I just got diagnosed with CLL a year and a half ago during regular bloodwork. It was right after going through 5 weeks of radiation for breast cancer. I was told that I had the good markers 13q deletion and mutated and will likely not need treatment for 5 years from a CLL Specialist. So I was horrified to get my latest bloodwork this week that showed that in the last six months my WBC went from 19 to 40 and ALC went from 18 to 42. However all other bloodwork looked fine. Now my CLL specialist said at this rate I will need to start treatment by the end of the year and to draw blood every 6 weeks. I have no other symptoms, I feel great. So I am completely confused and scared as to what in the world would cause my numbers to jump so dramatically in 6 months. My CLL specialist did say she wanted me to redo the Flow cytometry test , I don’t know why. I just turned 53 and really just got punched in the gut and worried that my once slow growing CLL is now something more dangerous. She did say that the radiation could have gone into my breastbone to cause this sudden change. If I had known I had CLL when I had breast cancer I would never had done radiation. Please any words of encouragement or advice would be greatly appreciated. My mind is going to some dark places and I could really use some of your collective wisdom. Please don’t write anything that is scary, I’m too emotionally fragile to receive anything other than encouragement at this point in my journey. Thank you so much!
ALC and WBC doubles in 6 months : I just got... - CLL Support
ALC and WBC doubles in 6 months
CLL specialists treat the person, not the numbers. When one of Australia's top CLL specialists, Dr Constantine Tam, was asked by someone in the same situation as you for his input, he asked "How do you feel?". The person also replied like you that they felt fine. His advice was that (as is stated in the iWCLL guidelines), it's important to look for other confirmatory symptoms that treatment is needed. Sometimes our lymphocyte count growth levels out; it's one of the standard patterns of lymphocyte changes over time. It's certainly appropriate to be monitored more closely, but it's not inevitable that you will need treatment in the suggested time frame. Also see: healthunlocked.com/cllsuppo... You could avoid treatment for a couple of years at this rate of ALC doubling and still have a lower ALC than some of our watch and wait members!
Don't forget to request a free second opinion from the CLL Society's Expert Access program if treatment is recommended. cllsociety.org/cll-society-... should have no problems arranging one given you live in Hawaii.
With respect to your specialists comment about radiation and your breastbone, CLL cells are very susceptible to radiation. It's used occasionally to shrink nodes and the spleen and can be curative for the early stage SLL expression of CLL/SLL. While it's possible that a CLL cell in your breastbone bone marrow might have developed a faster growing sub-clone, that's conjecturable. What's important to appreciate is that your breast cancer was a greater risk to you than your CLL, for which we now have excellent treatments.
Neil
Thank you Neil. I guess I do have some swollen lymph nodes in the neck that I forgot to mention and hot flashes (but not drenching).
I just wanted to share that this exact thing happened to me that Neil describes. I am 58, and was diagnosed when I was 53, almost 54. I do have some enlarged lymph nodes in my neck, and they wax and wane over time, appearing larger then smaller, then larger again, and so forth.
This past October I doubled my WBC and ALC in a little less than 6 months. I was stunned by these results, but like you, I felt fine, exactly the same. Also other aspects of my bloodwork, like my platelets for example, were still really okay. My CLL specialist was quite reassuring, and explained the reasons why he didn't think it was time for treatment yet, in spite of those doubling results.
I am being monitored more closely now, and my latest blood results showed only a small increase in WBC and ALC from before, everything else was still basically the same.
Sending best wishes to you,
Debbie
Debbie thank you so much for letting me know this. I didn’t get any sleep the last few days and my anxiety is through the roof. Do you mind me asking was there any major life event or new medication that happened during those 6 months. I would really like to know if my lapse in daily exercise and not being as strict on my diet caused this. My mom moved in with me during this time and with her cooking, joining her nightly for a glass of wine I’m afraid letting my guard down caused this. Thank you so much and letting me know this. It’s posts like this that hep me sleep better at night!
I'm happy to try and answer anything that I can. I see my specialist every 5 or 6 months now and in between I also see a local hematologist/oncologist. I live in New York and see Dr. Richard Furman as my CLL specialist.
There were indeed some major life events during the time my numbers doubled, and I did think of a possible stress connection to my results. But of course, I can't really say what, if any, correlation there actually was between the two.
As far as where you need to be located during treatment, everyone is different and has their own unique set of circumstances, so I would probably discuss those concerns in full with the doctor who will be over seeing your eventual treatment.
Please don't blame yourself thinking that this particular result happened because of something you ate or drank or a lack of exercise. Eating well and exercise can help you be in better overall health and strength during treatment, but as far as I've ever known, those things really cannot effect those blood results.
I do hope my reply was at least somewhat helpful for you.
