Hello all, this is my first post. I received my CLL diagnosis on Friday. I have no symptoms currently and it was only discovered during routine blood tests. I honestly don't know what to do with this info. I didn't think to ask for a print out of my stats at the time. My next tests will be in September. Should I be following any kind of supportive diet? Anything to avoid? Vitamins to help?
I'm generally very healthy; pescatarian for 40 years, never smoked, very little alcohol, exercise in the form of walking and yoga. I'm aged 59.
Any advice and tips would be wonderful, thank you.
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Thecolourofspring
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You are fortunate to have found this site so soon after diagnosis, were you directed here by your hospital or a google search. If the former then even better. Also join the CLL Society
After recovering from the shock get used to the good news that you may never need treatment and if you do there are amazing new treatments.
Read some of the pinned posts on the right especially those by Paula and they give useful information about keeping your vaccines updated and in the correct order with regards to pneumonia, and don’t let a practice nurse tell you you’re wrong.
Finally if you have a good GP talk to them about any worries. You know your body and you will spot any unexpected infections and don’t be palmed off with ‘it will go away’ it took me a while to explain I have an impaired immune system.
Easy to say but relax I have, and I was diagnosed in 2007.
Hi Colette, thank you for your reply. I googled for CLL support and this site came up. I have also signed up to the CLL society. I do get the annual flu jab and I'll ask about the others. I'm sure my friends and family will be sensible and keep their distance if they have a bug or virus! I'll explore the websites.
Good you are being proactive but without sounding too pessimistic we often don’t look or appear unwell so just be careful people don’t forget, even though I am advocating you forget 🤞
Its not the worst club to join🤷🏽♀️ I heard that it was the best cancer, which is an oxymoronic thing but its been true for me. I was diagnosed in 2009. 13yrs 8mos before needing treatment. I think your healthy lifestyle will take you far. Clean Nutrition & Regular Exercise has been good for me. Yes stick here & read some post that interest you to hear first hand accounts. Its different for us all & you will make your way through this journey #GODSPEED🙏🏾
Thank you so much. I'm going to start ordering an organic vegetable box as I read that there is a theory that pesticides could be a cause. It might be a bit like shutting the door after the horse has bolted but must be a healthier option.All the best.
I do not care what the Nutritional debate is anywhere, if you listen to your body, it will tell you what it likes & doesn’t. I got my Certificate in Nutrition but only use it on myself so far lol, well its time for my recertification this year. Growing your own is best but what is practical for your life? I have friends that sprout. I am middle of the row & don’t want to obsess especially if I have no acceptable solutions. I buy Organic but will get local grown too. My body prefers RAW & Juicing, it works for me. Even cooked plantbased can irritate my stomach. I had Lymph nodes in my stomach since my diagnosis because I heard the tech asking ‘why would lymph nodes be there?’. It was a student & I was happy to know. My stomach has been getting abused since the beginning & now I want to be very gentle cause I love to eat. I am just selective & want the best quality not quantity. I must admit for me Acalabrutinib gave me a headache for 2 straight weeks. Now 5 weeks in, they’ve decreased & spreaded out may 1-2 per week. I have started with coffee but we aren’t good either cause caffeine gives me palpitations 🤦🏽♀️
But anyway good news is Acalabrutinib decreases my appetite & has my hair & nails growing. Who knew. I am slowly heading back to working out just on Vibration Plate for now. I see a slim healthy Summer. Be well everyone!
I was diagnosed in 2010 and only started treatment last December. When I was told that I was "too healthy to treat" I was a bit frustrated. I am a proactive person, so I created my own wellness/treatment plan. I started doing some energy work (Tong Ren) tongrenstation.com/ Found a TCM doctor (Traditional Chinese Medicine), changed my diet to more of a healthier one, committed to walk daily, let go of toxic people in my life, and asked friends and family for support. I do subscribe to CLLSociety.org to get latest updates on my cancer. I now live in one day at a time and work on not sweating the small stuff. I have continued to work part-time as a behavioral health practitioner, which is a good distraction from my own stuff! I am turning 70 and going strong! Hope this helps!!!
