Came down with a UTI (unknown for me), blood in the urine, third course of antibiotics. Did FBC and scored 74% lymphocytes (and other WBC anomalies. Long story short, just diagnosed CLL. Slightly swollen neck lymphs.
Not sure if it’s the antibiotics (been on them for just over 2 weeks) but have also had diarrhoea , for the same period, so trying to eat my way out of any potential weight loss (not overweight).
Very moderate night sweats - not ‘drenched’ (however I have always enjoyed a lot of warmth in bed - drives my wife up the wall).
Haematologist confirmed CLL & said ‘don’t worry, be happy’!
Treatment “plan” is a follow-up appointment with him and chest x-ray in six months, no treatment.
I was naive enough to I ask about my life expectancy with CLL and he said ‘you could be here in 30yrs at stage 0 (zero)’.
Somehow my reading on the subject makes me doubt it and suggests my appointment with the grim reaper will be statistically a couple of decades less (at most).
Worried & miserable and would love to know others’ experience. Thanks, P.
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Petroc
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You’re going to be fine. Everybody’s path is different, but I can tell you about mine. I was diagnosed at stage 0 in 2000. Didn’t require treatment until 2015. Had chemo, then targeted immunotherapies since then. It hasn’t been easy, but the immunotherapies are so much easier to take, it’s really not bad. I’ve had some complications in between. I get IVIG every month, and there are some other things, but by & large, it’s very manageable, IF YOU MAKE SURE YOU FIND THE RIGHT DOC. Make sure you find a hematologist who specializes in CLL. And make sure you can talk to them, and that they LISTEN TO YOU. The rest, you’ll figure out as you go. Best of luck to you. With the new treatments, and more coming, I believe you will do very well
Hi Nick - thanks very much for the kind reassuring words. I’m pretty sure my local hospital doesn’t have a specialist in CLL, so I’m going to have to shop around.
I only wish I knew what was happening to my weight, is it the antibiotics & diarrhoea or is it the CLL? I suppose I’ll only know when the course finishes on Tuesday.
Not sure what “ IVIG” but I’m on a very steep learning curve from taking my good health for granted only two weeks ago to becoming a jibbering wreck (immediately pre-diagnosis when I was waiting to see the Haematologist). I’ve levelled off a bit now and a bit calmer but occasionally I have ‘wobbles’ where I see myself as having the worst, most aggressive, malignant CLL imaginable!
It really is so good to know that there is someone I can talk to like you, who is familiar with the new path my life has taken.
IVIG is immunoglobulin, administered via IV. Immunoglobulins are what our bodies use to fight off diseases. For many of us, our bodies lose their abilities to maintain these levels sufficiently for us to fight off infections. IVIG gives us a mixture of other peoples’ immunoglobulins. Some people get it every month, 6 weeks, two months, or as needed. You may never need this
We aim to provide, friendship, information, support and community, this is the place to express your concerns or ask questions without worrying those around you.
If you haven't already discovered them then our Pinned Posts are a good place to start reading and to become better informed about CLL.
Thanks so much Jackie. I posted this only two hours ago and your the second person to be good enough to reply and point me in the right direction. I shall look the hyperlinks up now.Many thanks.
Welcome Petroc! You came to the right place to learn about CLL and get wonderful support and insight from many knowledgeable people. Jn954 is one of those many helpful knowledgeable folks and he has you rockin with great links to read that you can learn a lot from.
Suggest start with the “CLL for dummies” they are many peoples favorites,, CajunJeff who write those, is a master writer n even I can understand some about CLL from reading his gems.
So your a newbie at this, a party you did not want to be invited too. And I see your like me n on the early infamous W&W trail. That’s not a bad place to start versus finding out your deep into a treatment stage right from the get-go. Not that any of this is a preferred choice of ours, be it W$W or treatment. But so you know, treatments have come a long ways, much better now, n chemo seems to be replaced by new wonder pill treatments, if n when you need them.
I did the same Q&A with my CLL doc back on Sep 9th… threw out the same bold question about life expectancy… n got the same answer you did pretty much.
