ALC Doubled

[Cave123]

OK...officially in panic mode....my ALC doubled within 1 year, 5.6 April 2022 to 13.1 April 2023, so actually a bit more than double within 1 year. I have often read that this is not as much of a concern if below 30, however, still upsetting and definitely headed in the wrong direction. At this rate I'll be at 30 within a very short period. I have a phone consultation with my doc on Tuesday, so I'll get his opinion about this at that time. Any thoughts or suggestions of what to ask my doc are welcomed from this fabulous team. (hemo & plates are within normal range) Thank you, stay well everyone, CAVE

[Cammie]

your new level is still pretty low and concern is usually when count doubles within 6 months.

You must also be aware that wbc or alc is not the deciding factor for starting treatments. The holistic view of B symptoms, how you are coping with things such as night sweats, fatigue and your current situation re lymph nodes and internal organs such as spleen, liver and kidney function is all taken into account.

Worrying about blood counts on their own is counterproductive and can be misleading.

Take a breath !

[Cave123 in reply to Cammie]

Thank you Cammie. Yes...breathe....😐 very good advice - all else is good for now, just getting over a chest cold (still lingering) which also may have been a contributing factor to the raised ALC but even with that my doc has predicted this will be a slow but steady rise of my ALC. Hemoglobin and Platelets are good, no fatigue, occasional night sweats which can be caused by several other things including stress, ya I have some of that. I just moved from monitoring blood every 3 months to 2 months so I plan to monitor the trend but yes as you said, a holistic viewpoint should prevail here. Thank you so much for responding to me - stay well CAVE

[Newdawn Administrator]

Hi Cave,

I found increases more alarming at the very early stage but be assured your ALC increase is incredibly small despite you seeing it as doubling in a year. You started at barely over the minimum number for dx and an increase in 7 over a year is pretty tiny in CLL terms. You cannot assume that it will double every time but frankly I never saw an increase that small all the time I was in W&W and it took me 7 yrs to go into treatment. Levels ebb and wane especially when they reach much higher numbers so try not to dwell on this indicator as the ‘doom marker’. It certainly isn’t 😊

If you are feeling well as Cammie has said and the other labs are within good limits, it could be many many years before treatment is even discussed. I wasn’t even diagnosed with CLL until my lymphocyte level reached 12. I’ll be surprised if your specialist is overly concerned at all when you have your consult. At this stage you are just one of his very low level, monitoring patients but of course he should appreciate your anxiety. I recall crying in the hospital car park when my ALC went up 9 points and I can smile about that now but it seemed a catastrophic trajectory to me at the time.

You’re doing well. Be calmed.

Best wishes,

Newdawn

[Jmiah717 in reply to Newdawn]

I'm with Newdawn, those numbers are still pretty good. It took me nearly 15 years to get to treatment with numbers similar.

[Cave123 in reply to Jmiah717]

If it takes 15 years for me as well that would be good. That's a really slow progression - you are one of the lucky ones. Thanks for responding - all the best, CAVE

[Cave123 in reply to Newdawn]

Thank you Newdawn. You are absolutely correct. I just got off the phone with my doc, I am one of his low level monitoring patients, I know he has lots of patients far ahead of me in terms of their cancer stages and who are in treatment. He also knows I have a lot of anxiety about this b/c my mother passed away of a Lymphoma when she was 35 years old, I was 3 years old at the time. He is straight up and tells it like it is which I appreciate, he doesn't sugar coat anything and provides a very practical perspective, right now he says its just watch and wait and try not too be too stressed. He does predict that I will be in treatment within 4 to 5 years, but of course as we all know, this disease is very uncertain. Your story about the hospital parking lot put a smile on my face, not that you cried but how you can look back now with clarity. I get some anxiety before appointments and it only increases between the time I draw blood and the time I receive the results - that's a stressful period. Last week I was at work when I got the call from the hospital staying the doc wants to set up a phone consultation to discuss your bloodwork....well as you can imagine I thought it was pretty bad, its not like he's gonna take the time to call me to say no change all is great. We actually has a good discussion, considering doing more tests and trying to yes be calm and take it as it comes. Thank you so much for responding to my post and providing such wonderful insight. Stay well - CAVE

[MisfitK]

Deep breath. You really don't need to ask him anything, b/c nothing's wrong. About the only thing your trend may imply is that you won't be one of the lucky ones to avoid treatment down the road, since your disease is not indolent. That's it. With your numbers (which mimicked my 1st year), you can have many years still before treatment. I'll be starting Year 4 W&W at the end of July, and I'm nowhere close to treatment.

[Cave123 in reply to MisfitK]

What are your numbers like now 4 years later ? Any B-symptoms ? Thanks CAVE

[MisfitK in reply to Cave123]

So, it's more like 3 years later, b/c I count my "start of year 1" from my diagnosis:). That said, my numbers are now almost exactly where they were at the end of year 1...

