Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, coinciding with the most clipped doctor visit ever had, so left full of unanswered questions. My lymphs had gone quite up (okay, that's CLL progressing) and WBD went well up too (okay, CLL progressing) BUT, neutrophils, which had 4.09, are now down to 1.9. And for the first time, basophils, which had normally been zero, are now not only present but high (.23). Plus weird other morphologies for first time as well as .23 blast cells. Also, platelets have fallen (now low normal), and other oddities (potassium way up, GFR down tho still okay, anion gap 4.0). All of this makes me wonder WTH! Wouldn't you know this would be the test results when I had a very late, hurried doctor who didn't really have time to go over this stuff and brushed it all away as all fine. Not sure if he even noticed the blastophils. Anyway, would love thoughts from this group. SoniaDeo has given me some helpful info on blasts, but anything else? I want to get retested, but now wondering should I start looking for a great OTHER doc to consult for second opinion? And if so, are there any greats elsewhere in Virginia/DC, or would it be Houston, NY, or Boston? (I say greats because my now-retiring doc has been top doc at respected UVA and will be probably well known to other docs, so would want someone who wouldn't be cowed). P.S., just now got results from EBV test, didn't even know they were doing, and it is positive for EBV virus again! Last time I got positive, I did NOT have basophils, just by the way. Thanks so much for any feedback, advice, cautions or, especially, reassurances if possible!
Unusual results on standard differential -- wo... - CLL Support
Unusual results on standard differential -- would love feedback (and, if possible, reassurance?)
1. Repeat the bloods! Neuts can drop in a viral infection - a bit...
2. Yes def consider a 2nd opinion - or at least a Dr that has time for you.
3. EBV is very common. It perhaps does not mean you have been infected again - it may mean you immune system has seen it in the apst and remembers.
4. Always consider Lyme Disease...
5. Potassium "way up" - and your GFR down "but OK"??? What's the trend here? Raised potassium are important - your Dr would know.
Your Family Doc should be well capable of navigating your through this one.
Jig
Thank you, Jig. Actually, they did a viral load, and I have the EBV virus in my blood (not first time). And you are right -- lyme is something everyone should be aware of. As it happens, 34 years ago, I had lyme (high titer), got IV treatment, then pills for a couple years, and, knock on wood, haven't in years had the symptoms I had then or those I associate with it, so I have been going with the idea I no longer have it. Felt very lucky about this. Perhaps if my retest still shows high basophils, I will ask to be tested for lyme (already asking for new differential, new potassium, and new EBV -- hoping I'm not already pressing my luck, and haven't gotten an okay yet).
When I was diag with CLL - they found Lyme as well. I was treated for Lyme during first months of WnW - and actually felt a lot better after.
Its a catchy thing - cos one has one or other key diagnoses - its vital that not all new symptoms are merely attributed to those diagnoses. Sure it gets complex - but thats whats Docs do!
Hope it goes well - and hopefully you can update us.
Jig
Thank you, Jig. I'm going to keep this in mind. Would think a top CLL doc would want to rule out everything -- but don't even know if I ever mentioned my (past?) lyme.
Here in the UK, as you will probably know, everyone is, or can be, registered with a GP. The GP then works with various Specialists as needed. My CLL Dr would not, I think, feel its her role to investigate my fatigue, back ache, numb toes etc. That's the job of the GP. They should work together for the benefit of the their patients. In real life does not always work out. Here is where patient self advocacy kicks in.
There is a land of medicine twixt Hosp Docs and GP, that neither probably wants to stray on to, for medical uncertainty lies there.
Here in the UK, it's the GP who is probably in best position to advise if another cause than CLL for fatigue exists.
Jig
Thank you, Jig. Actually, yes, if fatigue, I guess -- although I would also mention to my CLL guy -- but things like the suddenly high basophil/cause, yes perhaps my GP. So you've pinpointed the issue, those gaps and who is responsible. Would be nice to have one person, wouldn't it, who would take you under his/her wing with CLL, who would have the whole picture, and advise as to everything. My GP primarily does things like blood pressure, vaccinations, aches and pains, and when something weird, sends me to specialist, and specialist diagnosed the CLL then to CLL guy.
