Hi all, I'm curious to hear how often you see your MPN specialist and get your platelet level checked.
My specialist recently suggested we go from follow ups every 4 months to every 6, as my platelets counts are and have been stable since my diagnosis in late 2022, and indeed since they were first noted to be elevated in mid 2021. I'm currently on aspirin alone for my ET, as I'm in the low risk category. (My platelets range 530-650 and my VAF is around 9%.)
I'm in two minds about what to think. Part of me is happy to know things are stable and that my MPN specialist (in Mt Sinai, NYC) suggested to space out visits. But, part of me wonders if it isn't more prudent to keep the visits every 4 months so that if there were to be any changes that required a different plan, we could adjust treatment more expeditiously.
Just wanted some opinions from this wonderful group. Thanks in advance and wishing you all well!
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ETinNYC
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If it's just basic blood counts, you could request just labs from the Dr's office or your GP. No need for a visit unless there is a surprise result. (assuming you have access to the result) I usually have some blood work lined up at any time from my list of Drs.
CBCs are very inexpensive so you might even be able to get recurring CBCs ordered. I had that for a time I was trying a certain med.
This is what I have moved to. I was seeing my doc every 3 months. We switched that to every 4 months and I get a CBC every 6 weeks. It is working well right now.
My visits are down to every year now that things are stable. Diagnosed in 2018 and I am currently taking clopidogrel with platelets of between 800-1000. However I have been given the number of the haematology ward at the hospital that I can phone anytime if things change and I feel I need to be seen sooner, which is a nice safety net. Great that things are stable for you!
6 months may be fine to see your doc but it’s a long time with no bloods, I’ve been stable for years but have a consult every 3 months and do bloods every month at my GP.
The veterans say don’t turn your back on your MPN because it can change quite quickly sometimes. That’s a general statement and I note you are probably very stable and low risk. Also Mount Sinai are very good, I see an expert there as needed.
I started Peginterferon in November 2023 and I have my bloods checked monthly. My platelets were 860 but now, 680. Hopefully, next week they'll have dropped again 🤞
I know we're all different, my haematologist is hoping to get my platelets much lower and has said I'll continue to have monthly blood tests until the count is down and stable.
It's great to hear your results are stable. I do agree with your thoughts on maintaining your 4 monthly checks, I feel you should share your thoughts, with your team. EPguy had a great thought too, to request blood checks, which would be reassuring for you.
I started off seeing doctors every month, then three months. More recently it moved to six months but with a blood test and call with nurses in between to flag up any anomalies. I’d prob prefer not to wait six months for bloods if I was you as it’s a long gap. But as others have said you could monitor that yourself between six monthly appointments
It's good to hear that you're doing well, but I agree with all of the above.
I was going for a visit every 3-4 months, and having labs about every 2 weeks, now down to every 4 weeks, while starting Besremi, but since my dose has stabilized at 500 mcg every 2 weeks, my in-person visits have been decreased to every 6 months.
We do keep in touch in between as necessary by using the messaging module in the patient portals of my providers, and only rarely a telephone call for confirmation.
Thanks for the advice everyone. I definitely can get a CBC done at my primary care doc in between those every 6 monthly visits... So that my bloods are checked every 3 months. I have my next appointment with my MPN doc in late June. I'll bring up the cadence of the visits and the idea to perhaps do blood work with my primary team in between.
II have two hematologists. One is a MPN Specialist who is 2 hours away, the other is a local hematologist who handles ongoing care. I was seeing the MPN Specialist every 6 months but changed to yearly at my request. I see the local hematologist about every 16 weeks. I do labs every 8 weeks. We alter the schedule as needed based on what is going on.
Perhaps one consideration is to do your monitoring labs more frequently than the face-to-face meeting with the doc. It is very easy to get the lab results. you do not need to see the doc to see your labs. they post quickly. I get my CBC results before I leave the office. they post within 24 hours.
Your peace of mind does matter and is a reasonable treatment goal to maintain. Given what you describe, I would be very comfortable doing labs ever 3 months and visits every 6 months. If something changes, you can always arrange a visit sooner.
