6 Years W&W...

[ChicagoDave]

Just thought I’d post for the benefit of noob’s around here. No need to panic when receiving your initial diagnosis.

Get advice on a CLL expert from others and you’ll be around longer (statistical benefit to having a specialist on your team). Consider a University which has access to clinical trials and has researchers on staff.

Your progression isn’t measured in WBC count alone. Your CLL specialist will monitor several other aspects of your health to determine when it’s time for treatment.

In my case, I just completed 6 years W&W. My WBC has steadily risen and stands at about 146,000. For me, it’ll likely be low platelets that drive treatment. The reason: as CLL progresses in your bone marrow, it can push out other blood components. Instead of generating the normal level of platelets, my marrow is slowly being filled up with dumb, bloated, ineffectual WBC. My platelets are about 117 now (140 is lower standard limit)

But... that still isn’t the full story. My platelets dropped but have stabilized the past few quarterly visits.

So maybe I’ll need to start treatment on the next quarterly visit, or maybe my WBC will continue the steady, slow increase and my platelets will remain stable a few more years.

After 6 years I’ve learned to not worry at all about CLL. I was diagnosed young (49) and stressed considerably since I had several young kids. I’d like to save a noob or two the stress by telling my story so far. What happens, happens. Live your life, and live, love, work, etc.

It’s very rare that a CLL patient has to make any immediate decisions.

Here’s to a new year!

[Hidden]

I was that rare case.

Nick

[ChicagoDave in reply to Hidden]

Nick -

You should feel free to share your story. It might help others understand the types of things that are unusual, triggering a more urgent case.

I think we all tend to assume the worst when starting our CLL journey. It is bad for some - and I certainly don’t mean to discount that - but not for the majority.

Please start a post if you haven’t already told your story.

Dave

[DMary]

What a kind thing to do ChicagoDave. It's not my story either but I was glad to read it. This disease is so very individual and it is important to let new folks hear about a wide range of experience. You've found a great perspective and I'm sure it wasn't easy. Thank you.

[DaleFL]

Thank you for sharing your story. We cannot hear your message enough times. 🙂

[yodajack]

Valentine’s Day will mark my 11th year of W&W. Or, it could be even more. I was admitted to the hospital for tests in 1995 for a high white count (appendix removed years earlier). After every upper/lower test possible over a week, I was released with no answers. Two things: they found a polyp in my colon which, most likely, would have ultimately taken my life - like it did my mom and little sis. Second they never called in an oncologist for a consult. So, the malignant tumor they removed from my left jaw was the only trigger for my diagnosis.

Fast forward to last year. Bad bellyache Oct 2016, MRI just to check things out, small mass on lung, and 4 weeks later removal of lower right lobe of lung. Mass was malignant but lymph nodes all clear. Still classified lung cancer A-0. Meanwhile, wife diagnosed with vascular dementia.

Bottom line; take the time now, however that applies to you, and experience some of the life you’ve always wanted to. Never die wishing or wondering.

[gp7591 in reply to yodajack]

yodajack- Thanks so much for sharing and I just said a prayer for you and your wife so the good Lord heals and strengthens you both. Wishing you good health for many, many more years... -G

[AAli]

Thanks for motivation In April this year I will complete 03 years in same W&W phase. My WBC in last test were 220/ HB11/RBC 3.9/Plat 223. Wish n hope that will be able to enjoy more treatment free grace period

[Dyverg]

I loved this post! I was diagnosed formally in Jan of 2012 (I was 45). My oncologist only saw me once a year. Every year he would ask me to return in 6 months and I would say, "but you only saw me once a year before..." and he would agree. This year he announced he's retiring and said if I was responsible and had my blood checked every 6 months with my primary he would release me from the cancer clinic...and actually gave me a NUMBER...numbers are just scary! "When your WBC reaches 50, then I want your primary care to refer you back to here." No one has ever really discussed actual numbers with me and over the two years I have chosen to "ignore" my diagnosis, but find I'm frantically trying to "get things in order just in case" because I feel I'm living in the dark. Your post gives me a huge sigh of relief. My numbers are great from what I can see and don't really understand why my oncologist would give me such a low number of 50 to pull a trigger on. Following AAli's written layout, my test were: WBC 36.5/HB 13.7/RBC 4.47/Plat 235. If I'm reading the numbers correctly, I should believe my body when it says it feels just fine, right?!