Don’t bother to Google any of that too… errrr!!! (buzzer sound) … wrong move, inaccurate data Google will have on that death topic. So ease your concerns best you can, you’ll be alright. Easier said then done, this CLL can play weird mind games cus of the wait n watch mode. Who made that W&W term up anyways? But it is what it is, for good reason, and you’ll hopefully start to learn it’s ok and move on with living your life. Find a good CLL doc who will be your partner on that W&W trail, n will help you out.
BTW, this website will answer anything you throw at us. No such thing as a bad question. We’ve all been where your are at and can relate!
Hoping you’ll have a very-very long W&W journey, take care, and again you’ll be ok.
Oh … just noticed rereading my reply, I messed-up referencing Jm954 name n stated a he when in fact she is a she (Jackie the scientist) n one of this site’s smart Administrators that replies quickly (n you’ll probably hear from others too). They really make this website awesome. Sorry for that mess-up, my bad.
Thanks Pin, I must say I’m overwhelmed at the replies. I expected to wait for a few days and consider myself lucky if I received one!I think there’s a pet tern emerging already - get a good CLL specialist. Much as I like him on a personal / professional basis, I don’t believe the haematologist I have just seen is a specialist. I also have a feeling (from some throw-away reference he made) that the first port of call vis-a-vis treatment will be chemo; which seems quite ‘old hat’ for these days of kinase inhibitors, etc, etc.
I’m not at the stage of getting on with things yet, (it can’t come too soon) but the immediate panic & acute anxiety have diminished in no small part thanks to you wonderful people. Coming on to this forum was the best thing I’ve done. I ready I feel the ‘support’ of you all by sharing experiences & knowledge, - so a heartfelt thanks to you. I look forward to many exchanges with you in the future.
Yes the replies will be many Petroc n lots of great advice for sure. This website is priceless. From the many replies you are already getting some good pointers from the “experts” (not me) on this CLL world.
I see you added me to “Follow”, you are the first one! I am honored and will try not to mess that up.
I look forward to chats anytime Petroc n seeing we are in the same newbie W&W boat we might have common questions about CLL and living with it, etc. I’m half retired, gonna go 100% all in this Oct so why I mention that is I plan to keep myself “busy” with lots of outdoor activities with my wife, volunteering, etc. and with that full-time “busyness”, I figure it’ll help keep my mind off CLL.
Gotta move forward, stay positive I figure, and live life. Don’t let CLL beat you down mentally. A lot of folks on this site have taken that road n it’s a priceless piece of advice I aim to do myself.
Further to the informative welcomes you have already received, here's just a bit more clarification of the points you've raised in your profile and post. First off, thank you for writing a bit about your situation in your profile. Maintaining that over the decades (I'm in my second decade of living with CLL after being diagnosed in stage 4 and have only just finished my first treatment), really helps other members provide you with more helpful replies: healthunlocked.com/cllsuppo...
1) Totally ignore lymphocyte percentages. White blood cell percentages are more misleading than helpful with CLL. What matters are the absolute counts - having enough white blood cell troops (primarily neutrophils) to fight off illnesses and the amount of CLL in your blood (lymphocyte count) growing slowly enough to not be a problem. Some of us achieve lymphocyte counts over several hundreds (hundreds of thousands in the USA) during watch and wait.
2) Other blood cell counts in your FBC/CBE/CBC panel worth monitoring are your platelets (bleeding/bruising risk) and haemoglobin (anaemia/energy).
3) Diarrhoea is a well recognised side effect of antibiotic use. Weight loss with CLL is more likely due to an enlarged spleen giving a false feeling of fullness (so you eat less), your body working harder fighting off infections with a compromised immune system and/or the demands of maintaining the CLL tumour growth. CLL cells don't live forever, they just die slower than they clone, so providing the nutrients for CLL growth and for recycling the dying CLL cells takes energy.
4) Night sweats of concern with CLL are truly drenching sweats. You'll need to change your night clothes and even bed sheets.
5) Don't google for information; it takes time to learn how to discern good sources of information from the inaccurate and often dated information you'll find there. Most of what you find via internet searches that is older than 5 years can be safely ignored. There's more than enough good information available here, with key information in our Pinned Posts section healthunlocked.com/cllsuppo...
6) Take your time reading through the Newly Diagnosed post: healthunlocked.com/cllsuppo... Just pick through what's there and read what you find of interest, returning to other sections as they become relevant. Time is one gift we have with CLL and you've taken the first steps towards becoming an informed patient.