Indeed.
Perhaps a UK US difference.
All of us need a Dr who can, or who is willing or indeed able to bridge this clinical gap.
Meanwhile, you have this Forum, not much slips past us all!
😉
Bounce issues back at us, check out the response, use it to manage your Docs!
Be bold!
Jig
Thanks, Jig. Yes, I am still hoping to hear some more about the basic blood results that have me concerned -- basophils and potassium high (zero basophils previously) together with first ever blasts, everything else going in the wrong direction slightly or not so slightly. Perhaps the absence of comment on here about my blood results means nothing particular to worry about? 👍
Basophilia can have a number of causes, one of which is simply having a bone marrow disorder/cancer. Here's a number of other things that can cause basophils to rise. Not sure if docs get alarmed unless the rise continues, crowds out other cells such that RBC, platelets, etc. are dropping, or if it's just because your allergies are acting up ferociously. There has to be a number of signs/symptoms clustered together before docs get alarmed about them, I think.
my.clevelandclinic.org/heal...
Thanks. Just in each of my blood tests, normally zero basophils and decent neutrophils, so this is also a new development and not only present but listed as "high," together with the sudden appearance of the blast cells. I didn't have many basophils even when I had EBV previously. It may be one of those things like Jig mentioned where I need to turn to my GP about, because don't feel sick at all.
Let me add, that basophilia and blasts are all consistent with myeloid disease, from what I've read. I do place significance on sudden changes, even if I am wrong -- as I hope you guys will show me that I am. I am not suffering from a bad allergy, and certainly no worse, maybe better, than at times of other blood tests. Not aware of any sickness in terms of symptoms.
I agree it's concerning when one suddenly sees something that's never been present before. I too get an anxiety spike/burst of adrenaline when this happens to me. I need to remind myself to repeat labs, and see if there is a trend or just a random few months quirky bloodwork.
Thank you, SofiaDeo. Yes, that's what I'm trying to schedule. Disappointingly, my doc, whom I have respected but didn't have much time yesterday, just waved the whole blood tests off as all fine and instructed assistant to reschedule another 6 months out. Not characteristic.
The CLL Society link below lists 2 CLL Drs. in D.C.
cllsociety.org/toolbox/cll-...
The following link is to CLL Society Expert Access Program (with instructions on procedure)
cllsociety.org/cll-society-...
Wow, not a single doc in Virginia, not even my doc at UVA. Lots at MD Anderson. Hmmm. Thank you for forwarding the list.
Yes, thank you, I noticed that. I am not particularly close to D.C., and am wondering if biting the bullet and going to MD Anderson (they did an article on EBV with CLL) would be worth it. Just kinda surprised my guy isn't listed.
The recommended doc list is compiled by CLL patients mostly, and I think a few recommendation by other docs. My CLL specialist isn't on that list, I didn't find him through there. I think he's great, probably should ask he be added haha. Noted researchers who publish and give presentations are the widely known ones, others who may not publish or "really specialize" may not be. I thought my first hem-onc did a great job. He wasn't a "specialist" but he reviewed the current literature to discuss with me, and had no hesitations recommending me to go to researchers or others with more experience in CLL. And did a protocol that was presented at ASCO that wasn't yet "FDA approved" but published by the research group I was seeing. He would wait for input from the CLL specialist group before proceeding on certain things, always welcoming (sometimes insisting) on expert input before proceeding. So he was a great doc but not a "CLL specialist". Seeing a specialist intermittently is what a lot of us do, when the specialist isn't really easy to access. Find a local hem-onc willing to work with one.
IDK why another doc would be "cowed" at the thought of taking on a patient from a well respected, but retiring, doc. Even if he wasn't retiring, if one decides to change docs, well, that's up to the patient in the US.