[mgh348 in reply to Dyverg]

Your ALC (absolute lymphocyte count) is possibly significant if over 30 and doubling in 6 months or less. It is the doubling time that indicates it becoming aggressive.

[ChicagoDave in reply to Dyverg]

You have to feel comfortable with your doctor and they should be a CLL specialist. Many local oncologists only see 1 or 2 CLL patients a year - my doctor has hundreds. Many here can help you find a CLL specialist in your area if you post your location. I “fired” my first oncologist because he didn’t explain things adequately to me and I wasn’t comfortable with what my status was. I ended up seeing Dr Steven Rosen, a well respected specialist who game me his cell phone number the first time I saw him.

Never settle for a relationship that results in you not knowing where you stand.

My current hem/onc is a CLL researcher who takes as much time as I need each meeting. She will never speculate - that’s not her nature as a researcher - but I probe and ask and we get to a point of understanding each time. I’ve learned to ask about the short term: “so based on what you said, and assuming my numbers don’t change from the trend they’re showing now, you think I’m probably ok for the next 3-6 months before worrying about treatment?”. It’s a fine line - but you have to be able to talk and be heard enough for your doctor to give you the assurance you need to enjoy the period until your next meeting.

Also - ask what they think will drive treatment FOR YOU specifically. Is it my WBC trend (doubling in 6 months)? My platelets dropping too much? Are any particular blood numbers or nodes or other things that you think will drive treatment? In your case you may simply be moving along slowly and they have no specific concerns - and they are only monitoring to see if things change significantly. If not, then maybe you’re ok for a long time. Your doctor should be able to explain what they are monitoring. Good luck!

Dave

[ChicagoDave in reply to ChicagoDave]

Btw my current CLL doctor has seen patients with WBC counts as high as 600,000 before needing treatment - it’s the trends and not the absolute numbers sometimes that drives a need to treat.

Dave

[Dyverg in reply to ChicagoDave]

I figure when/if (optimistcally) I ever get sent back, I'll ask for a referral to Moffitt. I live nearby and I know they have one. I asked a nurse once about getting a CLL specialist at the cancer center I was at and she told my doctor was the one. He was sweet, but not informative at all. My ALC was 31.4 in Sept but it was only 24.8 last year same time, so certainly not doubling.

[gemit2000 in reply to Dyverg]

similar to you and Dave I'm about 6 yrs W & W. Recently I left my hem/onc mainly for the crime of twice saying, "looks like this is the year you'll need treatment" which he solely based on my WBC number, a # that had never come close to rapid doubling (year by year it was about 10 to 16 to 23 to 32 to 43 to 55 to 68 with RBC stable, platelets and hemoglobin still normal - down from 250 to 170 and 16 to 14 respectively. Meanwhile, similarly to Dave, my stress level has similarly gone down, at an even faster rate than Hb and Plat - so much so that sometimes I now forget to check lab results that have been sent to me days ago and then look at them without any of the previous dread or apprehension I used to approach them with.

So given my WBC and Dave's, who has WBC about twice as high as me (while yours is about half of mine), as well as his doctor's anecdotal patient who had WBC more than 4 times as high as his w/o Tx, I don't like any doctor using any WBC # to determine any action whatsoever. Only exception is when an ALC # has doubled or is close to doubling in a short time like 6 mos. But WBC on it's own? Some start Tx when WBC is 30, some haven't started and it's 600.