7) Finally, be patient with yourself as you adjust to living with CLL. It can take a few years to make the adjustment to living with the uncertainty of what is an incurable, but chronic cancer, with very good and improving treatments that, with care and the knowledge you'll learn here, can enable you to live perhaps even longer than you would have done otherwise, even if you don't realise your hematologist's prediction. I lasted 10 years in stage 4 before treatment delivered my best blood counts in 15 years and shrank my spleen and nodes nicely. A cancer diagnosis makes us appreciate what's important about life and reassess our lifestyle. Most of us can make improvements in our fitness and diet and reduce our stress levels, plus with CLL, we get regular monitoring of our health through blood tests and physical examinations.
Terrific Neil, thanks for the terrific information.
Along with the equally kind & generous contributions from others I have been truly overwhelmed (and I hate to say it from a person not give to easy emotions) and not a little ‘misty-eyed’ from the kindness, reassurance & knowledge I have received from you all. The detail you supplied is EXACTLY what I needed to settle my newly discovered hypochondria, (I think it’s a temporary psychological reaction to being a non hypochondriacal fit, well person two weeks ago to becoming a person who now has to acknowledge and adapt to a chronic illness in his life).
As with Pin, I think this is the beginning of a hopefully very long and fruitful relationship / journey that we can all share amongst ourselves.
Hi. Welcome to the family. A real shock upon diagnosis, You have many questions no doubt. Ask away we will try to assist you. For me personally, I was diagnosed 6 years ago on my 55th birthday. I have catalogued my journey on this forum ups and downs, as have many others . Each case is different. Please feel free to browse and i hope it is comforting and educational for you. Best wishes
Thank Jacks, consider yourself followed! I shall eagerly consult your past experiences & insights. As I have said to others kind enough to respond, I am so grateful to you all. They say a trouble shared is a trouble halved but there are so many good, generous, insightful, helpful folk here that my anxieties and fears of just a few days ago are now a fraction of what they were. A very heartfelt thanks to everyone of you.
At this point -- where I was 1.5 years ago -- my onc said I would probably die from something else. Also, 4 years before, had blood in urine, which led to whole work up, with no conclusion except probably a kidney stone (which I have had before). And it stopped after a few months. Never connected it with my diagnosis 4+ years later. Have a top hemo onc. I saw him every 6 months until numbers jumped up at this past May visit (1.5 months after vaccines) Now going to see in 4 months. Hope in Sept numbers will have settled back. Antibiotics are not your friend, btw, unless you absolutely need them, if I may say.
Thanks Vlam, from being in a very lonely frightening place less than 24hrs ago, you wonderful people have cast light on my darkness. You have given me hope and that is priceless. Thank-you one and all.
Your experience is similar to mine although in your case it took four years to get there. With hindsight, after sharing my story with you all, I now believe I’ve been varyingly symptomatic for years.
For years I’ve suffered from fatigue (and put it down to my laziness), my wife repeatedly told me to go to the doctors as she could ‘see it in my eyes’). As ever, I resisted and put it down to my laziness. Similarly, Ive had night sweats for years (again I put this down to the fact that Ive always liked a very warm bed to get me off to sleep) on occasion however these were more than sweats, rather, drenching sweats where the bed covers had to be changed.
Re your experience Vlam, I wonder if it is merely coincidental that a couple of moths ago I had my first AstraZeneca jab? I suffered no immediate ill effects, but after reading about your experience, I now remember that some six weeks after the jab I noticed - for the first time - a slightly enlarged lymph node on my neck. Once again, I passed it off as ‘just one of those things’ & forgot about it (until now).
Just 18 days ago I was indifferent to health & took it for granted. I thought I was ‘wearing well’ and all good, then commenced 18 days that changed my life.
Stupidly, and without adequate tools, on a hot day in a (formerly) windowless, humid room, I decided to insert a large window. I cut through the breeze block wall with nothing more than a small hammer & bolster. It took me 3 hours, I took in no fluids and sweated profusely. When I had finished I was quite proud of myself and boasted to my wife that many younger men would struggle with that job & those tools. I didn’t know it but I was riding for the fall of my life. The following day, as usual, I woke up, took the dogs out for their usual early morning three mile walk, came back, had breakfast; - all good. Then stomach cramps & diarrhoea started and I had an almighty pain in my lower left back. I tried to urinate but couldn’t; - I dismissed it and attributed it to the over exertion of the previous day. I went shopping as usual, returned, and again tried to urinate. It was nigh on impossible and very painful. After trying for half an hour what ultimately dribbled out was almost pure blood mixed with a little urine.
