My husband was diagnosed with CLL 5 years ago . His CLL doctor did not recommend treatment being his numbers were mostly stable and kept him on "watch and wait" while also having a swollen spleen and swollen cervical lymph nodes. I previously posted several months ago of my precious husband's unexpected passing due to an unknown heart related issue and recently came across his Fish Panel Results while reviewing his medical records. If someone could possibly share and give me a better understanding of these results as it pertained to his CLL/ prognosis, it would truly help me to have more closure. Thank you so much
Written by
Debcap61
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I hope it helps you to know that your husband's CLL markers put him at intermediate risk, not high risk. While using these prognostic markers can only be statistically indicative, he could likely have expected to need treatment within about 5 years from diagnosis. CLL researchers have recently done clinical trials to determine if starting treatment with targeted therapies earlier than recommended by established guidelines, could be more beneficial. Unfortunately that didn't prove to be the case. Accordingly, the iwCLL 2018 guidelines remain current and don't recommend earlier treatment, even for high risk patients.
Those markers match mine, except the Zap 70+; CD 38+ and UnMutated all three are nearly the same thing.
From what I have read since 2008 when I learned of my genetics, what AussieNeil says is right on target. The Trisomy 12 makes us intermediate, the UnMutated means we will respond and relapse faster than the Mutated folks.
If your husband's serious conditions included a lung infection or other breathing issues it might be related to his being immune compromised, but I am not certain that heart conditions are connected.
That said, over the last 5 years, we lost two friends to sudden heart issues. One of our Volunteer Moderators MsLockYourPosts and another well known CLL advocate undergoing CAR-T therapy.
I am sorry for your loss. My markers were same except I am Zap 70 and CD 38 negative although unmutated like your husband. I also have notch 1 which carries a higher risk of transformation. Not sure if everyone is tested for that. My specialist believes in early treatment if notch 1 mutation is present but it is not the standard. I started treating when I was still stage 0. Minimal side effects from treatment.
I have those markers plus Notch 1. My oncologist calls me "high risk, but not the highest" I was diagnosed in 2012 and have done well on Ibrutinab abd Venetoclax. Currently in remission.
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