Hi, I have just joined as feeling a little anxious. Several years ago I was diagnosed with a rare form of blood cancer Large Granular lymphocytic leukaemia and have been on watch and wait since. I visited the Haematologist yesterday and because my platelets are rising, now 519 I am taking aspirin 75. He now thinks I have essential thrombocythhemia with Jak2. May later decide on a bone marrow biopsy. He also mentions myeloprciferative neoplasms. So wants to see me again in December after another blood test as he finds my particulate cancer a weird on as so many mutations. I also am diabetic 2 on injections and have chronic kidney disease stage 3.
Hi again Furrycat and well done navigating across to this little corner of the Community.
As I said in your post in the New to Community area I don’t have LGL but I have been on my journey with two very rare types of T-Cell Non Hodgkin’s Lymphoma's for over 26 years….. being on Active Monitoring (Watch and Wait) for the first 14 years before any full on treatments were required…… I actually continued to work on a full teaching timetable in Further Education for the first 12 years before I retired.
Let’s look for any group members with LGL to pick up on your post…… there have been a few in the past few years.
You can also click on the 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.
We do also have a group specifically for the ‘other’ blood cancers that don’t fit exactly into the Lymphoma, Myeloma and Leukaemia categories…… like the ones you have mentioned essential thrombocythhemia and myeloprciferative neoplasms….
MDS/MPN/ET/PV/myelofibrosis (MF)
As always the Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits and financial guidance or just connect with a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks provide amazing support and the Heamatology Support Group I attend at our Maggie’s is very helpful and supportive.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
Do get back to me if you need further help or just any to chat.
