My purpose of this post isn't to ask a question; instead, I wanted to share information with our group. I started on Brukinsa (Zanubrutinib) on January 1, so yesterday was eight days of full dose. My dose is two 80 mg pills twice a day.
So far no side effects that I'm aware of. I haven't had any of the typical side effects yet, nor any serious ones either. The last two nights were interesting in that my horrible drenching night sweats, which I've had for at least a year now, stopped. Maybe they'll just start again tonight, who knows, but for now two nights in a row with none.
This Morning I had my one week blood work and exam, at my local Cancer Center in Boca Raton FL. I'm ecstatic with the initial results. My WBC went from 137,400 on December 13th, to 76,800 today. My Hemoglobin went from 11.6 on December 23 to 12.5 today. My local Oncologist did say that I shouldn't be shocked or sad if my next blood draw shows a spike in the WBC, because it is typical as a first response to Zanubrutinib to have a spurt upward in the White Count.
My wife and I leave on Sunday by air for Boston, where on Tuesday I'll have another blood work and exam with my lead Oncologist at Dana Farber. I'm hoping that the WBC has stayed down instead of the possible spurt upward, and it would be really nice if it has dropped again. We'll see. I also mid last year had an MRI that showed by Spleen to be 20.5 cm. In September in Boston she also did CT scans of Chest, Abdomen, and Pelvis, and they showed huge proliferation of lymph nodes in both numbers and size from prior scans. I don't know if it is too early for her to order new CT Scans next Tuesday, but I'd love to know if the Spleen is going down in size yet and the lymph nodes are also decreasing. I'll let you guys know how Boston ends up next week.
Stay healthy, keep improving if you're on treatment already, and live long and prosper.
Carl
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wizzard166
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I couldn’t continue with the brutinibs (tried 3) and discontinued them after 1.5 years. I still work full time so this had a lot to do with this decision. I think. Perhaps I could’ve continued if I was retired but who can say. I’ve made it 2.5 years with no treatment and see my specialist Aug 1. I wish only the best for you and hope those much more experienced than I can offer their thoughts about your specific needs.
If you have numerous enlarged internal nodes, IMO it would be a good thing for your lymphocyte count to rise, which would mean those cells are definitely getting pushed out of the nodes. And FWIW not all of us here are guys, please don't exclude us women from the conversation.
I'm confused Sofia; I never referred to our group as guys in my post. If you notice my first sentence it says Happy New Years to all my friends on this site. From that first sentence onward I never once reference gender in our group. Am I missing something?
OK but that really isnt a Gender expression in the States. When saying you guys, it refers to a group of people that usually includes multiple genders.
With respect to the use of "guys", this article from Australia's national broadcaster, the ABC; Is it time to stop saying 'guys' at work is relevant.
abc.net.au/everyday/is-it-t... as it notes "While many people feel "guys" is now a gender-neutral term, critics say it can be an exclusionary way to refer to a mixed-gender group or a group of women."
:
What are your alternatives?
Alternatives to "guys":
All
You
Team
Everyone/everybody
Folks
People
Friends/pals/peeps (informal settings)
Arguably, one of the reasons "guys" has persisted for so long is that the English language doesn't offer many easy replacements. (My emphasis)
The article also states Don't we have bigger fish to fry?
For some, debating the phrase "guys" sits at the bottom of a list of priorities in the struggle for positive social change.
I'll just comment that with Roe vs Wade getting overturned, and racism as well as sexism rising in the US, many of us are more sensitive than previously. I am pointing out a gendered comment, and FWIW at least one of us here is uncomfortable. I faced a lot of sexism during my career as a woman in a STEM field, so I am sure I am more sensitive than others.
Thanks for chipping in on this absurd concept that my reference to "guys" was a masculine prejudice. We're not supposed to get into politics on our site, so I won't comment on Roe vs Wade, but I'll simply say I believe that a woman has the right to determine what is best for her and her body. I therefore believe it is great that your Wife enjoys pounding fences. One of my Wife's good friends took up Body Building a few years ago (she is much younger than us), and recently placed very high in a Regional Contest, and I say "More Power To Her". Honestly I wouldnt want to get her pissed at me.
Over many decades I've always parted wonderful heartwarming social events with men and women together with the phrase "see ya guys", and no one ever took offense or looked at me strangely. Enough said with this nonsense.