I then concluded that ‘mortality’ was knocking on my door and I had bladder cancer. I went to the hospital in terrible pain in both my lower left back and an intense feeling of burning along the complete length of my urethra.
Eight hours, and incredibly embarrassing triple attempt at catheterisation, an ultrasound and an FBC later, I was told I had a urine infection (my first ever), then came the info that a Haematologist would like to see me in a fortnight and that they required more blood for analysis. They gave me a one-off tablet for the infection & I thought that was that.
Instead of clearing-up the infection got worse, I was asked to return, this time a five day course of antibiotics was prescribed. My diarrhoea got worse (a known side effect) the infection improved but still blood in the urine (now much more dilute). Then followed another 10 day course of another antibiotic. I have another two days to go and I’m hoping against hope that there is now no more blood in the urine. The burning sensation when urinating seems to have abated, I’m drinking gallons of water (as advised), however (or maybe because) the diarrhoea is as bad as ever. I desperately hope that on Tuesday when the antibiotic course concludes my diarrhoea and paranoia about weight loss will diminish. For the past week (after seeing a sudden & unexpected fall in my weight), I’ve been deliberately eating more but it seems to come out as soon as it goes in!
The fortnight I was waiting to see the Haematologist was the worst, darkest, 14 days of my life. I had written myself off, as by then, I had made the mistake of repeatedly googling ‘Lymphocitic disorder’, etc, etc, etc. I had concluded from my amateur ‘research’ that I was a dead man walking. Anyway, the Haemotologist tried to be reassuring (please see my previous posts) but all I heard was ‘Leukaemia’. So, if it wasn’t for you wonderful people here I would have googled myself into having the worst case possible of ‘Leukaemia’ and be busy ‘getting my affairs in order’ (as they say).
I’m dreadfully sorry for the length and morbid detail in this post (and for possibly boring everybody to death) but I honestly feel I’m amongst good friends that I can confide in and share my story and my fears.
So sorry for the emotional and physical pain you have been experiencing. We all have stories of our initial diagnosis and treatment and sharing it helps. As others have stated, you need a CLL Specialist on your team. CLL Society (cllsociety.org/ ) is an education and support network, and is one of the organizations that keep a list of CLL Specialists by state, on their website. They also provide a free Expert Access online consultation with one of these specialists, if there is not one in your area or you have insurance limitations that don't cover a consult or treatment by one of these specialists. Check out the website and complete the form to apply for the Expert Access program, if you care to pursue that option. CLL Society also has online/Zoom support meetings I have found very helpful. With a CLL diagnosis, you often have time before you have to make treatment decisions. It is wise to "front load" your knowledge and education on treatments before you need them. One precursor to the need for treatment are repeated infections. You may have a one off infection here, that of course, needs to be treated. It may not mean that CLL treatment is imminent. Once under a CLL Specialists care, you may be entering a more closely watched and wait period to see if infections continue (sinus infections, UTI's). I had 22 months to treatment after diagnosis. Many have a much longer W&W period, but we are all different. Wishing you all the best on your CLL journey. You are in the right place at HealthUnlocked, to educate yourself on this chronic condition and get the support you need.
Thanks Dori, I can only reiterate my thanks to you all for the sympathetic and extremely useful knowledge you are all supplying.
I didn’t know about the CLL society, so I’m off there after writing this response.
I’m not convinced the Haematologist to whom I have been allocated is a CLL specialist and the need to have such seems to be a recurring theme on here. So, priority number one will be to look around and see who may be available. Luckily I am under the UK NHS so I need not worry about cost which, of course, is a tremendous weight off one’s shoulders.
Thank you for your kind thoughts & wishes, and may I offer you the same in return. Every cloud has a silver lining and heaven knows, this cloud has been huge & ominous, but thanks to this site my emotional / psychological’ burden’ is exponentially lighter than it was just 24hrs ago, before I had the great good fortune to come across you all.