And what that has to do with might be more of the type of Cll you have - what "bucket" you're in. Are you IgHV mutated? What chromosomal deletion - 13q, 11q, trisomy, 17p, other(s)? Co-morbidities? Age? Other genetic markers? These prognostic indicators will tell you more than a simple number that is rising.

To determine proximity to treatment, it is symptoms like large nodes, abnormally low Hb and Platlets, and life-altering quality of life issues that normally trigger your alert system that tells you to start planning. But perhaps most important is to find a CLL specialist who knows this and shines light instead of keeping you in the dark, allowing you to ask questions while giving intelligent understandable answers. And hopefully he'll keep you apprised about when an appropriate stress response that necessitates action is warranted.

When it comes to relief both Dave and I seem to be all sighed out. And given that your numbers appear to be the best of all of us 6 yr W&W'ers, my opinion is that your last sigh of relief should carry you on through for a long time to come.

(mutated) Gene

[Dyverg in reply to gemit2000]

Love It! Love you! Love all you peeps!

[brees in reply to Dyverg]

@ Dyverg I'm new to this site

What is AALi's written layout? My husband (51) was diagnosed in July 2017 we go every 3 months to the doctor for labs. Our doctor basically says that we are W&W until #'s start to double. But I'm not sure what numbers they are looking at. I know each case is individual, but sometimes it helps to compare to others. We have had the fish test but not sure we understand it either. Any suggestions??

[Dyverg in reply to brees]

Many of the posters have a way of writing their stats (Aali was the poster whom I was following). That's what I was referring to. I'm in the same boat as you, even though I have five years of WW under my belt. I don't really know where I stand in relation to how worried I should be.

I will say, if you search posts and ask questions here, these people are fantastic at answering and helping and pointing you towards good information. We were all new once.

I read things here, bookmark to read later and ignore this place when I'm bummed or reach out for assurance. Don't be afraid to ask questions. These are wonderful people who will guide you.

[lankisterguy Volunteer in reply to brees]

Hi brees,

I suggest you start your own post- as suggested in the first "Pinned Post" upper right side of this page. Recently diagnosed or a newcomer? Please Introduce yourself!

Then we can respond to your questions better without complicating this discussion.

I will add to Newdawn's comment on WBC vs. ALC, just below.

There is extra noise from varying Neuts that affects the WBC. So the better measure is ALC, aka Lymph# aka Absolute Lymphocyte Count.

Once the ALC is over 30 aka 30k ( 30,000 ) then the doctors will watch how fast it doubles. If it doubles from 30 to 60 in less than 6 months, then treatment will be sooner instead of later. If it is over 1 year, then you have lots of time. But they will never treat just based on a specific number (ALC or WBC). They just watch for symptoms, nodes and declining Red Blood components more closely the higher the ALC goes.

IMO- the only thing that the ALC doubling determines is how frequently you will see the doctor (e.g.: every 6 months, every 3 months or more frequently).

Len

[Newdawn Administrator]

There’s a high emphasis on the WBC level in this discussion when in reality it’s the Absolute Lymphocyte Count (ALC) which is the key indicator for doubling. The WBC can wax and wane and is subject to fluctuation. My haematologist doesn’t concern himself too greatly with the WBC in isolation.

Once over 30, present guidelines suggest treatment ‘discussion’ is required if the ALC doubles in 6 months and is indicative of a more aggressive course and probable treatment if it doubles over a 2 month period. However, many other labs are taken into consideration particularly platelet and RBC/Haemoglobin levels. It’s more about trends than numbers.

Regards,

Newdawn

[ChicagoDave in reply to Newdawn]

Ha ha good point - I’ve really become relaxed about this. Yes my ALC is what I monitor, and in my case it is taking a few years to double, so I wasn’t paying attention when I wrote my post.

If anyone has a link to a good post on reading bloodwork and genetics, please post it.

Dave

[Newdawn Administrator in reply to ChicagoDave]

This is a very good link on understanding blood work;

cllsupport.org.uk/cll-sll/s...

Newdawn