Debbie
Are they draw blood every 6 weeks now? Do you sharing with me who your CLL Specialist is? Also did they tell you that once you start treatment you will need to relocate near by for a period of time? I have 4 daughters in High school wondering how I can move off Hawaii to the mail as for treatment with completely devastating my family. Or am I destined to live away from them for the four months mentioned by my specialist. Thank you again!
Hi Cfarrar,
I can only offer my own experience of not living close to a fancy treatment center (I live on the southern border of Texas, 8 miles from Mexico, 400 miles from the nearest big American city: San Antonio).
My treatment guidelines were recommended by a doctor at MD Anderson, who then, while keeping in touch with me via email, basically signed off on my case.
The actual treatment (V + O) was then set in motion / guided by my local hematologist/oncologist at a cancer clinic just a couple miles from my house.
Everything went well, and I was never away from my home for the night.
There must be some sort of local clinic near you that could put a treatment plan into action, should one be deemed necessary?
Hoping that's not the case for you, of course.
--Dave!
Dave - I did find one close by but worried they are not familiar enough with CLL that if I run into complications they wouldn’t know how best to care for me, unlike a major cancer center like City of Hope or MD Anderson. It’s so scary….
Hi again Cfarrar,
If it makes you feel any better, my own local oncologist told me I was the first patient in the clinic he'd/they'd guided through my particular treatment (V + O). On a few occasions, he even buddied-up with the head oncologist as they tried to figure out the subtleties of the timing of the protocol--in my presence! It was all very interesting.
But again, it went great. And now they're running a clinical trial based on the meds I guinea-pigged for them.
So, in short, they had no knowledge going in, then quickly became expert. I felt I was in good hands overall.
--Dave
Dave I would have been running for the door. You are a brave man and so thankful it all worked out! Thank you so much for reaching out to me.
The "complications" from CLL and its treatment aren't particularly difficult to spot or treat. I think the fact your local healthcare is asking questions, is a sign of a great group of people. They want to know if specialized machines or drugs or support are potentially needed. A good provider asks questions like "we haven't seen/dealt with this much, will it be in a patients interest for us to follow them or do they need different support available". I would be surprised if anyone felt you HAD to go to the mainland for treatment, except as part of a trial. Many of us have a local hem-onc seeing us regularly, and consulting the CLL specialist if questions arise. Look at how sllincolorado had a crazy lab initially indicating Richter's, she didn't fly out to the Mayo Clinic to get a BMB reading interpreted by the specialists there. They sent the sample to them.
So good to know, thank you.
Yeah, that's what I was trying to get at, Cfarrar.
In the perhaps-unlikely event that you need to start treatment, I can't imagine why you'd need to leave home for four months, unless you were to undergo Car-T or something, which is extremely unlikely.
While the initial week of treatment might be a bit complex, especially if you were to get a monoclonal antibody, it's nothing a local clinic can't handle. And the rest of the time it's usually just pills and daily, then weekly, then monthly labs.
Myself, when I was recommended V + O, the specialist said I could always choose to stay in San Antonio for the first week, or I could just let my local clinic handle it, which he assured me they could.
Choice was easy, and he was right.
--Dave!
I’m about to start radiation treatment for recurrent breast cancer in left breast. I’m still on W&W for CLL but it does concern me if my numbers will get worse after radiation treatment. My WBC is high already. Drs don’t seem concerned but it’s not their body either.
If your lymphocyte/white blood cell count does change, you should see it decrease.
> My CLL specialist did say she wanted me to redo the Flow cytometry test
The reasons why flow cytometry was/is repeated for me:
- it is normally redone at some intervals, depending on the patient, protocol used in a given country and/or clinic
- with your ALC increasing, your doctor might want to check if there were any changes/mutations
I'm also still watch&wait, but likely nearing my treatment in the next months. Scary on one hand, but on the other, inevitable for most of us!
Please remember a number of people here have reported increases in lymphocytes and nodes with Covid vaccination. So some of your increase may be due to immune stimulation from that. And have you gotten any other vaccinations besides Covid ones?
As far as treatment goes, IMO if there is an infusion center nearby, as others have noted, even if the providers have never given a CLL specific protocol, it can be done. They aren't particularly difficult to do for medical people, it's just something new/unfamiliar so they generally go a little slower/verify things more. I took an experimental protocol to a local hospital outpatient clinic, and the biggest issue with doing it IMO was that it took extra time. Since it was "new", people took longer to read about it, ask questions, etc. unless it was the same staff (pharmacist prepping the med, nurse giving & monitoring, etc., doctor on site that day overseeing everything) who had happened to have done it there before.
Do consider a second opinion. Unless there is something else specific about your medical records you haven't said here, IMO it would be unusual for the doc to jump to saying "at this rate you will need to be treated soon" if the only thing they are going on is a jump in your ALC. I am thinking that's why repeat tests are being done. As well as why frequent bloodwork is requested, your doc wants to verify this increase isn't some random jump from other factors. Dehydration, vaccination, other things can cause random jumps.