I notice the one question you asked that at least the first ten or more people didnt touch is lifespan post diagnosis.
Probably the reason no one touched that is because there isnt any true average answer, because each of us has different mutations, started at different ages, and will respond to the various choices of medication individually; hopefully, the correct one is chosen by a top CLL Specialist (based to a good degree on your number and type of gene mutations)
With all of that said, I can at least give you some idea of number of years; since, I'm the fourth in a row in a direct line in my Father's side of the family. Me, My Father, His Mother, and her Father. My Grandmother lasted until age 93, and her Father by very old memories was a real old person too. My Father didnt make it long term and went at age 71, but he bled out. He didnt have to bleed out, if he didnt have an HMO, so I don't view his age at death as valid. I'm 74 and three and a half years post diagnosis. Seem to be going fine and hope to beat Grandma's record of 93. In my work, which is Medicare insurance, I've spoken with thousands of people. Here and there the topic comes up and I've learned of their bout with CLL. I personally know of a good number who are approaching or in their eighties.
If I'm understanding correctly you might be very young and around 30. If so that is very very young for this illness (average age at diagnosis 65 and older). Its easy to say, but don't worry and just live and enjoy life to the fullest and best you can do. The rest will take its course, and it will be what it will be, but in general a lot of CLL patients go as many years as they might have without CLL anyway. Best luck
Re my age, alas, my 30s are but a distant dream and I have now advanced to 61 (bang on the median age for diagnosis.
I must say the diagnosis explains a lot and I suspect I’ve been varyingly symptomatic for years with moderate night sweats, fatigue and repeated sinus infections.
Apart from my father who died of lung cancer aged 58 (yes he was a smoker) all my relatives on both sides have advanced to good ages (my mother died aged 94). Last Thursday (diagnosis day) I feared I would be joining my father in a relatively early death but now thanks to you and the good folk on this site I have been disabused regarding my very imminent death. In addition, whereas I took life and reasonably good health very much for granted, since Thursday, I have a sharply new realisation that every day is a gift. I thought that cancer was for ‘other people’ and now I find myself as one of those people.
They say a trouble shared is a trouble halved. I can happily say that due to you all here it is now a fraction of that half.
Thanks to you all, I now realise the importance of getting a specialist CLL. Much as I like the allocated Haematologist personally, I don’t believe that CLL is his area. Upon diagnosis he said that my blood has been sent to another centre for more detailed analysis (I presume this is to look at the mutations, etc), however he said that my next appointment will be in six months for more blood tests and a chest x-ray, so I won’t necessarily be informed of the sub-‘type’ of CLL until then. In addition, during my appointment with him much of what he said after the word ‘Leukaemia’ was mentioned went in one ear and out of the other, however I vaguely seem to recall that any treatment deemed necessary would be chemotherapy. I admit I hopelessly naive on this subject and did much googling before wise counsel on here told me to stop, however, during that time it increasingly seemed as though chemo is rather ‘old fashioned’ and there are newer more targeted therapies. In the round therefore, I am thus pretty convinced that I’m hardly in a ‘cutting-edge’ institution as regards CLL!
I now realise I’ve rambled on too much -again - so my apologies. However I must admit that I have found my time on this site as really cathartic (as I know I’m speaking to experienced, knowledgeable and empathetic people; like yourself). So, a heartfelt thanks to you.
I messed up with the 30 year old assumption because, I read too fast the last sentence of your original message. It mentioned 30's, and I assumed you were in your 30's, but instead it was reference to thirty years or so of expected life with CLL.
From all I've gathered on this site, and speaking with others, most of us can easily last until we would have without CLL. It all depends on how slowly our bad cells grow, whether or not they spread to other body areas, and also the drug of choice for treatment and how your body handles that drug.
Chemo went out the door for those above age 60 a number of years ago, when the doctor I lucked out into seeing helped bring the first Novel Targeted Therapeutic Medication to the marketplace. That first one is Imbruvica (generic name Imbrutinib), and now there are a few more in addition to trials with combination of a couple of them. These new pills are much easier for the body to handle than Chemo, but they too can have some serious side effects. It is the dangerous side effects that is the reason we end up in Watch & Wait instead of starting treatment upon diagnosis. At first I was pretty upset when I heard the plan for me was Watch and Wait. I'm thinking about this deadly thing inside of me whose intent is to kill me, and my doctors idea of lets just watch and wait. You watch and wait until the deadly thing is really hurting you, and then you try to treat it; again, because, the potential side effects of treatment can be worse than letting the deadly thing do its thing inside you.