Anyway as Brad Paisley sings: "I'm I'm Still A Guy"
Jumping in here on the use of “you guys”. It is an expression used in the New England area of the Inited States. I am assuming Carl has ties to New England since he goes to Dana Farber. It like people in the southern part of the United States saying “ya’ll. It is not sexist it it is for everyone at one time. Gender neutral.
I appreciate your understanding of my natural phraseology that absolutely has nothing to do with ignoring the female gender and their rights.
Actually I'm originally from the New York City area, Brooklyn to be precise as a child and then Long Island as a Teenager and young adult. I chose Dana Farber and the Woman who is their Director Of CLL, because I can go anywhere to see anyone with Original Medicare and I wanted the best shot I can get at making it a long way with our illness.
My Wife and I have come to love our trips to Boston, and although I couldn't bring myself to root for the Celtics I would love to have a second home there if I hit the lottery.
I was born in Massachusetts but raised in Rhode Island. My husband went to Dana for a second opinion when he was first diagnosed and they sent him right back to RI cancer center. They said the doctor there was as good as any up at Dana. Plus the commute was much easier!
Near me I have Lynn Cancer Center in Boca Raton, where I was diagnosed. They are not NCI Accredited, but I think they are a decent place to be followed and treated. I do go there now once a Month for IVIG infusions.
Knowing I was potentially in line for a more aggressive case, due to the two genetic mutations I have, I decided to do my research and pick out the top few places in the the United States for CLL. I focused ultimately on the top person at Dana Farber, Sloan Kettering, and MD Anderson. I sent the Bio of each of the three to my Brother Matt, who is one of those super brilliant people in Outer Space so to speak. Matt was accepted to Medical School while still in High School. He got back to me in a day or two and said: "go with the woman in Boston. She leads the Nation in Genetic Research on the illness, and she is the doctor who brought the first pill to FDA Approval (Imbrutinib). So I reached out to her and was really lucky to get in with her as one of her patients. I'm so grateful and so lucky to be followed by her.
Dana is tops in cancer! Dana had been trying to get my husband’s RI doctor to join the team in Boston. We have since moved to Colorado. Both my husband and I are seen at Rocky Mountain Cancer Centers. Yes, we are a husband wife team of CLL. Husband has the addition of SLL and I have the addition of MGUS.
He just started on Zanubrutinib after being on Ibrutinib for almost 4 years. I am early stage so W&W.
Good luck starting zanu. Husband has not noticed any difference thankfully.
In Australia, we are more likely to talk about our mates not our pals, which from your reference en.wiktionary.org/wiki/mate the origin is "From Middle English mate, a borrowing from Middle Low German mate (“messmate”) (replacing Middle English mette (“table companion, mate, partner”)"
Exactly! We have over 22,000 members and the problem with our 'shared' English language (with each country and even areas within countries having usage differences), is that if we wish to avoid sensitivities, we seem to lack a suitable inclusive group word. Even words with a positive connotation can be used negatively. Ideally, we would be able to accept words in the manner they are intended, but discrimination can have a long term impact.
I'm a non-native English speaker whose third language is English (out of 6). I almost feel like I have no fish to fry here🙂 but"guys" is ok from where I look because there are about 56 genders now and I wouldn't be able to learn all the different ways to address each. Saw a video where a non binary person wanted to be called zee or sthg. I got lost there. No offense meant to anyone.
The thing to realize about Lymphocytes and white blood counts in general is that WBCs are all over - in tissues, skin, spleen, nodes, and marrow.
Blood is simply easier, and only correlates with overall counts in the body. It correlates poorly sometimes. Ask an SLL patient about their blood counts.
I understand your premise that blood work is relatively meaningless, because there are dozens of other places in the body where white blood cells might be hiding. I however disagree with the premise.
While you are correct that tissues other than blood contain some amounts of white blood cells, we do not have a mechanism to get a total white count in those areas other than bloodstream. Since the blood however has a constantly changing but measurable amount of total white cells and each different type that makes up the total, it is very easy with sophisticated machines to get an accurate count of total and differential. Once you have those numbers we can chart and graph the numbers and use it for diagnosis.
