Me again.

[JanEyre]

I am so glad I have found this community. I was getting quite depressed about maybe having to start treatments.Now I am learning more from you wonderful people about cll. I have found my first blood tests from October 2017 and wonder if anyone can explain the numbers to me.

The highlighted ones are. Total B Lymphocytes 5112 and Lambda surface chain 4832. Also cd5 expression, cd19,dim cd20; cd23,cd200.and dim Lamda surface light chain. CD 38 expr on cd19+cd5.

I also have Polymyalia Rheumatica which I take Prednisone for.

Many thanks Jan

[seelel]

Hi Jan,

The figures that you have posted are from a Flow Cytometry blood test. This test is used to determine why your lymphocytes were elevated.

Lymphocytosis can be due to something other than CLL. Your chart however indicates that the surface proteins on your B-cells are those of CLL.

[lankisterguy Volunteer]

Hi JanEyre,

-

You may want to read through the Pinned Posts

*30 tips for living well with CLL (an update of "Coping Strategies" and "Things we can do...")

*12 TIPS to get more out of this CLL Support forum - and help others do the same.

*Good article on navigating complementary cancer treatments

*An Overall view of CLL in the diagnosis stage, biomarkers, testing

*Newly diagnosed with CLL or just found us? This post is for you!

- You can find the links on this page - right column on computer screens or scroll way below on mobile devices to find the box labeled "Pinned Posts"

-

Those will help you understand some of the FLOW test results that as seelel says was the way your doctors determined you had CLL and not another cause for slightly higher than normal ALC & WBC.

-

Len

[JanEyre in reply to lankisterguy]

Thank you so much for this. The more I can learn the better I think.

Jan

[keeptalking]

Hi Jan

I'm afraid I can't help with those blood results but am particularly interested in the fact that you have Polymyalgia Rheumatica as I have too. I was diagnosed with this 9 months before the CLL. I'm also on Prednisolone and am finding that as I decrease my dosage my aching is back. My difficulty is in knowing which symptom belongs to which complaint. Are you finding the same? Also is the depression due to the diagnosis of CLL or part of taking the steroid.

[JanEyre in reply to keeptalking]

Hi keep talking

I was diagnosed with Polymyalgia Rhuematica about 9 years ago and been on Prednisone since then.

I am also trying to cut down and now take 4mg a day.

I also get a lot more aching ,my ESR is still high. That is the inflammation marker in your blood. I did read somewhere that Prednisone is sometimes used for cll. I have an appointment at the cancer clinic on 13th February so will ask the question. Wishing you all the best.

Jan

[JanEyre in reply to keeptalking]

I think depression is due to you cll diagnosis. Not from the steroids. xx

[keeptalking in reply to JanEyre]

Hi janeyre

Thanks for your response it feels so good to meet someone with both complaints going side by side.

I’m on 2mgs of steroids now and are just beginning to stabilise a bit. I find the first 2 or 3 weeks after I’ve reduced is awful. I seize up bodily and shoulder and neck pain in bed really makes getting up difficult. Later in the day becomes looser. Despite all this I think if I can get off altogether I would be able to rule one thing out.

I was told that my thyroid had multiple nodules that were benign 1 year ago but my pain in my neck is again highlighting my confusion between both complaints. Should I be reporting this to my haematology consultant? Or do I just accept it’s part of the PMR.

Thanks for your response. Keep talking

[JanEyre in reply to keeptalking]

Hi keep talking,

how quickly are you reducing? You should only reduce 1/2 to 1 ml a month. , to avoid the pain.

I also suffer more at nights and it takes me a while to loosen up. I also have had a heap of spinal surgery and have rods and pin in my lower back.

Which doesn’t help as far as pain goes.

I really think you have to speak to your doctor / haematologist about your symptoms.

Like you I don’t know if it is PMG or cll. I will be speaking to the haematologist when I see him in 3 weeks. Will let you know what he says. Meanwhile take care and try not to stress, I try not stress, I realise it does not help me.

Cheers Jan

[morepork]

Hi Jan

Just wanted to say Hi and Kia Ora from across the Tasman (in Wellington, NZ).

Glad you found this CLL site with such expert knowledge and support, as you have already found.

I have several of my family who have been in Adelaide and up in the hills in Stirling since the 1970's, so while we over here are agonising about the situation over there - horrific fires and losses - oh the wildlife 😢 - - I'm aware that SA is not featured in the media here so much as NSW, but has had its own losses.

Best wishes for your way ahead

Stephanie

[JanEyre in reply to morepork]

Thank you Stephanie, We have had some bad fires here and also in Western Australia. NSW is really bad with fires still burning out of control.

So heartbreaking for those poor people and the wildlife. We recover though. These things bring us as a nation closer together.

Jan xx

[keeptalking]

Hi Jan. I know you’re taking prednisone for your PMR. Have you noticed any reduction in your lymphocytes whilst lowering the steroids.

My last two blood tests have shown a drop of my white cell count as my steroids are reducing. My doctor says there is no connection.

[JanEyre in reply to keeptalking]

Hi Keeptalking,

My lymphocytes have jumped up since I started reducing the dose. I have gone from 10mg down to 2 my in the last 18 months, from 5.68 5/4/18 up to 18 in December 19.

I wonder why yours are dropping, it must be a good sign for you .

I have my appointment on 13th February. Hope all goes well for you .

Cheers Jan.

[keeptalking in reply to JanEyre]

Yes that’s quite an increase and mine is the opposite. Mine was 11.8 in December 18. Was at 8.4 in September 19. Went down again in December to 7.6.

I’m wondering if I’ve been misdiagnosed with CLL but also know that is just wishful thinking.

I will see my consultant on March 9th so I’ll let you know my outcome. Hope yours brings good results do let me know.

[JanEyre in reply to keeptalking]

Thank you. Same here let me know how you go.