Hi everyone, i am new to this.
I have heart failure, kidney failure and multiple pulmonary embolisms. In hospital last week I was given a brochure on low grade non Hodgkin lymphoma and Mantle cell lymphoma was highlighted for me as it’s suspected but needs more tests to confirm or not.
my discharge letter from hospital two days ago stated
”long standing lymphocytosis . Referral to exclude possible LPD. Blood sample sent for peripheral cell markers. Flow cytometry findings confirm clonal mature B cell LPD, 51%. Immunophenotype is CD5 variable + and atypical of CLL. Mantle cell lymphoma should be excluded by genetics for cyclinD1 and consider BM (bone marrow ) biopsies.”
can anyone help and explain this in simple terms?
Hi Turbotim and warm welcome to the Macmillan Community although sorry that you had to find us and especially sorry to hear about your ongoing diagnosis.
I am Mike and I help out around our Lymphoma groups.
For some context 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) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.
In simple terms….. the report is covering a lot of bases as basically they have no idea exactly what you have and it needs a medical professional to explain it correctly…… but as there are over 60 types and sub-types of Lymphoma some are rare (like my 2 types) but others are rather similar so further testing needs to be done to get the exact typing done.
We don’t have groups for every type but these are our main group below…….
General Non Hodgkin's Lymphoma
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
The problem is that there is no one specific treatment type for all Lymphomas so until you have a clear diagnosis I suggest you stick to this discussion thread until you get that diagnosis.
Diagnosis can take time and getting clear information is important but can be complicated and at times confusing……. so these two links will help you navigate your appointments.
Top tips for getting the best from your appointments
Questions to ask your medical team about Lymphoma
I am always around to help out as best as I can.