The Bone Marrow is the other area that can be studied and numbers of different types of white cells measured accurately, and the percentage of the bad cells in the bone marrow is an absolute way to determine how far progressed our CLL disease is. The problem with measuring by this means, is of course the expense of the bone marrow biopsy procedure and its unpleasant pain level for the patient. My Specialist at Dana Farber told me in the beginning of our relationship, that she uses bone marrow biopsy near the end of the Watch and Wait Period to confirm timing of starting treatment. When I first met with her it was because my percentage increase of Lymphocytes and WBC in a two month period was greater than 50%, and my local Specialist was very agitated about it. My Dana Farber new Specialist at that time ordered a bone marrow biopsy, and that helped her determine that the huge increase in blood levels of WBC was not due to a sudden aggressive change in my underlying disease.
I've learned over my six years in Watch and Wait, which of course just ended on January 1, 2024, that the blood levels of WBC can go up and down like a Theme Park Roller Coaster. For that reason they follow the Hemoglobin and Red Blood Cell levels, the Platelet levels, how oftern you are getting sick, drenching night sweats, numbers and sizes of lymph nodes in the chest, abdomen, and pelvis, and size of the Spleen. All of these are factors the top Specialists use to determine timing of when to treat, aside from pattern of WBC increases and Lymphocyte increases.
So in essence I agree with you Sidney, but I wouldn't say that blood levels of WBC and its differential are not the main factor used to follow the progression of our illness.
I agree that blood tests are convenient, and said so. They are not used for diagnosis at all. The counts are a sign that begs for further testing to diagnose.
I push back on obsessing over ALC for several reasons:
1. The surge in WBC after early dosages of BTKi,
2. The absence of lympcytosis with SLL
3. The poor correlation betwen ALC and staging
4. Poor repeatability of blood counts done at the same draw and sent to different (or even the same) labs
5. Circadian variation in various blood counts
ALC is only good for trending. Add or subtrack a 5-10% accuracy margin for usual counts. Ignore counts immediately after start of treatment till about a month or two has passed. I know, it's hard. Been there.
In short ALC doesn't mean what most people think it means. It's rougher than most people think. No need to panic - the doctor will order better tests if needed.
Good to hear from you, and thank you for being happy for me.
Honestly I don't even feel like I'm on a medication, from the standpoint of any negative body or sleep changes. I'm not dizzy, nauseous, tired, in pain; nothing.
To see bloods dropped significantly is not uncommon. Some do spike, some, like me when I started Ibrutinib dropped immediately. My ALC went from 124 to 12.4 in 19 days! My symptoms stopped 24 hours after taking the first tablet. These inhibitors are pretty amazing and it looks like you are very sensitive to their actions. Congratulations
Thank you; it feels great to know I'm Moving Forward. Maybe I'll get to see Kings Crossing once again.
You mirror what my local Oncologist told me yesterday, when I had my one week blood work and visit. I was ecstatic that there was a drop from over 130,000 to 77,000. She said not to be surprised if it spurts upward soon, and told me not to worry if it does. It was either her or one of us on this post, that told me as the lymph nodes are done away with the white cells are released from the lymph nodes into the bloodstream.
Hi Carl, thank you for posting. As I guess one of many thousands on "W & W" I always find it interesting how one person reacts to the certain types of drugs available for treatment. I'm relieved you're doing well up to now and wish you the best for the coming months.
I really understand how you feel, because throughout my Watch and Wait period I was constantly eager to read what others were saying who were on treatment. I have to say almost no one in that category posted about things being good, and most of those posts were about things beginning to go wrong again. There were of course also many posts from those who were happy and in remission, but I was always downhearted when I read the ones who were suffering again. I'm happy that all of them shared what was happening to them and how they were dealing with it.
I made this post to give those still in Watch and Wait, hope for what likely lies ahead for them when the treatment is clearly working. Now I'm in that other group on our site who are in treatment, and I hope I can continue to give wonderful news.
What I don't know yet is how long we stay on Zanubrutinib. I asked one of the Nurse Practitioners, and basically the issue with an answer is how recent the use of Zanubrutinib is with CLL. I think it was only approved for use with CLL in the last year or so, thus I guess it can't be known how long will people be on this drug as an average. I suppose the average length of time for those who were on the very first one to reach FDA approval, which is Imbrutinib (Imbruvica), would be a pretty good indicator.
I'll be updating again after I visit with Dr Jennifer Brown at Dana Farber on Tuesday the 16th. I'll ask her what she feels is the likely time period a person would stay on Zanubrutinib, and of course she has the most data of anyone on those who started with Imbrutinib. She is the Doctor who brought Imbrutinib to FDA approval.
