I have been WW since a 2016 diagnosis. I am a 52 year old male and in good health aside from CLL. I work out daily and I’m in good shape and have no other health problems and I am not on any medication as of this time.
I had a visit with my oncologist today for my normal blood work check up. WBC at 92 and platelets dropped below 100 (92 also) for the first time. End of November WBC was 74 and platelets were 111.
Oncologist recommended I finally start treatment.
Since my last visit I have had and thankfully recovered from Covid. I am boosted so symptoms were mild and I believe I am fully recovered. I believe I got Covid the day after Christmas or so.
After all of that here is my question:
is it possible my WBC jumped and my platelets dipped because of Covid? My numbers have been steadily getting worse for several years and occasionally they improve. Oncologist was most concerned about platelets dropping and hence recommended that I finally begin treatment.
I posed the question about the possibility of Covid negatively influencing the numbers to him. He kind of breezed by an answer but said it’s entirely possible.
I know there’s a wealth of knowledge amongst the members of this group so I figured I would float that question to solicit the thoughts of anyone who may be able to give me a more detailed answer.
If it’s time to start treatment so be it. But if it isn’t…..
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Health401
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I feel you could be on to something…talk to your doctor and see what he has to say but no one really knows…I think I might suggest delaying g treatment to see how the labs settle out..just a thought…..all the best and do keep us posted on what is going on.
I am not an expert, but it certainly seems possible Covid might impact your labs. The more important information I took from your post is that your numbers have steadily been trending in the wrong direction.
It’s unlikely that trend will reverse itself without treatment. We don’t want to treat before we have to treat, but nor do we want to wait too long to treat and start when we are truly unwell.
You can seek a second opinion, but platelets dropping below 100 is one recognized trigger to start treatment, so I don’t know that any doctor could say treating now is a bad idea.
Whether Covid transiently impacted your labs or not might not make much of a difference to your doc on treating you now. It sounds like your numbers were trending in the wrong direction anyway.
The more important question might be your choice of treatment. You have several good options. That decision alone might make a trip to a specialist for a second opinion worthwhile. Your oncologist might be a Cll specialist, I don’t know. Most true Cll specialists are hematologists by trade, but there are some oncologists who do specialize in Cll.
And by specialize I don’t mean a doctor who sees a handful of Cll patients in his or her practice, but rather a doctor who treats Cll almost exclusively. Treatment options for Cll can change rather rapidly, so it helps to have a specialist on board with any treatment decisions.
Hi. Health401, I see you are seeing an Oncologist. Hematologist are more knowledgeable about blood cancers. l would highly recommend you get a second opinion, preferably with a CLL specialist.
I think it is perfectly possible. My bloods definitely worsened after covid and I do believe it was due to the severity of the acute infection. I would definitely seek a second opinion from a CLL specialist prior to starting treatment but maybe it is just time to start ...no harm in trying to hear someone else's opinion.
The most recent update to the iWCLL Guidelines for the diagnosis, management and treatment of CLL included a change to the platelet count trigger for starting treatment. It now allows platelet counts to go below 100, "provided they remain stable". Professor Terry Hamblin, the CLL specialist who discovered the importance of IGHV mutation status in CLL, used a platelet cut off value of 70. Mine were in the low 50s before treatment was recommended and dropped below 30 during treatment. I didn't need any platelet transfusions. So "stable" is a reflection of your platelet count variation and trend.
I suspect seeing a specialist who sees lots of CLL patients might give you more leeway than an oncologist who may not have much experience with treating CLL patients. So I agree that seeking a second opinion would be a good move, even more so if that provides you with time to decide which treatment choice suits you best, including perhaps involvement in a clinical trial. It might also be helpful to defer treatment until the coronavirus pandemic has waned. Just don't leave treatment commencement too late, or you may find treatment more challenging. You need a buffer in your platelet and haemoglobin counts.
Definitely get second opinion from CLL expert. Your WBC is not that high. Platelets are low but is that it? What other symptoms do u have- fatigue, anemia, night sweats, nodes, enlarged spleen ?
I would like to back up AussieNeil statement. I started treatment with alcalbrutinib almost 2 yrs ago, having been on W&W for 14yrs. My wbc was very high, my platelets dropped to about 12 at their lowest. My haemoglobin also dropped through the floor...
