New to Hydrea for ET

Has anyone on HU for Essential Thrombocythemia gotten a Medic Alert bracelet and do you think it is necessary?

My hematologist wanted to keep my platelets low because of clotting events in the past. I haven't heard much about anyone having clotting problems here. My hematologist wants platelets low. They were 476 but she wanted to go lower so I am now down to 426. Hydroxurea works well. I feel tired quite often but fight the tireness. Some other blood numbers out of wack but supposedly normal for this situation. I take 10 hydroxurea a week. I am 78 and am coming into a year of this situation that I believe was brought on by stress. I haven't had any problems with my hair. I am fair and outside a lot soaking up sunshine. No problems with sunburn that I believe was an issue with the Hydroxurea. I watch what I eat. I guess you'd say I am doing well, so far. Glad to hear the long termer made it to 19 years with no big problems. My mother had Polycythemia vera but did not die of it.

I wondered about this too, and did a little checking.

It turns out that wearing an alert bracelet doesn't usually improve your care in an emergency situation. Too bad!

I made a card to carry in my wallet stating my diagnosis, and that I take aspirin and HU every day.

My hematologist is also an oncologist.

I'm not sure who or how you checked, but both my city's paramedics and the hospitals I go to here always pay attention to a visible Medica Alert bracelet. Mine says on the front, "I have Thrombocythemia," my name, my doctor's name, and "See Wallet Cards." On the back, it gives my PCP's Name, "I take Hydroxyurea," and "See Wallet Cards."

My wallet cards are very specific, listing main medical issues, drug allergies, and four contacts with w/phone numbers - Two are doctors, and two are close local friends. I have one card that they can scan, which directs them to a website where my full medical history, recent test results, the names of individuals with my medical directive, and other relevant information are easily accessible.

Some people have nothing like this. I would rather be overprepared than underprepared. The medics and doctors would prefer that also. If I am unconscious, obviously I can't give them any information!

I have been very happy to read online the positive responses to taking HU instead of the negative and down right scary ones. I was diagnosed with ET with a Jak2 V617F mutation and as I posted in a previous post I am seeing a Hem/Onc at UCLA on the 3rd. I felt I wanted another opinion. I really wanted to know if I’m a bleeder, or a clotter and how do they determine which way it can go. Also, when is a bone marrow test done? The first doctor just said you have Jak2 mutation and this is how we start treatment. If that’s the case then fine that’s what I will do, but more explanation would have been great.

Hi lyd0218,

Please share what you find out about if they can tell if you are a bleeder or a clotter and how it how that is determined. That is a great question! Also, I was just like you and wanted to make sure if I what I have so I asked for a bone marrow biopsy but my O/H said it wasn’t necessary as “you have ET, what else could it be”. That made me not so sure of her knowledge about MPNs. You are wise to go to UCLA for more expert help. I know they have know about JAK2 mutation longer than mine, CALR. For me the bone marrow biopsy is as very easy and painless but I know others did not have that experience.

I will post what I learn next week. I have a long list of questions for them.

My comment was somewhat vague. I had my first visit with hematologist/oncologist that diagnosed Essential Thrombocytosis with. JAK2 v617F mutation. He prescribed HU. I am waiting to start as I have a second opinion with a University hematologist/oncologist the first week of June