I saw your first post about Medicare and the Rx program, and I did a seperate Post on that question not long ago. Basically it almost is irrelevant which Part D Rx a person has, because the incredibly high Retail Cost of the Novel Targeted Theraputic drugs is over $10,000 per Month. My Zanubrutinib for example is $15,000 per Month. In 2023 the financial loss for each of us who obtains these medications through Medicare Part D was about $13,000.
In 2024 the Medicare Part D Rx program has changed for the better. In the first Month of use (January) we will be out of pocket about $3,000. This is because in one Month of Part D these expensive drugs put us through Deductible, Initial Coverage, GAP Coverage, and into Catastrophic Coverage. Then in months two through twelve in 2024 we no longer have the costs in the Catastrophic Coverage stage, so all of our medications including the Novel Targeted Theraputic drug will cost us $0. In 2023 Catastrophic Stage still existed at 5% of cost, so in 2023 my drug would have cost me $750/month for Months 2 through 12. Now in 2024 however I'm home free after that first month of $2700.
The reason it is almost irrelevant which Part D Rx you use, is because our one grossly expensive drug puts every Part D plan in Catastrophic stage in Month One. Then each and every Part D Rx plan would then result in $0/month costs in months two through twelve. The only difference therefore is the monthly premium of the plan, so obviously the best plan to use is the one with the lowest premium; unless, that plan doesn't have each of your other medications in its formulary. Of course it is also critical that the plan you choose has the one grossly expensive drug we take in its formulary too, but almost every Part D has Zanubrutinib in its formulary. Its my work, so of course I know each and every facet of this.
Good morning Carl. I started Brukinsa on 8/23/23. I am being treated at the Duke Cancer Center. I am coming up on six months of treatment next month. I have a CT scan scheduled right before my February visit. I also got the spike in my WBC about 1 month after I started treatment. I also had large lymph glands in my abdomen. Some were pressing on my bladder. Just slightly uncomfortable. Totally fine now. My WBC before treatment was 221k, after treatment it went to at least 348K and in December it was down to 48k. My hemoglobin has improved, more slowly and all my other numbers have improved. Initially, after several weeks of treatment I experienced some pretty severe back pain. It has been long gone now. But I do have some continuing stiffness in both knees. But I am able to walk 4-5 miles everyday. I am 72, so that’s not too bad!! Best of luck! Give it some time, 4-6 months to get the full benefit of the drug.
Thank you for the input; especially, since you seem to mirror where I was when I just started. My WBC was much lower than yours with you at 221 and me at 135, but my Spleen was 20.5 cm and causing some abdomen pain. I too have had pressure on the bladder, with me getting up on the average three times a night to go relieve myself. It then was a little difficult to get it to start, each time I got up and went. I also think I've had pressure on the bowel, with a feeling many times a day that I need to go again (and then many times nothing). My knees and back have been pretty painful too, but that has been before I started the Zanubrutinib.
I'm glad to hear you had a spike one month after treatment; not really, glad but good to know the timing on that. I've been so ecstatic I went from 135,000 to 77,000 in nine days, but my local Oncologist warned me not to be upset if it spikes again. So hearing of your progression and the timing of it really helps.
Duke is a great medical center. I used to take at least two trips to the Chapel Hill area every year for about ten years, back between 1995 and 2005, when I was married to a woman who was born there. One time I was disturbed with something happening to her Father, so I took it on my own to get him in with Neurology at Duke. It saved his life and I got to get the feel of the place. Early in my careers I was a Hospital Administrator, so when I walk the halls of any medical center I can feel and sense the quality of the staff. I can say that Duke is a fabulous place.
Wizzard166, I started on another BTK inhibitor just before I had my annual diabetes blood test; my GP phoned me with great concern when he got the FBC result as my WBC had spiked hugely and well outside its previous levels. Once I told him of starting the BTK inhibitor he understood that it was the effect of the Acalabrutinib knocking off the deformed B cells.
I simply left it up to my lead Specialist in Boston at Dana Farber. After all she is the doctor who brought the first drug of this type (Imbrutinib) to FDA approval, so who better to decide which one to use. She is also the leader in the Nation on Genetics as it relates to CLL; in fact, she is the doctor who developed the Genome for CLL.
