HI I am rather shell shocked after having had a real charade finding out my recent VAFF results I wont go into this as it has been painful with tests going missing, and then earlier my local specialist only having half the story on the results which she shared with me, but wasn't sure quite whether they were correct or not!!
Anyway after all of this, the specialist in my local team has advised that the VAFF reading is 77% JAK2, which I fear is rather high. I know that this may always have been the case but 7 years in, I pushed for this test to be done. It is not routine in UK you see.
I still have v little info other than it's not necessarily linked to partic outcomes, progressions or symptoms but obviously common sense says that this is not necc 'good news' and I have read recently that more than 50% result, gives more likely indicators of progressions and risk of thrombotic events etc.
I am due to go on a long awaited holiday this weekend, which is abroad, with people I don't know that well, and so I am annoyed that this has now been sprung on me right at this moment, when I had my initial sample taken at the start of July. My head is spinning trying to digest the info and what the implications may be.
After 7 years aspirin only, I had already started to feel that it was time to start taking meds such as INTF, and this may now give more weight to that decision to do so of course - I hear that meds can often be successful in bringing the allele burden down.
I feel sick with the confusion of it all tbh, esp as at the start of the appt it was looking so positive in outlook, my whites and reds stable, and the platelets at around mid 700s lower than they were only 6 months or so ago, they were then around 1500 mark. I also have had results of bone marrow biopsy, which showed no signs of MF or other disease progression, only what is already expected with having had the PV.
I hope that this message is not too garbled, I am in a state of confusion, and don't know where to turn for further advise especially as we are entering into the weekend - so of course, your shares and input are really valuable at this time.
Sending each and every one of you healing vibes and love on this roller coaster ride.
Thanks, Sarah
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Roxanne22
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I would focus on the positive, your BMB indicates no progression and your counts are fine, that’s the definitive important measurements of where your PV is. Although it might seem lower AB might be better , many experts will say they still don’t know how important it is. You plan to try the interferons and that seems a good idea and in many cases can lower AB if that’s one of your goals. Try to enjoy your time and not waste valuable life time worrying , your going to try inf and that’s all you can do for now , ie your doing all you can so put it aside and life life instead of worrying, I know it’s easier said than done sometimes but we have to try.
Thanks Ainslie it is so valuable to have your measured advice. It may even be that my AB has always been that high, or perhaps even higher at times, as this is the first time its been measured then I don't have a marker - it's another layer of a reminder I guess, I have been doing so well to adapt to healthier diet, supplements, healing practices etc etc but have carried on working in a stressful environment - so my feeling is its time to have a rethink about ALL aspects of my environment and of course give the INF a go! I recognise that although I feel 'different' and more compromised today after having been given a 'number', as it were I can't let the fear of this and how my rational mind is attempting to compute it, overwhelm the many positive aspects of my current point in the journey, as you have wisely reflected back at me. I wish you a wonderful weekend and thank you for taking the time to reply to me. Best wishes Sarah
Your confusion and concern about the meaning of the VAF finding is understandable. The understanding of the significance of VAF is an emerging area in the MPN world. There is some very good information about VAF in the literature that you can access when you are ready to digest it. In the meantime, suggest that you focus on some of the other concerns with managing the MPN. It is particularly important to go about your life living life to its fullest. I have found that focussing on quality of life as my primary treatment goal is the best approach.
It sounds like your quality of life is good. That is a successful outcome when managing a MPN. Suggest you go on your holiday and have a great time. You can start to sort out next steps when you get back. You have plenty of time to evaluate your status and make treatment decisions.
Considering an interferon as a potential treatment option would be reasonable. It is the decision I made. My quality of life on the interferons (Pegasys then Besremi) has improved. I am maintaining a hematologic response. My JAK2 VAF has reduced from 38% to 10%. The side effects have been less then either hydroxyurea or venesections.
