Just diagnosed : 42 year old speech... - Leukaemia CARE

Leukaemia CARE

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Just diagnosed

basketballmom645_US profile image

42 year old speech therapist diagnosed with large granular lymphocytic leukemia day after thanksgiving 2021. Haven’t had my first appointment yet. No idea what to ask or what treatments will he recommended.

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basketballmom645_US
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2003UK profile image
2003UKChampion

Hi and a great big welcome, you must still be in shock, I know I felt in my own bubble with the world going on as normal around me for quite a while.I would have had no idea of what to ask at a medical appointment either.

I had to realise that the appointment for me was my opportunity to not just ask about my diagnosis, my options and prognosis etc, but also to talk about the fears, thoughts, feelings and practicalities I might have.

Don't be put off or confused by medical terms, ask what they mean and ensure you do understand the responses.

I find I have to write down everything I want to say at my appointment too, to ensure I don't forget anything because my mind goes blank as soon as I walk into somewhere medical.

I also need to write responses down.

Sometimes I am asked about family history or my own medical history. I also take a copy of any medications I might be taking and if I am allergic to anything.

The Leukaemia Care website has lots of information and details of their support services in the UK on it.

There is also a Leukaemia Care Webinar - 3.30pm 17th December - Making the best of your CLL medical appointments, which might help as whatever your diagnosis many questions are the same. If you are not in the UK you might have to work out the the timing for you.

The main thing is to be kind to yourself and look after yourself.

This is your opportunity, go for it.

basketballmom645_US profile image
basketballmom645_US in reply to 2003UK

Thank you for your thoughtful response. It was comforting.

HAIRBEAR_UK profile image
HAIRBEAR_UKAdministrator in reply to 2003UK

Hi basketballmom welcome at this difficult time.. LGL is a rare condition and connecting with others with the same condition can be a challenge. I see from your posting and diagnosis just after Thanksgiving that you are likely to be in the US? The Leukemia and Lymphoma Society provide US based information and support and have some information about LGL if you are not already connected with them this may be of help. LLS have a network of support groups and provide peer support that may be useful if you are in the US lls.org/leukemia/large-gran...

No question is a silly question, it is very difficult trying to understand what this all means and during diagnosis and follow up learning what type of LGL you may have. Many of us here in this group live with chronic leukaemia of differing types and I am sure will chip in for you.

Both types of LGL may be slow growing. This can involve a period of active monitoring (watch and wait) and treatment may not be required for some time, which can help give you time to understand your version of the disease. If you have faster growing LGL, treatment may be required sooner. The Leukaemia care booklet does reflect UK clinical practice and support contacts, but may also be helpful to learn more about this group of conditions before your appointment: media.leukaemiacare.org.uk/...

Keep asking questions and keep us posted

BW

Nick

basketballmom645_US profile image
basketballmom645_US in reply to HAIRBEAR_UK

Thank you for sharing this information.

Norwich1 profile image
Norwich1

Hi. I was diagnosed with T-cell Large Granular Lymphocytic Leukaemia in October 2021. At the moment, my condition is managed in primary care with regular blood work. I will receive any treatment, when needed, in secondary care. Do you know what type of LGLL you have?

basketballmom645_US profile image
basketballmom645_US in reply to Norwich1

Same…T-Cell slow growing Large Granular lymphocytic Leukemia. Currently no treatment is needed. I have a ultrasound of my spleen next week and my next labs are in 6 months.

I don’t know what type of LGLL I have yet. I’ll keep you posted. It’s nice to hear from someone who shares this diagnosis. Thank you for responding.

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