I just meant, if he is as highly respect as I think he is, newer guys might be disinclined to disagree or say he's wrong. Heck I think that's the case in the medical world anyway, doctors never saying another doc is wrong. I have had faith in my guy and still would if he had had time to really go over things this last time. But he didn't and waved me on, and this time I have some new questions (basophils, blasts, etc).
I see. IDK if it's so much a doc might be "wrong" as "other possible interpretations could also be correct". Medicine is quite often an art as well as a science IMO
pubmed.ncbi.nlm.nih.gov/220...
If/when I disagree with my docs, I don't think of them as "wrong" so much as "While this is possible, I am not sure it is the only explanation for whatever data we have" unless and until something concrete presents itself.
I thought after writing that that I perhaps shouldn't have used the word "wrong" but just disagree on interpretation (which they might feel means they are saying my doc is "wrong")
Maybe check out your local support group at CLLSociety.org as well as the Leukemia & Lymphoma Society at lls.org, to see what patients in those groups have to say. Also patientpower.info has links to a number of groups. My current CLL specialist is a member of the US Oncology network (link on Patient Power) perhaps there is a group near you with a doc you might be interested in working with.
Was kinda hoping to get some reassurance on here, but as I haven't really, I guess the consensus is that I'm not in a good place and yall aren't going to pretend otherwise. Which I guess I thank yall for, but I'm feeling a bit down. Don't know if there are support groups for this type thing around here but maybe will check it out. 
I thought we all were being supportive/helpful/ reassuring. Not sure exactly what you are looking for, but I hope you find it.
Oh, dear SofiaDeo. You have been so helpful and supportive being quickly ready to answer and speculate so nicely, and I am crushed that I made you feel you haven't been. i guess what I meant was I just feel sad and scared and was kinda hoping to hear a chorus of "oh, that happens all the time, nothing at all to worry about for this reason or that". So, in the absence of those "it's nothing at all, go back to sleep" comments, I have been assuming, gee, it must surely be an unusual/bad set of signs. I am taking in all you and others have said, but by now I am wondering about myeloid transformation. And because of your helpful suggestion -- actually better than suggestion, an insistence! , as others have also given, I am scheduled 2 weeks out for another blood test (tho my doc had directed for me to go another 6 months, which for the first time has caused me to lose faith in him so there's a touch of grief too in losing my anchor). As someone else said on here, go with your gut and my gut is telling me things that are not reassuring. You and others have been wonderful, and I so appreciate your comment and thoughts and suggestions which I'm acting upon. And if things are not better on retest, going to ask for another consultation, and then, maybe try a different doc for that second opinion.
Re, "I am wondering about myeloid transformation", I don't know where you came up with this worry, because CLL arises in the lymphoid stem cell line, from mature B cells. That's totally separate from the myeloid stem cell line, from which non lymphocyte blood cells are derived.
A 6 month recommendation for a blood test review indicates that your specialist considers your CLL to be very stable. I never managed more than 3 months in 11 years of watch and wait and accordingly have blood test results from well over 200 blood draws. Again trends are what's important.
Neil
Okay, then maybe this is stupid. I hope it's all stupid, and I hope I can confess the stupidity of my worry after the second blood test.
You are understandably concerned at your recent, unusual blood test results, but a 6 month review is entirely appropriate with mutated IGHV, 13q del markers, after 2 years of observation by your specialist. If they had any concerns, you would have been asked to have your next blood test sooner. I hope you can regain your trust in your specialist.
Neil
I don't think it's stupid, it's always good to ask. But I think part of the confusion is, I don't think (my definition anyway) reassurance is just "oh don't worry about it." You *are* worried, so people like myself will say what they know about why it may not *be* something to worry about. IMO the "it's not urgently life threatening" is implied. As opposed to just saying "oh don't worry". I am going to say why I don't think it's a major worry/what it might mean. And encourage you to continue to learn the medical basics of your CLL, so oddities won't be as frightening. Because our bodies aren't static, things always fluctuate somewhat. One of the basic concepts the introductory stuff keeps mentioning is, it's trends that generally are meaningful. And not just a trend, it has to be placed in context with other signs & symptoms. I won't say a single value never ever has meaning or needs urgent attention, but IMO the docs will be calling you if this ever happens. There are protocols for urgent, life threatening lab results. You won't go weeks waiting to hear from your doc if something were ever to be life threateningly "off".