At diagnosis: July 2020 - ALC 7.5K

CD 38 - 65%

IGH/CCND1 [t(11;14)] gene rearrangement

Loss of TP53 (~deletion 17p) tumor suppressor gene

At the end of year 1 (July 2021) - ALC 13.92K

Highest ALC (Dec 2021) - ALC 19.08K (almost repeated Nov 2022 at 18.36K)

Most recent ALC (Mar 2023) - 14.09K

Spleen was 13.7cm at diagnosis (Sep 2020 CT)

Spleen was at 14.5cm after 2.25 years (Nov 2022 CT)

As for B symptoms, very few. Occasionally, I get tired. Occasionally I don't feel like eating much. And I bruise easier (and have an unexplainable one every now and then), bleed more when injured, and have crappier nails. And I take a lot longer to get better if sick. But overall, I'm doing great. I credit a lot of that to the people who send thoughts and pray for me, and to myself for putting my own health 1st, instead of being the self-sacrificing mom. At diagnosis, I was in a pretty bad way, having previously "recovered" from a bad bout of Covid, and getting one of my food allergies diagnosed almost at the same time (the 2nd coming after another illness bout a year later). So, I went on a wild anti-inflammatory path to try and calm my body down, and I've continued that to this day, although I'm a little more relaxed about it. With my markers, I (and my doc, I'm betting with my 6 weeks appointments) was sure I was gonna be in treatment in my 1st year, but I did decide that if I was gonna be there, it was gonna be b/c I had already tried what I could do and it didn't help, since as a 17 deletion, treatments are fewer and farther between and treatments tend to be more lifelong.

To simplify what I've done, it's "be consistent" - consistent and nutritious food, consistent low impact exercise (hour/day now every single day, rain or shine), consistent sleep (same bed time/same wake up/decent amount), and consistent stress (I say no to a lot of stresses and a lot of extended family) - and avoid getting sick as much as possible. Between the 2, it's helped a lot.

I do drink an afternoon double green tea and take a morning curcumin with ginger and black pepper every day, but I don't think it's a magic pill. I just think it's one tool among many.

So, hopefully this helps put your mind at ease a little. With my spleen growing, albeit at a slow pace, I'll be getting treated eventually. But, as I told my youngest at diagnosis, I was gonna try to put it off til he was in college, and he's a 6th grader this September, so I've got 7 more years to make that 2nd goal (my 1st goal was to outlive both my parents from their cancer diagnosis to death - 7 months and 21 months, so that goal is made). My last goal was to live to 102, so I've got um, almost 6 decades still to go for that one...

[Cave123 in reply to MisfitK]

thanks for sharing in such detail MisfitK. Sounds like a very difficult journey you've had but it also sounds like you're well on top of everything now, consistency is important for sure, I admit it's not my specialty, the tread mill is in the basement and I always find a reason to avoid it, will have to get serious about exercise just waiting to feel a bit better first. I wish you lots of luck with your last goal sounds like you have it all planned out. Do you drink tea with EGCG ? How do you take your curcumin ? in supplements ? Any concerns with taking too much curcumin ?

[MisfitK in reply to Cave123]

I just take a normal person's daily gummy dose of the curcumin with ginger and black pepper (it's all in the gummy) with my breakfast.

As for the tea, yes, it does have EGCG (and I brew it 10 minutes), although it's just a normal name brand tea. Also, it's a normal person's dose of green tea (2 bags). And I have it between lunch and dinner - aka, not with food.

As folks here know, I usually tell people if they want to try a vitamin or supplement, they should always do 2 things - 1st, tell their doc they are taking it and make sure he/she approves, and 2nd, stick to a normal person's dose, b/c then you can't do much harm if it doesn't work.

As for the treadmill, I just find it easier to walk outside - nature is beautiful and it's nice to go from point A to point B. You could try to include your spouse or kids to motivate you every day. My spouse joins me 5-6 days/week, so it's a nice way to spend the time.

[Cave123 in reply to MisfitK]

Thanks MisfitK - good to know. Yes I enjoy walks with my wife and my dog we try to go as often as we can - the dog stops to sniff a lot so it's not a vigorous walk by any means but it nice to take in the fresh air. Stay well - CAVE

[SofiaDeo]

Have you had any major stressors in your life recently, or had any immunizations? Either of those can cause a temporary spike. Remember it's the cell trends and SYMPTOMS that are important. If everything else is fine, no nodes, symtoms, whatever, this is just a data point. Who knows if it drops in 6 months to a year. There's not 1 single thing that drives a recommendation to treat. So don't let an ALC creeping towards 30 alarm you. It's hard, but I would be surprised if this was anything super significant.

