Hello. My husband, Simon, was diagnosed with CLL several years ago and has been closely monitored.
On his last visit to his consultant he was told that he needs to start treatment. Either Rituximab or Venetoclax.
My husband is always dismissive of his condition and does not want to discuss with me as he thinks he is way off becoming unwell. He also doesn't want to worry me.
I would like to know if anyone can give me an idea of what stage of CLL he has. His last blood test showed 91.27 x10*9/L total white cell count, and 95 x 10*9/L which means absoultly nothing to me!! Also out of range is Monocyte count (3.65), lymhoctye count (82.14) and basophil count (0.91)
He now has to have some scans before treatment commences.
Any advice would be most welcome.
Thank you
Lisa
Written by
Rocky0181
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We are sorry that you are worried and feel left out of the decision and lacking information.
You asked about stage for your husband's CLL, if you are expecting a number like Stage 4, that concept is usually significant and useful to describe solid tumors, but not helpful for blood cancers, so we rarely pay attention to it.
For CLL there is a different type of staging called Binet- Stages A, B, C, lls.org/leukemia/chronic-ly... even that is not often used to describe the need for treatment.
What you may find useful is this pinned post that has several USA doctors discussing how they decide when to treat patients. (I understand you are in the UK and NHS, but the guidelines are similar).
For simplicity you can ignore the WBC or total White Cell Count, and focus on the Monocyte count (3.65), lymphocyte count (82.14) and basophil count (0.91).
The lymphocyte count can keep increasing without requiring treatment- the pinned post above describes the reasons to treat.
the Neutrophil (ANC or Neut#) count can go below normal, but when it reaches 1.0 then the doctors will be concerned and watch it closely. If it gets around 0.5 then the doctors will worry about infections and sepsis, so there are extra steps to avoid infections at that point, and treatment might be appropriate.
The 91.27 x10*9/L is a method of representing extremely large or small number explained here: en.wikipedia.org/wiki/Scien...
Most of the time the medical team will ignore the "x10*9/L" and only track the significant digits like you did in "Monocyte count (3.65), lymphocyte count (82.14) and basophil count (0.91).
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Let us know if you have more questions, especially if you are able to accompany your husband to his appointments with the haemotologist.
Thank you so much, the information is very helpful. I will make sure I go to my husbands next appointment, now i will be able to ask relevant questions.
Lisa, it takes a long time to understand lab work and how it helps determine if treatment is indicated. There are defined criteria for when we treat, but even so it’s often a judgment call for the doctor.
His wbc count is high, but that in and of itself doesn’t predict treatment. It’s rather how fast his wbc, or lymphocytes to be more accurate, increase. If they double in 6 months, that’s an indication to treat. If you can find his labs from 6 months ago, look and see what his wbc is. If it’s 90 today and was 45 or less 6 months ago, that’s an indication his cancerous cells are rapidly growing and soon to cause problems.
Two other items we keep track of are hemoglobin and platelets. They are blood cells too and can fall to dangerously low levels when crowded out by cancerous lymphocytes. Lymphocytes are a type of white blood cell. With Cll, it’s lymphocytes that are cancerous.
When hemoglobin falls below 10, that can be an indication for treatment. Hemoglobin provides oxygen to our organs and your husband will start to feel very bad if he lets his hemoglobin fall much below 10.
Platelet levels below 100 are also dangerous. Platelets help control bleeding and bleeding risks increase as platelets fall.
We usually look at these numbers over a series of labs to see how fast our Cll is progressing. If platelets are hovering around 100 for several years, thats relatively stable. If they are dropping fast with each blood test, then that’s more serious.
You are asking the right questions. If you can go to the doctor with your husband on his next visit, you might ask his doctor to clearly explain why he needs treatment now and the consequences of delaying it.
Good luck. I hope I haven’t confused you too much. In very simple terms, Cll is a cancer of lymphocytes, one of several type white blood cells. When these lymphocytes grow rapidly, they can damage other important blood cells like hemoglobin and platelets. Trends are more important than static numbers, although hemoglobin below 10 and platelets below 100 in and of themselves can warrant treatment.
Hi, thank you so much for your reply. You are 100% correct, the reason for starting treatment is the change of blood results from 6 months ago until these ones. I will go to his next appointment. Simon doesn't want to talk about it, he is obviously frightened so I want to help him by understanding what is happening to him
My husband is the same way, he doesn't like to ask questions or talk to his Drs about his concerns. That's where I come in as his advocate. I always bring a note pad with me and provide my husband's CLL team/Dr with questions (via email) before his appointment so that we can discuss them during his visits. Afterwards, when we're at home I pull out my note pad and ask if he had any concerns on what we all talked about. Gealthunlocked is a wonderful community of folks who have taught me a lot and what informatiin to ask for and most of all provided me relief from worry.. I'm glad that you see your hobby stubbornness as fear and you as his advocate are right there by his side
Thank you for your reply. It's interesting you say to get a second opinion, my husband is happy with his consultant. However I agree another consultant cannot harm or will change his results. I will discuss it with him and bring it up when the time is right!!
