I'm fairly new, but many of you have communicated with me already.
Went for blood testing today to see if my gamma globulins are too low, and the tech offered to give me the regular CBC results before I left. I was shocked. My white count came in at 45000, and in late October it was 27000. Should I be alarmed?
what your alc and what was it's jump
alc was 18600 on September 26, 2019 and today January 7, 2020 (98 days later) 32,800. The 32800 abs lymphocytes is 73%
you've asked the question so-you've almost doubled your alc in 3 months. I'd be concerned
Hello wizzard166
Yes you are doubling about every 3 months. I was doubling every 2-1/2 months but you still have some time depending on the rest of your blood counts. Now is the time to do as much research/discussion on treatment choices. If you have not done so, get your body ready for treatment with healthy diet and moderate exercise if able. You never know, your blood counts may stabilize. Blessings going forward.
Big Dee I appreciate your input, as I do everyone who has contacted me through this wonderful support site. I just took a look last night at what Imbruvica costs, and it knocked the breath out of me. Everyone else on this site refers to it as Ibrutinib, but that is the Generic name and Generic isnt allowed in the USA currently. From what I'm reading the only Patient Assistance Programs are for the younger people (under 65) who are on regular insurance plans. I like the largest percentage of those with CLL are on Medicare (over 65), and the Imbruvica web site clearly says that their Patient Assistance Programs will not be available to those already on Medicare. Wonderful when at over $12,000 per month cost it is not truly available to anyone but the very wealthy.
I absolutely agree. This is of great concern to me as well.
Hey Aussie Mummy are you in the US too, or is Australia not as kind to those on expensive meds as Canada is. Someone from Canada mentioned in a post recently that they pay $13/refill.
I am in the US. The cost of these drugs is so scary for those of us who are retired.
I have even considered the FCR route. I find this so stressful that I try not to think about it. I just figure that I will cross the bridge when I get to it😬
Hey Aussiemummy
I have a huge expertise in Medicare, so I can give you more input on this.
I checked on how Imbruvica will be covered by any Part D that a person currently has. In essence the first month cost is so drastic, that the person goes through the Donut Hole and into Catastrophic coverage in the second month.
So figure $2300 first month, followed by about $650/month for the final eleven months of each year.
Thank you wizzard166!
Contact the PAN Foundation. You might be eligible for a grant of $7900.00 per year to pay for your imbruvica.
Hello wizzard166
I understand completely. My decision was to do B+R as FCR is not given to those over 65 in US. Back when I was deciding which treatment to take, ibrutinib had just increased in price to $191,000.00/yr. I understand many on this forum are paying about $144,000.00/yr, but might as well be the moon. I have primary private health insurance and Medicare secondary. My cost was to be $15,000.00 per session of B+R or $90,000.00 total. That cost ballooned to $239,000.00 for 6 sessions with added cost of 5 rounds of neulasta. Unfortunately there is not any real cheap solutions. Of the five most profitable drugs, four are cancer drugs. Will take some research on here, but there is help for you with costs. Blessings.
The WBC includes a number of different white cells. With CLL we are particularly interested in the lymphocyte count (sometimes listed as ALC).
As the previous poster asked, what was your previous count and what is it now?
With this, you will be able to receive some comment.
alc was 18600 on September 26, 2019 and today January 7, 2020 (98 days later) 32,800. The 32800 abs lymphocytes is 73%
There are a number of variables with blood tests.
As long as your haemoglobin, neutrophils and platelets have remained within the normal range, then the raised lymphocyte count together with other white counts may well indicate infection or recovery from infection.
If you live in the northern hemisphere where it is currently winter, you may have the remnants of a cold or something similar.
Personally, I wouldn't worry about it, but if your lymphocyte count continues to climb by your next blood test, then it could likely be CLL activity.
The lymphocyte count can shift around under 30,000 as it can be affected by a variety of conditions.
Exactly Seelel!
Thank you for adding some reality into this upto now frightening news for Wizzard.
Wizzard,
Seelel is absolutely right about the degree of noise with an absolute lymphocyte count below 30 and with that being the reason why doubling time is only seriously measured above that count level. This post healthunlocked.com/cllsuppo... includes a plot of 21 real patients' ALCs in which you can see the noise. Don't get concerned until you see a consistent upward trend.
