Essential Thrombocythemia: Looking for information and support

I told my Oncologist that I would not go through a stem cell transplant after 80. I’m almost 77. He said we’ll discuss this when and if your MDS/MPN-RS-T mutates or no longer responds to the normal meds to treat this disorder. Sloan has the RS number at 15%. So, do you experience fatigue during the day? I need a 30 minute nap every day. I also have Chronic Sensorimotor Axonal Polyneuropathy, CMT2 and CMT4B. The Sensorimotor Axonal Polyneuropathy is an acquired disease while the CMT disorders are hereditary. My mothers family has a six generation history of this disorder. CMT comes down on the X chromosome. No one ever had a genetics test done in the past because whole Exome Sequencing wasn’t around. I went with my three daughters to Weill Cornell in Manhattan to undergo genetic testing. Results indicated one daughter had no mutations. Daughter 2 had the CMT2 mutation. Daughter 3 has both the CMT2and CMT4B mutations. So this sucker that has plagued my mother’s family continues to plague my family.
Glad to finally hook up with someone with a similar case if MDS/MPN. Our mutations aren’t the same but I assume our symptoms may be close.

Hi @crhilston I just wanted to pop in this morning to see how you’re feeling. With newly diagnosed AML, in the early stages, you’ll most likely be feeling some fatigue and maybe shortness of breath. Do you have any other symptoms?

I’d be very interested in learning what your doctor will recommend for potential treatments for you. I know there are new abrogating meds on the market. Would you mind sharing after your appointment?

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.

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. 🙂.

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.

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.

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

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