I'm in Australia, and I've read a lot of CLL posts from people in this Community and it's been comforting.
I am 60 years old and I was diagnosed with CLL last year 2023. Interestingly my bloods were all fine up until April 2021 - then I had a significant work related stress incident in May 2021 which lasted for over 2.5 years. I was under constant work stress and my general GP picked up elevated Lymphocytes in January 2022 after a blood test and on watch for 2022. In March 2023 was referred to my Haematologist. Stress impacts people differently and so I'm curious, has anyone else been diagnosed with CLL from a work related stress matter? I've read where increased stress releases cortisol and these attack your bloods.. : (
My WCC and Lymphocytes have been increasing ever since. Currently WCC 24.0 and my Lymphocytes are 19.6. My Neutrophils are 3.2.
Everything else on my bloods appear normal. I don't have sweats, I don't seem to be too tired, I'm sleeping well and I don't seem to have any other CLL symptoms, and I don't have any enlarged organs - like spleen etc as I had a CT scan recently confirming all organs are currently normal.
But I do have swollen lymph nodes occurring in my neck on both sides that are concerning me for some time. I've mentioned them several times to my Haematologist who I've been seeing every 3 months for updates on bloods. He asks me if I've had any symptoms and I have mentioned a sore neck every time - and was told "you do realise you can have other body problems not related to CLL" - I was quite annoyed by his response as I am aware of what my body is reacting too and it's not normal for me to have constant neck aches and pain - as I've always been relatively healthy. Should I find an alternative Haematologist?
I feel like my life is in a holding pattern - waiting and watching - and my life is on pause until something happens - and I have to have treatment.
CLL community - tell me I'll be ok and what my numbers mean? How far can these actually go up to and will I still feel ok? Is it just lower immunity that becomes our main concern or do I need to watch for other symptons?
I've got so much knowledge and information from this forum so I appreciate your feedback.
regards
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Blue-Eyed-Baby
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Hello Blue-Eyed-Baby, I am not a doctor but I am a somewhat experienced cll patient and can take a shot an answering your questions.
If you are asking whether work stress caused your cll, I would doubt that. I do not know that any cause for cll has been proven, although there is some evidence that in some people it can be hereditary.
A different question might be whether stress can exacerbate or make cll worse? To that I would say probably so. But I think that is generally true with most all cancers and other illnesses that stress makes things worse. Conversely, being at peace and having a calm mind helps. That’s why I think we are encouraged to eat well, sleep well, meditate (or use other mid relaxing therapies) and exercise.
Having cll in and of itself is a stressor. My thoughts just from experience reading people’s stories on here are that those who can get to an acceptance phase of their cll are less stressed and more able to get on with life.
I know the feeling you describe of having your life on pause while you wait to treat, but it’s not a helpful feeling. Cll is typically a slow growing cancer that responds extremely well to the new therapies we have that can control our cll almost indefinitely for many of us. I have seen it compared to someone controlling their diabetes with meds. In a way, and for some, diabetes might be a more limiting illness than cll. I am 8 years into my cll and it is not limiting me much at all, if any.
What do your numbers mean? Who can say, you’ve given us just a very small snapshot. The few numbers you have provided would suggest early stage cll. How our labs trend over time is more important than the results of one lab test. Your neutrophils are fine. Your lymphocytes of 19k are low for cll, mine were near 300k when I started treatment. Some people need treatment at much lower lymphocyte readings.
Should you get a new doctor? Thats hard to say. There can be a tendency among Cll patients to relate most any pain they have to cll and perhaps your doctor was relating to that. If, on the other hand, your doctor was being dismissive of your concerns about lymph node swelling, that seems to be poor doctoring on his part. I can hardly imagine he would even suggest your swollen nodes are not Cll related. If your neck nodes are painful, I think thats probably Cll related. If you are just having generalized neck pain, I might suspect something else.
We should all have a doctor we are comfortable with, you have to make that call. Getting a second opinion when in doubt is almost never a bad idea.
What symptoms should you look for? People with advancing cll can get what are known as B-symptoms (lymphocytes are also called b-cells). These symptoms can be fatigue, night sweats and just a general feeling of unwellness. Fatigue is usually associated with falling hemoglobin. Fatigue can have other causes than anemia, so it’s not always clear if someone’s fatigue is related to cll or other causes. I would think just being stressed can contribute to fatigue.
These are just my lay person observations. I think as you adjust to your diagnosis, your stress will reduce and in turn, you will lose the “my life is on hold” thoughts. You are only 60 yrs old and might well live with your cll into your 80s or beyond. Putting any of those years on hold to me would be a waste, but I do know the feeling you have and that acceptance is a not a switch we can turn on, it just takes time.