There are a number of ALC curve types with CLL and they include one where it flattens out. IF your ALC continues climbing before flattening, it should reassure you that we have members with ALCs up to the 400s still in watch and wait.
Neil
i learn allot from you Neil. I hope everything is going well😊.
When lymphocytes double within 6 months it can be an indication your Cll is on the move and treatment is nearing. It’s just one thing your doctor will look at and your doctor will be more interested in a trend than an isolated jump.
So I wouldn’t say you should be alarmed but rather that your doctor may want to do your labs more frequently to see if a trend has developed.
It’s not the wbc or alc number that is as important as is how fast the numbers change. The next time you test your numbers might even go down. But if they go up at the same rate as they did from October until now, your doctor may begin discussing treatment options with you.
That’s not all bad. I have been treating with ibrutinib for almost two years now and have been working and playing full time with a good bit of fun travel mixed in.
Jeff I forgot to ask you one thing. Once someone starts on treatment, like you started with the medication you reference on your page, how often do you have to go and re visit with the Specialist following you.
I'm wondering because it impacts any decision i might make to Mato at Sloan Kettering. It will mean a round trip plane ticket each time, so if its once a month versus once every few months its a big difference.
Wizard
A lot of folks have relationships with a local hematologist as well as a CLL Specialist at a research hospital. You might see the CLL Specialist on an annual basis and the local doctor quarterly for blood tests. You don’t necessarily have to select one doctor. This is a fairly common approach given that the research hospitals tend to be in big cities and patients are obviously widely dispersed.
Wizzard my situation was complicated as I was coming off a bout of hemolytic anemia which required that I be followed more closely. After the first few months I settled into every three month trips to md anderson. Now it’s every six months. My last visit was in July. I haven’t even had labs since then.
Everyone is different. If you end up on single agent ibrutinib, not a bad choice in my book, as a first time treater the odds are you would do well and not require frequent visits to your Cll specialist. You won’t know for sure until you treat since it’s hard to predict for certain how each person will respond to treatment.
Ibrutinib side effects, for those who get them, can be managed locally for the most part.
👍
Really good to hear from you Jeff. You've communicated with me a good bit, and I find you to be fair and even minded and knowledgeable. This scared the shit out of me today, because it came close to doubling in three months. I've read on different web sites about CLL, and one of the standards for concern being given as a 50% jump in one year. This is about double that in one fourth of that time. So internally I realize that something big is going on; although, there is the chance that my recent long bout with the common cold has spiked the good white cells much more than normal. That could be due to the fact my antibodies (gamma globulin proteins) might be so low they are below the floor. So to try to save me the good whites are doubling up. Anyway all put together it isnt exactly a good sign.
I was going to call NYC and ask to get in quickly, and it looks like i could accomplish that in a range of one to two weeks (for Mato) and less than a week if I'll see someone else. Then I calmed down a bit and figured wait to see how the Gamma Globulin comes in. I also expect my current hematologist will contact me when she sees today's White count jump, and I could always ask her how she feels about my thoughts on seeing someone at a place like Sloan Kettering.
I would echo what Neil and seelel have written. One isolated test where you see a jump might not be that big a deal. I had my wbc go from 30 k to 70 k to 50 k the weekend I got diagnosed. It was two years later I started treatment.
Even if your lymphocytes are doubling, it’s not some rush to the emergency room thing. Absent a complication like I had with hemolytic anemia, which is not that common, our numbers usually don’t suddenly crash.
With the jump you had I would want to get into see a specialist when you can. Repeat labs will be done and you will get a better idea of what the trend is.
Worst case scenario is you might need to treat. After you get over the shock of that and adjust to your meds, life can return to normal pretty fast. They are still following a small group that started on Ibrutinib some 8 years ago. I think something like 80% of that group is still on ibrutinib with no progression of their Cll. The survival curve in that group is about the same for people that age without Cll.
The results are looking really good for the ibrutinib venetoclax combo group. A significant percentage of that group are seeing deep remissions early on.
Maybe your jump is just a reaction to some virus. Maybe it’s getting close to time to treat. Either way I think you will do fine. And I am not just sugar coating things. Neil would call me out on that for sure if I did. :).