I’ve been on 4 months for the last few years. My ET is stable but I now have MBL and am being monitored for CLL, so I’d prefer not to extend the interval any further at the moment!
I have PV, take Hydroxycarbamide, and my appointments/labs are every 3 months. Before taking the meds my appointments/labs were every 6 weeks and I used to have to have a venesection at every appointment.
I see a haematologist and have monthly blood tests done . I see the specialist now every 4 - 6 months. The first months of my PV diagnosis the visits were monthly and then tapered off to 3 and further at 5months…. dependent on results or monitoring of Jakafi dosage.
I haven't actually "seen" my haematologist for about three years - my appointments are always telephone and I like it that way!
I get bloods done every quarter and am able to see by myself (on the NHS app) what the results are and then I tend to have a follow up telephone appointment where he walks me through the results.
Being pregnant, this has switched to monthly, but its still telephone appointments.
In between I email him if I have any questions, need more blood forms or am running out of meds.
hi I think that seeing as you are stable 4-6 months is fine.
I have not really had much stability so every 3-4 months. Since on Peg I’m still being monitored as 3 yrs in med dose is still being tweaked ( for the better) so I have a face to face every 6 months and phone consultation in between.
We are all individuals and so are our bloods.
Don’t know how far you have to travel but maybe bloods done at gp and phone call to discuss might suit you. Peace of mind is important.
I was diagnosed with ET in 2015, but based on my bloodwork prior to that time, I likely have had ET for several years prior to that. In 2015, platelets were around 500 and have been slowly progressing up (in the 750-850 range today). No meds other than an aspirin. I provide this background because I think the frequency of both blood work and doctor appointments can vary based on individual situations, including the comfort level each of us need.
In my case, I see my MPN specialist once a year, with bloodwork every six months given how relatively stable my situation is. I have a decent understanding of the MPN symptoms and always am on alert for changes in symptoms or how I feel. I do have standing order for bloodwork and could get bloodwork anytime I wanted at the local lab. And my MNP doctor is very assessible if I reach out.
When I was first diagnosed - and prior to finding an MPN specialist - I was seen every three months by a hematologist. Bloodwork every three months made sense to me, but not the trip to see the doctor (i.e., he wasn't doing anything other than looking at the bloodwork).
Hi, I was originally diagnosed with ET and was seeing MPN specialist every 6 months for blood tests until I went in and my HCT had jumped to 55 and my Dx was soon changed to PV. I now see him every 4 months and follow his recommendations and not my local Heme who I see twice a year, I think we need a local hematologist in case a problem arises and your specialist is 4.5 hours away like mine. My MPN specialist has ordered monthly bloods that I get locally and I can see the results the same day on the portal. I think you can go longer between appts with ET than you can with PV or anything more advanced. I would probably ask for local blood tests every 3 months with ET and more frequently with PV. That's just what I would do, we are all different and similar. Best to you.
I have PV (diagnosed in 2015 at age 71). I live in central Pennsylvania, and for five years after diagnosis saw only a local hematologist. I was on HU, which wasn't really working for me (and gave rise to serious skin reactions) and frequent phlebotomies. I decided to seek out a MPN specialist, first at Johns Hopkins, and then at the University of Pennsylvania. I am now on Jakafi. My blood count numbers are stable, and I see the specialist every six months. Note that these are tele-visits, since Philadelphia is 180 miles from my home. I also see the local hematologist (rather, his CRNP) every six months. I get blood work once a month. These arrangements seem to be working for me.
I have appointments (usually by phone) four times a year, alternating twice a year with the consultant and twice with the haematology-oncology nurse, but I have blood tests anything between weekly and monthly (depending what my blood or medication is doing) and am in regular email contact with the haematology-oncology department at my local hospital.
I see my MPN Specialist at Stanford every six months either in person or via Telemedicine visit. I talk with his office every two weeks while we are transitioning me from Jakafi 20mg 2x day to Besremi.
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