Hello from North Carolina USA

[PamelaNC]

As of today, I have been officially diagnosed with ET following the results of my BMB and bloodwork. My name is Pam and I am a 62 year old woman who transplanted from Maine to North Carolina about two years ago -the weather is surely better here! My PCP originally suspected a problem when my platelets kept climbing. I was referred to my current hematologist/oncologist who ran bloodwork and identified that I am JAK2 positive along with a BMB with results of increased atypical megakaryocytes. I have been prescribed HU 500 mg to start and a potential increase to 1000mg and aspirin 81 mg.

This is not my first rodeo with cancer and treatment – over twenty two years ago I was diagnosed with stage 3B breast cancer and spent a good year in treatment – outpatient chemotherapy, two surgeries, autologous stem cell transplant, radiation and more surgeries. Participated in a clinical trial for Tamoxifen after treatment for five years which is now a standard in treatment for breast cancers.

Prior to this and again after treatment I had been diagnosed with an autoimmune disorder – initially some form of lupus and was later identified as Sjogren's syndrome. For a good many years my doctors and I thought that many of my issues with my bloodwork and thyroid were attributed to the autoimmune disorder, however it appears that they are two separate issues. As I write this, it almost seems unreal to me…. however here I am alive and as well as I can be, raised three wonderful daughters, have four beautiful grand daughters and continue to work in my career as a counselor.

I must admit for the past six weeks I have been hovering around the periphery of this site and reading your posts and discussions and admiring the courage and tenacity of you all. I am looking forward to borrowing some of your strength and wisdom in this new journey. Thank you

[Rachelthepotter]

Hi Pamela

Welcome to the site. Lots of interesting people , useful information and all round support to be had. If you haven't found it already the Chicago based MPN Research Foundation is also excellent.

mpnresearchfoundation.org.

All the best.

[PamelaNC in reply to Rachelthepotter]

Hi Rachel: I will take a look at the Chicago based site as well - thanks!

[Helpatlast]

Hello Pam welcome to our site - lots of support and info here best place to be!! Sorry to hear you have had such a variety of things to contend with in recent years. Know re ET tho that many of us have dealt with it for years and its treatment and we do OK "all things considered" so you will adjust and find your way round living with ET. Another good ref spot especially as you are in the USA is Patient Power brilliant element of it deals with MPNs lots of local meetings which can be joined online which I often do here in the UK and its lovely organiser Andrew is a star - ties in a lot with our MPN Voice here. All the best Pam

[mhos61]

Hi Pam and welcome to the forum.

Sounds like you’ve had a tough time. I am also 62 and have ET (Jak2+), so we have something in common!

I found MPN Voice in the UK and Patient Power in the USA very informative and reliable when I was first diagnosed. Feel free to ask any questions and someone will avail.

Mary x

[PamelaNC in reply to mhos61]

Thanks Mary - we do have something in common! Between my daughter and myself, we have been linking up to as many sites and supports as possible. Glad to be a part of what looks like a very supportive group.

Pam

[bigberta17]

Hi Pamela I'm 71 living in South Florida and recently diagnosed with ET/JAK2

only taking baby aspirin but my platelets are 487 and when they reach 500 they

want me on hydrea. I was wondering how you are doing on it since your post was from two years ago. I'm sorry for all the other issues you have had and will

pray you are getting better every day. Any advice you have would be greatly appreciated. Love NC--my daughter lives in Cary. Best of luck to you. Judi