If it helps ease anxiety to know what to expect with treatment, you can have him read others' description of experiences on these mediations. I'm one of many here that have experience with this combination rituximab infusion PLUS venclexta (venetoclax) for several years. After treatment I'm now on the next stage of being off medication and monitoring to see if I can stay off it. Starting on these medications was rough, but once I got past the start ups, I was able to tolerate them. I'm alive due to these drugs. Everyone is different, there's no guarantees on outcomes, however getting informed on these drugs and any other options will help you make your decisions. I wish you and your husband all the best.
Thank you for your reply. We always expected for my husband to start treatment at some stage, it just feels like it is the beginning of CLL taking hold. When you do not take medication you think you are OK. It is not knowing the outcome which is scary. The one thing that sticks in my mind is something I read. It said once you start medication you are on a 5 - 10 year survival ticking time bomb. I am hoping medication will halt the progress. It is very early days for my husband, I am more worried than he is!!
I hope there's no time bomb. Google so far was wrong about me having overall survival median of 3 years and poor prognosis. I'm alive, off meds and it's 5 years later.
Read your story and have nothing but respect for all you have dealt with. May I know how old are you? I hope your remission with venetoclax lasts for a very long time.
With respect to your "once you start medication you are on a 5 - 10 year survival ticking time bomb", that was more the case in the past, when treatments damaged DNA, creating harder to treat CLL sub-clones. CLL treatments have in recent years gone through a revolution with the introduction of targeted therapies, specifically BTK inhibitors (beginning with an ibrutinib clinical trial just over 10 years ago), then BCL-2 inhibitors beginning with venetoclax. These drug approvals occurred in the last few years in the USA, followed by other countries - many are still catching up. Anything picked up about CLL in search engines dated older than about 5 years is likely to be out of date. It's still considered best to wait until treatment is needed to maximise survival time, but that's on the cusp of changing.
Survival times are increasing, but with CLL being a chronic illness, it takes 10+ years before you see improvements from new treatments reflected in statistics. The best indicator of survival time is the US SEER reporting, which is currently showing 5 year survival time as 87.9%. seer.cancer.gov/statfacts/h... Nearly all that gain has been from improved care management of infections, but in the next 5 years there should be an uptick in the survival time. Infection prevention is still very important. That's why it is so very important to get up to date with non-live vaccinations at diagnosis. If Simon hasn't had any of those covered in this document: healthunlocked.com/cllsuppo... Concentrate on the most likely and deadly infections first (COVID-19, pneumonia); you need 2 weeks between a vaccination and starting treatment, because healthy B lymphocytes responding to the vaccination have to mature into plasma and B memory cells, or they can be destroyed by the treatment drugs; we still don't have the science to separately attack just the cancerous B cells.
With respect to a second opinion, that's a good idea prior to treatment. That's not only because another specialist might suggest further waiting, they also may suggest a better treatment for Simon. Treatments have been changing so much, specialists can struggle to keep up to date if they don't see many CLL patients. Basically, if the reason given doesn't match with the iwCLL diagnosis, management and treatment guideline document referenced in the when to start treatment post referenced by Len, Simon's consultant needs to explain why they consider Simon should start treatment.
Neil
5 year survival time on an upward trend over past 50 years from approx 70 to 90%
Thank you Neil, that is reassuring to hear about survival figures. We are fortunate to live near Oxford so the hospitals are excellent, but I agree, depending on who you see the treatment plan can vary considerably. The concern has been the increase in his blood results from the last 6 months. He is up to date with all his ohter vaccinations, ie Covid (now had his 5th) and flu. He is susceptible to pneumonia. To add fuel to the fire he also has early stages of Parkinsons.
I definitely don't mean to rehash the same topic, but this is what concerns me the most too. It seems like while there are multiple treatment options there seem to be only two parts. Time limited venetoclax and the BTKis. Once you have exhausted these options then you are left with SCT, chemo? So, isn't it at least partially true that once you start treatment you do start down that path of a limited number of options for survival? At least from reading online it looks like the max remission most people achieve with either option is about 5 years.
I guess we have a lot riding on the success of pitrobrutinib and hopefully newer treatments are already being researched.
