Hi,
My name is Cassie and I am 40, I have 3 children 14, 5 and 3.
I was diagnosed with mgus in July 2023 (39) which was found after bloods from investigations into high blood pressure. My high blood pressure started in April 2022 and the blood test from November 2022 triggered the referal to myeloma clinic.
I had tests due to symptoms to rule out if it had progressed to any cancer. I was then discharged to the community for blood test monitoring.
I recieved my first letter from them In August 23 introducing themselves and on this letter it stated the Monoclonal B-cell lymphocytosis. I didn't think anything more into it assuming it was just another name for the condition. Apart from my first initial appointment and second to state I needed monitoring I wasn't given much information.
I got my first blood tubes and questionnaire beginning of February 24 and recieved my results a week ago. I was confused by what any of it meant as apart from saying they were okay unless anything changed from the immunology report and all the numbers there wasn't much information.
I called them earlier this week as I wasn't happy with the lack of information and the things I was looking at were different from what I had researched myself.
I recieved a phone call on the way home from work on Thursday. To say it knocked me was an under statement. It was only then I was told they had discovered the Monoclonal B-cell lymphocytosis in the August results and had both that and MGUS. While my paraprotien levels are really low my abnormal b - cells are now 5.08. In the phone call I was informed anything over 5 would trigger a diagnosis of CLL
I haven't recieved my official diagnose but I will do so it seems on my next lot of blood tests in July. Again this wasn't explained on the phone call it was only hinted and just alot of things about vaccines. Alot I can't have because I am under the age of 50 but can get them I was told when my diagnosis changes. It was only because I was hopeful and researched that I realised it had to be above 5 for over 3 mths for the official diagnose. They also mentioned about support groups which is why I searched up here.
I feel in limbo and devasted by all of this. I don't know how to talk to anybody about it or even bring it up. I am scared of how quickly my numbers seem to have gone up. I am still confused and unsure about alot of things as I have had to read up alot by myself
My white blood cell count has been continuously raised and not in normal range since 2018 but the blood tests between then and 2020 were pregnancy bloods so that could be the reason they were raised. My Lymphocyte count has only been abnormal since November 22 and has also been continuously raised on every blood test since
Hi Cassie3 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and sorry to hear about your ongoing diagnosis.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare (7 in a million) incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma eventually (NHL) reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.
In these early days it can be challenging but like my type of NHL...... CLL is slow growing and often can be in the body a good period of time before being diagnosed or even needing treatment...... let's look for things to become clearer soon.
Back in 1999 my consultant was 99% sure as to what I had but it took a further year of tests to get the proof.
There are a number of active members on the group at the moment so let’s look fir them to pick up n your post, you can also go through the older posts (hit the main group heading) and as always you can hit reply to any post and see if the member is still using the site.
it's often good to talk so you may find it helpful to call the Macmillan Support Line 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 or just a listening ear.
Always around to chat ((hugs))