Feb 1 , 2023, I was were you are at now . 62 YO female, former nurse. Walked around for weeks thinking " Holy crap ! Do I really have this. I started cleaning out my kitchen drawers and throwing things away. Seriously, who needs 3 sets of measuring spoons, And I don't like to cook. After once or twice at Mr Google, I came across HealthUnlocked. The first post I read was from Cajunjeff - "So you just got diagnosed with Cll -for dummies". Thank you Jeff, that was a great post. READ IT. There are so many folks who are here to help us. Folks like SofiaDeo,, Cajunjeff, Newdawn, JigFettler, CoachVera55 , Big Dee and SO SO many others
I wanted to know EXACTLY what was heading down the pike at me, and when to expect it. Yes! I was being that naive. It just wasn't sinking in when Neil explained that CLL is a heterogeneous disease . What I read and now I am applying is what the first 2 post stated and what everyone ends up learning and applying. Focus on Clean Food , Regular Exercise , Fitness and stay well hydrated . I was told Its not the cancer that going to get me, What I need to be is DILIGENT about is staying INFECTION FREE.
I am not that great with the computers, (in my days the care plans where done on paper charts) This site has lots of post. As was stated " CLL is a chronic illness with increasingly long survival times . I would highly suggest reading all the post that gives the advice that clarifies what is best and what we need to do to say healthy with CLL.
What really helped me was hearing from folks that are in the W&W (Watch and Wait ) stage. When you hear from folks like CoachVera55 , tell you that they are living their lives for many many years with CLL and without treatment , It gave me hope. It made me realize that CLL is not the death sentence the Mr Google tells you.
MY WBC's were going up for a couple of years , other than hot flashes I had no other symptoms . Now I have so immunoglobulins going down.
Last Sunday , Lab work showed up on email. This time the Doctor DID NOT call with the results. This time my RBC's, Hemoglobin and Hematocrit was elevated. I sat there staring at the results , feeling my heart rate , blood pressure and stress level rises. These levels were not extreme, but I sat there stressing myself out , not remembering and not applying what I read and was explained. I was so stressed I reached out to a HealthUnlocked person. I am forever grateful for their reply . They clarified and explained what I need to focus on and how our lab work with CLL changes . They explained how many CLL folks live with very high numbers and still are on W&W. I know I will still have some stressed out times , but I know now what I can do to help myself. Thank you so very much N.
I know you are scared and overwhelmed . I know I was , I think we all are at first . Your in the right place with HunLocked. As AussieNeil pointed out "Smart patients get smart care" (my wording may be a bit different, (hot flashes are frying my brain cells) lol . As may folks suggest, starting looking for specialist. My first oncologist was not very informative. I get SO much good info from this site and these folks. Thank You HealthUnlocked. Thank you to all.
Seeker090260, your signoff with 2Tim 1:7 is RIGHT ON! Thank you for your response to Thecolourofspring, it was encouraging to me. This site is a wealthy site of wisdom and kindness. Sandra(Phil 4:13) 😀
Thank you for sharing 2 Tim 1:7, that’s my life mantra! After 2 cancer diagnoses and two cancer scares, fear has tried to steal my joy. My battle since diagnosis a couple years ago has been a mental and spiritual battle, not necessarily a physical one.
You've had plenty of good advice to which I'd add that you can find our pinned posts to the right of this post if you are reading on a computer. If they don't appear there, usually because you are using a phone or tablet, look below this post. This link will also take you there: healthunlocked.com/cllsuppo...
With respect to your questions, you would be wise to ask for your blood test results and keep copies of all medical reports for your files. They can be useful when you need other medical services and copies aren't readily available to the provider. CLL Society provides a spreadsheet template that is easy to use and automatically generates plots, so you can follow trends. cllsociety.org/cll-sll-pati... CLL being a chronic illness, we need to remember not to get worried about the occasional high or low or even out of range results. Before I needed treatment after 11 years of watch and wait, I used to jokingly refer to my blood test results as my star chart, as it had so many stars throughout it for high or low results. Following successful treatment, I only have a few results that might be out of range and they aren't serious. In general, my counts are better than they were 17 years ago. Don't believe the life expectancy results you find in Google searches. In the UK, targeted therapies replacing the older 'chemo' treatments, were only approved in the last year or so. When you keep in mind that it takes 10 years of survival data before those that maintain such reporting can update the 10 year survival statistics, you get the difficult involved in maintaining up to date results. Also, Google preferentially serves up what people find interesting - which in the case of illnesses like leukaemia, equates to morbid information, dating back to before treatments improved.