Wizzard, you can trust Jeff's account to reasonably prescribe your likely path with CLL. It's far more realistic than what you'll find in what is fast becoming a historical record of how it used to be via Google searches.
Neil
Jeff you and Neil and many others are a great and wonderful thing for me. I'm hyper as I'm sure more than a few have figured out, but I'm 72 so I've learned to calm myself down with most things. This is new to me, and scary, so I'm overreacting a bit.
When my Father lived with CLL Chemo was the only course of treatment, so I remember what he went through. He was diagnosed much earlier than I, and he died early at 71, but he died from internal bleeding. I think he was overdosing aspirin, because he had heard it helped prevent heart attack and strokes, so likely he could have gone much longer. His Mother had CLL and she went to 93. Her Father had it too, and he apparently went to an old age also. I'm the fourth in a row in that line, so you see I've lived with and waited a lifetime to be the next one. I'll calm down.
You mentioned a long bout with a cold. Your monocytes when fighting a bacteria or virus can take a big jump and push some numbers around as well. In addition were you on any steroids recently to treat your bout with the cold. Steroids can really push the numbers up briefly.
I never sought treatment for the cold, because I've been getting sniffles every month for many months. usually it doesnt develop into what I'd call a cold, but this one did and also went into a bad cough with production. The Monocytes in this latest report (where the WBC went to 45000 were only 4, which is pretty low for Monocytes.
Wizard, I think you'll find Seelel and my replies to you helpful and reassuring.
Neil
Wizzard - obviously you are concerned, and almost anyone “newish” to CLL probably has been the first time or two ( or three or four or more) times that something comes up out of range or making what looks like a big jump. As you settle in to this new reality you learn to shrug your shoulders and assume that your doctor, once you find one you trust, will raise a red flag as needed. This may be the kick in the behind you need to figure out what to do about a specialist and how to set up a good working relationship between that specialist and someone more local. This isn’t urgent, as in tomorrow, just soon, after looking at your options, so that it’s checked off of your to do list.
If NYC is appealing Dr. Mato, Dr. Furman, and Dr. Lamanna are at different, major research centers, so there are some good choices there. All of them are on OncLive videos which you can find on You Tube if you want to get a sense of each of their “styles”. I would work backwards from whoever you chose to find someone local who that person would be comfortable working with.
If closer to home makes more sense, Dr. Asher Channan Kahn at the Mayo and Dr. Pinella at Moffit are both also very well known. I don’t know Florida, so can’t judge distance or travel time on the available roads there.
You will want someone near home who is familiar with your case, should you have an emergency at some point. It’s like having an umbrella to keep the rain away. If IVIG is in your future you will definitely want someone local to work with, as it is usually infused monthly.
What happens should you need treatment is something to discuss with the specialist you choose when you see him/her. Not which treatment, because by the time you need it, if ever, what’s “in” now will probably be ancient history - just options for dealing with it - with the specialist / with a local doctor but supervised by the specialist / some combination of those.
Keep breathing! We’re all here for you!
MsLockYour Posts
it is great to have so many people on this site, of which you are one of, to help calm down a newbie like me. I tend to get overly anxious about alot of things, so something like this would of course send me bouncing off the walls.
I have a hematologist/oncologist who has followed me since diagnosis in April 2018, and she works at Lynn Cancer Center (Boca Raton Regional Hospital) which is now part of Baptist of Miami. I have felt comfortable with her, but now that I'm getting deeper into things my mind is telling me to get to a top place with top names somewhere. Maybe again I'm just overdoing it, or maybe its a bright idea. I can't determine which, but my instincts tell me to reach out. There is a place Sylvester Cancer Center in Miami, and Miami is only sixty miles. Sylvester within 2019 gained NCI Accredidation, so now they are receiving Federal funds for Research programs. Places like Sloan Kettering in NY have gotten Federal funds for decades, so my logical mind says that should make them decades ahead of Sloan Kettering. Lynn Cancer Center, where I go presently, is far away (if ever) from getting that type of recognition.
What would you do?
Carl
Definitely a bright idea! I would find a specialist for a consult. I think it’s important to have one on your team. You may not need to see that person on a regular basis unless / until you need treatment, but if that day comes you will already be an established patient. The specialist will know your history, and you will have had a chance to decide whether you are comfortable with the doctor.