No vaccines in over 8 months. It’s a huge leap. My CLL specialist said it’s not so much how high the number is as how fast it’s moving up. I blame radiation. It started rising a couple months after radiation finished. I just am sad that I’m having to start treatment so “young” and so early in my disease and after being told I have good prognostic markers. Makes me scared it’s turned into a more dangerous kind of leukemia.
I see why your doc wants to move faster on testing. FWIW I went from "mildly elevated due to tooth infection" in the summer, to diagnosis about 6 months later with an overall WBC of around 50K. And I had symptoms, I suddenly couldn't finish a workday, had trouble concentrating, and developed drenching night sweats My variant doubles approximately every 4 months when growing uncontrolled. I have all the worst markers, and I am still around after 11 years. So I think it would be extremely unusual for this to be a "new" leukemia a d more likely that it's your CLL. While most people with your markers DO have a slower growing, more indolent variant, there is no guarantee and you may simply be more like me, needing treatment sooner.
I do remember how terrifying it all was in the early stages. This is an extremely awful time to be going through, waiting on more test results.
I'll also add, IDK about the radiation per se causing the cancer, but perhaps stress from having the other cancer diagnosis and dealing with all that physically/emotionally contributing to the CLL. I had an extremely, insanely, stressful year both physically and mentally the year or so before diagnosis. The slightly abnormal labs that had been present but not investigated by my doc was, IMO, the beginning of a CLL that started growing rapidly after a year or so of intense stressors. The "good" thing about this is, unlike me & others who have the del17p and other "unfavorable" markers, your variant will likely respond to treatment and possibly be eradicated. I say this because I used to have a "complex karyotype", a number of mutations according to FISH. I had a repeat one done a few years ago, and the "good" markers were gone. Only the bad two remain. So "more favorable markers" are IMO the people who have the best chance of responding to/being cured.
It's only above 30 ALC that doubling time starts to matter. Your numbers could stablize and even decline going ahead. And when you do need treatment, you live in the best possible country to get it 
Relax, you'll be fine.
breast radiation only interacts with about 2% of your bone marrow, mainly that in your ribs. The change is not related to the breast rt. i think others have given you great advise.
but don’t worry that you made a bad decision with the radiation. you didn’t cause the change. ❤️
Thank you for that!
Just prayed for your restored health and ease on your mind. Hang in there.
Thank you Paula Prayers very much needed and appreciated!
Your numbers may go up and down at this stage - they did for me several times while on watch and wait- so wait and see what happens next!
Praying for them to stabilize or even better go down!
Cfarrar
As many I'm sure will tell you, the rise and fall of both WBC and ALC (and yes I didn't accidentally miss type the word fall) can be dramatic. My own experience in four years post diagnosis has been like a rollercoaster.
Twice now I have either gone fifty percent or one hundred percent in short term intervals. The first time was from October 2019 through Mid December 2019. I was diagnosed in March 2018, so I was a little over one and a half years into this at the time of the increase. I went from 30,000 to 45,000 in two and a half months. I was under the care of a hematologist local to where I live, and I could see by her face that she was alarmed. I decided to seek out one of the top CLL Specialists in the World, who happens to be at Dana Farber in Boston. She listened to my description of fighting a cold for four weeks just prior to the test that showed the 50% increase. She stayed calm and said all my other readings were only slightly decreased (the Red Blood Cells and the Platelets), and she said it could have been my super intense workload while sick for four weeks. She said I had told her that other than that long lasting cold, I had not been sick in a while. She said we'll re test in three months. It went back down to 35,000 on that next reading. So up and down and continue Watch and Wait.
Then came September 2021 for my six month visit to my new CLL Specialist in Boston. My WBC and ALC were 97,000 and 80,000 respectively. In my visit with her in April (only five months separation) The WBC was 57,000 and ALC 31,000. This was 70% increase in the WBC in the ALC but an astronomical explosion of 160% in the ALC in only five months. Again Dr Jennifer Brown simply remained calm and said: other than the big increase in the ALC your RBC, Platelets, and lymph nodes remain in a normal progression. She said I again told her of a ten day cold I had beaten about a week prior to visiting her. She said we will test again in three months to see if things go down. Once again the three month test showed what I feel is an insane drop. In early January 2022 I went down to 46,000 and 34,000 respectively with WBC and ALC. Frankly I was more shocked by the stupendous drop in the ALC than anything I felt when I first saw the increase back in September.