If your next tests are in September, then you seem to be considered to be at very low risk of progression by your consultant. I was having monthly tests after my diagnosis.
I'd say the most common reaction to a CLL diagnosis is a re-evaluation of diet. What might cause CLL is still highly debatable; nuclear radiation wasn't suspected until long term studies of the Chernobyl nuclear reactor, contaminants (dioxins) in the manufacture of Agent Orange can increase the risk of developing Non-Hodgkin's Lymphoma, of which CLL is the most common adult form. Class action cases with respect to glyphosate (active ingredient in Roundup) are proving successful, but the science really isn't conclusive for CLL. We again tend to dwell on why, but we can't change that, so it's not a productive use of our time. There's a ~10% familial risk, which extends to a higher risk of other blood cancers, so if you are now aware of blood relatives who have had CLL or something similar to CLL, then you should advise any children to be more aware of their blood test results. They are just at a slightly higher risk of developing CLL or another blood cancer than other people. It's common for people develop the precursor of CLL; MBL - Monoclonal B cell Lymphocytosis as they age. In some, it progresses to CLL and we don't know why.
Keep eating a healthy diet and maintain or improve your focus on good physical health, for which there is good evidence that it will slow your CLL progression and make treatment, if that becomes necessary, easier to undergo. It's common in CLL to be deficient in vitamin D. Normally we make that through sun exposure, but CLL comes with an increased risk of skin cancers, so a vitamin D3 supplement may be necessary. We are all different with how much we need, so this is something you need to work through with your GP. CLL reduces blood counts by infiltrating our bone marrow, so it's common to see platelets, red blood cells and white blood cells (primarily neutrophils) drop over time. Ensuring your diet has adequate amounts of iron (more difficult to achieve without red meat) and the B vitamins B12 and folate (B9) might help here. Don't take supplements unless blood tests show that you are deficient as despite lots of clinical trials over the years, there's still no conclusive evidence that they help unless you are deficient in what they provide and even then, your best source is directly from freshly prepared food.
Thank you so much Neil for your very helpful response. I take Vit D for about 60% of the year as I suffer a bit with SAD but have just stopped for the summer. I routinely take Vit 12, but I will ask my GP for advice in September. Consultant has put me on 3-monthly testing for now.
The record chart you mention is a good idea, thanks for suggesting.
I am 59, diagnosed stage4 , no symptoms in Nov 2020 from a routine blood test. Got sorted by a great team and was in remission with 250 days. Best advice I can give , is enjoy life to the full and remember the odds are that CLL won't get you. I am 60 in Jan and looking forward to seeing my youngest graduate Uni in 2043.... as she is only 3. Keep safe keep positive.
I will, thank you Steve. I've just started an Art Degree as a mature student which comes with it's own therapy! I'm very grateful not to have to spend (by which I mean waste) my time in an office!.Best wishes.
Your story is an echo of mine. I was diagnosed last August in the same circumstances. Fortunately, you have found this site and it will be a great help to you. The shock of the diagnosis may be very difficult to process, so take things slowly and allow yourself time to adjust. There will be lots to find out and lots of questions will come up. I’m still adjusting, so don’t expect too much, too soon. My diet was mostly vegetarian with some fish and like you, only a little alcohol. I was found to have low iron stores, so I’ve been trying to address that. I have food-pollen allergies so my diet is a bit restricted, therefore I do take some supplements, including Curcumin, omega3 and grape seed extract and I’m now drinking green-tea, vitamin D is also important. There is no recommended diet for CLL. Keeping up with vaccinations is paramount as some of the other replies have said and be vigilant about infections. I keep away from any crowded situations. I’m having a monthly massage and some Reiki healing which have helped me enormously, I also take a daily walk and I’m just starting to look at other sorts of exercise. Your yoga practice will help. I cried quite a lot at first, as I thought I was a healthy person and it took a few months for me to find this site so I was using Google which isn’t a good idea. All the up-to-date research you need is here on this site. Everyone here will be supportive, so you are in the right place.