[Newdawn Administrator in reply to SofiaDeo]

Hi Sofia, I don’t think a rise of 7.5 in a full year can be considered a ‘spike’ to be honest. I’d have viewed that as a fairly steady presentation and entirely normal with a CLL diagnosis. I found it rare for my ALC to rise less than that in a 4 month period. However, stressors, infections and immunisations can cause temporary blips. I’d be surprised if it applied here.

The reality is that with a classic CLL presentation, regular rises are to be expected and can cause unnecessary anxiety. In this case I’d be plotting over a much longer period but not until the ALC reaches 30. Doubling needs to be over a 6 month and not 12 month period too.

Newdawn

[Cave123 in reply to SofiaDeo]

Thanks SofiaDeo. Yes, possible temporary spike, stress for sure, homelife is great however work sometimes stressful so have to manage that a bit better. Was sick for a few weeks recently, congestion / chest cold but no fever, still had energy, concluded it was probably a virus, maybe bronchitis - it's taken a long time, still not fully 100% ten weeks later, GP said it's the lingering effects of a post viral infection. Currently no nodes, occasional night sweats which I think may be caused by stress. ALC is creeping up slowing, agreed it would be nice to see it fluctuate in both directions occasionally. Thanks for responding as always and providing your perspective, much appreciated, stay well CAVE

[Shepherd777]

My wife's WBC would spike from 7000 to 17000 and even 24000 when her IBS would flare up or if they put her on a steroid for other reasons. Two weeks later it would drop back in normal ranges.

[Cave123 in reply to Shepherd777]

Thanks Shepherd777, yes everyone seems to agree the ALC could go up for various reasons, your wife's spike was pretty significant (more than 3x) I do believe mine could have gone up in part due to a recent chest cold, continuing to track, scheduled for another test in a couple of months. Thanks, stay well (and yes....I also have IBS 😐😊)

[lankisterguy Volunteer]

Hi Cave123,

-

You may want to read some of these:

healthunlocked.com/cllsuppo...

cllsociety.org/newly-diagno...

healthunlocked.com/cllsuppo...

cllsociety.org/cll-sll-pati...

-

And then you should have lots of questions to ask your doctor.

-

Len

[Cave123 in reply to lankisterguy]

thanks Len - some great info here...stay well CAVE

[scryer99]

i would not focus on direction - you have CLL, it will increase over time. More important is the trend line and absolute level.

As you say, doubling at counts less than 30 is more about disease onset from low levels, not a big concern.

Doubling outside a year is also not a concern. Even under a year is not going to worry your doctors. Doubling less than six months? Then maybe more frequent appointments, but not treatment.

I doubled every 4 months and got to 150, and still no treatment recommendation. Only when other issues cropped up did treatment become a talking point.

Lots of folks here with ALC 200+. And many are still in W&W.

[juanitajane in reply to scryer99]

My husband was on W and W for 12 years. Now he is on half dose of Zanubrutinib fret having HORRIBLE adverse effects from Acalabrutinib. He is doing well now but his wbc 25000. This is just like W and W because we are always W and W for some sign either good or bad. He also has bladder cancer and has been NED for about 2 years so there are 2 nooses hanging over our heads. We live a good life and have fun but Cancer is always there.

P.S. we have been married for 57 years.

[Cave123 in reply to scryer99]

thanks scryer99 - that's someone reassuring - I have no significant issues (B-symptoms yet) thankfully. what were your indications to begin treatment ? nodes ? hemoglobulin ? what was your ALC when you started treatment ? all the best CAVE

[scryer99 in reply to Cave123]

In my case it was spleen swelling followed by an ER visit and a brief inpatient hospitalization for splenic laceration and infarcts. My lymph swelling was not as bad. Low platelet counts, anemia, and fatigue were also factors.

Before that point, I had gotten the general sense treatment was months, not years, away. I had consistent lower left rib cage pain 4/10 and shortness of breath before the lacerations. Test frequency was I think every 6 weeks at that point?

But the spleen hospitalization kicked everything into high gear. My day-to-day oncologist scheduled an appointment immediately the day after I left the hospital and his first words were "the wait is now over".

ALC was in the 140s-150s when I went in to the hospital. It spiked to 290ish on bridge treatment for the spleen (6-day methylprednisolone course). It settled somewhat before treatment start -- took six weeks to start treatment between treatment discussions, specialist consult, clinical trial selection and intake, and pre-trial testing. Plus I got in a week's vacation before starting treatment, knowing it was likely my last trip for some time.

ALC jumped to 300 at treatment start. Been steadily declining since.

One other point: keep in mind my experience was fairly far outside the norm for CLL patients in terms of speed of progression and severity of symptoms. 23 months from first MBL detection through to CLL diagnosis to treatment is pretty quick. Many, many CLLers have progression measured in years and a significant portion never require treatment. I'm not worst-case, for sure, but your odds are good you'll have a much less scary progression.

