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Tue, Jun 23 8:27am · Essential thrombocythemia in Blood Cancers & Disorders

I realize I’m replying to myself but I hope everyone can see this. I’m starting to have problems with neuropathy of my feet so the doctor put me on Gabapentin which is for neuropathy pain. The problem for me is sleeping. When I’m in bed and my legs touch it sets my nerves off off and I experience cramps and tingling. Sometimes the tingling is so bad I can “hear” my nerves complaining. Like white noise in my brain. Just annoying. When it starts I have to sleep on a recliner. Within the last month I’ve started having back pain. I have MDS/MPN-RS-T and one of the diseases in that overlap disease is myelofibrosis. I’m heading off to an Orthopaedic doctor for X-rays to determine if my back pain is coming from “weakened bones” or is muscular in nature. It never stops does it?

Thu, Jun 4 5:43pm · Essential thrombocythemia in Blood Cancers & Disorders

I was misdiagnosed at the VA Hospital with ET in December of 2018. Didn't believe a word the VA Hematologis told me ao I went to Sloan and had a bone marrow aspiration and molecular panel done. The final diagnosis is MDS/MPN-RS-T. Also JAK2, SRSF2 and SFB31 positive. I've been on Hydrea and 81 mg aspirin since January 2019. No problems with the Hydrea or the aspirin.

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.