I've just started on the green tea! Hopefully I'll get used to it soon (ha!).. also back on the Vit D from today. I know what you mean re healthy ...I also thought I was a healthy person- in comparison to the lifestyles of many friends and family. I never eat fast food, never been to McDonald's, dislike anything fried and greasy. Maybe it's something to do with pesticides on fruit and veg, maybe I haven't been diligent enough in washing them thoroughly...
I also worked in vineyards and orchards for a year during lockdown after I lost my long-time job. Those places were sprayed liberally with pesticides. There was often nowhere to wash our hands except using water from our own water bottles. No loos either, but that's another story! Gosh...my mind is racing now....
I guess no one really knows why they get CLL. There is no history of it in my family and I have not worked with chemicals. I did have Covid twice and it did take me a few weeks to recover. I have read that Covid might cause some cancers to take off but there is no real research to support the theory.
I’ve just been doing all I can to improve my diet and life-style.
Potential cancer causing chemicals are everywhere, not necessarily only at work. Lawn & garden, agriculture, insect sprays/repellants, cosmetics (sunscreens, makeup, hair dye, nail polish to name a few), cleaning products. There have been instances of water and animal feed contamination. Gasoline and oil spills. Chemical spills from train, truck, boating accidents. Colored candies/food products. Air pollutants. Did you take a chemistry class back before we knew some of those chemicals were hazardous to breathe, and needed a fume hood like I did? Did your school spray for insects at least yearly? Mine did. Ever sit in a car with open windows in heavy traffic, breathing vehicle exhaust? Yup, that's me.
We're exposed to a number of things, including UV in sunlight. Our DNA generally fixes any minor insults on a daily basis. At some point for some reason, our DNA fails to repair itself or gets too damaged by some event or combination of events, and cancer results. There have been some noted causations like smoking and lung cancer, and benzene exposure. I am sure there are others we don't know about yet.
Not that this means we live in fear because "what if", just, be aware of potential risks & minimize what you can. I will spend a lot of energy avoiding things in foods, but I still color my hair & occasionally use makeup. I seek out non toxic sunscreens. If I traveled to places where insect repellants were recommended to prevent an insect related disease, I would use the repellant. I wear gloves now if using a petroleum based solvent, abd mask when painting. I pull weeds by hand instead of spraying. I minimize my risk best as I can without stressing about the exposures.
Just to add - don’t panic and also work out who needs to know and who doesn’t. Once you tell someone you can’t untell them. I just wanted to avoid the (slightly phoney) “how ARE you?” brigade but some people have found more negative reactions too.
Oh, and many sites on google are old and out of date - they are (unlike this site - thank you to our moderators) not a reliable source of information.
Thanks Clare.Yes, telling family and close friends and working out how best to tell my grown up daughter - who will immediately panic. I will show her all the good sense on this site I think, and advise her not to Google.
Be somewhat cautious about who you tell and how much you tell them. You know not to believe Google but others won't and will make all sorts of assumptions about you and your ability to work or to survive. Just gloss over things with those who don't really NEED to know. It's none of their business.
When I told my daughter I explained to her what it was and that it had a scary name that I wasn’t going to tell her until I had explained. People hear the word leukaemia and hear nothing else. Can be handy when you want people to sit up and take notice (no, you can’t send my husband home from hospital with Covid, I have ...) but mostly not. ☺️
Keep going as you are. You sound as though you have a balanced and healthy lifestyle. If you feel tired then take a rest, listen to your body, try not to panic. Nothing you have done has brought on your CLL.
This period can be tough, trying to understand what this means. You have a long way to go to really understand your disease. The most likely scenario is you will be on watch and wait for some time before you need treatment. Depending on your heavy chain mutation, some people never need treatment. What I can say, and if you do need treatment there are many new groundbreaking drugs to manage CLL long term. The most important factor right now is you mental health. Try to stay positive and push your haematologist for a plan. Once you have the plan you will find it easier to move forward.
Will do re plan, thanks.It's hard to get my head around why they can't blast it out now as everything one ever reads about cancers focuses on the earlier it's identified and treated the better. It feels weird to know this thing is infiltrating my blood yet can't be treated yet.
