Hi all,
I was diagnosed with ET about 2 years ago at the age of 37, at first like most I was absolutely overwhelmed and scared and didn’t really know what to think. However after a lot of reading and a great consultant I managed to get a better idea of the diagnosis. Fast forward 2 and a half years I found out this week I’ve also been diagnosed with PV. This has really shooken me up and have found myself in a bit of a state. I’ve been told I’ll be having a venesection and another bone marrow biopsy and also a trip to london to see a specialist. I was wondering if anyone else has an idea in what the turn around for these appointments are? I understand it might be a case by case basis, but i do think if I get a better idea of timescales it would help me process it all.
thank you in advance for any support or information given.
Hi Nick39 and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) or but I was diagnosed way back in 1999 with another rare, incurable type of blood cancer Stage 4a so I do know this journey rather well.
Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Talking to people face to face can help a lot so do check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with ET and PV in it so worth checking.
Always around if you need further help or just want to talk.
Hi Nick39, I see my good friend Thehighlander has been in touch with you. I'm afraid I don't have ET or PV. I have a blood cancer also, that is Myelodysplasia (MDS). I've had a few venesections but had to stop because of my bone marrow cancer diagnosis, I couldn't have any more because my haemoglobin was low. I had a bone marrow biopsy in early 2015 and the result gave me a diagnosis of Myelodysplasia. Since then I have had treatment every week to keep my haemoglobin level from dropping any lower.
It was certainly a shock to have a bone marrow cancer diagnosis and just 3 months later I began to have pains down my left leg which became so severe that I had to move into a wheelchair. That was a tough period mentally. I was 57 at diagnosis and was told that was very young to be diagnosed with MDS, usually 70s was more common.
This group is a life saver for many people, the level of support and friendship is fantastic. There aren't too many with blood cancers but there are some and we know exactly how you feel. Nick it's a pleasure to meet you but I so wish it had been elsewhere. Do you know when you'll be having your biopsy or venesection(s) yet? Keep in touch and we'll get you through it.
Take care Nick
Tvman