You are right that in the 'post chemo period', CLL treatments have settled on a limited number of treatment drug classes. They are wider than you've nominated, being BTKi (covalent and non-covalent), BCL-2 and anti-CD20 monoclonal antibody (rituximab and obinutuzumab). The good news is that the BCL-2 (venetoclax) and anti-CD20 treatments can be repeated*. I've seen cases where patients back in the immunochemotherapy age (Fludarabine, Cyclophosphamide and Rituximab, (FCR) or Bendamustine and Rituximab (BR), chlorambucil or campath), had over 10 prior treatments - and that's with these treatments selecting for the harder to treat 17p del and mutated TP53 CLL with chemo treatments.
CLL researchers are well aware of the issue you've raised and are actively researching further options. While it's not generally an issue with the median age of a CLL diagnosis being around 70, followed by around a median time to first treatment of about 5 years, it can be an issue for those diagnosed considerably younger than the median diagnosis age, and/or those who have aggressive disease.
Theoretically, there's no reason that we can't go back to chemo treatments, but I take it as a sign that we are nowadays more risk adverse in that isn't happening, though there has been a successful trial of FCRi (FCR + ibrutinib). Likewise, the FDA has been gradually withdrawing approval for another major class of treatment drugs - PI3K (idelalisib, duvelisib, etc). That's why the research into finding safer ways to use this class: healthunlocked.com/cllsuppo...
This is the list of non-BTKi drugs in clinical trials. It's a reply to my post on all the BTKi drugs approved or in clinical trials:-
* It may also be possible to switch back to a BTKi treatment after BTKi followed by venetoclax. Likewise (no case studies yet), it might be possible to alternate between the covalent and non-covalent BTKi drugs. You just need to have the latest sub-clone, suppress the previously resistant sub-clone.
I wasn't much older than you when I was diagnosed at stage 4 (53), but I managed 11 years in watch and wait; long enough for me to gain access to one of the few international clinical trials that reached Australia, where I achieved uMRD on acalabrutinib + venetoclax + obinutuzumab. You live in the USA, where you have access to most of the above listed clinical trials, with more coming, plus, like me, you have good markers (CD38 negative, normal karyotype and mutated IGHV, though I had to wait 10 years to find out I was the latter).
Rocky0181 I am so pleased you found this site and reached out with your questions to help you better understand things relating to Simon’s CLL and recent changes being navigated by you both.
Enormously smart people invested in informing those new to CLL post here and share reassuringly up to date information.
It’s a great place to start enquiries, be educated, learn and cultivate hope.
Thanks to all who contribute to a special place ❤️
I am in the uk too. I have found that the hospital I go to are really good and I have been very happy with the advice and treatment I have been given. The system in other countries is different to ours as they choose the consultant and centre they go to.I once asked the haematologist about cll consultants and he said that if things werent straight forward and they needed advice they would ask for help.
The nearest cll specialists would be Oxford!
When my blood results showed I needed treatment I had scans. They showed my spleen and lymph nodes were enlarged and they would start treatment straight away. I was diagnosed aged 43 with low numbers and I am 65 now. It was 9 years until treatment was needed. I had chemo, 5 years remission, 3 years till more treatment required and I now take a reduced dose of Ibrutinib.
Treatments are really different these days. We imagine being really ill and losing our hair. There are side effects but they settle down and I wouldnt expect the worse.
I didnt want to make a fuss and create a big issue every time I went for an appointment. It was self protection. Its best to say you will go with him and it will give you chance to understand the treatment. Dont get worked up. After all these years I realise that we are actually lucky to have these wonderful treatments. They work quickly. He will be given an antibiotic to prevent pneumonia and as others have said, make sure his jabs are up to date. Check which are needed.
We all remember how we felt and if I need a different drug I will be nervous too but I know things will be ok. You can ask questions on this site as you go along.
Thank you Anna, that is good to hear you are receiving successful treatment. Simon has the same symptoms as you so it is interesting to hear about your medical journey. Like you he has had CLL around 8 years before now requring treatment. He is under the Churchill Hospital in Oxford which have been amazing.
Pretty routine stuff. Some blood components are now not in the normal range and his WBC is high, and a key indicator, lymphnodes, are swollen. My docs never mentioned "staging" to me. When I began treatment, my WBC was 25M-30M. High, but many folks have much higher. It was my lymphnodes that started me on my way to treatment (one was the size of an orange). I had a treatment choice between a pill a day for eternity or a 12 months protocol of Obinutuzumab plus Venclexta. I chose the latter, and I do not regret doing so. One and done, so to speak. I have been uRMD for almost a year now.
Hi, thank you for your reply. Simon has also had an option of a hard core treatment for a year or a less invasive 7 year treatment plan. I think they are the same drugs as you have mentioned, he has a booklet explaining how the pills increase in weekly cycles, sounds very regimented with significant side effects. He is about to have some scans then we will both go back to the consultant to discuss what lies ahead. Mind you ask how old you are and what side effects if any you had on your year treatment?
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