Newly diagnosed with positives JAK2

Hi YD64 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey well.

It took 14 years before I needed any full on treatment so I eventually realised that I had to get on with life deal with the onslaught as and when it came.

Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

Always around to help more or just to chat

Hi YD64 I'm so sorry to find you have PV, I know it's a blood cancer and I really wish I had met you elsewhere. 

I was diagnosed in March 2015 with MDS and within that group of blood cancers I have Refractory Anaemia and that's the total opposite of your blood cancer, I have a low red blood count and ironically my cancer was discovered after I had 6 or 7 venesections over the same number of weeks because of a different blood condition called haemachromatosis.

I'm taking aspirin at the moment but only because I am going to have an operation on my elbow on Thursday, normally I take a different, stronger blood thinner called Clopidogril. I was changed from something else to that after I had a mini stroke about 4 years ago. I was on that drug for a month 11 years ago after I had a heart attack and then changed to another drug and unfortunately I can't remember what it was, I have a little memory problem these days, Aphasia. 

I felt ok and continued to work. However, my haematologist and a nurse advised me to stop working and allow my body to fight the disease. My GP was another one and he was slightly more insistent, but I felt fine and continued working until the following January 2016. In July of 2015, just 4 months after my cancer diagnosis, I began to have sciatic nerve pain in my left leg and a month or two later I was diagnosed with spinal stenosis. The pain worsened and by the end of the year I was in great pain so reluctantly I handed in my notice. The company had a policy of 3 months notice but that was thankfully overturned because I had been with them 35 years so I stopped working 2 weeks later. Within 3 months I was in a wheelchair. A tough 10 months! 

I'm afraid I don't know of a self test for Haematocrits but your haematologist should be able to help you with that.

Just like my good friend Mike The Highlander, I am around for a chat. 

Take care and stay safe

Tvman