Just got further test results back and heard I have mutated IGHV and unmutated TP53. IPI stage 0. The consultant said this is a positive outcome and go onto a regular test regime with next test in 6 months.
Are there any other tests I should be asking about?
And interested in the experiences of any others who might have had these test results in the past. The doctor plays it very positively and predicts a more or less normal lifespan (I'm 51) but I'm also wondering if she may just be trying to make me feel better.
Written by
Fred_Green
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Worth asking about (13q), deleted(13q) is a "good" marker that with your other good markers may indicate that you will never need treatment and if you do you can expect to respond very well.
You need vaccinations. This letter is UK NHS "best practice". At least one east midlands NHS hospital falls far short of "best practice". Testing depends on how your hospital runs it, some like Oxford place it back with GP, others keep it in clinic. You need a copy of a letter with your CLL diagnosis [1] and this GP letter to ensure your GP gives you the correct vaccinations.
[1] I couldn't make my GP receptionists take any notice of my requests for vaccinations with just the Macmillan guide I was given at first Dx (which is incorrect anyway) until I showed them the Dx letter.
I have ongoing problems with my surgery receptionists.. It needs a specific letter from consultant to get anything inspite of the green book reccomendations.The gp has no input atall in my surgery grrr
I don't believe she's being unreasonably optimistic, if that's your concern (like she's stringing you along). At fifty-one, you are open to many steps of treatment options now, along with the advances waiting in the wings.
I think I can relate, we hear 70-75 as the median or mean I forget which, so I was like, "great I might use up all my chances before I see much more of life".
Remember, these are statistics yes you are a number, but where you were, are, or will be are not locked in. Playing the percentages can be good for ball-parking, but don't hang you life on a number. We all have different tolerances and priorities. So, check with your health professionals, make a plan that feels good to your gut alone, and then do or not do what you want. 🙂
Same markers as you, plus CD38 negative on flow cytometry, "normal" karyotype on FISH (that is, not 13q del, Trisomy 12, 11q del or 17p del). Diagnosed at stage 4, age 53. First treatment 11 years later. So your doctor is right to "play it positively".
You have the advantage of knowing your TP53 and IGHV results soon after diagnosis. I had to wait 10 years and was then only able to have that testing done, thanks to a charitable donation, so those approaching treatment could learn whether the older chemo treatments still in use in Australia, were likely to work, or whether trying to find a clinical trial for a targeted therapy was best.
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