafi. I am feeling positive about my future by close attention to test results, and close collaboration between my two doctors. I feel lucky!
You are indeed fortunate as well as wise to ensure that you have close collaboration between the different members of your care team. This is essential in managing a chronic condition like a MPN. It sounds like you have an excellent treatment plan in place that will help to ensure the best chance for a positive outcome from treatment.
I think this is either a poor study or poorly reported. Stating that at 3.7 years 6.7% of patients progressed from PV to MF is fairly meaningless and misleading because what it doesn’t say in that sentence and is not explained until reading the full paper is that it’s NOT 3.7 years from diagnosis of PV , it’s 3.7 years of the study not from diagnosis, so some of the patients could have had PV for 20 plus years or even 30. It’s also lists one of the other risk factors for progression is Hct of less than 45 , that is also meaningless and misleading , we all aim to keep Hct under 45 to avoid thrombosis and that’s a good thing, sure if a PV patient has Hct falling for no good reason it’s a risk but it doesn’t explain that.
I state the above because the headline there is likely to scare many PV patients reading unless they dig in to the detail and the detail is not well reported in the article.
Nothing personal Hunter but I don’t like to see people worried unnecessarily
I should have added that historically the conversion rate for conversion from PV to MF for PV from diagnosis is something like 10% at 10 years and 20% at 20 years. I suspect these numbers are probably better now as treatments (eg Rux. ) have improved.
Hi Hunter! My haematologist wanted me to have a new biopsy before we changed to Besremi so I am expecting the results mid October. I have terrible fatigue quite some time now, and only feel better when I am in bed. The exams are fine but why do I feel this terrible! I also got covid for the first time which makes me not wanting food at all. How are you? My haem spoke enthusiastically about Besremi but I am waiting for the results.
Sorry to hear about the COVID. Long-term impact can include increased fatigue for some. It took me about 3 months for energy levels to restore to normal. I hope you find Besremi to be as favorable as I have. My quality of life has improved significantly since I have been on it. Fatigue, memory/concentration improved when I was able to let my iron levels restore to a more normal level.
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