CLL is caused by genetic damage to one lymphocyte, so that it loses some of the self destruct (apoptosis) functionality encoded in its DNA. So that one cell keeps dividing without control and you get a clonal population detectable by the flow cytometry diagnostic test. Stress can't cause DNA damage, but possibly it might impact our immune system, so that the T cell monitoring for cells becoming cancerous doesn't work as well as it should. Thankfully, CLL is one of the very slow growing blood cancers and it's increasing it possible to live out a normal life expectancy. It's historically been the case that around a third of us never need treatment.
What's changed in the last 10 or so years is that newer targeted therapies have been developed that are far more effective and far better tolerated than older chemoimmunotherapy treatments. Those new treatments are available in Australia, should you get to the point of needing them. One very strong targeted therapy treatment, venetoclax, came out of research at the Walter and Eliza Hall Institute of Medical Research (WEHI) in Melbourne. There is world class CLL expertise in Melbourne, should you ever need it, but the close connections in the international CLL research community are also reflected in Australia, so your haematologist specialist should be able to get access to that expertise, provided they take a professional interest in keeping up to date with the fast changing CLL treatment options. You'll get a feel for how well your specialist is doing that, from reading about progress in optimal CLL treatments and management.
Some specialists don't think swollen nodes can be painful, but there are members in this community who know otherwise! However, your specialist is right when he said "you do realise you can have other body problems not related to CLL". That's unfortunately one of the challenges of living with CLL. We do tend to first assign blame to any new symptoms to our CLL, but we do need to appreciate that other people without CLL can also develop the same symptoms and we are after all, growing older and hence more likely to have other health challenges. CLL being such a heterogeneous illness, it's hard to know whether it is responsible for new health challenges or there's another, more readily treatable cause. Sometimes, it's a matter of working with your GP to eliminate other possibilities, so that it is then ascertained that it's CLL which is most likely to blame, such as what is causing fatigue.
With respect to your questions about your numbers, how they determine whether you need treatment is covered in this pinned post healthunlocked.com/cllsuppo... Your lymphocyte count is not particularly high for someone with CLL. We have members in watch and wait with counts over 500. CLL cells are in their dormant phase in our blood. They are busy in our nodes, spleen and bone marrow, where their signalling disrupts our immune system. It's when our CLL becomes more active that signals treatment might have arrived. That's where lymphocyte doubling time (count doubled in under 6 months when over 30), that specialists start to look more closely.
With Australia's universal health system approach, prognostic marker testing is generally left until just before treatment, because prognostic markers can change over time. You do however have access to your flow cytometry diagnostic test results. If they show you are CD38 negative, then you are likely to have a long time in watch and wait. You might also be able to get FISH testing done. I was diagnosed at age 53 with stage 4 CLL/SLL,15 years ago, when my SLL began aggressively impacting my immune system. My specialist arranged FISH testing, a CT scan and a bone marrow biopsy and determined that I had a an enlarged spleen but a 'normal' karyotype on FISH. She also checked my B2M result and these all indicated that I'd likely have a long time in watch and wait. It was 11 years until I needed treatment.
Yes, CLL can make you feel like you are in a holding pattern. The uncertainty of what might happen next is one of the significant stresses of living with this very heterogeneous disease. I would encourage you to explore with your specialist what guidance your prognostic markers can give you and then do what you can to get on with your life as best you can. With appropriate monitoring and intervention by your specialist, you have an increasingly likely probability of living out a normal life expectancy, providing you do your part in keeping your body as healthy and infection free as possible. You'll find plenty of information on how to do that in posts in our pinned post section healthunlocked.com/cllsuppo...
I've read quite a lot of your posts and appreciate your always very informative inputs from where I learn a lot. I just checked my Flow Cytometry report of July 2022 that it also showed CD38 negative. Would you please be so kind to collaborate what that exactly means to CLL W&W patient like me. And also what's B2M result related to? Is it an item in FISH test? Thx and regards.
CD38 cell membrane expression from your FISH test results, is an independent predictor of time to treatment/likely length of remission to IGHV mutation status, though if you are CD38 negative, you also have around a 60% likelihood of being IGHV mutated. When the very important finding about IGHV mutation status with CLL was discovered healthunlocked.com/cllsuppo... testing was challenging to do correctly and hence also very expensive. That resulted in considerable research to see if other, easier to do proxy tests could be found. CD38 and ZAP-70 showed the most promise, though ZAP-70 was subsequently found to have a poorer correlation. If you are negative for both CD38 and ZAP-70, you are likely to have more stable CLL. My Australian co-admin CLLerinOz posted about ZAP70 5 months ago; Towards a better understanding of the role of ZAP-70 in unmutated IGHV CLL and possibly personalised treatment optionshealthunlocked.com/cllsuppo...
