Can i rely on phlebotomy only treatment

[Spa1981]

Hi

Currently i m relying on phlebotomy only for treatment of pv. I m not confident enough to take either clopid or aspirin since i had gastric ulcer previously. Am i doing right or something u can suggest.

[hunter5582]

I have PV and at age 65 am on a phlebotomy-only aspirin free regimen per the advice of the MPN-Specialist I see. While I do have GERD, which the aspirin did not help, the reason the doc took me off aspirin was risk of hemorrhage. I had developed excessive bleeding/bruising as I aged. especially once over age 60. There is a reason the American Heart Association changed the recommendation regarding aspirin use. The doc told me "You really do not want to get a brain bleed." Two weeks later, I was diagnosed with a hemorrhagic brain tumor surrounded by edema. Too late! Already bled in my brain. For me, aspirin is not a great choice. However - that is for me. We are each different in how our MPN presents. Some people ABSOLUTELY do need to take a blood thinner based on their individual profile. This is a decision that needs to be evaluated between the patient and the physician based on the patient's unique presentation.

The key here is to make this decision in consultation with a MPN Specialist. Unfortunately, most hematologists do not have the KSAs to individualize and optimize care for patients with MPNs. The standard protocol calls for aspirin/blood thinners and that it what they apply. Do lets be clear, many MPNers do need blood thinners to reduce their risks. Evaluation of your risk profile needs to be based on how your MPN presents along with your cooccurring medical conditions.

We cannot give you adequate feedback about your situation. There are too many variables. Please be sure to consult with a MPN Specialist to get the best consultation on what to do.

mpnforum.com/list-hem./ .

All the best to you.

[Mpncoda in reply to hunter5582]

Hunter, always love hearing your feedback! Do you live in the States? I’m wondering if MPN Specialists are covered by insurance as I am seeing a hematologist who is I great yet limited in the details of MPNs. I may need to “shop around”. Thanks for your contributions to our community!

[hunter5582 in reply to Mpncoda]

Yes I do live in the States. Harpers Ferry, WV to be specific. My very wonderful local hematologist is based in nearby Leesburg, VA. He is a terrific hemo-doc, but not a MPN expert (by his own definition). The MPN-Specialist I see is based at the Johns Hopkins MPN Clinic in Baltimore, MD - about 2 hours away. A bit too far for routine care. I initially saw Dr. Spivak, but he has now semi-retired and is not doing clinical practice. I now see Dr. Braunstein, who was trained by Dr. Spivak. The MPN Specialist consults regarding my care. The local doc provides the on-going care. It is a great team approach. There is no problem at all getting this covered by my insurance. Most of the major centers for MPN care will take a lot of different insurance programs.

Here is the link to the MPN experts list for convenience. Definitely shop around. It is worth doing whatever is necessary to consult with a MPN Specialist.

mpnforum.com/list-hem./ .

[Mpncoda in reply to hunter5582]

Currently I live in Bay Area and looking to move to NC. Many thanks and blessings Hunter-I’ll ck it out once I get settled. 🙂

[hunter5582 in reply to Mpncoda]

My daughter, who is also JAK2 positive with ET, sees Dr. Rein at the Duke Cancer Center. Not on the MPN Forum list, but she likes her.

[Mpncoda in reply to hunter5582]

Wow, and I read and my hematologist said that PV and ET is not genetic. But my mom also had it!

[hunter5582 in reply to Mpncoda]

Familial MPNs are a known phenomenon. There is active research underway on this topic. Dr. Angela Fleischman has a study underway that my daughter an I are participating in.

The JAK 2 mutation is an acquired mutation. You are not born with it. It is present in hemopoietic stem cells, but it is not present as a germline mutation. Since it is a somatic mutation you cannot inherit it. However, there is a JAK2 haplotype that can be inherited that predisposes you to acquire the JAK2 mutation. Here are a few studies on this topic.

nature.com/articles/ng.341

ashpublications.org/blood/a...

ncbi.nlm.nih.gov/pmc/articl...

Finding a MPN specialist who is up-to-date on the research is most helpful to gain a more complete understanding of MPNs. Many hematologists are just do not have the KSAs to provide understanding and optimal care for MPNs. I hope you find a good MPN Specialist once you relocate.

[mark382]

I have venesections as and when required and also on aspirin. I have had a few ulcers over the years and have had a dicky tummy for donkeys years. My GP put me on Lanzaprozole (think that's how you spell it), long before my PV diagnosis. Haematologist put me on aspirin. The soluble ones gave me a bad stomach, so GP put me on enteric coated. No problem with these. I also have the added complication that I'm asthmatic and aspirin can affect my asthma. So far no problem. Been on aspirin for 12 years.

[Wyebird]

What a predicament. I have ET So can’t help you. I do hope someone can give you sound advise soon x

[Mpncoda]

I must say after only 3 phlebotomists, my HCT which is the crucial number according to my Dr. came down from 58 to 46 within range. I am a believer in the procedure. My Dr said some of his patients do well with aspirin every other night which is my protocol and he’s fine with that. And yes, completely individual case by case. Must confirm with your specialist. Hope this helps!