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T_LGLL

Carolh
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Hi my daughter has recently been diagnosed with T_LGLL she is 43. She has quite a few lumps in her neck and she gets very tired and seems prone to infection and joint pains.  The consultant has ordered a bone marrow biopsy and it scan on her stomach.  We are so worried about her and there doesn't seem much information, is there anything she should be aware of ie treatment.  I'm gathering it's rare as on the forums the conversations were 3 years old and the sufferers were in their 60s. Kind regards Carol 

  • Hi Carolh,

    Thanks for getting in touch. My name is Fiona and I’m one of the Macmillan cancer information nurses. Welcome to the online community.

    I’m sorry to read about your daughter’s recent diagnosis of T-LGLL. You’re correct when you say that this a rare form of blood cancer and that the average age of diagnosis is 60. For most people this will be a chronic condition.

    Blood Cancer UK have information that you can read here.

    You may find this information from the Leukaemia & Lymphoma Society of interest. Please be aware that this is an American organisation.

    Once your daughter’s consultant has all her test results, they will be able to talk to her about her treatment plan. As this is a rare condition her specialist is best placed to discuss treatment options.

    Supporting someone with cancer can be physically and emotionally exhausting. I hope you are taking time to look after yourself. You are always welcome to call and speak to one of our nurses on the Support Line. We often find that talking things through can help.

    Often talking to others going through a similar experience can be helpful to do. There is nothing quite like the support that you can get from others who know what it’s like. We have a great online group that you can join. 

    I hope this information helps. Please feel free to get back in touch if you want more information or support.

    Best wishes,

    Fiona P,

    Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email. 

    Ref: FP/SS

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