With that said my understanding is the Specialists look at your genetic mutations. I'm IGHV Non Mutated and also Trisomy 12, so my mutations are indicative of a more aggressive type of case. My case did start to accellerate quite a bit with huge proliferation of lymph nodes in numbers and size, and my Spleen had gotten very big and hurting a bit, so although my RBC and Hgb and Platelets were not yet in danger zone she felt it was time to start. My guess is she used Zanubrutinib because it currently (I think) is showing the fastest and biggest response with reducing lymph nodes and white count. It also is showing much less dangerous side effects with the heart than the earlier versions of this type of drug.
Thanks for sharing thst info. I’ve been on Brukinsa about two and half months. My WBC went from 55k to 8k in the first two weeks. Other numbers such as hemoglobin neutrophils etc have improved. I’ve had no noticeable adverse effects. The reason oncologist started me on Brukinsa was my anemia was not improving. I will see him next week and am prayerful that things are continuing to improve. I am beginning to notice some aching in bones and sone days I’m sleepy earlier than usual. I’m hopeful that the med will continue working for us for many years.
My joints hurt a good bit too, but I'm not sure its from the Medication. I do seem to be getting a little more fatigued each day, so we'll see how much that continues.
My joints aren’t hurting a lot but I was told by the chemo nurse to take Tylenol if they started to hurt. Also get some cannabis crème and rub it on your joints. I use biofreeze on my hip but that’s an old ache from time to time said to be from sciatica. If the med Honda off the cancer we will figure out how to manage the aches and pains, I pray. I’m told that we can push off fatigue by doing exercise. I haven’t gotten there yet but plan to start walking and build it up. Hang in there.
I can really relate to you with the exercise conumdrum. I know I should start back again, in that I stopped three times a week in the gym when Covid started, but the thought seems so daunting to me. I'm not horribly out of shape at 6' and 215, but still I know for sure that exercise improves our chances with any cancer. At least I went with my wife to Disneyworld to end the year. We did three parks in three days, and I managed to make it to the end of each day for fireworks, after arriving about 2 pm each time. Just walking the parks was a big deal for me, but I made it. Now maybe I can force myself to at least start walking about one mile each day in the Morning within my development.
I finally made the move to return to the Gym, and today unfroze my account at LA Fitness during my first visit back. I was smart and didn't try to do anything at a level that would push me. My goal isn't to bulk up; it's only to improve my conditioning and add a little muscle to my frame. With the time away from the Gym, which is once again over one year (and I had also stopped during the bad stages of Covid in our Country, my muscles have definitely shrunk a good bit. I figure that if I go three days a week and start with much lower weights, add some weight to each different machine only when it is too easy at the lower weight, over time my muscle level should return to where it was prior to Covid. I don't know if I'm right about this, considering my advanced age (76), but to me its the only smart way to do things. I also am doing a little Treadmill for ten minutes before I do six different machines, and then ten minutes at the end, with a total time of one hour each time I'll go. This first visit was fine, I didn't break a sweat but I don't care, and at least I'm looking forward to going again on Monday.
Sounds like you’re on the road to great success. I’m still procrastinating but I kinks I need to get moving. It’s best to slowly progress and not overdo. I have a walking pad and goal is to start out with 10 minutes and build up gradually. I also have bowflex treadclimber. That thing works the entire body a lot so I need to wait before tackling that again. You have definitely inspired me. Keep on pushing!
Carl The Wiz - Great news, been following your CLL journey (posts, etc) and good to read treatment 1 going well. Good luck 🍀 on upcoming test results.
I’ll never forget one of your old posts n your dream to make it to a “closer” (aka, a late baseball inning pitcher) in life’s journey. Looks like positive steps towards your dream.
My oldest Son's name is Danny, and I appreciate your interest in my journey. When I played Basketball in High School, in my Senior Year we went all the way to the County Semi Finals in the Nassau County Coliseum. I was the type who always wanted the ball in my hands for a final shot at the buzzer to either tie or win the game. This blood work on the 9th was like hitting a shot to begin catching up, heading into the end of the fourth Quarter. We'll see how it goes into the final minutes, but I'm definitely up for it.
It's all right for you "lot". I live one field and a river away from 'salf' Derbyshire. Over there everyone is Duck, Luv or Darling. Not many "pets", that's somewhere else.
Works canteen, "Wot you havin' Darlin'?"
Summer interns from down south when they first get called Darlin'. LOL.
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ER visit after 13 days on Zanubrutinib (Diagnosed 13yrs 8mos b4 needing treatment)
New to CLL so confused 
Off BTK Inhibitors 
