About

Member has chosen to not make this information public.

Pages (1)

Posts (17)

Tue, Sep 10 5:32pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Seems to me that the normal platelet range is between 200 and 400 so if your platelet count fell to 163 your Hydroxyurea treatment plan may be overly aggressive. Time to have a discussion with your Hemotologist or Oncologist. Good luck.

Sat, Aug 17 9:38am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

I don’t get overly fatigued but the Hydea does give me an upset stomach that lasts for 30 minutes or so. I force myself to go to the gym for 60 minutes 4 times per week. My MDS/MPN is currently under control but I also have 4 leaky heart valves. Two minor and two mild-to-moderate. I get an echo every six months to check on those leaks. My blood cancers were most likely caused by exposure to toxins at Camp Lejeune, NC as the drinking water there has been contaminated since 1954. I was also exposed to dioxin (Agent Orange) in Vietnam. I assume the same toxins that caused my blood cancers may be responsible for the damage to my heart valves. Guess I’ll never really know. I also share something you have. I have neuropathy of both my feet. I was diagnosed with HSN Type 1 years ago. HSN is hereditary neuropathy which runs rampant in my family. Comes down on the X chromosome so thank you mom and grandma. I do get fatigued but I know I have to keep moving. I don’t have high BP so I can’t offer you any advice on that. I assume your doctor will tell you to excercise, excercise, watch your weight and watch your diet. Good luck with your treatments

Sat, Aug 10 12:28pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

Did they do a molecular panel to determine which genes have mutated? The reason I ask is I have MDS/MPN Overlap with Thrombocytosis which like your son is two different blood cancers. The bone marrow aspiration and biopsy results which were done at Sloan were confusing as they indicated multiple issues including MF but the molecular panel cleared up the confusion when that test indicated I was JAK2 and SRSF2 Positive. My doctors at Sloan are huge fans of the molecular panel so you might want to pursue that test. Good luck.

Sat, Aug 10 10:42am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

ITP is an autoimmune disease,
also called idiopathic
thrombocytopenia, that attacks the
body’s platelets, so you don’t have
enough platelets in your blood. ET is a overproduction of platelets and ITP is the under production of platelets. No known cause as far as I know. But having MDS at the same time probably makes his diagnosis extremely rare. Wondering how he was diagnosed. Was it based on a molecular panel or a BM Aspiration/Biopsy?

Sat, Aug 3 7:36pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

A blood smear is normally used by a Hematologist to check for several suspected mutations. The JAK2 is the most common gene mutation that causes ET but there are other mutations that cause various MPN disorders. The molecular panel looks at 400 genes and will identify any blood gene mutation. According to the Sloan Cancer Center Leukemia Group the tests that they consider protocol include the bone marrow aspiration and biopsy and the molecular panel. In fact, that’s WHO protocol. Wishing you good luck. Let’s hope whatever you son has it’s treatable.

Sat, Aug 3 9:10am · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

The molecular panel is crucial because that panel looks at 400 genes to identify which genes have mutated.

Fri, Aug 2 4:40pm · JAK2 Mutation - Effects and Questions in Blood Cancers & Disorders

I was originally diagnosed with ET based on a positive JAK2 bloid test. I asked the Hemotologist if she was going to do a bone marrow aspiration and biopsy along with a molecular panel. She responded no, that's not necessary. Being a researcher all my life I knew her diagnosis was not based on science so I went to Sloan Cancer Center and the first thing they did was the book e marrow aspiration, biopsy and the molecular panel. My final diagnosis is MDS/MPN overlap with Thrombocytosis. So I have two different blood cancers. MDS and MPN. On the MDS side I have a positive SRSF2 gene that causes my white blood cells to be abnormal. On the MPN side I have ET and a positive JAK2 which causes a high platelet count. I was put on Hydroxyurea which is designed to reduce your platelet count. After 4 months my platelet count is in the normal range. Unfortunately, there is no cure for MDS or MPN diseases absent a stem cell transplant. The good news is many people can live a long time with ET. As I understand it, there is a 30% chance ET and other MPN diseases as well as MDS diseases will mutate to AML or CML. That means you have a 70% chance your ET won't mutate. So live your best life. I do recommend you get a bone marrow aspiration and biopsy along with a molecular panel. Your diagnosis should be based on science, not the opinion of a doctor. Good luck.

Wed, Jul 17 7:51pm · High platelet count in Blood Cancers & Disorders

Your welcome. As a researcher all my life I know that a diagnosis of blood cancer or any major illness should be based on science, not the opinion of a doctor. If the doctor doesn't order the tests that can conclusively identify mutated genes than the patient never gets an accurate diagnosis that is grounded in science. Ask your Hemotologist to order the bone marrow aspiration and biopsy and a molecular panel. Knowledge is key in any diagnosis. Good luck.