The Beta-2_Microglobulin (B2M) blood test medlineplus.gov/lab-tests/b... was developed by M D Anderson (as was ZAP-70) as a predictor of tumor activity. A higher B2M result correlates with a more active CLL tumor and hence a shorter time to treatment. Prior to the development of the modern targeted therapy treatments, a result of under 2.1mg/litre correlated with a median survival of greater than 12 years. A result greater than 3, is associated with a higher risk of developing a secondary cancer, but B2M changes over time as do most prognostic markers, with the notable exception of IGHV mutation status. Historically, if your IGHV mutation status changed, it was nearly always due to a laboratory testing error. Much work has been done internationally to standardise the IGHV testing process, so that more reliable results are now being produced by different pathology labs.
Hi, you sound like me a year ago - and this group helped such such a lot
Everyone has a different experience of CLL but the main thing is that you have to find a specialist who you trust who explains what’s going on and how they can help you
There are many treatment options and some are just tablets (like taking statins or blood pressure tablets) so many people carry on living their lives as normal with this condition. Some have a more serious form of it but there are treatments for most of it - I know of several people who had stem cell transplants a while ago and recovered well
It’s the unknown that makes us anxious, so getting the right consultant is key
Watch and wait is a really hard place to be. I remember feeling just as you describe, in a holding pattern waiting for something to happen.
I know no one can say “you’ll be ok,” but you are on this forum, gathering information, asking great questions, and advocating for yourself. I think that is a big part of being with this with strength and perseverance.
The consultant (now a UK CLL authority) who diagnosed me about a decade ago told me that CLL is a condition people mostly die with - not of.
Around a third of people with CLL never need treatment - and treatments are improving all the time.
Get yourself a CLL specialist - who really knows the condition and its vagaries. Haematologists cover a wide of blood conditions. Many doctors, and certainly those in general practice, see very few CLL patients in their career.
Get your vaccinations fully up to date and keep them that way. Follow the healthy living advice readily available and avoid any claims which seem sensationalist and too good to be true - they usually are.
Be sparing in those you tell especially to begin with - you can't untell them. You can add others to your select group as and when you are surer of what will be right for you - in the longer term.
Be good to yourself - and allow yourself plenty of time for this new aspect of your education - it will help your confidence and understanding and dealings with medical professionals.
You are in the right place to educate yourself Blue-Eyed-Baby, welcome. Most of us can relate to your situation and feelings.
I first presented with the SLL version of this disease (lymph node enlargement versus detection by blood work). I was under a lot of stress at work and docs thought the lump on my neck was a muscle spasm and sent me to physical therapy. That didn't resolve the cervical and lumbar spine pain issues so they sent me for MRI's and saw the enlarged lymph nodes throughout my body. Then a hematology/oncology consult and a PET/CT scan, leading to a lymph node biopsy which diagnosed the SLL. Of course, all of that was stressful and made me tense up even more - which made my cervical/spine pain worse.
Since cancer is scary - I assumed the lymph nodes were pressing on my spine - or worse the cancer was in my spine itself. It was none of that. The age we (usually) get CLL/SLL is a time of many age related, worn out body, old injury, conditions.
I have degeneration in my spine, and a condition called DISH which also contributes to my cervical/lumbar spine pain. All separate from CLL/SLL but it takes time to investigate and get these diagnoses.
I will say much of my pain was dismissed as "anxiety" due to my cancer diagnosis, and I had to persist in getting to the bottom of the pain, so it could be managed by meds and lifestyle changes.
It is important to educate yourself about CLL/SLL so you can be your own best advocate with your medical specialists. CLLSociety.org is also a great place to get accurate, current information, with a tab of articles specifically for the newly diagnosed.
As others have said, while you are still reeling from having a diagnosis, from the perspective of someone who had the diagnosis some time ago (2017), you are in the early stages of CLL. You may never need treatment. You know your body better than anyone else.
I have found it helpful to 1) find a CLL specialist 2) bring someone with you to your appointments. It’s not unusual to hear something during these visits that is uncomfortable and then you miss the rest of the discussion 3) write down questions or concerns so you don’t forget them in the moment.
Try as much as possible to let your CLL specialist do the worrying for you. If they are not concerned, that’s a good sign.