It is your prerogative to decide to use VAF as a biomarker in monitoring your response to treatment. The MPN field is moving in that direction. Some of us are already working with our MPN care teams to do precisely that. The thing to understand is that while many would agree that a lower VAF is a good thing, we cannot prove how good it is at this point in time. We need more data.
Thanks Hunter, I really do appreciate your advice and insight and your feedback is so welcome. One thing for sure, if I was on the fence about taking meds, then this layer of information has persuaded me that this is now the time to take that step. Living in the present and enjoying life is the best medicine for us all even those who are not knowingly living with a chronic illness. As today goes on I am feeling more balanced about this recent discovery along the way. By the time we have more data and research findings all being well, the VAF count will have hopefully modified as part of the treatment. We are all so individual, and it would appear that despite the numbers in the AB being currently on the high side, in other ways I have been managing well and so long may this continue. it is most encouraging at least that there are treatments that are highly likely to help me at this stage, and quite likely add to my wellbeing status on the whole. That is something to embrace over the winter season! Hunter - Wishing you, and each of us, a wonderful weekend, and to all stay positive, remaining strong whilst more opportunities unfold for us, thanks Sarah
I must agree with all of the above- live your life to the fullest!
Take the necessary precautions against thrombosis as recommended by your MD's [hopefully including enteric-coated aspirin, vascular compression stockings, and maintaining a really good hydration status] and be sure to have an excellent holiday.
When you are ready to think more about this issues there is this reference re: your VAF concerns:
"Significance of changes in VAF measurements
A 2010 study estimated that in the first 12 years of disease, VAF increases by 1.4% and 1.5% per year in male and female patients with MPNs, respectively. These data were corroborated in the 5-year analysis of the PROUD-PV and CONTINUATION-PV Studies in patients with PV, which also showed in an increase in the VAF of 1.3% per year in the control arm. Although the full significance of decreasing VAF in patients with MPNs is still under investigation, studies have shown positive correlations among lower JAK2 V617F VAF and clinical outcomes.
In patients with MPNs, a JAK2 V617F VAF of ⩾50% was associated with a higher risk of venous thrombosis, but not arterial thrombosis. Allele burden may also influence disease progression. In a 2014 study, the incidence rate of MF was significantly higher in patients with high or unsteady JAK2 V617F VAF compared with those patients having low VAF (2.8 versus 0.1 cases of MF/100 person-years; p < 0.001).
High JAK2 V617F VAF has also been shown to correlate with higher hematocrit, higher WBC counts, a high number of circulating CD34+ cells, increased bone marrow cellularity, lower platelet counts, lower mean cell volume, splenomegaly, pruritus, and the need for cytoreductive therapy.
Although the JAK2 V617F VAF has been associated with significant negative outcomes, contemporary management of MPNs is still mainly focused on the normalization of peripheral blood cell counts.
Monitoring and modulating allele burden in addition to blood counts may more effectively address the risks of MPNs. A study evaluating clinical and molecular factors associated with long-term CHR found that approximately 30% of patients were able to discontinue interferon therapy due to prolonged CHR.
In a multivariate logistic regression analysis, VAF ⩾ 10% at the time of interferon discontinuation was associated with lower long-term CHR without cytoreductive therapy [odds ratio (OR) 0.26, 95% CI: 0.1–0.65, p = 0.004]. For patients achieving CHR and discontinuing interferon therapy compared with patients achieving CHR and remaining on therapy, OS [hazard ratio (HR) 0.23, 95% CI: 0.5,1.14, p = 0.07] and event-free survival (HR 0.53, 95% CI: 0.19–1.45, p = 0.217) were not significantly different.
Hope the holiday gives you relaxation and headspace and you come back from it feeling refreshed and ready to go with whatever you and your haematologist think are the next best steps.
Thanks for your support, yes it's certainly time to reflect and it has made my decision to take the medication now. I have resisted for a while, and so I am optimistic at least that actually there may be benefits also to be gained. It's going to help with my perspective to feel refreshed. Thank you and enjoy the rest of your weekend RoundtheWorld. Sarah
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