People with PV/ET regularly (e.g., per month) test their blood to keep track of cell counts and other things. How about bone marrow biopsy (BMB)?
Are there repeats of BMB test to check changes after the first one that was performed to detect any mutation like JK2 ? If yes, how the results are quantified in numbers? How often or how long after the first test, the BMB test is repeated? Is this a reliable way to check the effect of Pegylated interferon alfa-2a (Pegasys)?
Thanks and take care of yourself!
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samiris
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Good questions - following this thread....I havent had a BMB yet, but curious to know what it would take at this point for my hem to order one for me? I know after 1 year from the original PV diagnosis he wants to re-check my JAK2 allele burden just to see if the pegasys is knocking it down at all.
I have JAK2+ PV, confirmed by a blood test - never had a BMB done, so can't help there, nor am I on any medication, just the venesections. Bloods are checked every two months.
I had a BMB nineteen years ago to confirm my ET diagnosis. Then I had one a few weeks ago to confirm my progression to MF. I don't think it's common to do them regularly.
Some UK patients have them to aid diagnosis but it's not standard. A repeat test is often completed if there is concern of progression so this can be a few years, a few decades or ideally never completed.
I was diagnosed with ET Jak2, but never had a BMB. My Heam has just asked me to consent to one as my platelets have gone up from 450 to 790 over the course of the last year, and although I have been on 135mg Pegasys every week it doesn’t seem to be having any effect on my platlets whatsoever.
I was originally on normal Interferon last year which worked for about 4 months then platelets started to rise again. Changed to Pegasys this January at 135mg to try and stop the rise but it has just continued.
I had my first BMB in 2008 where it was confirmed I had ET Jak 2 positive. I didn’t have another one until last year when I changed to a new hematologist who confirmed my suspicions that I had progressed to MF. She referred me to a transplant specialist who suggested yearly BMBs but my numbers stabilized and my hematologist told me I didn’t need another one yet. 😊 I’m just going to continue treatment and see what happens.
Hi, so around 2018 started feeling more fatigued than usual and my platelets were rising and my hemoglobin was dropping and he told me I had developed anemia. But he couldn't seem to figure out what to do. I asked him if he thought I had progressed and he said no. By 2019, I could barely get through the day without having to rest several times during the day. I asked him about getting a second BMB but again, he said I didn't need one. So, because of the support on this site, I found the nerve to get a second opinion from an MPN specialist. I brought her my original diagnosis of ET from 2008 and the last 6 months of medical records. My BMB showed my hemoglobin to be at 8.9. She also ordered tons of blood work with tests I never heard of like my LDH levels which were extremely high. Through all that, she diagnosed me with MF but she is unsure of how long I've had it. The transplant specialist said it was classified as Intermediate one. I'm actually seeing my hematologist today for my bi-monthly follow-up.
I hope I wasn't too wordy and that I helped answer your question.
Very helpful - and so sorry to hear that. I guess at times we think are being treated with the best docs, but to go ignored like that ... glad you got the second opinion. Hope todays check in brings you good news.
I had my BMB two years ago to confirm diagnosis. ( This is standard practice in Germany) It took 3 weeks as my sample was sent to a specialist centre and they in turn confirmed the diagnosis independent of my haematologist. Not sure how frequently they do BMB here in Germany I guess it depends on symptoms or blood readings. My bloods are done regularly snd always at the same time as my haematologist appointment. I get the basic readings in minutes. Spleen measurement by ultrasound are every 6 months. I always manage to get haematologist appointments and have even been seen on the same day as calling if l have ever felt unwell and wanted a consult. Services here are not hospital based. You only go to hospital as a patient or for A&E . But it is an interesting question re frequency or criteria for the BMB and good to compare our service provision experiences and seek best practice
I had one to confirm diagnosis and one to check progression years later. I strongly suggest you get a first one done, years later you will be happy you did, when they are looking at progression, it only helps you.
BMB is not required to determine the diagnosis of ET or PV for many people. Some docs do them routinely at the outset. Others do not. JAK2 mutation testing can be done with blood so a BMB is not required. Most docs would not repeat a BMB unless there was a reason to do so such as a change in disease status. The effect of PEG-IFN can be monitored with blood word, CBC, JAK2 mutant Allele Burden, etc. You also would be tracking the secondary symptoms like fatigue, pruritis, etc. The status of fibrosis does require a BMB.
For those diagnosed with ET I would insist on a BMB as clinically ito bloodcounts ET and early PMF look the same. It is only by examining the bonemarrow an expert pathologist/haematologist can distinguish between the 2: staghorn vs poorly lobulated/bare nuclei of the megakaryocites. I was initially diagnosed as ET based purely on bloodwork Jak2+ mutation and told I’ve got the best MPN, normal lifespan, nothing to worry about, not ‘real’ blood cancer, off you go. Symptomwise I did not buy that diagnosis, fired the doc, went for a 2nd opinion, BMB done, and it confirmed I have grade 1 MF and was promptly put on Jakavi (Jakafi). Now on combo Jakavi+Pegasys. More and more patients with ‘ET’ are rediagnosed as early MF or MF, not because of ‘progression’, but because they were misdiagnosed based on blood Jak2+ only without BMB. So please, when told you have ET without a BMB insist on your doc to follow revised protocol and have the BMB done. Treatment, quality of life and life expectancy differ ET vs PMF so better to get the correct diagnosis so that you know what you are dealing with to get optimum care.
That is why there is active debate in the MPN assessment world about the need for an initial BMB. Good for you for paying attention to your own instincts and insisting on getting what you needed. Assertive patients receive higher quality care. Passive patients do not. Patients should always take an active decisive role in determining their own treatment needs. This is both a right and a responsibility we all have. Doctors advise, consult, recommend and write medical orders. Patients decide. More power to you for deciding wisely.
As had already been mentioned, I was told that a BMB is useful to provide a datum and benchmark do that any future BMB can refer back and ascertain what if any changes have occurred. Furthermore I was told that a BMB would usually be performed if there was a change in bloods, and perhaps other symptoms, subsequent to a period of stability. This was the case for me when after 12 years with PV I beat anaemic and a BMB more or less confirmed that I'd transitioned to MF.
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