Husband diagnosed with CLL and trisomy 16

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Dear friends,
Last year my husband was diagnosed with Chronic lymphocytic leukaemia (CLL) and some strange markers, including trisomy 16. To my knowledge, he hasn’t had any symptoms yet, although he tells me his oncologist has only given him a couple of years. He’s 61 years old. I don’t understand the complications of the strange markers and so I am not sure how long he really has. He does absolutely everything the doctors tell him to do, including lots of exercise, perfect eating, gets all of his vaccines, takes supplements, etc. Has anyone in this group had Chronic lymphocytic leukaemia (CLL) with other markers including trice 16?

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Hi @Cocosmom I am so glad you have found us.
Having read your post it sounds to me, and I could be wrong, that you have not been to any of your husbands medical appointments and are getting all your information through your husband.
For me it would be a complete shock to be told that my husband, of only 61yrs old, had been told by his oncologist that he only had a couple of years.
I always think it is so difficult with a ‘hidden disability’ too.
When I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago. The medics did not test for markers or anything else in those days.
Do you think your husband would let you go to his next appointment with him?
Then you could write down all the fears, questions and practicalities that you would like to have answers too, I find being ‘pleasantly assertive’ and ensure you are happy with the responses before leaving.
Blood Cancer affects the whole family and you as the partner/carer.
I will copy your post to the Blood Cancer support nurses as well @BloodCancerUK_Nurses
The Blood Cancer UK support line is there for you on 0808 2080 888.
Please do look after yourself as well as you do your husband and do keep posting

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You are an angel. I did ask him and I will attend a Dr. appointment.

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I can only echo what @Erica has said. I found it really useful having my husband attend appointments with me. It helped him to understand and was good for me to as I only ever heard bits of information as I always always so worked up.
Please let us know how you get on.

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Dear @Cocosmom
Thank you for posting and reaching out to our forum community.
May I ask whether your husband has commenced any treatment or is he being actively monitored?
It is really good to hear that he looking after himself so well and this is very important when managing a diagnosis with or without treatment.
Where you able to attend any appointments with your husband so that you could hear what is being discussed? I would recommend this as often these appointments are full of information and often require two people to digest everything. Prognosis for Chronic lymphocytic leukaemia (CLL) and many other blood cancers is challenging and it is very much dependent on:

  • your diagnosis, including the type of blood cancer and the results of specific tests
  • the stage of the disease when you’re diagnosed
  • your age and general fitness.
    Prognosis for CLL | Blood Cancer UK
    In relation to the markers you mention, this is something that we would recommend discussing with the Haematology team, either the Doctor or the Clinical Nurse Specialist as they will be able to explain the significance of this in relation to Chronic lymphocytic leukaemia (CLL). Trisomy 16 is a chromosomal abnormality in which there are 3 copies of chromosome 16 rather than two, unfortunately I do not know the what this means from a Chronic lymphocytic leukaemia (CLL) perspective.
    If you would like to talk this through or get any support from our team please do not hesitate to get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
    Kind regards
    Gemma
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