Hope this is okay to ask here

[Clsmith]

I have been told I have splenic marginal zone lymphoma. Platelet count 82. Also something called c reactive protein. Falling the dexamethasone regiment for treating ITP. Will be getting more blood done soon. Needing help to know what questions I should be asking when I see my doctor again.

Thank you.

[Cllcanada Top Poster CURE Hero]

Hi Clsmith

MZL is in the same family as CLL , but it is very different and there are a number of subtypes. Do you know your subtype?

The following link has a good list at the bottom, of questions to ask your doctor, on your next visit...

Sorry, I can't be of more help, but the fine details are outside my knowledge base

leukaemiacare.org.uk/margin...

~chris

[Clsmith in reply to Cllcanada]

Thanks, Chris. Good read.

[AussieNeil Partner Administrator]

So you at last have a diagnosis and it isn't CLL, but another related chronic Non-Hodgkin Lymphoma which is rather rare and also caused by misbehaving B-lymphocytes. (It's much more rare than CLL, so it's no wonder that CLL was thought to be your diagnosis initially.) You will have had a Flow Cytometry test to check which lymphoma you have - just like we have for CLL and you may also have, like us, a FISH test to check for common genome abnormalities (depending where you live - some places only do this test prior to chemotherapy treatment if that's considered necessary). If you need treatment, you'll also likely share some common drugs with CLL patients, in particular, CD20 monoclonal antibodies, like Rituximab/Mabthera or later versions.

You are also prone to cytopenias (lowered counts of different blood cell types, with many of us also having some degree of ITP (low platelet counts). Your doctor is obviously trying to raise your platelet count with the dexamethasone regiment. While a platelet count of 86 is well below the normal lower limit of 150, you are only at a slightly increased risk of bleeding, but it would probably be a good idea to give up contact sports! Do ask your doctor what you should look for to indicate that your platelet count has worsened and what to do if you see those signs. You'll probably be told to watch for petechia - small red dots appearing under your skin, along with unexplained bruising and bleeding taking longer to stop.

As with CLL, you'll have some degree of immune compromise, so ask your doctor whether you need to take additional care to avoid infections. Your doctor may eventually order an immunoglobulin (antibody level) test to check further than what's apparent from your standard blood tests already done. It's worth asking if you should get up to date with your immunisations, but I'd presume as with CLL, you shouldn't have live vaccinations.

Also ask your doctor how your red blood cell and haemoglobin counts are going. They could be lower and make you feel more tired and easily out of breath.

C Reactive Protein (CRP) is a blood test and is used mainly as a marker of inflammation. Normal concentration is usually lower than 10 mg/L, slightly increasing with aging. Higher levels are found in late pregnant women, mild inflammation and viral infections (10–40 mg/L), active inflammation, bacterial infection (40–200 mg/L), severe bacterial infections and burns (>200 mg/L). I suspect your specialist asked for this test to check to what extent your splenic marginal zone lymphoma is affecting your body's ability to fight off infections, but do ask when you get your result what are the implications for you. As you can see from the above, the CRP reading can go far higher than the normal range under some circumstances.

As you will have gathered from reading this and monitoring the matters that concern us on Newsfeed, you do have a lot in common with this community. Given we aren't familiar with your condition, if you do follow this community, you'll need to check the validity of information with your doctor. Tips to help with reducing the risk of infection and how to get used to having regular blood tests will be relevant, as will some of the treatment related posts. If you are interested in tracking your blood test results, let me know, because there are a couple of spreadsheet templates that would readily suit your needs.

I hope the dexamethasone works for you, but if you do need a splenectomy, a few of us have been through the experience.

All the best,

Neil

[Clsmith]

Thanks for this informative and caring post. Lots to learn from you and good follow up for my next visit.

[Clsmith]

I would love to see the spreadsheets to help me stay organized. Thank you

[lankisterguy Volunteer]

I think it's late night in Australia where Aussie Neil lives, so the day shift from the USA will answer the spreadsheet request:

Here is a link to Neil's posting 9 months ago:

healthunlocked.com/cllsuppo...

Neil published a much improved version of Chaya Venkat's Excel sheet (CLLTopics). Neil provided excellent instructions on one tab, to explain the other tabs like the CBC input tab, the chart output tab and liver function tab.

Several of us have worked on the internal settings of these spread sheets and have our own flavors, so if you have a question - please post and one of us will help out.

Len

[Clsmith]

Thank you

[hubbell]

I was DC in 1968 and w&w until my spleen got big and had it removed in 2007. Platelets went up to 500-650 after operation. All is well , have to make sure I don't

Catch a cold.

Carl K.