I need help understand CLL

[Richie0619]

I was diagnosed with CLL I’m 58 ..my WBC is 20 to date and was at 12 ..3 years ago .i was told it’s elevating a low rate . How long do you think I have before treatment?

[Cllcanada Top Poster CURE Hero]

Difficult to say.. we are all different. Generally, CLL is not thought very progressive until the absolute lymphocyte count [ALC] gets over 30K. Then doctors may observe trends more closely, but it could be years....

They are looking for lymphocyte doubling time of under 6months... and will start collecting B symptoms...how you feel, nodes enlarging, fatigue, night sweats and so on.... they will also watch drops in platelets and hemoglobin.

They are expanding the BIG PICTURE....

~chris

[Richie0619 in reply to Cllcanada]

Thank you for making it a little more clear

[Richard_TX]

Hi Richie, I'm kinda in the same boat. I'm 59. My WBC count was at 13 two years ago. Now I'm at 21.

[Hidden]

I think you have 9 years, 4 months, 15 days 3 hours, 9 minutes and 8 seconds. Put me down for $20 in the betting pool.

Thing is, it would always be a guess. Even the doctors....a guess. I was Dx 17 months ago with supposedly not an aggressive kind...at Dx WBC 20K and ALC 20 and 17 months later WBC 40K and ALC 31 +/-. Funny part is I was stable until last winter when my numbers jumped in one month to the current level...but since then...about the same every month.

Scott

[Duncsn64]

Hi there I'm 53 my last reading was 24000 and lympnodes 13 around got swollen neck glands headaches feel stomach painsand sore jaw and teeth and sweats getting results of more blood test on monay i drop you a message of results mine started after flu 5 weeks ago and double antibiotics

[MsLockYourPosts Passed Volunteer in reply to Duncsn64]

Sore jaw is often the result of a sinus infection. If you have a fungal infection antibiotics won't help. Ask for cultures to determine what kind of infection you might be dealing with.

[Big_Dee]

testing posting

[very]

HI, Richie, my husband was diagnosed at 54 and did not require treatment until 2016. He had a normal healthy life until 2016 he had 6 months of chemo and other than a couple of short spells in the hospital due to infections during chemo is now fit and well. Just try and enjoy life as normal as cll may not raise its ugly head. regards Jenny

[slyford]

My husband has CLL and it was over 2 years before he had treatment after which he is now in remission.

[umpireman]

I did not start treatment until my 8th year after CLL diagnosis and I was reasonable well and active during that time. We are all different but my advice is not to rush into treatment. The day will come, but enjoy life now. John

[tryandtry]

As usual, CLLCanada (Chris) has the best technical answer - "we're all different, and it could be years". Just keep going to your CLL doc, and as umpire man says, "don't rush into treatment". Be thankful your WBC is only 20, as most of us would gladly trade places. You'll eventually get "there" (wherever that is), so ENJOY your life as much as you can, now. Again, as Chris says, "it could be years".

Gary

[CLLyochy]

Hi Richie, I am no clinical expert, but I am an expert husband of a CLL patient...

Yochy, now 58y/o has been diagnosed in 2014. her wcc grew quite rapidly, but our hemotologist always said he would only treat patients, not numbers. in most cases the counts increase over the years and as long as their is no functional deterioration you live with it. it takes a toll of slight weakness, maybe catching more common deseases than others but by and large you live with it under periodic follow up.

Yochy's condition begun to deteriorate at the begining of 2017. what looked at first like a flue, placed her in bed for a couple of months, lost almost 15% weight. one night she was feeling so bad we went to the ER where they found her WCC was up to 320. that is when she begun treatment. Now she is after treatment, feeling well, almost as strong as she was before the CLL begun.

But you need to remeber CLL does not go away, the treatment merely "rewound" her condition, counts will most probably increase again, hopefull this time with no deterioration and no need for treatment.

Another parameter to keep in mind is the rapid development for blood cancers. every year you hang on with out treatment opens better chances for more precise treatment.

I hope our personal story gives you some perspective on CLL.

[GMa27]

Dx @ 52. Was on W&W 12 years. Felt fine...no fatigue, no aches. WBC was 225k by last year, developed nodes during 10th year by 12th year marrow was too crowded and got anemic. Now being treated. Hopefully you will have long W&W. Get a CLL expert and try to relax in between blood tests/ check ups.