Others have posted that they see their specialist yearly or even that they are evaluated and told that they don’t need to go back unless / until their CLL becomes active.Even if you need treatment, the specialist might evaluate the situation, but work through a more local doctor so that you can receive it closer to home.
I only came up with posts from one person who had been to Sylvester - @lumdor You could message him to ask about his experience there. Dr. Rosenblatt, who he saw, sounds like a good hematologist with an interest in CLL, but not a CLL specialist. He might be an excellent doctor to be connected with, with a true specialist somewhere in the picture.
If you plan to travel up the coast, Sloan and both NY Pres. facilities would be excellent choices, as well as Dana Farber in Boston. If you have family or friends near a major center who you would like to see more often, that might influence your decision. It would also mean support while away from home. Some choose Dr. Kipps and team in San Diego because they figure that once travel is involved the distance doesn’t matter, and they can combine their trips with mini vacations - especially true of people who want to get away from winter.
Another option to look into is a “study” at NIH (National Institute of Health) in Bethesda, MD. All services are free and travel is paid for. They also offer a stipend for lodging. I’m not sure whether their Natural History Study for CLL Patients is still recruiting. They have a new study about the shingrex vaccine. If you are in one of their studies, you are followed by top CLL specialists, and you are first in line for any trials they are running if you need treatment down the road and are interested in a trial.
Some things to think about. Now is a good time for you to do your research, ask questions, and decide the direction you want to go in.
Once again I truly appreciate you. I keep going back and forth over what to do, and I've been asking input from my Brother (Opthalmologist in Mountains outside Denver) and Cousin (Derm in Phila). I've gotten two different responses. My Brother has said to seek a CLL Specialist, and Cousin thought I might be overreacting and suggested I ask my presnet Hematologist at Lynn Cancer if she thought it was a good idea. That is as of three days ago, so I'm bouncing back and forth in my head about both suggestions. Mainly I lean toward you and my Brother.
After i just jumped from 30000 to 45000 in three weeks, my local hematologist through her nurse suggested she should see me more frequently. I pushed the nurse and scheduled two weeks. Overall the Nurse was saying its probably just because I have had cold symptoms for two weeks. I don't believe a cold, even struggling for two weeks with it, would jump a white count from 30K to 45K, but maybe its true. My Gammaglobulins came back at 629 and the nurse said normal is 630 to 1000.
I'm beginning to wonder if I'm going to fit into the aggressive group; I hope not, but who knows. I did have Trisomy 12 in my initial testing in April 2018, so likely I'm at least in the intermediate group.
Thanks for all of your help.
Carl
How do you feel? Don’t get too crazy about the numbers! Research and talk to you oncologist! One thing I wish I had never did was get so excited about the numbers! All that worrying for what! Stay focused and get some sound advise from oncologist! 12yr CLLer with 9 months of imbrutinib on board
I know I'm overdoing it; however, you are nine years and I'm a year and a half. I'm sure in the beginning it messed with your mind too.
Yes but after this 12 year ride the best thing to do is relax! At about where you are now I wanted treatment and my doc said think of treatment as a revolver you get 5/6 good shot at treatment and after that Katie bars the door! So I thought about it and said OK I want from seeing doc 6 times a year to 2 and went back to living which is most important! So try to relax have a beer and go fishing! Good luck
Beer and Fishing arent my thing, but Vodka and a game of chess; now your talkin
Perfect!! And enjoy!!
There was a time a little over a decade ago, when i went into Yahoo chess rooms late at night, started with my first vodka, and played for hours. Wasnt a real happy time in my life, but i did love the chess. I started out pretty good competitively at an intermediate level, but as I drank through the night I started to play beginners to even have a chance. Crazy time, sort of like this but different with the sad issue, but I did enjoy that chess and vodka
I understand what you mean about not getting too excited about the numbers. But when the numbers rise isn't that an indication for needing treatment soon (that's what my cll specialist told me at my last visit) I'm 😕 confused.
