Essential Thrombocythemia: Looking for information and support

Thank you for sharing. It helps me a lot. Another question: Does anyone have high Ferritin levels along with the high platelet count? I can't seem to get an answer from my doctor. I have been on H.U. for about 2 l/2 months, and the platelet count is starting to come down, but not the Ferritin.

Linda

I have just been diagnosed with the rare blood cancer = Essential Thromocythaemia ET

Jerry, first I’d like to say thank you for your service. I am so sorry you are still going through that. You are right about the new treatments they have today. I don’t think they use prednisone for that particular condition anymore, but I am not a doctor. I wish you well and hope you continue to get better. Jackt00

Hi Jackt00

My name is Jerry and in 1989 while in the army got a severe form of ITP while I was at AIT in Augusta Georgia. They know so much more today about that disease than back then. I went through the bone marrow biopsy which was not any fun. 20% chance to live red cross flew my family there on emergency. Anyways I finally responded to very high doses of prednisone
Went to Germany preparing for desert Storm I got the disease again this time even worse. The prednisone made me crazy I started having really bad hallucinations and was losing my mind. They did an emergency splenectomy on me when they finally got my platelets up high enough. Red cross again but I wanted to die. I still to this day suffer from mental illness. It's been a lonely road about this disease until I started finding these groups I've learned so much about the disease. I did a lot of research on prednisone and it does cause schizophrenic like episodes at very high doses. I developed a mental illness out of all of that and that's why I still have it but it started in there. Anyways I know I'm going on and on I just wanted to share my experience.

My platelets have been increasing since 2018 and are currently at 610. My bloodwork confirmed the jak2 mutation. My red and white blood cells are in normal range. I am 74. I did not have a bone marrow biopsy but was put on a low dose aspirin regimen. Now my hematologist wants to put me on Hydroxyurea 500 mg. After reading all the side effects, all the precautions and self care procedures, I was terrified! I am already taking, Methotrexate, another cancer drug, for rheumatoid arthritis. Would someone who is taking Hydroxyurea like to share any side effects they have experienced or any advice. Thanks.

Your doctor may suggest a blood and platelet transfusion very soon. It would help you with the fatigue and also avoid any potentially dangerous bleeding from your low platelet level.
Wonky blood numbers are pretty typical and AML can progress rapidly with extreme fatigue and weakness. You’re already feeling that side effect so make sure to have support with a walker or have someone give you a ride with a wheel chair. Save your energy. 🙂.

Thank you for reaching out. My symptoms are varied. In no particular order, they are: extreme weakness/balance in legs; heavy bruising; red rash-like spots on skin (mostly arms and legs); weight loss (30 lbs so far); loss of appetite; very low platelets (under 10); CBC numbers are all far from normal. My next appointment is today for another CBC and discussion of results and then on June 8 with my doctor to decide on a treatment plan. I will report what this meeting produces.