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How to make sense of medical notes when it is a rare chronic blood cancer - can anyone advise me?

Hi

I don’t know if anyone can help me? I have an appointment with my consultant next week. For two years I have been so confused with what I’ve been told. I have a ‘marginal zone lymphoma in leukaemic phase’ but also have been told that it’s not one of the three marginal zone categories and is more like Chronic lymphocytic leukaemia (CLL)! It is also rare/unknown. I’ve never managed to understand it at all and am facing the situation where my consultant is winding down his clinical work. I feel like I need to ask the right questions/learn a bit before I see him, possibly for the last/one of the last times.

So, has anyone got any advice about how to understand all the cluster information on their medical notes? It is so difficult to understand! Also is there any good primer that could be recommended about the immunology surrounding blood cancers? Because mine doesn’t fit into a box it’s hard to know where to start looking as even this site has set out categories to choose from. Thank you x

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Oh @lousyT I am the last person to ask this question of.
Perhaps the Blood Cancer UK can help you more.
I always ask open questions or say what should I be asking you to understand my condition more and what is likely to happen in the future.
I also ask for clarification if I do not understand what I am being told.
I hope others will be more helpful.
I am impressed that you are planning for your appointment and how to make the most of it.
Please let us know how you get on.

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Thanks Erica I appreciate your reply. I am just a bit scared as I’ve asked so many questions and just still don’t understand and I did a biology degree so I’m not used to not understanding scientific things if they are explained fully to me. The issue is that it’s such a complicated subject and in the past I think that my consultant didn’t feel that I needed to know it, but now he might move me on and because he’s mentioned treatment might be needed (not sure of the timeframe) I really feel that I need to find out more before I’ve lost my opportunity!

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Erica has given you good advice @lousyT . Most of us are only knowledgeable in our own condition but they may be someone on these forums in the same position and of course the support service are always amazing. Keeping checking in with us either way so we know how you’re getting on.

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Thanks @Franko . It’s really hard to know where to turn for advice, but I will try the patient support line.

Best wishes

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“What should I be asking you to understand my condition more?” - great question, @Erica.

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I make a list of questions before a consultation and take the paper with me as well as my daughter so that she can remember the answers if it is face to face. If it is A phone consultation I write notes. Never be afraid to ask, you contribute to the consultants wages, it is. Part of their job to keep you informed, they gave me several leaflets on Polycythaemia vera (PV) my condition and on the alternative drugs they could use, which were very helpful. I do like to know what I am facing, but sometimes, ignorance is bliss. Marylin

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Thanks for replying @Marilyn. I try and ask questions but I think it’s the rareness that means he doesn’t really know exactly himself exactly. However, now I should really ask for clarification on potential treatments and I will ask again about why it seems to straddle different disease categories and be more assertive about it! Best wishes

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Thank you so much for starting this thread @lousyT I think many will be able to relate! How are you getting on?
Two resources which might help you is our Chronic lymphocytic leukaemia (CLL) info booklet - Chronic_lymphocytic_leukaemia-CLL-Blood-Cancer-UK-CLL-0717.4.pdf (shopify.com) (feel free to order it to be posted to you as some people find it useful to write questions and notes in) and also, our Ask the Experts panel discussion on effective communication with treatment teams - Ask the Experts: Effective Communication with your Treatment Team - YouTube

We’re only at the end of the phone if you want to talk anything through with us, even if it’s just to help you formulate questions for your clinical team. Take care.

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Hi Alice, thank you. Unfortunately my consultant had to cancel my appointment, due to illness. However, it does mean that I get more time to try and figure out what to ask! I have ordered the booklet, yesterday in fact! Along with some Christmas bits and bobs. I have also contacted the support team.

Best wishes

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When I was diagnosed with Chronic lymphocytic leukaemia (CLL) I was given a booklet entitled Chronic lymphocytic leukaemia (CLL) by Bloodwise which proved useful. It gives a list of questions to ask of your doctor/consultant. Ask Blood Cancer UK if it is still available.Just noticed that there is a reference to this in Alice’s post which you can download.

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Thanks @Catcher for highlighting this booklet and supporting @lousyT on this forum.
How are you doing?
Look after yourself.

Leukemic means it involves the blood and things can be both a Lymphoma and Leukemia.Basically leukemia, lymphoma and myeloma are all blood cancers but involve different aspects of the blood; leukemia the blood directly, lymphoma the lymph part of the blood and myeloma the plasma part of the blood.Some of these can run into each other so you can get a combination.Sadly it seems a very complicated field but they all involve the blood as their point of origin whereas something like bowel cancer is a solid tumour carcinoma so doesn’t but to complicate things it might undergo metastasis to the lymph nodes and would but they are classified as to how they originally developed so it wouldn’t be a blood cancer.

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Hi, I’m in a similar situation with an atypical Chronic lymphocytic leukaemia (CLL) with surface proteins (the CD bit) that don’t fit nicely into a named type of leukaemia/ lymphoma. It’s frustrating to not know what you’re up against but I take comfort in monitoring of my (deteriorating) symptoms and reassurance from my consultant that they’ve stuff in their treatment bag when the time is right. I try to be content with being ok at the moment!

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