Tips?

[NLBlue]

I may be diagnosed with PV, but want to make sure I get into see an MPN specialist, but the best one in my town doesn’t have any availability till almost two months from now. Any suggestions will i be okay by then?

[PhysAssist]

Hi NLBlue,

Honestly, even if you do have PV, it's a matter of decades, not months. In the meantime, the most likely cause for a problem to develop is getting a clot somewhere that it doesn't belong.

The most often recommended way to avoid that is to take a baby aspirin [i.e., 81 mg] twice daily.

Also, part of what kept me safe for the decade or so while my Hct and Hgb were rising was to go and donate double red [blood cells] at the Red Cross whenever they'd allow it.

I also highly recommend wearing knee-high compression stockings for travel [or if you are going sitting for any long periods.

Have you looked at the list of MPN specialists to make sure that the doctor that you're waiting for is truly an MPN expert, and not a general hematologist/oncologist?

Look here:

mpncancerconnection.org/mpn...

and/or here:

mpnforum.com/list-hem./

Best,

PA

[monarch5000]

You could use those 2 months to study up on the treatment options for PV. The treatment preferences of different specialists and cancer centers varies enormously. Here's a 91 year old specialist in the USA who is a leading authority on treating PV with interferon: youtu.be/R4SdF6FrnbE(Not working as expected?)

[hunter5582]

There are not many MPN Specialists available and a 2-month wait or longer is common. You already received some excellent feedback. PV is a chronic condition not usually an acute medical issue. You have time to sort out your options and make decisions about what your next steps should be,

The key elements of treatment in the short-term are antiplatelet therapy (low-dose aspirin) and controlling the erythrocytosis (HCT<45% males, HCT<42/43% females). These interventions are the key to preventing thrombosis. The common first intervention is therapeutic phlebotomy (AKA venesection) to reach the HCT target.

Longer-term treatment includes reducing risk of thrombosis, controlling systemic inflammation, controlling the other symptoms of PV, and reducing risk of progression. There are different strategies and options include cytoreductive medications, venesections, diet, supplements, and more.

Each of these options has benefits and risks. It is best to develop a foundation of knowledge and consulting with a MPN Specialist before making any decisions about you long-term treatment. We all respond differently to the treatment options. We each need to decide what our treatment goals will be, what our risk tolerance is, and what our preferred treatment approach will be. We also need providers who engage in shared decision making and values the patient's voice in the decision making process.

There are multiple options to treat PV and the options have improved greatly in recent years. More options are in development. Most hematologists have little experience with MPNs and do not have the KSAs to provide optimal treatment. That is why following up on your plan to consult a MPN Specialist is so important. Monarch5000 has a great idea about spending some time researching PV. Here are a few more resources that can help.

legeforeningen.no/contentas...

ashpublications.org/blood/a...

mpninfo.org/conferences/202...

mpnadvocacy.com/video-events/

Wishing you all the best moving forward.

[Meatloaf9]

Hi, you have received some good advice in posts. Why do you think you have PV?

[TheaterCrazy]

Hi, NLBlue, I have PV also and when I couldn’t be seen for two months after I’d had a clot in my thigh and a black toe, I called every day at the same time and was pleasant as all get out, asking if there might be any cancellations. Finally around the 2nd week, I was on first name basis with the appt person. She suggested I call every other day, and she’d call me if anyone cancelled. I saw the specialist on a Friday after I first called on Monday. The baby aspirin is the way to go until then. BTW you are on the right site for the best info, help and understanding. These MPNers Rock! Good luck! Trisha

[MAP44]

Hi NLBlue, Welcome to this fabulous community! Sounds like you are not a full fledge member here.

Not sure if you started with high blood tests and then a Jak2 or other mutation test and are awaiting a bone marrow biopsy but that’s kind of the normal order.

With any kind of surprise diagnosis comes crazy amounts of anxiety, stress and sleepless nights.

Please know that this is a very long chronic disease and for most of us it is something we will live with well into old age.

When my platelets were first noticed to be high my family doctor put me on a baby aspirin until I seen the specialist. Basically that hasn’t changed in 3.5 yrs. I had a regular hematologist at diagnosis but switched to the MPN Specialist after learning about them on this site.

Best of luck with your Specialist appointment. Diagnosis ET but was actually PV and needed phlebotomy about 6 months later. Lucky to be on Pegasus for over a year and feeling great. 🍻