I had my quarterly check-up yesterday, and whilst all my blood results are in the right areas, my platelets are around the 106 mark. Crucially, though, they've stayed at that level for 12months. As all my other blood results are good, they are not concerned with my slightly lower platelet count as it is very stable.
Best wishes for your treatment, there are lots of good options available now.
Side effects have been negligible. I did have some mild headaches when I first started, but they soon stopped, and I now only have then occasionally. A good, strong coffee always helps with that.
The only unchanged side effect is that it makes me need to go to the toilet as soon as I wake up. I asked my consultant about this, and their take was that because its such strong medication, it can irritate your stomach and bowel.
Given the choice between needing to go to the toilet or probably not being alive, I think it's a small price to pay.
Other than that, I'm back to normal. I've been able to resume road cycling and work as a tiler without any noticeable drop in my physical ability.
Be prepared for a spike in your wbc when you first start on alcalbrutinib. Mine settled within 2-3 months and has now been pretty much solid for the last 18.
Thanks for your reply.I'm glad you've been doing so well with the treatment and with so few side effects. It is encouraging for those of us who are about to start and are quite scared.
My haematologist has actually told me to start with Ibrutinib this month but I am going to tell him to see if it is possible to use Alcalabrutinib as a first treatment.
I have a consultation with him tomorrow.
Thank you very much and good luck.
Ah, maybe the toilet thing is because of those strong coffees (joke).
Hi,I have had covid 3 times and a drop in Platelets is a classic response to Covid. I immediately stopped my acalabrutinib once tested positive to help maintain my number. My second infection was delta and I was admitted on day 10 for antibody infusion as precaution, I was give injections to maintain platlets and kept for 3 days due PE risk. My wbc went from 4 to 16... the highest it had even been, it returned quickly to normal
Hello, I do not know the answer to your question, but I would absolutely get a second opinion and certainly be seen by a CLL specialist that deals with this all day - everyday. Sadly I’ve seen enough posts on social media about being either treated prematurely or on the wrong medication that I believe it would be reckless not to take these precautions. I was diagnosed almost 1 year ago and have consulted with 3 CLL specialist’s- Boston, NY and Baltimore. Crossing those T’s and dotting those i’s like my life depended on it ! 😂
I can totally understand why you are asking the question. Similar to you I was finally diagnosed with CLL in March 2015
Whilst not totally similar, I picked up a serious infection ( Stathylococus strain) in March 2018 in the Maldives and had to be flown air ambulance to hospital. This infection caused a significant change to nearly all my readings which took about 3 months to settle down. For example my WBC went from 13 to 25 ( currently 17) and my platelets went from 221 to 200 ( currently 195).
When I got back to the UK my local Haematology team put me back on 3 monthly blood tests and said that changes like this were quite common if you picked up a serious infection.
Hi I too was diagnosed in 2016 . about six months ago my numbers started showing rapid changes . My Haemotologist consultant sent me for various CT scans etc . Starting to put the ducks in a row as she said . Since then my numbers have changed but not drastically and only this week on my monthly bloods they had hardly moved at all my haeomglobin was slightly lower lymphocytes hardly any move platlets were ok at the moment the decision is to carry on monitoring my bloods monthly and when the time is right I will commence treatment. I think that a second opinion is always a good idea and my haematology dept encourage it as had been said on this site everyone is individual good luck with whatever is decided .
I started treatment when you started watch and wait and we are about the same age (though I was on BP meds before I started - good for you to be in such great health). I started treatment before platelets were as low as yours or WBC as high because I had 17p deletion and the disease took off shortly before I did. If you aren't seeing a CLL specialist, can you get a second opinion? Even without that, I have normal platelets and still have broken capillaries everywhere, so there is probably a reason < 100 platelet count is a trigger to start. Good luck. You'll do fine.
Hi Thompsonellen. I have 17q deletion also. My doctor mentioned maybe starting treatment in the next 3 months because my trends aren't going the right way following a pregnancy which kind of shocked my system. My platelets are 155. Wbc 61 and nodes swelled alot after last booster. Never had covid. Dr says covid booster reveals whats already going on with the body related to CLL and node swelling. What treatment did you start with?
