Hi Everyone,
Does anyone else have a diagnosis of PV + early Mylofibrosis intermediate 1 with focal grade 2 or similar but normal blood test results?
I am starting on interferon soon and I’ve been told I’ll need another BMB in a few months to see how it’s working as we won’t be able to tell from my bloods.
I just wondered why my bloods were normal. I’ve been told I’m iron deficient so I’m not sure if that has anything to do with it?
Does anyone know if this is common?
Thanks in advance!
What is the urgency to do BMB so often....?
There is no much change found in BM and it has bigger risk.
Just my opinion
I agree it seems having a BMB again so soon, but I don’t think there is much if any risk to having a BMB IF DONE CORRECTLY
I prefer just check the alele burden dan inflamation marker.
It is good enough to track the progress, without additional risk.
Even a good doctor could make mistake.
Sorry if I am wrong 🙏
Good idea! I will ask about this, thank you
I would agree with the others in that it seems much too soon to do a repeat BMB. This is not a standard practice in monitoring response to treatment. That is routinely done with peripheral blood tests, monitoring spleen size, and tracking symptom burden. Some of us also check the JAK2 VAF periodically, using it as a biomarker for disease status. While that is not currently standard practice, I would predict that it will be in a few years time.
The exception with repeating the BMB would be if there were inclusive results. It is worth noting that BMBs are done more frequently in MPN research to provide monitor and provide the best data.
Wishing you all the best.
Thank you so much for your reply Hunter,
I guess in my case it’s slightly different as it is thought my spleen is enlarged due to portal hypertension, I’ve been on beta blockers for this for 6 months and the size is reducing.
As my blood tests are always within normal range I guess it will be hard for them to use these to track the progress.
So that only leaves the JAk 2 VAF to monitor the progress.
I’m not adverse to having another BMB as by the time I have it, it will be around 16-18 months from my first one.
I just think it’s very odd that I have normal blood test results, have you ever heard of anyone else with normal results with PV +MF or any other MPN?
Thank you for the clarification. A repeat BMB in the 16-18 month range seems reasonable if there is a suspicion of a change in disease status.
Being very low in iron would lower HCT. That is why phlebotomies are used to treat PV.
It could be that you are in a transitional stage of the MPN where blood cell numbers could vary. I would not want to guess at what is going on. In light of the complicating conditions(s), being certain of your status is all the more important. Given the complexity of your case, MPN Specialist input is also all the more important.
Wishing you success moving forward.
Thank you Hunter, I will chase up my mom specialist appointment on Monday
I don’t think that is correct, any expert Haem will tell you that a BMB is the only way to really check what is going on. BMB is perfectly safe when done correctly which they usually are. AB might be an indicator but any decent Haem will tell you it’s not known yet what AB significance really is. Inflammation isn’t really an accurate marker , many without MPN can have high inflammation, hence someone with MPN with high inflammation may have that raised inflammation for non MPN reasons.
Hi William-indo, thank you for your reply.
I had my first BMB in March 2024 and as my bloods are always normal I have been told I’ll need another BMB in a few months time (after starting treatment) to see the effect of the treatment as they will not be able to see this from my blood test results.
I was just wondering if anyone else has PV+early MF with normal blood results and no need for phlebotomy etc.
It would be more informative if you included FBC results, along with iron tests. Are you having or had regular phlebotomies? If these have recently been halted, then that would be why you are having a BMB. Your iron deficiency could be due to a chronic bleed, or phlebotomies. Information is king!
Hi there,
Thanks for your reply.
I haven’t ever had a phlebotomy as all my blood tests are normal and always have been, even my red blood cells. That’s why I feel confused.. thanks 😊
Looking back on your posts, I'd suspect the PV thrombosis, possibly due to a COVID jab, may have then been misinterpreted as PV as in an MPN instead of the Portal Vein as in your case?If your blood tests have always been normal, I would suggest you go back to your GP or hematologist and just ask them what is going on.
