How Long Can I Live with CLL? (Chronic Lymphocytic Leukemia) | The Patient Story

How long can I live with chronic lymphocytic leukemia or CLL? Top leukemia experts say many patients can live for decades with CLL without needing treatment! In this video, they discuss the impact of age, disease biology, and genetic tests on your prognosis.
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[@Buttie2003]

I have just been diagnosed with CLL. I also have heart failure, Bronchiectasis and diabetes. I am feeling very positive.❤

[@johnf8609]

I was diagnosed 4 years ago. My WBC is now over 100k. I'm at the gym 5x week taking cardio classes, yoga, and resistance training. Plus I walk 5-7 miles a day. I had COVID a couple of years ago and WBC dropped down to 19k from 60k at that time. I was in the ICU for five days. The doctors couldn't explain why my numbers dropped and now creeped up over the past 2 years. I feel pretty good for being 68.

[@brianmorris2643]

Diagnosed 2 years ago..unmutated...wbc now at 157000...still active, working our walking..RBC starting to drop..low B12..I suspect if can't be corrected treatment will be recommended..hoping to hold out a while longer..if the RBC can be raised

[@AlanCornett-vm7bd]

Wow

[@water2wine1]

My cousin has been living with this illness for about 20 years now.

[@ThePatientStory]

That’s amazing!

[@Travelin2Wit]

How I found I twd pan creatic cancer

[@Travelin2Wit]

How I found I had pancreatic cancer

[@AlanCornett-vm7bd]

Without treatment

[@burtjason208]

I was diagnosed with CLL 2 years ago. My counts at the time were a white blood cell count and absolute lymphocyte count in the low 20s. After 2 years, my counts (WBC & ALC) are both in the upper 20s. No symptoms yet. Fingers crossed.

[@dalegribble60]

Diagnosed at 63 and WBC sits at 13.5 x E9/L. Still feeling like a young 64 year old always exercised and watched what I ate. Currently taking brisk dog walks for an hour a day. Noticed enlarged lymph nodes 2 months ago. No pain and no symptoms yet. Blood work showed a slight raise but doctor still wants to "wait and watch" or what I like to call, "wait and worry." Started taking 2,000 IU of D3 vitamins daily for fun. Winters are hard up Northern Canada so many people are deficient anyway. CLL is a total mystery.....

[@Beepinsqueekin]

My mother had CCL for 4 years and passed away in 1998 at Age 69

[@anneastley7600]

Diagnosed 12 years ago....no change. Often question if I got a correct diagnosis?

[@DoitToday-m7u]

Whats ur age now?

[@DaveCLL]

What is needed in the "modern" era of CLL treatment is a longer term comparison. I'm speaking of treatments not involving chemo. And the comparison should be against a general age matched population. For example, at age 65, compare the percentage of deaths for CLL patients with the general population. Then do this at age 70, 75, 80..... The gap between the two populations would convey some idea of the impact of CLL on mortality.

[@JAS15000]

"Some patients are unaware that CLL varies from person to person depending on the affected gene. There are dangerous genes where the disease progresses rapidly, and there are genetic mutations where the disease is almost inactive."

[@KashanandHaribHkkids]

I am cll patient since last 5 years Stage biant A Wbc 40,000 Hemoglobin 14 Platelets 250k No any symptoms No medicine i used

[@InaLouw-cv8dc]

I am cll patient since Nov 2023 watch and wait stage no meds

[@rizzyboss]

@@InaLouw-cv8dc is it terminal?

[@vishalwarale5937]

Is ur lymph nodes get swellon

[@bryanross2289]

Cll is incurable however with the new treatments it can be controled like high blood pressure.​@@rizzyboss

[@saeedabri]

My Dad past away at the age of 68 he lived with this terrible disease for 10 years, after he was given FCR chemo he did not recover.

[@colleenmisner454]

My cancer marker total is 18. I can’t find anything on the internet on the total. Does anyone know

[@emma840406]

Is Adam Kittai a hungarian guy?

[@sassylynn9675]

I'm a CLL cancer patient for almost 2 yrs in January. I m on a medication called imbruvica,at 3 pills a day. I was told l will be on this for the rest of my life. Anyone else on this?

[@bryanross2289]

If your on imbruvica their are trials going on that you stop the inbruvica and you get ventoclax for 6to12 months and you get to mrd negative and you can stop treatment.

[@ricksollitt1578]

I was on imbruvica until I was changed to calquence. Possible tgat Imbruvica was causing my chronic diarrhoea however, eventual diagnosis turned out to be Crohn's Dusease rather than Imbruvica. I have had great results with lowering of counts with both Imbruvica and Calquence. Started Imbruvica 2015, changing to Calquence 2021. I am 65, diagnosed 30 years ago in 1994. My bloods are good. I feel well. Even 3 bouts of Covid haven't stopped me!!!

[@AlanCornett-vm7bd]

Does it work

[@ricksollitt1578]

@AlanCornett-vm7bd I believe it does Alan. I started daily meds in 2015 with a count of over 100k (Australian system). I'm now back in the normal range. Of course, as you most likely understand, tho normal count, cells remain immature due to nature of this condition. I also, starting approximately 2 years ago, get monthly IVIG. Boost immune system. No cure, but life is good and reasonably normal.

[@marlenejones6266]

My daughters white cell was 159000 last visit. She is 41. Her Dr's said she has had it for over 20 years. I'm worried she will die soon. She is severely anemic.

[@laurenl.6291]

I'm so sorry to hear this. I hope she has a long life ❤

[@TrudyContos-gq1bw]

No one here is stating which subtype they have their are several!?

[@JAS15000]

"That's great, but I have a question. How old are you? And what are the affected genes in CLL? Which gene is affected in your CLL? Because CLL is a chronic disease with different genes for each patient. Which gene do you have?"

[@joannboyd8855]

Smh

[@marlenejones6266]

Oh I'm sorry but your voice just hurt my ears