I just need to come to terms with it I guess. I don't feel particularly ngry or sad at the moment, more perplexed.
there is evidence emerging that earlier interventions may benefit younger patients, but this is not by any means current protocol. A percentage a people with mutated disease don’t ever need treatment. So it’s really down to your specialist to manage your plan. Your can also ask for a second opinion from a CLL specialist who can take a closer look at how you will progress. This is achieved using various genetic tests on the CLL cells.
Remember that new treatments like BTK and BCL have changed many approaches for CLL. I spent a year on W&W and lost 2 stone and got sever fatigue before I was treated. BTK changed my life but could had killed if the sudden onset of an SVT was VT. So I am happy I waited for treatment.
My reading is that early treatment is being considered for (very) high risk patients where it makes sense as a counter to susceptibility to infections.
We have now reached an exciting era in which a plethora of effective anti-CLL therapies are available that have fewer toxic effects on bone marrow reserve and immune status than did past therapies. The parallel improvement in prognostic tools for disease progression has created a new opportunity to reassess the role of early treatment in patients with asymptomatic (or minimally symptomatic) disease who are at high risk for disease progression.
Supraventricular tachycardia is a rapid heart rate (tachycardia, or a heart rate above 100 beats per minute) that is caused by electrical impulses that originate above the heart's ventricles.
Well first of all may I welcome you to our club, albeit a club none of us wanted to join. A fabulous group with knowledgeable people who are all willing to help solve problems. However, any health worries should also be directed to your medical team. Have you been given access to a Clinical Nurse Specialist? Mine is always my first port of call with questions and she trys to answer any questions. I haven't physically seen my consultant for nearly three years because in her words 'she didn't want me in the hospital, where covid was rife'. She telephones me every three months to discuss my blood results. I was diagnosed in 2018, my after developing a raised lymph node on my neck. Thankfully I have not felt ill at all but after my white cell count raised in 2021, I began treatment with Acalabrutinib. I am 71 next year. Suggest you join CLL support and link up with Leukaemia Care and Blood Cancer UK.
24 excellent replies. My journey started in 2016. I had tracked my blood for 25 years after being told I might be a candidate for leukemia in 1996 after being treated with cisplatin for head and neck cancer. It was like drip ,drip ,drip. Absolute lymphocytes gradually creeped up for 20years and then I hit the threshhold. .
I went to Moffitt Cancer Center and saw Dr Javier Pinilla , a national and international expert in this field. The day I went my counts had improved just enough that he said I technically had MBL not CLL. He said to go home and have your blood tested every 6 months. So I did.
It gradually changed for 7 years and last Sept I had a bone marrow biopsy that showed infiltration into my marrow at 80% , many swollen lymph nodes along with other markers that scared me to death as I had also just gotten over Covid.
I returned to see Dr Pinilla in Nov 2022 and he said it wasn't time to treat. My lymph nodes weren't big enough and he didn't treat until infiltration reached 85-90%.
Now I am really scratching my head.
I had been in watch and wait for 7 years. I listened to a Dr from Dana Farber do a presentation on "watch and wait". She said it is frequently called "watch and worry"!
She also reported that about 35% of people diagnosed with CLL never need treatment.
The problem is they can't determine if any individual is one of the 35%.
I started my V+O treatment last week as my infiltration reached 85-90% in a bone marrow biopsy in May of 2023. Oh by the way I have had 2 biopsies- they are not a big deal like you might think. You may never need one.
My advice is to be sure you have aligned yourself with a CLL specialist. I have a hematologist/oncologist that follows me but they treat all types of cancers. I think it is very important to have that specialist who does CLL and blood disorders every day!
And most important, "live life." This is just another bump in the road. Not one any of us wanted but the advancements in medicine are incredible and there are more on the way! Good luck!
The folks that have replied to you have been great and many have way more knowledge about this condition than I. I've trundled along through the years after being diagnosed much the same way you describe with many of the same thoughts/feelings. I was somewhat younger when diagnosed but that was in Sept of 1992, I've had treatment a few times and a surgery for spleen removal which is unlikely to happen these days but other than that I've had a full and happy life. The new drugs which I'm taking at the moment and will be completed in August are amazing (12 months O&V) and have brought all my numbers back to normal.
