I am posting after a year. My wife was diagnosed with CLL in 2020. She is still in W&W form. Her WBC and Lymphocyte are climbing linearly. I'd like to hear from hematologists, CLL specialists, and CLL fellows and so on. She has TP53 muted, 13q deletions, and 12 trisomy. Her last blood test in March 2024 revealed that she has WBC above 100, HB 114, Plt 145, and lymphocytes over 100. She has normal RBCs. We have been following Dr Chen, a CLL specialist at the Princes Margaret Cancer Hospital in Toronto.
I'm curious to observe her increased WBC and Lymphocytes, and when is the best time to begin treatment. She is currently feeling weak. Which treatment approach would be most effective, and how long would the remission duration be with such markers?
I would be grateful if you could please answer to my post.
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This pinned post covers the triggers for commencing treatment and Dr Chen should be using the iwCLL guidelines as a basis for recommending starting treatment. healthunlocked.com/cllsuppo...
As you'll read, there's no lymphocyte/WBC count threshold for starting treatment - it's how fast the CLL tumour in the blood is growing (doubling time under 6 months - exponential growth), that is relevant. From looking back at previous lymphocyte counts, it appears that your wife's lymphocyte count is doubling in around a year, but you note a slower, linear climb. You haven't mentioned concerning changes in your wife's lymph nodes or spleen, so I can't see why Dr Chen would suggest starting treatment, unless extreme fatigue is an issue? You do note that she is feeling weak.
Thank you very much for your response with relevant link of literature. We have appoint with Dr. Chen next month however, still has not decided yet treatment.
Dr. Chen is one of the top CLL specialist in Ontario, so I can't see her not following the guidelines. Dr. Chen is also the lead in the Bruin 321 trial at Princess Margaret hospital which I am part of.
In 2020 when a hematologist called and told me my wife has leukemia a type of blood cancer I was shocked to hear the word cancer. Then I consulted with my fellow medical person and looked for checking and reading about Leukemia. Later it was identified as CLL then I searched who is specialist in CLL in Canada. I found Dr Chen recommended by the CLL Society for CLL treatment. Then I emailed her and she invited my wife for examination. We are very fortunate to find her as the physician of my wife.
This forum is mostly patients and caregivers, none of us are CLL specialist physicians, or fellows, or hematologists. It's a patient support group.
I'll comment that I was really weak, and had problems mentally focusing, with drenching night sweats even though Stage 0. A bone marrow biopsy indicated the CLL had almost completely infiltrated my marrow, so I was pretty sure my other cell lines would fail shortly. I also had "bad markers" indicating my variant was not likely to be benign. So I started the process of getting treatment.
RE: Which treatment approach would be most effective,
TP53 mutated everything is available. Unmutated or unknown IgHV, cBTKi drugs Acalabrutinib or Zanubrutinib are probably best. For mutated IgHV, short duration Venetoclax + Obinutuzumab is a possibility.
This is due an update as Zanubrutinib is available (at least in some provinces).
RE: and how long would the remission duration be with such markers?
No one knows, you may as well be asking "how long is a piece of string"? No two CLL patients are alike even with the same genetic markers.
There is no remission. cBTKi drugs are a continuous maintenance therapy that keeps the CLL at a controlled low level, this is rarely a complete response (CR). Some people do find they can stop taking the cBTKi for a time, usually when they have to stop for some other reason. Others find they progress rapidly when/if they stop.
Hello fellow Ontarian! I think Princess Margaret is an excellent cancer treatment facility in Ontario. I am in a different part of Ontario. I am soon ending my watch and wait period (because of a cluster of enlarged lymph nodes beginning to affect my abdominal organs). I am female, 59, and no significant health issues other than SLL/CLL. My hematologist is in the process of doing genetic testing. So far, he is recommending FCR (chemo) if I am IGHV mutated, as I am considered “young and fit” (🤣). If I am IGVH unmutated, Venetoclax and Obinutuzumab. He also mentioned the possibility of a clinical trial of a drug similar to Venetoclax (maybe Sonrotoclax?). Because Canada is a publicly funded, universal healthcare system, you may notice that treatment options are different than the ones mentioned by the USA folks on this (excellent) forum. There are Canadian guidelines for CLL treatment that were published in 2022, and the Drug Formulary outlines which drugs have been approved for use (sometimes varying between provinces) as each province administers the healthcare dollars that they receive from the Federal government.
I am also a Canadian but the west coast. I can tell you my experience-my Hematologist works from a premise that once WBC and Lymphocyte is 100 or more he recommends treatment. I was at 98 when he suggested treatment but we were going on holiday for 10 days and he said go on holiday and we will start treatment when you return. (I was on W&W for approximately 3 years). When I came back from holiday my WBC was at 136. He gave me a choice of treatment and because ibrutinib seemed to have the best efficacy I chose that treatment even through I would be taking ibrutinib by mouth for??? opposed to going to the hospital every month 2x for 9 months- the other treatment. In 10 months with taking 2 pills daily everything is now in the normal range. My Hematologist said 'you are cured' and with a laugh reminded him he told me in our first meeting I would never be cured. My next goal is hopefully in a few years I can take a medication holiday. I still have fatigue and need to pace myself-getting much better with doing that. I still wear a mask when outside my family. I am resuming activities that I love again and accept the fatigue . I don't know how old your wife is but I am 75. I will be competing in my first regatta (in 3 years) in my single in a few months if there is no stop and go training. I wish your wife positive thoughts.
Your experience is not unusual with specialists who don't specialise in CLL treatment, but the top CLL specialists don't use high WBC/Lymphocyte counts as a trigger for starting treatment. Instead they monitor lymphocyte doubling time and when that is shorter than 6 months, look for confirmation from other indicators that treatment is required healthunlocked.com/cllsuppo...
Thank you for sharing your experiences with CLL. My wife is now 54 years old and has been in W&W for the last four years. In May, we will have a follow-up appointment at Princes Margaret Cancer Hospital in Toronto. I would like to know about treatment costs or insurance because we do not have any. May I ask how much your WBC is after using ibrutinib? God bless you!
My WB count is 7.3 and normal range is 4.0-10.0. My lymphocytes is 4 with normal range (1.0-4.0). Also the Cancer society in BC pays for my medication. I hope this helps. Everyone's fears related to the diagnosis of CLL is unique but for me it wasn't so much the diagnosis but starting treatment made it real for me and putting the first pills in my mouth was hard not knowing what it would do but again for me acceptance has come to having CLL and treatment and it no longer is a defining aspect of who I am-it took time to get to that point and I'm sure I will have more challenges to face in time with CLL. Again positive thoughts.
Great information to us indeed. It is good news that your WBC and Lymphocytes returned to normal by taking ibrutinib. I think you are in remission which is good. I wish you a long remission period. So far I understand the longest remission is good symptoms for CLL. All the best Rower49.
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