Thanks once again. There have been posts that have received, "that's perfectly normal" and my wishful thinking was that I would hear that, but as I said in the post re blasts, I've heard blasts are definitely not appropriate for CLL. And this group wouldn't be as valuable if people said things to comfort that aren't true. So, as you initially suggested, gonna get a new test. If there are more blasts, and equal or worse basophils, maybe that's when I guess I should seek a second opinion.
Dr. Google pops out talks about myeloid blasts near the top of the search engine, when one searches for "what are blast cells in CBC". I bet that's where the confusion is coming from.
Hi Vlaminck,
I haven't replied, because I considered you were being provided with helpful, supportive suggestions and your results really aren't all that concerning. Jig gave you excellent advice on your first reply, beginning with "Repeat the bloods!" Your only out of range tests are your potassium (and a high reading can be due to poor handling of your blood sample, see mayoclinic.org/symptoms/hyp... ) and your basophils. I track many of my blood counts in a spreadsheet, but don't consider basophil counts worth the bother, nor do I track my potassium.
I really think that you are overthinking this, which is understandable, given how you got the copy of your results and your specialist wasn't able to spend more time with you. Like you, I prefer to see my results before my appointment, so that I can discuss any results of concern, but that's not always possible. Please keep uppermost in your thoughts that with CLL it's trends that are most important. Results that concerningly jump up or down, nearly always go back toward your long term average. It's a known statistical property called "Regression toward the mean" shortform.com/blog/regressi...
Note the third example:-
"Many health problems tend to resolve on their own, given our bodies’ natural healing properties. However, patients attribute the healing to whatever action they took meanwhile – seeing a doctor, doing a superstitious act, taking medicine – while ignoring that they likely would have returned to full health without any action."
Stick with your plan per your reply to Jammin_Me. I really expect that your next blood test results will be reassuring.
Neil
Thank you, Neil, I've gotten very helpful and responsive advice, starting with Sofia Deo. I love to hear your comment that you don't think there's anything particularly concerning. I agree not to worry about potassium for reasons you stated, but the overall picture was most negative, with the whoppers (to me) of basophilia (from zero all prior tests) together with sudden appearance of blasts which makes me wonder -- from overnight cramming -- about myeloid issues (which has high basophils and, of course, blasts). Plus learning today I am positive again for active EBV. Yes, I need to stop overthinking it, or thinking of it at all if I can, as worry does no good. I'm going to have retest plus thinking of seeking out second opinion from the list. Thank you again for your -- and other's -- helpful feedback.
Whom do you see with the expert access program?
The CLL Society Expert Access program is explained in detail here: cllsociety.org/cll-society-...
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The doctors are assigned in rotation and you will not be able to choose, but I know of some patients that talked to Dr. Lamanna, at Columbia NY Presbyterian, and a few that had Drs from MD Anderson.
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To participate in the Expert Access Program, you must reside in the United States and have a CLL diagnosis, without current access to a CLL expert. If you are unsure if you are already seeing a CLL expert physician, check our list of CLL expert doctors here.
cllsociety.org/toolbox/cll-...
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Several patients reported excellent sessions and lots of great information obtained.
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cllsociety.org/2019-expert-...
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Len
Thank you, Len
Thanks. Unfortunately, that will be easier said than done, as none other nearby, and have so many obligations didn't plan on making a trip out of state so soon. I am going to pursue getting retested and then maybe ask for a "do over" to go over some concerns. See how that goes.
Yes, looked up flights to Houston as they have done some work on CLL with EBV. But ugh.
Vlaminck
> And for the first time, basophils, which had normally been zero, are now not only present but high (.23). Plus weird other morphologies for first time as well as .23 blast cells.
That's a suspiciously identical measurement. Very often, the results from the machine or manual count are hand transcribed into the medical record, and human error is possible.
