Living With Polycythemia Vera

FLASCO, in partnership with PharmaEssentia & the Leukemia & Lymphoma Society, invite you and your caregiver to learn information about Polycythemia Vera. This patient-focused program will discuss an Overview of Polycythemia Vera, Treatment Options, Financial Support & Assistance, Caring for the Caregiver, and Patient Advocacy.

[@modiciamartin5659]

I believe that every sickness have a cure but the problem is to find the right cure..

[@chixbleau7321]

Because big pharma only wants to treat the symptoms ..never the cure..maybe just antibiotics cure ailments

[@MrStarchild3001]

Wow! This was a very impressive and very informative presentation! The amount of detail felt just right. Thank you!

[@colinmitchell5071]

Very clear and honest summary of the current knowledge of PV treatment and progression. It helped my understanding of my situation tremendously. As a sufferer distinguishing between the disease symptoms and the treatment side effects is very difficult. Thank you for this information.

[@brozbro]

In general, you have to be physically present for most clinical trials.

[@barbaramiller8172]

Have you ever had a patient that was triple negative mutations, normal bone marrow,but RBC, H7H high so i have to have phlebomies every 3 months. No symptoms but iron defienct.

[@splashgirl1961]

Are there any clinical trials or scientific research on stem cell therapy to treat PV? As this is where it starts? I’ve had for 3 years, and 2 oncologist hematologist in DFW refusing to address any treatment. No plebotomy, no bone marrow, only 1 JAK2 test. My only treatment is baby asprin. I have every last symptom of this except brain fog! Please help if you are able to get I for for Texas. I’m 61 and just needing assistance! I try to advocate but getting nothing!

[@Craftingmomof4]

Same here! Just baby aspirin was given to me for a daily medication. There’s got to be more

[@GoodnightJLH]

The symptoms of PV are common, nonspecific symptoms. Are your Hematologists saying that you don’t have PV? Do you have a JAK2 mutation? Have you had a bone marrow biopsy? If you have PV, you could try getting an appointment at MD Anderson in Houston. That’s where the MPN specialists are in Texas.

[@missescookie]

I’ve had PV since 2018 - had the jak2 gene test which was positive for a mutation. My levels were relatively normal so I wasn’t actively treated back then. Wasn’t til a few years later when WBC, platelets and RBC were elevated then phlebotomies were suggested as first line treatment along with baby aspirin. After few yrs phlebs caused my platelets to rise even more and robbed me of iron so bad that I couldn’t function. So now I am on Besremi (ropeginterferon) I still get Phlebs but not as often which is a relief… hopefully, you are not symptomatic and your levels remain relatively low. Go to a hematologist that specializes in rare myeloprolierative neoplasms. I wish you the best.

[@susiealverson1]

I live in Granbury, Tx. I had my first appt with Dr David D’Spain who practices in Weatherford, Granbury & maybe FW. He suspects PV & I did my first phlebotomy just yesterday. I’m not sure where we go from here. Depending on bloodwork results, I’m confident he’ll have a great plan for me, in addition to baby aspirin & occasional phlebotomies. It will be interesting to see if I have the J2 mutation. Anyway, you might want to make an appt with him. Best of luck.

[@guruprasadkm7416]

Is it advisable to supplement with Glycine and NAC in PV patients?

[@MrStarchild3001]

I tried supplementing with both. NAC 600mg x 1 or x2 seemed to improve my HCT control. So I stayed on it. Glycine didn't help with anything. There's also some evidence that it might increase growth hormone in high doses (something to stay away from as a cancer patient). So I've been supplementing with NAC for the past 1.5 yrs but not with Glycine. Other than those, fish oil (3.2g), wobenzym and AKG are fantastic supplements. Plus, green tea and hibiscus tea. I highly recommend them. Happy to share references.

[@guruprasadkm7416]

@@MrStarchild3001Thank you very much for your input. I appreciate it.

[@michaeldefiore5]

I had been told I have polycythemia but my doctor believes its from me taking testosterone my RBC had been high for 3 years and hemoglobin a little high but never past 17.5 I found out because couple months ago I started feeling pins and needles in my legs feet arms and hands and back and I thought it was from medication side effect but it wasn't cause I have osteogenesis imperfecta ehlers danlos and caffey disease but it's more primary osteogenesis imperfecta with these two other disorders that I'm guessing are part of the Gene mutation I have I also am in palliative care but my doctor so far said if my hemoglobin goes to 18 or above that’s when he would lower my testosterone I take every 4 weeks but yea it started with pins and needles and then burning I still experience it every single day and it’s bad then I get pain in my hands particularly the veins I don’t know why I wasn’t diagnosed with the genetic disorder until I was 30 going on 31 I’m not 31 and 5 months but I am worried from what I researched online but my doctor always tells me don’t look online

[@Craftingmomof4]

My Dr tells me the same thing but how can you stop when you want all the information you can possibly get on polycythemia Vera. I worry about it all the time since my diagnosis

[@GoodnightJLH]

Polycythemia Vera is only one type of polycythemia. The polycythemia caused by testosterone is a different kind.

[@missescookie]

there are different types: there’s polycythemia Vera which is what I have where the jak2 gene mutates. There’s also secondary polycythemia which is caused by something else. Also my hemoglobin has always been normal. My WBC, platelets, and RBC have all been high. Get bloodwork done on your levels to be sure. It’s how they suspected PV with me, and when I met with my hematologist they ordered a jak 2 gene test which was positive, so there was no question in my case that I have this.

[@NEHASHARMA-fq4ph]

If someone have BP 200/134 in polycythemia vera... n no medicine... is being effective...what should be done in this case ?

[@crawleyr4919]

Go to hospital!