I did the obin + venetoclax + ibrutinib trial way back in 2016. Recently relapsed and in clinical trial #2 with LP-168. My WBC was about 60 when I started treatment. I was supposed to start in March but the trial was beginning in June. I ended up in the hospital with a bleeding incident in May so almost didn't make the trial. Just get monthly blood tests and watch hemoglobin. That's what tanked on me. Good luck. xo
If the CLL is on the march, B Cells crowding the marrow, that can cause a drop in platelets and haemoglobin, with a rise in White cell count.
It could be a bit of both, CLL + Covid effects.
As stated above, you really need an expert CLL assessment. If the marrow is filling up with B Lymphocytes then treatment is more likely to be triggered.
CLL is a heterogeneous disease. We are all different and that does make predictions tricky. Hence the nudge to get checked out.
Ok and wow! I am pleasantly overwhelmed by all of the responses to my query. I’m not sure if I should respond directly to things people ask about or just respond generally as a lot of things have stuck out to me from the responses.
First a little more basic information about me and where I am at currently.
Honestly I feel healthy as a horse. No fatigue, night sweats, anemia or any of the things which would seem to indicate a need for treatment.
I can feel lymph nodes in several areas and I check them daily but this has been the same for years. None of them are painful or feel any larger or more prominent than they have been.
My spleen feels normal from what I can tell. My doctor did all of his normal feel tests on nodes and spleen yesterday and didn’t note anything unusual. Status quo.
One of the respondents asked what was going on with my hemoglobin. Those numbers are stable and within normal range so no problem there for now.
I think my main concern at this point is whether or not I should wait a few months to see where my numbers are at or start treatment very soon as recommended.
Being just a few weeks over Covid and still feeling 100% and healthy makes me leery about starting to undergo treatment. I understand the thinking that it is better to start when well than when sickly but I feel perfectly fine and other than my change in numbers (right after Covid) I have had zero physical changes. In short, I am blessed to feel healthy. That is what makes it hard to wrap my head around starting treatment now.
Oh one more thing on that part: I felt fine after my first second and booster Covid vaccinations. One of the respondents said something about how your body reacts after the booster as an indicator of sorts with respect to CLL. I got my booster in September.
I will definitely seek a second opinion from a hematologist as all suggest. I could use a little help trying to decipher whether or not my doctor is actually an oncologist, a hematologist or both. It seems that everything I look up on the Internet says he is one, the other or both! Is there something I can look up like a registry or something to get definitive answers on his credentials? This will also help me to choose a hematologist for my second opinion. Sorry I know that’s kind of a dumb question.
I intend to get the ball rolling by getting my CAT scan and setting things up for treatment with my current doctor and meanwhile seeking a second opinion so I have options.
All replies are appreciated and thanking you all for your thoughts.
I am glad I started treatment when I did - I felt fine, my numbers were reasonable but my nodes were enormous and starting to interfere with my life (walking and my neck was so big I would not be able to keep my diagnosis quiet) so treatment started. I avoided having any infections or other issues which can sometimes happen if treatment is delayed to much. It is a bit of a dance.
I told my doc I was getting a 2nd opinion through CLL Society, his office provided the info to the expert doc and I shared the suggestions with my local doc.
Cytopenias happen with CLL. Usually treatment starts with Steroids. Since you don’t have any B symptoms, I would think it might not need anything more that treating the low platelets.
From what I learned from this awesome group is that anytime treatments are indicated, other than cytopenias, a bone marrow biopsy is obtained first.
My platelet counts have been jumping from 99 to 120 since diagnosis. My former CLL Dr said it was nothing to worry about. My ALC is still around 20-25K.
The odd thing is even 7-10 years ago I had low platelets - around 140. This was long before I had any signs of CLL. I think a single incursion below 100 is really premature.
Oh, and the CLL Dr that said I had a long way to go with 99-120 -platelets was Dr Steven Coutre — one of the best of the best. We lost a wonderful man when we lost him.
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Recently diagnosed, WBC numbers stable but RBC/HGB trending down
Fluctuation of Platelet Count
when to begin treatment
Advice Needed
