Remission...

[peas50]

Is it at all possible for CLL/SLL to disappear without medical intervention? Although I still have swollen lymph nodes (neck, armpits, etc), my WBC are getting better with every blood test. It's gone from 8.9 to 5.6 in three months!!!

[Cllcanada Top Poster CURE Hero]

Lower is good... but blood counts don't really tell the whole story...

WBCs can vary a great deal test to test. Look for trends over a year or more. You should track your absolute lymphocyte count (ALC) , it is a better indicator in CLL.

Under 30K absolute lymphocyte count (ALC) bounce around... for all kinds of reasons, mostly to do with immune responces...

To answer your question... I had a spontaneous regression... my absolute lymphocyte count (ALC) went down from 136K to 42K, then started to climb slowly over 3 years....

Why?... my guess exercise and weight loss (120 lbs)...Nobody knows...

There are documented case histories of CLL patients having spontaneous remissions and regressions... here today, gone tomorrow, but it is quite rare...

~chris

[gaillebrennan in reply to Cllcanada]

CLL W&W 6 YEARS UNTIL I FELL OFF A HORSE 2 YEARS AGO AND DROPPED INTO A MEDICAL NIGHTMARE: 6 SURGERIES, PLATELETS 1,700,000, BONE MARROW 90%, PNEUMONIA, 2 HEART INCIDENTS FROM LODGED BLOOD CLOTS. TRIED IMBRUVICA 8 DAYS BUT HAD SEVERE REACTION. I TURNED DOWN CHEMO. ONLY ON BLOOD THINNER. NOW 3 MONTHS WITHOUT TREATMENT AND I'M IN SPONTANEOUS REMISSION!!! CLOSE TO NORMAL LAB COUNTS, CAN'T BELIEVE I FEEL GREAT. READ THAT THIS IS RARE, IS IT?

[peas50 in reply to gaillebrennan]

Hi Gaillebrennan. Good grief...that's incredible!!! This is actually one of my older posts... I've been back on 3 monthly appointments for the past 12 months or so. My CT scan (two weeks ago) reveals a reduction in the size of my affected lymph nodes from the top of my chest to the lower parts of my body. There are some newies appearing in my neck/throat region and a couple there have slightly increased, however they're 'of no real concern at this stage'. I'm still aiming for a spontaneous remission, as I believe it is possible. Thrilled to hear your news about your remission. Stay off those horses though! Thanks for replying, Jules from Oz. x

[kaymack]

I had a significant drop in my ALC number at one stage while I was on W&W. My haematologist speculated that I may have had a virus that affected it. It didn't last. Two years later, I had treatment (finished Dec. 2013). My ALC is now 0.42!

Kay

[Quarry]

As Chris and Kay say, blood results do go up and down. Trends over year+ are the important ones

There are a whole load of reasons why WBC numbers vary: low level (and often lasting many months) and un-noticeable infections will raise them (and so WBC drop when we finally get them out of our body). However, that is only one reason.

As Chris says, for us it is more about Lymphocyte counts (and ratio of Lymphocytes to WBC).

[ThreeWs]

Hi Matilda,

While anything is possible, it is a vanishingly small probability that your CLL will disappear. The "Bear" is dancing gently with you now and that is a good thing and it may continue for a long time. White Count patient obsession is an unreliable way to gage the progression of CLL. The cells in the blood, though highly visible, are not necessarily reflecting what is happening in the lymph nodes or bone marrow. This is why W&W is still the best strategy and why the number of cells detected in the blood are not in and of themselves a reason to treat.

May the Bear be lazy in his dance with you!

WWW

[peas50]

Thank you Chris, Kay, Quarry and WWW....Interesting info and love that bear reference. My goal is to become one of those rare cases...just a 'goal' - not an expectation of course Oh..and I think I should have said 'lymphocyte' rather than 'white blood' count. I was a bit blinded with excitement at that low number