Hi all,
I’ve been reading some of the posts for support and I thought I would post.
I saw haematologist yesterday and had further bloods done, waiting for Jak2 Exon 12, CALR, MPL screening for 6 weeks? following a consistently raised Red blood cell count and a period of feeling quite unwell ( extreme fatigue, leg cramps, night sweats, breathless ) and developing an unprovoked blood clot in my leg now . I know other solid cancers can cause it. Awaiting CT scans result.
How do you cope with the wait? Especially 6 weeks? I’m worried as recognised the symptoms but also still at risk of more blood clots with uncontrolled red blood cell count ( rising since 2023).
Hi Jan1976 and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I am sorry to read about your concerns...... blood cancers can be ever so complicated....... and yes at times it can take a significant time to get a clear diagnosis.
I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. this took a full year, lots of blood that showed nothing, a few CTs that again showed nothing....... but 6 biopsies later I got my diagnosis.
I eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my blood cancer ‘type’ is different I most definitely appreciate the challenges of 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.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