Hi and welcome. i was diagnosed in April 2019 and I remember all the anxious feelings you are experiencing like it was yesterday. I was 58. I started Acalabrutinib in Jan 2022 and have had great success. It is hard not to think about new diets, foods, supplements etc or anything you think might stop CLL but I would say to be as healthy as you can be with the way you eat, exercise, meditation etc for an overall healthy lifestyle. This website is super. I also got a wealth of information from Patientpower.info. They offer videos and articles directly from some of the top leading CLL experts. I live in USA so not exactly sure of what is offered in the UK for CLL therapy. Stay 💪🏻 strong mentally and physically and educate yourself as much as you possibly can about CLL. I agree with Neal about getting copies of your labs and keeping the CLL Society chart or at least keeping your own file at home and also get a patient portal from your Dr if it is offered so you can get your results and reference them when needed. Ask questions, questions, questions all the time!!! Knowledge is Power!! I have a great Dr who takes time to answer all my questions now and in the very beginning and hope your Dr is like that as well. By the time it was time for my treatment I was very educated about CLL and did not fear it like I did when diagnosed. Hang on and Take care. It will get better the more you understand it. We are here for you. 😊💪🏻🌸🍀🌞🌻
you sound like me. I was diagnosed 14 years ago when I was 60 and also from a routine blood work. I ate healthy and exercised. It is also important to manage your emotional well-being. I was on watch and wait for 8 years with no medication and no systems. It is always good to get a copy of all your tests and scans. It is good to get a second opinion from an expert in CLL. Your immune system is compromised so be careful with Covid etc. The thing that my doctor told me when I asked her how I can better help myself and she said to have an alkaline diet. Do your best, don’t stress and enjoy your life
My husband was diagnosed with CLL in November 2016 from a routine blood test. He was getting night sweats, and was losing weight. On watch and wait for 9 months before he started chemo.Just had to make sure he was getting protein in his diet, and eating healthy.
He's 65 and in remission. Good luck with your journey. x
Sorry to hear you have joined our club. I'm 44 and was diagnosed 4 months ago. If you are like me (when first diagnosed) it might be praying on your mind every second of the day. I can promise you as you interact more with forums like this you will feel more hopeful. At first I was consumed with the fact I had cancer. I'm realising that I can live a relatively normal life at the moment on watch and wait. And with the advances in treatment I'm hoping that I live for many years with CLL being merely a footnote in my story.
I too, am a new member, diagnosed after routine blood tests in March. Since then I have learned so much from this site. It's so reassuring to know there are people with similar situations and more experience ready to help and advise.
Warmest welcome to you and a heartfelt virtual hug as well.😊 I am sorry you have to endure our unwanted CLL. You have received such great responses so far on educating yourself, get a cll specialist, charting labs, eating healthy, exercising, and caring for your emotional self. I can only add, please lock your post to "community only". Doing so brings you many more responses from our cll group.
Welcome, this is an excellent forum of information and support. We are of a similar age, I believe W&W should be renamed W&W&L … watch and wait and LIVE. All the best to you across the pond
Very similar path. I am in your age group.... a bit younger. I would say that watch and wait is a good option. Don't stress. Year one you will learn quite a bit. There are great tools and info on this site. My best advice is what I learned here and that is to get a CLL specialist vs. just going to an oncologist generally speaking. Also there is a great tool for logging bloodwork results (I think this was on the CLL Society site). They have amazing webinars that are free and you really should listen to them. Lastly, feel free to private message me anytime and we can also chat off line if you ever need it. A nice person did that for me and it was helpful.
Welcome, welcome. I asked the doctor, who confirmed my CLL diagnosis, about diet and supplements. his response was will not stop, slow down or cure CLL. It has been my experience, he was right. That was 6 years ago. I do healthy balanced diet and moderate exercise. Blessings, not all is lost.
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Newly diagnosed and hoping for a bit of advice
Diagnosed with CLL March 2022
I'm new and just been diagnosed age 46
CLL just diagnosed
Newly diagnosed husband