I would say yes and no. But still no reason to get crazy. I would sit down with all my blood results and always get them! And figure out an average mine wbc went from 39k to 123k and I felt great so a lot depends on how you feel. Before starting treatment I kept close eye on numbers they didn’t double a second time but I felt like doo doo for a couple weeks and then started treatment fatigue for me has been worst symptom which after 9 months on imbrutinib has gotten better. Not everyone’s wbc count is equal for starting treatment me I was under 200k when I started and some people are fine at 200k so it a personal journey that way and that’s why they (docs) use doubling method. I always used to try and pin treatment to a number and you really can’t! If you feel good go out and feel good !
wizzard, I can remember 2 yrs ago this month having quite a big jump in my WBC/ALC over a 9 week period. I was panic stricken as untreated then and imagined all sorts of nasty things developing. In reality it was a combination of stress and an undiagnosed viral infection that had caused it. Over the next 2 yrs my levels never raised beyond that hike (except when I started Ibrutinib obviously).
These things happen in the crazy world of CLL and whilst we need to check them out, panic isn’t necessary.
Best wishes,
Newdawn
Thank you once again Newdawn. I'm beginning to calm down, and get back to my more normal version of myself.
Wizzard,
After reading your post(s) and the reciprocating dialog, here is my two cents worth.
- Be concerned and don't let your guard down, but resist the urge to panic.
- Revisit the idea for of your level of confidence in your doctor.
- Follow up on your concerns with substantiated evidences (including forum resources).
I read somewhere that You cannot tell someone what they already know (meant as a compliment).
OK, three cents worth. I have just about rubbed through the first two.
JM
Calming down is a wise idea. I havent abandoned my doctor, and i think she is knowledgeable, but I also fully believe we should give ourselves the best shot we can take. If we view life continuing (as opposed to ending) as making the Pro's, and we have the ability to make a college team in either Division I or Divsion III, would anyone in their right mind tell us to take the offer at Division III? Its not whether the Division III team has a nice history and a good coach, its that the Division I team gives you the better odds at getting where you desperately want to go. For me its living and for the athlete its the Pro's. So why would I purposely choose to stay with the hematologist at Lynn Cancer Center, if I'm not blocked by Insurance type or travel costs to go to a Sloan Kettering or MD Anderson, Mayo, Johns Hopkins, or Dana Farber. Am I overthinking this? My more difficult question right now, is should I be looking at the close to home Sylvester Cancer Center. Maybe not a Division I, but they got NCI Accredidation last year.
Sounds like a winning objective.
All I might add is "Play me, or Trade me".
If I try to sit and watch, there is a good chance that I will get thrown out for involuntary involvement.
I like your attitude Smakater
We all share the attitude to live well.
Build out a team. Keep your doctor at the Lynn Cancer Center but add a CLL Specialist at one of the “Division 1” programs you reference above. That way you have both convenience and cutting edge research. At critical junctures you can get the advice of the CLL Specialist but for more run of the mill stuff you can work with your local cancer center. It does not need to be one or the other. Think about a team with specialization.
Best
Mark
Hope
I'm not sure if you caught all of my writing on this thing I'm pondering, but I don't have a doctor at Sylvester. My doctor is a Hematologist at Lynn Cancer Center in Boca Raton. Lynn isnt at the level of a Sylvester, or close to it, but they are a decent facility and has decent doctors. Sylvester is associated with University of Miami and the Medical School, so it is a level well above Lynn. Sloan Kettering is like a Sylvester, but I'd say at a much higher level.
Our doctor who does specialize in CLL is at Sylvester. Alvaro Alencar, M.D. He also has access to the clinical trials. So far nothing needed other than IVIG.
Wizzard
MsLockYourPosts mentioned Dr Pinnella at Moffit. He has been mentioned/praised many times on this list as a trusted CLL expert. You may want to consider someone closer to home as your expert, esp if $ concerns are part of your equation. You could keep your local doc and see him once a year.
Teddo thank you for your input. I havent even looked at Moffit, and I don't know how they compare in level of capabilities to places like Sloan Kettering, Mayo, Johns Hopkins, Dana Farber, etc. For all I know they are on the same level as Sylvester in Miami, and Miami is about one fourth the travel time it would be to Tampa for me. If Moffit was a level or two above Sylvester, then that would definitely interest me, even with the four hour drive.
White count increasing 
White blood cell count surge and prednisone 
Critically low white cell count
Highest white blood count