To me it sounded like a football game where the opposing offense is marching toward your Goal Line, and your Head Coach refuses to put in his best Defensive star players. His team all looks in wonderment, as the opposing team continues to march until they reach the Red Zone (about the 20 yard line in a 100 yard field). Then the Coach gets up and yells to his star defensive guys "Ok now get in there and try to stop them". Seriously speaking that is about totally accurate with this Watch and Wait. In a real Football game, you would want to kill the Coach. With this I've learned to be thankful we are just Watching and Waiting, because our bodies can handle the progression of the illness and treatment is nothing to look forward to. With that said the new treatments are working really well, and many of us are reaching levels close to normal with the treatment.
I gather you are in England, from the spelling Haemotology (we leave out the a), and I am not familiar with top CLL places there. I'm sure there are tons of people on this site however (most of whom seem to be from England), who can give you names of top CLL people in your immediate part of England.
Good luck my friend, and Happy 4th of July (no, whoops, sorry about that one), and enjoy your Daughters and family and life ahead.
Thanks Carl, I know you’re from ‘over the pond’ but I get your football analogy, which, in short, were my sentiments entirely. I want this ‘thing’ out of me, - quick! Thanks to you all on here the penny is finally dropping that CLL is ‘not your average cancer’. Stagings appear to be assessed differently and seem to be able to go up and down unlike ‘traditional cancers’ where the staging seems set in stone (like my wife who had renal cancer - stage one - over five years ago and is just about to be given her ‘all clear’). Please correct me if I’m wrong but the ‘progress’ of CLL seems variable so, from my reading so far, I can go through symptomatic phases which may well wane, so it will take a suite of consistent symptoms to warrant intervention.
I desperately hope that the treatment protocol over here mirrors that over there, as the mere idea of chemo fills me with dread as I witnessed it’s effects on a number of occasions.
Just a quick note - I was also naive enough to ask how much time I had left when I was diagnosed 7 years ago. I was shocked to hear 1-2 years. Seven years later, I still have no symptoms and my cll specialist thinks I will live with cll rather than die from it
Because of the threat of infection, I was started on monthly hospital IVIG (intravenous immunoglobulin) 18 months ago which was switched to at home weekly SCIG (subcutaneous immunoglobulin) soon after. Easy, painless and takes an hour a week. Earlier this year, I was started on Acalabrutinib to try to head off potential bacterial infections. So, both treatments are preventative.
In the meantime, other than mental stresses, my life has been pretty good with cll. As you learn, everyone’s path will be different. So, try to concentrate on living your life and stay away from Googling “stuff” - I didn’t for the first couple of years resulting in many sleepless nights.
Hi Viz & thanks so much for ‘easing my burden’. Truly, I honestly don’t know in what dire psychological condition I would be in had I not come across you brilliant compassionate & informed people. Thank god I encountered this site! With your incredibly helpful & wise responses I would have gone into meltdown & the troughs of depression. CajunJeff was the first to warn me of the dangers of googling and now with your reinforcement I have been google ‘dry’ since hitting this site! Thank-you, - wise words tend to be the same words! Immediately after diagnosis, my googling had me six foot under in a matter of months!
Yes, there is a churning background resentment at the moment - good weight, never smoked, drink little, regular exercise, pretty fit & healthy compared to some of the people I see who I went to school with; but instead of me saying ‘why me’, I increasingly say ‘why not me’? I’ve already lost dear friends and relatives (some younger than I) to heart disease, cancer, etc. After reading all your contributions on this site, I increasingly consider myself rather lucky in having one of the markedly more ‘benign’ & ‘indolent’ chronic diseases. I’ve had a crash course of learning to take every day as it comes - and enjoy it - rather than worry about things in the distant future. Over the last 48 hrs since becoming a member of this wonderful society, I feel mentally MORE healthy regarding my lifetime high anxiety than I ever have done; - and for that, I thank you all on here so much! What a gift!
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