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3 hours ago · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Are you on any meds? Hydroxyurea is usually prescribed to reduce a high platelet count. You should get a bone marrow procedure and a molecular panel to identify what’s really going on and which genes have mutated. Good luck.

Sat, Feb 8 2:11pm · Side effects of Hydroxyurea, ET in Blood Cancers & Disorders

Hi Tammy,

I have MDS/MPN overlap with Thrombocytosis and MF. My platelet count was about 800,000 when I started on Hydroxyurea in January 2019. My platelet count is now about 250,000. Some of my other blood numbers are just outside the normal range but most are within the normal range. I go for blood work every month at Sloan Cancer Center. According to the Leukemia group at Sloan, my combination of three blood cancers is extremely rare so I joined their research group so they can run experiments on my blood and bone marrow. I’m told that I have a 30% chance of my disease mutating to full blown leukemia but a 70% chance it won’t mutate. I’m liking those odds. If it mutates or the Hydroxyurea stops working I suppose I’m facing a stem cell transplant. Hopefully that’s not in my immediate future. I also developed 4 leaky heart valves and had to have an ablation in December. The ablation went well and they stopped the extra 22,000 PVCs (extra beats) I was experiencing every day. The folks at Sloan said that there is research that links the JAK2 mutation gene with cardiovascular disease. Something called CHIP. So these mutations that we carry have found other ways to torment us. A gift that keeps on giving.

Fri, Feb 7 2:20pm · Side effects of Hydroxyurea, ET in Blood Cancers & Disorders

I have MDS/MPN overlap with Thrombocytosis and MF and I've been on Hydrea to reduce my high platelet count for 14 months now. No itchness but I do get fatigued around 2 PM every day. A 30 minute nap is needed. But I'm 73 now and I don't think it's uncommon for someone my age to get fatigued. I also have HSN type 1 which is a hereditary form of peripheral neuropathy that comes down on the X chromosome. Thanks mom. I do have problems walking and with balance and sleeping at night is a problem because my legs cannot touch without pins and needles going off. So I sleep in a recliner. Just saw a Hematologist/Oncologist at the VA for an exam and he concluded that because I am JAK2 and SRSF2 positive that my life expectancy us about 2 years. I've had MDS/MPN for about 2 years so I guess either he's wrong or I'm a dead man walking. I prefer to think that this VA doctor is an ass. Strange thing – looking at me you wouldn't think I was sick. And that works for me.
Sorry, had to vent after getting this news.

Mon, Feb 3 8:40am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

So how was your ET, JAK2 Positive diagnosed? Did your Hematologist or Oncologist do a bone marrow procedure and molecular panel? Sometimes doctors use a blood smear which only looks at the most common gene mutations. The molecular panel looks at 400 genes. You need to know what genes gave mutated so your doctor can properly treat you. Good luck.

Sun, Feb 2 4:12pm · Autoimmune disease and thrombocytopenia in Autoimmune Diseases

I can’t offer any advice on thrombocytopenia. I have MDS/MPN Overlap with Thrombocytosis and MF. With Thrombocytosis I have a high platelet count. You have a low platelet count. Wondering if you have had a bone marrow procedure and a molecular panel to determine which genes have mutated.

Mon, Jan 20 3:51pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Have you filed a lawsuit claim with the VA yet? You may be entitled to medical benefits and if your hematologist/oncologist writes a nexus letter stating that they believe your PV and JAK2 gene mutation was caused by exposure to the contaminated water at Camp LeJeune you may get disability benefits from the VA. I was a Marine stationed at Camp LeJeune and developed MDS/MPN overlap and I was awarded a 100% disability rating from the VA. You should go to the VA.gov website and check out benefits for spouses and dependents who lived at Camp LeJuene.
Good luck.

Dec 19, 2019 · JAK2 and Heart Disease in Blood Cancers & Disorders

I have MDS/MPN Overlap. On the MPN side I have ET and MF. I recently developed a heart problem and had an ablation at the Stony Brook University Heart Institute. I was having 22,000 PVCs which is extra beats along with super ventricular episodes. Based on my blood cancer history the doctors at Stony Brook opted to skip trying drugs and go straight to the ablation procedure. I'm better now, no more PVCs. My question is – does anyone have a heart issue after testing positive for the JAK2 gene mutation? A Hematologist at the VA Hospital in Northport told me there is scientific evidence linking the JAK2 mutation and heart disease. Something referred to as "CHIP".

Dec 11, 2019 · Jak 2 and waldromstrom Macroglobulemia in Blood Cancers & Disorders

As far as I know, ET with a positive JAK2 mutation normally suggests you have a high platelet count. I have MDS and MPN. On the MPN side I have ET and MF. Since there is no cure for MPN diseases or MDS diseases absent a stem cell transplant your oncologist or hematologist will treat your symptoms. I had a very high platelet count so I'm on hydroxyurea which is the standard treatment to reduce one's platelet count. I was diagnosed after a bone marrow aspiration, biopsy and a molecular panel. The molecular panel indicates multiple gene mutations and that was the conclusive scientific evidence the Leukemua doctors at Sloan needed to make a definitive diagnosis and a treatment plan. Sloan said there is a 30% chance of mutation to full blown Leukemia at which time they'll discuss a stem cell transplant. The good news is there is 70% chance of no mutation to Leukemia, so just live your best life. Good luck.