My next readings were very recently in late February with blood work done by a different type of doctor for something else. On February 22 my WBC was up to 77,000 from the 46000 in January, and the ALC was 58,000 up from the 31,000 one month before in January. So once again an explosion in one month of around 75% in the WBC and about 33% in the ALC. THE KEY NEWS IS THAT ON FEB 5 I WAS POSITIVE FOR COVID. So no shock here with 75% increase in one month, because a super horrible illness like Covid is going to send a white count skyrocketing without question. Notice the ALC didn't jump as much as the WBC. This is because it is the ALC that Specialists for CLL are most worried about, and not the WBC. The WBC includes Neutrophils in addition to Lymphocytes, and an illness is likely to spike the Neutrophils along with the Lymphocytes; whereas, without an illness the Lymphocytes with our illness will grow tremendously greater than the Neutrophils.
My purpose with this detailed history of my own, is to show you that your minor increases in WBC and ALC are small little bumps in the road. You have been through hell with your other battle with Cancer, so of course this new illness of CLL has to have you on pins and needles. Unlike what you recently fought and beat, CLL is a slow growing cancer of the blood and bone marrow. It tends not to spread to other parts of the body, and it actually doesnt kill us. It causes problems with Red Blood Cells being crowded out by the ever growing WBC, and also the Platelets being crowded out by those WBC increases. We also have much lower immune systems thanks to the CLL. So the Specialists watch the decrease in the RBC and Platelets, and also how often you are getting sick (immune system). When they feel the growth of the CLL is causing too much problems with the other things, then they start treatment. And the treatment brings everything back into normal ranges. No big deal.
I don't know if your monetary situation permits travel to California. If it is easy for you monetarily, why not see a top CLL Specialist at Stanford. My local CLL Specialist back in January 2020 was getting too alarmed at my 50% increase in a few months, so I sought out Jennifer Brown at Dana Farber for another opinion. She stayed calm and we waited, and I'm still on Watch and Wait now. I'm not saying your local CLL Specialist is wrong about thinking treatment is needed now, but why not get a good second opinion at a place like Stanford if you can afford to do so.
Carl
Thank you Carl! This is so reassuring to hear. The problem is I’ve had no colds, nothing that would cause my increase. I am seeing A CLL specialist in California and she is the one that talked about likely needing treatment this year if things don’t slow down. Did you have to travel often to Boston when you started treatment?
I've been living with CLL for 8 years. My numbers have been all over the map. My oncologist always asks me how I'm feeling and then increases the frequency of my blood labs to keep an eye on me.
My husbands CLL progressed just as fast. He went into treatment and is doing just fine now two years later.
Hello Cfarrar
"Steady is the course". Whereas doubling in 6 months is discerning, I agree with AussieNeil the breast cancer needed to be treated before concerns about CLL.
I was doubling every 2.5 months and was 13q deleted and un-mutated, but did not have treatment until RBC and breathing became an issue. The repeat on flow cytometry test will enable to insure your diagnose of CLL has not changed, sounds like your doctor is taking good care of you.
I required treatment in 14 moths after having "B" symptoms and am in remission going on 4 years. You have plenty of time to not explorer treatment options. Blessings
Well, once again at the risk of sounding repetitive I was diagnosed with CLL almost 20 years ago now. When the white blood cell count started to accelerate considerably I was into the chemo. Just maybe your acceleration is a product of the radiation used for your other cancer. Don’t know, I’m not the specialist. I did do a deep round of radiation treatment recently to kill related non-Hodgkin’s Lymphoma. Everything is in remission now and I am satisfied. Remember, I was first diagnosed with CLL a long time ago and I am still here. You’ve got a long way to go as well. You hang in there.
Leopardo from Canada.
I also developed CLL after going thru chemo therapy and radiation. No indication of CLL prior to this treatment. You will be well looked after, The new drugs for CLL have had excellent results.
Did you possibly get vaccinated in past few months?
No vaccination, cold, anything. I have been feel great!! That’s why it came as such a shock.
Wow, yes, I can imagine your shock, strolling on in and then, wham. I have my 6 mo + blood work day after tomorrow. I don't always feel great, but think it may be be just getting older, being around more people with "allergies" (colds?) etc, nothing particularly bothering me, so my fingers are crossed. Everything did jump, even doubling a year ago after my 2 vaccinations. It went back the next time (but not all the way back). And I have since had a third vaccination, so will see. I agree with comments I've read on here, that these numbers alone may not be sufficient to warrant treatment, and my oncologist told me the same thing mentioned in this thread,, that sometimes the numbers go up then hang out at the new plateau for awhile. Good luck; hope we'll hear that they've gone back down -- or even stayed the same.
A Cancer Clinic where I live has emphatically denied that my Wife's CLL in 2006, can have had anything to do with her enhanced chemoradiation for Colon Cancer in year 2000. This is in a Capital City in Canada; and I mention this due to a Canadian tendency to explain away any and all questions asked of its Provider Class.
To add some perspective here, until the more recently published longitudinal studies examining the changes in rates of cancer diagnoses from the Chernobyl fallout, radiation exposure wasn't seen as a probable cause of CLL.
Neil
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