Badges (1)

About

Member has chosen to not make this information public.

Pages (1)

Posts (33)

Tue, Mar 17 6:45pm · High WBC and platelet count in Blood Cancers & Disorders

The JAK2 mutation is common among multiple blood cancers. You need to get a molecular panel and a bone marrow aspiration and biopsy to determine what blood cancer(s) and gene mutations you have.

Mon, Mar 16 10:04am · High WBC and platelet count in Blood Cancers & Disorders

So I had high WBC and platelet numbers and went to Sloan Cancer Center. They performed a bone marrow aspiration and pathology plus a molecular panel. I was diagnosed with MDS/MPN-RS-T. You will never know why you have high WBC and platelet numbers until you go to a Cancer Center and get the appropriate testing done. Knowledge is important because once your properly diagnosed your oncologist will know how to treat you. Good luck.

Sun, Mar 1 1:04pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

I assume that all if us who have blood cancers have immune deficiencies so traveling to any area that has active outbreaks of the coronavirus isn't a good idea. As I understand it, older people with underlying health issues are the people who are most likely to succumb to the coronavirus or the Type B flu if not inoculated. Of course traveling on a plane places you in close quarters with other passengers and increases the likelihood if exposure to all kinds of nasty things. We're scheduled to go to Northern Italy in late June. Not sure if that trip will be canceled but it doesn't look good at the moment.

Wed, Feb 26 11:03am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Just because you have the JAK2 mutation it doesn't mean you cannot have other gene mutations. I suggest you get the none marrow aspiration, biopsy and molecular panel done. Knowledge is power. Once you're properly diagnosed your oncologist will know how to treat you.

Fri, Feb 21 7:42pm · 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.