Introduction

I am a 66 year old CLL patient. I was diagnosed in 2014 and am on "watch and wait". I am currently asymptomatic and doing just fine.

My genetic markers are unmutated, Zap 70 positive and Trisomy 12 and I am considered an intermediate risk patient with an average life expectancy of 6-9 years.

If there is anyone in here with similar markers, I would be curious to hear about your journey. Also, if anyone has any input or questions I would be happy to hear from you.

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  • I was also diagnosed in Oct 2014, and have the same intermediate markers as yourself, hopefully with all the new treatments we will have a lot longer than 6-9 years, I am 56 with alc of 10 , wbc 19, swollen lymph nodes in neck area , so like yourself I am relatively new on this journey and doing fine

  • I wish you all the best and hope our journey is long and uneventful. There are a lot of good things happening in the CLL community which should give us a lot of hope.

    If you are not aware of the site, check out Patient Power which is a CLL blog with lots of good information.

  • I was just recently diagnosed in Aug. at the age of 34. I too am Unmutated, T12, CD38 Neg. and RAI Stage 0 in W&W. With all the new treatments out there things are looking pretty good for us CLLers and I plan on being around for a long time.

  • Hi Luke. Wow you are an early bloomer. Sorry it has come to you so young but it sounds like you have a great attitude and there is so much good happening in the CLL world to give us all a lot of hope.

    If you aren't aware of it, check out Patient Power which is a CLLblog with lots of great information.

    All the best to you.

  • I was diagnosed 2013 though I had poor blood reading for 10-12 years prior to my diagnosis , this is now accepted as late diagnosis . Im now 69 and your life expectancy of 6-9 years has near death and I assure you Im not. I beleive you can increase your life expectancy further

  • Hi Brad. That's good news! Keep on trucking.

  • I am 71 and was diagnosed in 2012. Also Zap 70+, but I plan on living to 90+ years. Fuck cancer!

  • Great attitude South Florida Lady. I believe you will. Are you a watch and wait or have you already had some treatment?

  • Hi RK66,

    I'm 67 also T12 UNmutated, diagnosed in 2008, and on my 3rd treatment, and don't expect to die in the next 3 years.

    While we UNmutated T12 may need treatment sooner and more often then the T12 mutateds, we have far more options than even 2 years ago.

    I suggest you limit your Google searches to articles published in the last year.

    Those 6-9 year survival estimates are ancient history. (CLL treatments are like cell phones or computers- if the data is more than 18 months old- it is obsolete!).

    To get more current info, I suggest you use the links available at cllsociety.org/cll-links/ to get more accurate data.

    Len

  • Hi RK66, I'm 67 diagnosed in Oct 2014 with a low count was the best I got from my specialist at my first visit & even on my 2nd review when my count had gone up by a few the best I got was in the letter to my GP which said "good prognosis", so I'm interested in the level of detail you've received. Was this from Dr's in the UK or somewhere else in the world?

  • Hi Alex. You should ask your doctor for more information. It does; however, sound like you received good news by the words "good prognosis". I assume that means your genetic markers were good. My markers were of the intermediate risk group. My cousin had CLL and lived with it for about 25 years. He always explained it as "an annoyance" and never seemed to worry about it much.

    I was diagnosed by doctors in the United States. I agree with the others in here that the 6-9 years may be outdated. It was only an average and I expect to live much longer. I still am on watch and wait. It's best not to worry but to go about your life, which is sometimes easier said than done. To date, I am two years in and have had no treatment yet. I'm not sure when I first got this. It may have been three years ago. All the best to you.

  • RK66, Thanks I thought it might be the US, the Dr's here in the UK tend not to give out too much info, even under questioning which I've tried & I don't think they will until I'm getting nearer the need for treatment.

    Currently I'm trying to keep myself as generally fit & healthy as I can to try & stave off treatment for as long as possible.

    Thanks again for your reply & may your journey be every bit as long as your cousin's.

    Take care & stay strong.

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