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Posts (56)

Fri, Jun 26 6:03pm · Essential thrombocythemia in Blood Cancers & Disorders

Hi Tessa,
I'm glad you reached out, seeking others' experience with ET – a rare and not well known blood cancer. Like you, I'm mostly asymptomatic although I do struggle with fatigue. As I understand it, most people find out that they have ET from having a CBC, unless they unfortunately experience an "episode,"as in a blood clot or stroke. For many years, I have had ET and because of the level of my platelets, I'm taking a daily 81mg aspirin.–very good news. There are many things to consider is starting Hydroxyurea, In my experience, Drs do not encourage its use until it's essential, You mentioned wanting to have children and I'd like to recommend that you read up on ET, so you'll get acquainted with the side effects. While you didn't mention it, 50% of people who have ET have no gene mutations; I'm one. They just don't know enough about it. Read up and continue to ask questions. Stay positive! Best always,

Tue, May 26 9:38am · Husband has Essential Thrombocythemia (ET) & MCI in Blood Cancers & Disorders

I’ve had ET for many many years. I have no gene mutation, having had an extensive panel of genetic tests. My symptoms are largely fatigue and night sweats, but I’m lately noticing a new symptom: numbness in fingers on my left hand and top of my left foot, so that’s my story. Happily, my platelets have remained low enough to not compel using Hydroxyurea, only 81mg aspirin —and I’ve had no “episodes” (strokes, clots or heart issues).
You described noting about your husband’s ET issues, so I’m not clear about what support you’re seeking.
Wishing your husband and you good health.

Tue, May 26 9:13am · Pain in shoulder after cervical surgery in Chronic Pain

October 1st will be the 10 year anniversary of my anterior cervical spine fusion surgery. Over the course of the following 2 1/2 years, I struggled with extraordinary pain in my shoulder which compelled lots of PT and pain mngt — LOTS of shots to knock down the pain. I had radiating pain for almost a year prior to the surgery and my continued struggle post-op made me feel that I would never feel good again. Depression compounded my general state of mind.
Over time, my electric shoulder pain gradually dissipated. I believe that it was referred pain and I’m able to feel normal . There’s no doubt that I am dramatically improved, but actively working on treating the pain is something you must be committed to. Be sure to articulate your pain to your physical therapists and physiatrist.
I hope this helps and am available to talk more about it, if you like. You must keep hope alive!!!

Sat, Mar 21 4:56pm · ET - Essential Thrombocythemia & Fainting in Blood Cancers & Disorders

It has been a while since I posted last and want to provide updates and elicit any feedback —all is welcome. Over the past year, I’ve had several syncope episodes and feel that I’ve learned nothing new. Mostly consistent with each episode, I’ve had a single glass of Prosecco. It is rare that I consume any spirits, but I’ll enjoy an occasional beer. I’ve considered being allergic to something, but I’ve never figured it out. Prosecco has been a factor in the majority of my blackouts. Any thoughts?

Apr 6, 2019 · ET - Essential Thrombocythemia & Fainting in Blood Cancers & Disorders

Thank you for following up on and my concerns an “hearing” my concerns and need for information.
I will dive into the link you shared.
Much appreciated

Apr 4, 2019 · ET - Essential Thrombocythemia & Fainting in Blood Cancers & Disorders

Thanks to you all for sharing.
As you know, I’m looking at ET and vasovagal syncope, as I have both. I’ve had every work up under the sun and on the advice of my Internist,!with whom I met yesterday, I’m now scheduled for a bilateral carotid sonogram on the 16th, to help further understand what’s behind this fainting, whether it’s ET or vasovagal syncope. Dependent on the outcomes, I will next confer with a neurologist. All of this is upsetting, disarming and I’m working not to make myself crazy.

Apr 3, 2019 · ET - Essential Thrombocythemia & Fainting in Blood Cancers & Disorders

Mostly asymptotic from ET and with Internist now. I’m under care of Oncologist-Hemotoligist and have regular bloodwork and follow ups. I would like to ask you to weigh in on vasovagal syncope and potential triggers for fainting, as originally adkedand how ETfainting might compare. I am one of those asymptotic patients, so with little known about ET, especially since I have no gene mutations, knowledge is power. All help welcome.
Thank you for your counsel.

Apr 3, 2019 · ET - Essential Thrombocythemia & Fainting in Blood Cancers & Disorders

What causes fainting, for those of us who have ET? I am concerned and am looking for clarification, in order to better understand what’s behind it and if there are triggers. Also, I have suffered from several incidents of vasovagal syncope, which causes fainting. I don’t understand how to differentiate the differences between ET fainting and vasovagal syncope – and desperately need to know. I would appreciate any information you can share to help me cope with this.