Jak2, MPN, all blood count is up! Nutrition and lifestyle changes?

[margaritampn]

Just came from the doctor. Still no definite result after my BMB. Tests are still incomplete. Some info:

Positive for Jak2 , myeloproliferative neoplasms (MPN)

Negative for leukemia and lymphoma

Ultrasound came back good, no enlarged spleen, organs, etc.

Next step is to see an MPN specialist. Then they will submit me for a case study where a panel of pathologists and hematologists will review my case. I guess I have a unique case.

Typically red blood count or white blood count is up. In my case, all are up including platelets

I was not prescribed with anything yet and have not diagnosed with anything yet except Jak2 and MPN. I most likely will have to take Hydria.

To those of you that have MPN, Jak2. What changes in your lifestyle did you have to do? Did you have to change your diet, etc? I will most likely have to take Hydria (?) . Have any of guys taken that? What are the side effects?

[hunter5582]

It sounds like you are on the right path to get to a good care plan. Seeing a MPN specialist and reviewing the case is exactly what should happen for all MPN cases. These are rare disorders, and each case is unique. MPNs are not monolithic disorders and an individualized approach to each case is critical for optimal care. The treatment protocols are just general guidelines that may or may not apply to an individual case.

It is not uncommon to see erythrocytosis + thrombocytosis and/or leukocytosis with polycythemia vera. That is NOT to say you have PV - you need to work out the actual diagnosis with your care team. The key thing is to understand that the JAK2 mutation can increase all hematopoiesis. The reason why the "same" mutation causes different symptoms is something that is just starting to be understood.

Your care plan will be determined once you have a full diagnosis and consult with the MPN Specialist. If you do have PV, then typically it will include therapeutic phlebotomy. It may or may not include cytoreduction. That depends on your individual needs. Cytoreduction may or may not be with hydroxyurea (HU). There are other options that may be more suitable based on your presentation, including PEGylated Interferons or Ruxolitinib. HU will often be a first line for people over age 60, but not for people younger; however, it varies from doctor to doctor and insurance formulary to formulary.

I did take HU for three one year periods. The last time, I have turned HU - intolerant. I experienced HU toxicity even at sub-therapeutic doses. You will hear from others on the forum that they tolerate HU with little or no problem. As you look at each of the medication options for MPNs you will see that each has its own risk/benefit profile. So does the phlebotomy-only option (what I am currently doing). Even the routine use of low-dose aspirin has a risk/benefit profile. The greatest risk of all is to not find the right treatment approach for you.

Regarding lifestyle choices - it definitely is something we need to do. It can make a big difference. The first step is to maintain good overall health. We need to give ourselves the best chance we can when managing a MPN. Especially true regarding cardio-vascular health. Exercise, maintain healthy weight, and eat a healthy diet. Regarding diet, many of us have success with a Mediterranean and/or Anti-inflammatory diet. Controlling inflammation is a key component of managing MPNs as at the core they are inflammatory disorders.

Hope that helps. All the best to you on your MPN journey. Please let us know how things go.

@

[KentBee]

I have taken Hydroxycarbamide for three years. It took about a month to get used to them, also take aspirin and other unrelated meds. I feel very tired however this may be due to aging process, I am seventy . Hair thinned a little and bleed easily but otherwise all ok.