Last week I saw a haematologist oncologist and CLL was confirmed. The appointment lasted 5 minutes, no information offered. I've asked for the lab report. Can't make much sense of it. The red figures are:
Total bilirubin serum H23
Immunoglobulin M L.0.25
WBC 14 (it was 7 in November)
Lymphocyte count H9.6
Vit.B12 serum L170
CLL score 4/5
67% disease in all lymphocytes
38% disease in all TNCs
If anyone can help to explain I'd be very grateful.
Thanks!
Martin
I feel your frustration - a 5 minute appointment and having it end without any real explanation of the lab report.
The items in red that you have included in your post all have either an H or an L alongside them. High or Low.
I suspect they didn't spend much time with you because they see very early stage CLL in the results. I haven't ever seen some of the items on your report. Things differ from country to country.
The main thing is that your lymphocytes are only just beginning to rise. Your haemoglobin, platelets and neutrophils are obviously all OK as they weren't in red. They are also produced in the bone marrow as well as the lymphocytes, and they are still producing adequate quantities.
You haven't provided much information but I think there is little to be concerned about at this stage. Both from the numbers and also because the doctor had very little to say.
I can’t explain your results, but I am so sad for you that the Haematologist didn’t offer you any information or support that was inexcusable of him/her.
Hopefully someone on here will have the knowledge to help you.
All the best
Sheila
My initial hematologist was just the same, your blood work looks ok. They see many many very sick and about to die people every day so the CLL seems less important in their perspective. Try not to worry yet, but find a CLL specialist if your physician isn't communicating or reassuring you.
Hi Martin,
Sounds strange but take it as a good sign that they didn't spend much time with you (sounds strange I know)
Your Lymphocyte count is around 10 at the moment. Bear in mind people can get up to around 300 before starting treatment and that could take some time. We are all different though, and can have different reasons for starting treatment.
Silly question: How would you describe your general health? I note your first post said "no symptoms" but how have you done in the last 6 months with coughs and colds, bugs etc
The thing I did notice in your results if I understand them correctly is low vitamin B12 so I would doubke check that with your GP. Effective treatments are now available from reputable high street chemists, but I would want regular testing if you can get it.
Did they say when your next CLL hospital checkup might be ?
One other point have a look at Paula's "30 Tips for Living Well with CLL":
healthunlocked.com/cllsuppo......
There is a lot on that list, so I would suggest don't ignore it, but don't try and do it all at once.
For all the technical stuff on CLL you hopefully have plenty of time to get yourself up to speed with it and get to the level you want to be. Many of us are still learning.
Best wishes,
Ernest
Martin,
Agreed with all Ernest says. But surprised that if this was your first appointment with Barts I would have expected them to have spent more time with you ? Do you know if it was the Consultant you saw ( forget his name ) or a registrar ? I know it’s disconcerting but good you are almost being dismissed. I was so ill I went straight into treatment.
Useful to run through all the jabs you need and suggest you discuss with your GP, especially the order to have the two pneumonia ones. Sometimes the practice nurse can be difficult. You are likely to be the only patient in your practice with CLL so you almost need to guide them. It took me several years to get mine to understand that a weakened immune system means that “ it will go away “ doesn’t apply.
I use a B12 spray from Better Health.
Now try to relax for many years.
Regards
Colette
Hello Martin and welcome to the CLL club. Not what one wants, but when it's a fact, you have come to the right place for answers. I'm sure of the other 8 that posted you have some good information. I can only add; keep all of your blood work sheets. Make a folder and keep each so you can see how quickly your numbers are going up, and/or you will need treatment soon. I don't understand why your hema/oncologist didn't explain these to you. A five minute appointment? You may need a new specialist. It doesn't appear as if you're in the danger zone, but to go from 7 to 14 in three months shows there's something going on. Your LY# is slightly higher than normal at 9.6. That is what they look at mostly, not the WBC. That would most likely be lower than the WBC. How's your Red Blood Count? A little about me. Diagnosed in 2012 and was on watch and wait for 5-1/2 years. Finally reached the point where my numbers were very high and the fact I was anemic showed I needed meds and I take Imbruvica 420 mg daily. Doing well on it. My best to you in this journey. Come back often and ask questions. Carole
Thank you Carole 🤗
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