When my wife was admitted, after a major GI bleed, a couple of months after her spleen ruptured and was removed. She then suffered a Portal Vein thrombosis, which has really altered her life. But she has Myelofibrosis, which manifests itself with very high platelet counts if not treated, and very high neutrophils too. Since she's been on Jakafi her counts have got so much better, and her dose is now a half of what she started with in September.
All the best.
Hi Jointpain,
I’m so sorry to hear about your wife, her experience must have been terrifying for both of you both. I m glad Jakafi is working . I too have suffered complications following my clots but I think we are getting to the bottom of them now. They discovered that I have portal hypertension which was increasing my spleen size. Since being on betablockers my spleen has shrunk from 19.5 - 17 in 6 months and my symptoms have reduced. I feel well now.
I hadn’t had a covid jab when I developed the clots and I hadn’t had Covid either so that rules that out but I guess it could have been unrelated.
I am waiting for an appointment at guys but it isn’t straight forward as I live in the Channel Islands so not covered under the nhs and I’ve been told guys only take nhs patients. I am trying to find a way around this but it’s time consuming.
My hematologist has been working with the team there and Dr Clare Harrison has reviewed my case and given her opinion, there is just a lot of red tape to navigate around if I want to see them in person.
We can't really understand why you are diagnosed with an MPN, but then we aren't doctors! My wife's portal hypertension is controlled using Carvedilol which is specific for this. Her platelet numbers were controlled with hydroxycarbamide and Anagrelide since 2018 until change over to Jakafi last September. Good luck with Guy's, and try and get a phone call appointment with the Professor Harrison, she should have you blood test results or access to them. My wife's Professor in charge is really good and phones up regularly, yet we've only seen him once, but he has access to all blood tests, or we tell him what they are. We might be seeing him in a couple of weeks as my wife is wanted at Christie's for an MRI. And he's arranged for it on a day he has a clinic.
May I ask what type of doctor diagnosed you? I had a PCP who made diagnosis errors before we really figured out what was wrong and before I saw a hematologist oncologist. This type of doctor specializes in this. Your doctor isn’t doing things the “typical” way. I would personally go see another doctor for a second opinion before another BMB.
hi, my husband is very similar! He has late stage PV /early stage MF with riticulin grade 2 in the marrow at 40 years old. His bloods suggest PV but they are pretty good - just biggish red counts and haematocrit though so has had to have venesections. He has enlarged spleen and fibrosis marrow. They’ve said it’s a transition stage - so perhaps you are in this stage too where they are currently looking normal? Does seem odd you have complete normal counts. Maybe your MF is just stable, which is good! The complexity of these diseases is so baffling and the fact everyone is different makes it even more difficult to comprehend! Hope you can seek a referral to an MPN specialist if you aren’t already with one locally. Wishing you well
Thank you MF wife, it is interesting to read your husbands experience as it sounds similar. I will chase up the mpn specialist on Monday.
Hi ,
My husband started off with PV after 4 years he progressed to post PV mf intermediate 1.
He's been on ruxolitnib since 2019 and his spleen has reduced down in size his bloods are all good .
If your bloods tests are all normal why would they need to start you on medication.
When my husband was diagnosed with PV he didn't have medication for two years he just had a venesection a pint of blood removed .
Tracey
Hi Tracey, thanks for your reply and for sharing your husbands story. I’m starting on medication because it can slow down progression of disease and my Jak 2 burden is 72
My husband's Alle burden was 63% when he was first diagnosed with PV 12.5 years ago .He's ruxolitnib is doing well it would be interesting to see what his Alle burden is now.
This is one of the questions he's going to ask next month when he speaks to his consultant.
We thought about paying private for this blood test as his consultant always said in previous years you don't need to know the Alle burden percentage .
I will say this hasn't stopped my husband living a normal healthy life he works full time and we go on holiday etc .
He likes a drink but in moderation .
Tracey
Spleen slightly enlarged on the upper side of normal. UPDATE on results.
E.T. and Headaches.
platelets are in normal range
starting hydroxy as pathway to Rux
nucleated red blood cells 