It’s OK to ask your doctors if he or she says something confusing to ask for further information. Such as, ask why he or she thinks your neck pain is unrelated to the swollen nodes. Which doctor should I see? Should I try physical therapy?
We do sometimes have pain caused by other issues. The good news if it’s not related to CLL is that it may be possible to alleviate that pain by physical therapy or another approach.
Your discomfort is important. It should not be dismissed. I had back pain that turned out to be due to weak core muscles. Physical therapy helped a lot. I had chest pain that was not due to my heart. Our bodies are pretty complicated!
This forum is very helpful for understanding when we might need treatment, the options available, and other people’s experience during and after treatment.
No one likes the “watch and wait” period. I called it the “watch and worry” period!
I was diagnosed with CLL over 3 years ago and under the care of my Hematologist and Naturopathic doctor, per the National Comprehensive Cancer Network(NCCN) I am currently in Partial Remission.
St. Judes and Stanford Cancer Institute are members of the NCCN along with about 30 other institutions.
I highly recommend that you read THE METABOLIC APPROACH TO CANCER by Nasha Winters, ND, FABNO and seriously consider including a Naturopathic Doctor(ND) with a FABNO (Fellow of the American Board of Naturopathic Oncology) certification on your CLL/medical team, especially if you are in a Watch and Wait mode.
Immediately after my diagnosis my Hematologist put me in a Watch and Wait mode with a goal (eventually) of treating my CLL with ibrutinib ($2500/month)
My Naturopathic doctors approach to Watch and Wait was radically different.
For my Watch and Wait he created a daily regimen that featured Green Tea Extract (EGCG),Vitamin E, Reishi and Vitamin D3 with a goal of Vit D3 level between 60 - 80 ng/ml.
The EGCG based regimen cost less than $500 per month.
INITIALLY, my Hematologist did not take my Naturopathic doctor's EGCG based regimen seriously.
But, it was noted that night sweats and weight loss stopped less than a month after starting the regimen.
My test results were constantly improving.
Hematologist visits eventually were every 6 months instead of 3 months.
After 18 months my Hematologist ASKED FOR MY NATUROPATHIC DOCTORS telephone number and admitted that his EGCG based regimen was WORKING AND I SHOULD STAY ON IT BECAUSE IT WAS WORKING.
For Watch and Wait your team should include a Naturopathic doctor with the FABNO certification.
Having a Hematologist and FABNO certified ND on my team led to the end of night sweats and weight loss while paying less than $500 per month for treatment versus $2500 per month for ibrutinib.
Work with your CLL team to create a personalized and INNOVATIVE Watch and Wait program that has a positive impact on your CLL and your over all health.
I have had no adverse side effects from my regimen.
My Blood pressure (average of 3 readings per day) has decreased from 135/84 to 118/77
Many times you have been asked to provide your CLL markers and evidence of your improvement in your CLL related blood test results, but you are yet to do so. From the little you have provided, according to the NCCN guidelines, I don't see how you can be in partial remission.
From NCCN's sheet, partial remission is defined as enlarged organs and nodes shrink to less than half their previous size and blood counts have improved but are not normal.
In those guidelines, a partial remission of CLL is worse than a complete remission, but better than a stable disease (with progressive disease being the "worst" of the 4 defined body response states after treatment).
Adding Low Dose Naltrexone to my EGCG regimen earlier this year was a key factor in getting to Partial Remission per NCCN guidelines while being in Watch and Wait mode.
Seems like CLL patients can have good outcomes during Watch and Wait when their CLL/Medical team includes a Hematologist, GP, ND with FABNO certification and a CLL specialist.
My current team does not include a CLL Specialist(CLLS), but I do not rule out consulting with a CLLS in the future.
Hi there! You've already had lots of sound advice, and I couldn't really add anymore. I just wanted to say don't be afraid! Easy to say, I guess, but as others have said, you might never need treatment. And if you do, the treatment options are good. I'm an Aussie too, and will be 60 in a few days. I was diagnosed at 54. I'm approaching treatment now, but even then, my hematologist says the lymphocyte count might still come down. Even if it doesn't, he says I'll just take a pill or two. A pill! How good is that? Be positive, and don't let fear of the unknown spoil the joy of living today! All the best.
Watch and Wait can be very stressful because you don't know when you will need meds. When I dx with cll I was always concern if the next doc. visit will be the one , you need meds. That's been 17 years ago. Now I am not as anxious before a visit to the doc. Cll can be very slow growing or very fast growing. Listen to your doctors . And also I believe My God is in control of my cll.
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