new to group

diagnosed in 2001 aged 43 with cll, been on wait and watch with 6 month bloods and consults.

Now I'm heading for treatment as I have extensive node involvement in chest area, extremely enlarged tonsils , persistent cough/ breathlessness and fatigue. Been told I am now classified as having small lymphocytic lymphoma.

on a side note cll runs in my family, Dad was diagnosed aged 73( late stage)died aged 78, uncle ( dads brother) diagnosed aged 60 and my 1st cousin ( Uncles son) diagnosed aged 47. I have 5 siblings, 2 daughters and 16 direct nephews and nieces we are all holding our breaths praying for no more diagnoses but don't like our chances.

2 Replies

  • Hi fisaunders,

    Welcome to the group but sorry it's at the time when treatment is looking necessary for you, particularly as you are so young! It's so unusual (and unfair) to be diagnosed at 30. I also appreciate your concerns that the condition may be familial but pre-warned is pre-armed and I remain very optimistic about future successful treatments for CLL.

    Having been diagnosed since 2001 I know you'll have done your homework on this but my questions in your position (and mine when the time comes) would be has a specialist opinion been sought and has a FISH test been done to profile my unique genetic presentation. Obviously that's important in order to predict suitability and maximise success of treatment. Is it FCR that's being suggested or any other options being explored? I'm not sure which country you are from.

    It's a tough time for you fisaunders but it sounds like the bulky node involvement must be making life difficult now and treatment can offer spectacular success to ease the symptoms you have. Make sure you're absolutely confident with your Consultant and don't be afraid to seek a second more specialist opinion if you feel it's needed. Ask all the questions you need answering and make sure you feel happy with the answers.

    And the positive thing is the treatment advances coming on line in the future should you or anyone in your family need them. It's cold comfort I know but CLL is firmly on the scientific radar now and I'm certainly hoping that the future treatment landscape will be more individually tailored. I'm on W & W and like others on here, totally understand what this pivotal time in the condition signifies in so many ways.

    Please let us know how you get on. Sending tremendous best wishes to you and your family for a successful outcome and a return to really good health.


  • Hi is your family on a research programme somewhere? because they must be interesting from a research point of view. At a research programme you are much more likely to get on a trial where you are more likely to received the best medical care. Good luck

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