[rcusher]

Hey there, if you want to talk send me an email you know where I am.

Jack

[wellbeingwarrior]

Hi Cave123,

Just a personal perspective that might help you. ❤️

I was diagnosed with an ALC just under 30. Four years previously my ALC was reported on the last CBC done as 4.5 (which I wasn’t told about).

I calculated from 4.5 ALC through to diagnosis, then through progression of the following 3 years.

This showed me that my progression rate has possibly been a steady 7.5 (approx) per year over the 7 years since I first showed that lymphocytosis of .5 above normal. (And that 7.5 per year mapped with both before and after diagnosis).

This would line up with what might seem like a big jump in your first year, and might offer a clue on what to expect. 👍

Wishing you all the best. It’s a tough thing to get your head around for sure.

[Cave123 in reply to wellbeingwarrior]

This is very interesting wellbeingwarrior - thank you so much for sharing. Are you still in W & W ? stay well CAVE

[wellbeingwarrior in reply to Cave123]

yes I am. 👍

[Vlaminck]

Have you had any vaccinations in that period? They caused my number to jump up and doc reassured me and next time, they went back down (not all the way tho).

[Cave123 in reply to Vlaminck]

no vax recently, but I was not 100% well when I had my blood drawn - hoping to be feeling well and see it drop a bit next time, my ALC seems to have a slow and steady rise. Thanks, all the best CAVE

[Vlaminck in reply to Cave123]

Yes, I'm pretty sure most viruses could cause WBC to increase. Hope you see it drop back next time.

[Cave123 in reply to Vlaminck]

thanks Vlaminck

[Astro617]

There are lots of good replies here. Try not to worry. Just because you had what for you seems like a big jump over a year's time, doesn't mean you're going to stay on that trajectory. In 2005 my first ALC was 17. The next one 2 weeks later was 30! Last week, almost 18 years later, it was 26. I was up at 40 four months ago. Take good care of yourself. Eat healthy, exercise, get enough sleep and try to stay calm. That is all we can do, and I think it helps! Wishing you well, Cave. I hope your consultation with your doctor helps to ease your mind.

[Cave123 in reply to Astro617]

thanks Astro617 - my discussion today went very well, my doc knows I'm stressed and I think that's why he called me. Will definitely work on your suggestions.... "Eat healthy, exercise, get enough sleep and try to stay calm.", sadly I think the exercise will come last...lol....but I'll eventually get there. You've had CLL a long time...have you had treatment ? keep well CAVE

[Astro617 in reply to Cave123]

Hi Cave, I took a long time to reply. I have been very fortunate and have not yet needed treatment. As for the exercise, even a daily walk has great benefits! Wishing you well.

[wizzard166]

Hey Cave

I'd relax a good bit; unless, you actually double again in a shorter period of time. Basically your numbers are so low that it would be difficult to consider it a concern at this point in time. When I was diagnosed in March 2018, if I remember correctly, my WBC was 15,600 and ALC was 6,710. One year later in March 2019 my WBC was 26,400 and the ALC was 15,840. In other words I more than doubled in that first year. Then as I progressed in Watch and Wait over five years, the count grew and became a greater percent of total WBC; however, it didn't double again in a one year period. I suppose that is why they say, that until the count is over 30,000 doubling isn't as significant.

What you want to look at much more than the ALC or WBC is the RBC count, The Hemoglobin Level, and the Platelet Count. If RBC gets too low then likely the Hemoglobin is too low, and you are in danger of not enough Oxygenation. If the Platelets get too low you are in danger of internal bleeding. Aside from those things, you want to watch how ofter you get sick. Our immunoglobin readings are watched to see how bad the immune system has gotten, and the lower it goes the more danger of infections and ability to fight them.

I've had situations in the last few years where my WBC and ALC went up fifty percent in six months, and that too can raise a concern; however, my Specialist remained calm and said it was likely due to recent infections I had fought. Sure enough those counts went back down near term. Every time I've been seen, regardless of the increase in ALC, my Specialist clearly is mainly looking at RBC, Hemoglobin, Platelets, and whether or not I've been getting sick. Those are the things to watch.

Carl

[Cave123 in reply to wizzard166]

Great advice wizzard 166 - thank you. My hemoglobin and platelets have been within the normal range the entire time (since diagnosis), so that's good, Your email prompted me to request the immunoglobin test at my next blood draw and my doc agreed to it, so I'll get this important information soon, I've never tested for this before. My last two blood tests also showed a slight increase in my Eosinphils 0.5 and Basophils 0.2. Doc said that this was typical as the ALC increases these can also increase from within the bone marrow and more is released into the peripheral blood, if I understood him correctly. So we will monitor this, he said that at some point a bone marrow test may be needed but not yet. Thanks for providing this information it was very helpful - stay well CAVE