So, I think you should repeat the CBC with differentials.
There are also things that can go wrong with automated instruments sensing cells incorrectly. I've seen reviews and comparisons of older hematology instruments with distinctly varying counts for basophils and eosinophils, for example.
Usually, the instrument will flag odd results for the technician to ask for a microscope review by a pathologist. Labs, especially busy labs, differ in how they handle that, and the skills of the person doing the review may vary during evenings or on weekends.
As far as the EBV goes, once infected, you're infected for life, like VZV (varicella zoster virus) for chickenpox and shingles. Where VZV infects mostly nerve cells, EBV infects our B-cells. There's been research on its connection to CLL, but I haven't seen anything definitive that says, "Now, do this. "
There's really no sure-fire treatment for EBV short of a bone marrow transplant, which is just not worth the risks, I think.
EBV can reactivate:
webmd.com/a-to-z-guides/can...
They mention several kinds of EBV tests at the above link. There's apparently also an EBV DNA test, but I don't think it's commonly done. I don't think any of the tests are considered that useful once you have a CLL diagnosis, because there's such an overlap in some symptoms - fatigue and swollen lymph nodes or spleen :
rarediseases.info.nih.gov/d...
Acyclovir may help a bit, and is generally well tolerated, and even used as prophylaxis against a shingles outbreak in patients who don't respond well to the Shingrex shingles vaccine. But it won't eliminate the infection completely.
ncbi.nlm.nih.gov/pmc/articl...
Antiviral Drugs for EBV
Cancers (Basel). 2018 Jun; 10(6): 197.
medlineplus.gov/druginfo/me...
Acyclovir
EBV is fairly intensely researched. I found 523 studies at various stages of completion on clinicaltrials.gov. If it does turn out that EBV is causing significant trouble, I would urge you to see a research virologist or infectious disease specialist at a university clinic.
=seymour=
Thank you, SeymourB. Actually, the blast morphology stuff was done manually, according to the report. And they did a DNA test for EBV and it is active (I know I will always have it, as do most people, hopefully latently, but it is this (again) activation that concerns me because it targets Bcells to mess with). I saw an infectious disease guy here at UVA who didn't seem in anyway an EBV guy, but he stood in for one, and had a positive test with him in 2020, then a month later another test and no EBV activation. Now he too has retired and he gave me another name here, but these are surely not EBV specialists. The only EBV guy I have had contact with is in MD/DC area who was nice enough to call me and who acknowledged the problem of EBV with my CLL, and encouraged frequent texting. But then what? All this is why I am thinking of MD Anderson because way back, someone there did a (concerning) article on EBV with CLL. So hoping they have someone who can address the combination.
Vlaminck -
I look forward to following your progress on this, as I have had really wacky differentials for several years - neutrophilia once, monocytosis several times, eosinophilia most recently, reactive lymphocytes many times. All 3 Ig classes are below normal range. I was on SCIG for awhile, but stopped early in the pandemic. I've had labs done at 2 different hospitals, Quest, Labcorp, and NIH, and I track them all in a spreadsheet.
My hunch is that CLL makes us more likely for reactivation of latent viruses, like EBV and CMV. I had a shingles outbreak several years before CLL dx, I take 400mg acyclovir twice a day as prophylaxis for VZV, but it hasn't made any noticeable difference on my wacky results. I do have occasional PHN from VZV in my scalp and eye, but less stress after retirement last year helped,
I'm now reading your other posts.
best wishes,
=seymour=
Sorry you are having wacky issues as well. Hopefully your other numbers are not progressing too quickly, My ALC just about doubled in this 6 month period, together with unusual other things. Will post what results I get when I get retested (waiting for assistant to schedule it).
Duke is driving distance for you and I have been very satisfied there through 10 years of W&W. I am nearing treatment thresholds so after that, we'll see...............................!
I am having similar issue. What is your covid vaccine status?
I have had 2 moderna, then, Oct 1, another Moderna (full dose),recommende I get booster,but waiting for upcoming test in a study to see what my antibodylevel is.
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