DO OTHER PEOPLE HAVE CLL AND DON'T KNOW? WHAT WOULD HAPPEN IF WE DIDN'T TAKE THESE HIGH COST MEDS?

How does the "average person" find out they have CLL? Are there other people out there who never know, unless they have a CBC blood test done? My case I was in the hospital for bronchitis/heart problems. A "stray" Doctor just happened to look at my records and thought he noticed an "irregularity". Asked my permission to have "his Dr. friend" run a special test and they would get back to me. Walla - CLL. This first Oncologist told me I would more than likely die of old age (was 68 then) before CLL got me. That's when it started. All the blood tests, bone morrow tests, scans, etc. Was told to watch "for signs" such as rapid weight loss, night sweats (who doesn't have these), high fever of 104 for several days. NEVER had these "signs", yet here I am, 4 years later, spending thousands and thousands of dollars, watching my white cell counts climb, dealing with anxiety and depression, etc, etc. I sometimes wonder if I just ignored the first guy, had no tests done, if I wouldn't just not be going through all this. Anyone else ever wonder this? How did "you" find out?

21 Replies

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  • Hi Duffy, it might be an idea to restrict your post to the community in order to allow people to share more private details like this with you. Do you know how to? If not;

    'If you wish to lock your post, select the downward arrow at the bottom of your post and click on 'Edit'. You will see an option called 'Who can see my post'? It is currently set to 'Everyone'. Just click on the 'Only followers in my community' to lock it.'

    Regards,

    Newdawn

  • Thanks for info. I used to restrict, but then someone else told me I would get more/better responses if I opened it up. But, thanks.

  • No, only members can respond duffy but without restricting to the community, the post and responses can be accessed openly on the internet. Interesting question you've posed and in many ways I'm glad I didn't know about my CLL for the 4 yrs (min) I'd already had it.

    Regards,

    Newdawn

  • Many members do not answer unlocked posts or restrict what they say because hey don't want their personal information coming up on google. I don't know who told you that the opposite is true.

  • i can't tell if its locked

  • It has a little padlock next to the main post when it's locked gapwoman.

    Newdawn

  • Thanks for the info. I didn't know either. I do try to remember to mark all my posts for viewing of the CLL community only. I'll be watching now for posts that are open to public & shy away from them.

  • Hit the nail on the head...... But I am thinking it is better to know than not know. The question I ask is; might it be better to know when I get symptoms than find out coincidentally from a blood test while treating something else. The only reply I have to myself is that by knowing I try to eliminate the bad habits (for me too many night caps) that might help me be healthier in the long run. Hows that for being optimistic!

  • Great point Duffy.

    I've often wondered if my gall bladder hadn't failed I would simply be a tired 70 year old without all the anxiety and foreboding especially since I was told I probably had cll for 5 years before diagnosis.

    I think Drs. do a disservice with tell us we'll probably die from old age or get hit by a bus rather than cll.

    But here we are making the best of it living life a day at a time, a symptom at a time. Sure beats the alternative.

    I'm grateful for all the support I've received from some many wonderful folks including this forum. No regrets.

    Thanks & be well.

    Bill

  • Bill; so true when you say you probably had CLL for five years before diagnosis. It happened to me, but mine was more like 10 before diagnosis. I can go back to old blood work and see that my lymphs and neuts were upside down in 2002. Not diagnosed until 2012. However, it is what it is and we live with it a day at a time. Carole

  • Hi Bill,

    Good question, which I'm sure many of us have pondered.

    The majority of us learned of our CLL in a similar way to you, according to this poll taken 4 years ago: healthunlocked.com/cllsuppo...

    With regard to whether or not to lock your posts, this is what I posted about it recently: healthunlocked.com/cllsuppo...

    In answer to your question, if we fall into the ~30% who never need treatment, then there would be a good case for us not ever knowing of our diagnosis. Problem is, we just can't know that with the inexact prognostic science currently and may never be able to know.

    As tekusa noted, we have the opportunity of living longer and better if we are (a) informed of our diagnosis and (b) able to educate ourselves on what we can do to live well with CLL.

    You haven't shared how your diagnosis has specifically impacted your financial situation - whether it's on health insurance or additional medical tests or even treatment, but at least with CLL/SLL, most of us are able to get by with the relatively low cost approach of monitoring in watch and wait (the cost of course varying with our respective country's approach to health care expenditure...

    Neil

  • I did ignore it - for two years. Came up as a red flag on a job sponsored blood test. I felt fine then - but then I got really sick with joint pains and stiffness and extreme fatigue which prompted a physical and the results sent me to an oncologist. The dire news sent me into fight mode after the initial shock and I was determined to control this thing (this is where you laugh) -long story short the changes I made in diet, exercise and attitude have made me healthier and happier than before the diagnosis - but I'm still in watch and wait mode there's just this sword hanging over my head ...

  • Hi Duffy like most people I was diagnosed by accident 6 years ago. I do not feel knowing pre the need for treatment helped me given the shock and anxiety that followed. However, like many in this community I have come to terms with this and have improved my lifestyle accordingly. My oncologist told me many people following diagnosis say thanks but no thanks doc I will come back to see you when I feel unwell. For me once knowing I felt impelled to join watch and wait and educate myself in preparation for potential treatment which has both helped and hindered my anxiety. On the bright side I am prepared should that day come when treatment is needed. At least I will not have to go through that initial shock and will know enough about treatment to make informed decisions which is a bonus. I wish you and all of this community a safe journey.

  • In a strange way CLL may have saved my life. It's only the knowledge gained on this site which made me aware of the massively increased risk CLL'ers have of skin cancer. It made me vigilant about checking my skin. So when a mole I'd had forever suddenly looked a bit different, the knowledge of my CLL took me to the doctor. The rest as they say is history. It was a malignant melanoma and with immune dysregulation, who knows how rapidly it could have invaded into my lymph nodes. I caught it early and had it eradicated.

    Without CLL, would I have bothered? Probably not. Even my GP didn't think it was a suspect mole.

    It's also meant I don't take infections for granted as pre CLL days because my secret defender the immune system can't be relied on. Yes ignorance can be bliss and in some cases I totally understand not wanting to know but it can also have serious consequences.

    Newdawn

  • Hi duffymcgrif. I think you may be right in a way. I guess you have to try to get back to the mind set of "before you knew".

    One important correction. People with CLL should not wait until their temperature gets to 104F. You are supposed to go to the ER if you have a temp of 100.4 . Atleast that is what I have been told by several doctors. One even told me if I have a sudden really bad chill. Of course when I was sick I had fevers every day for a long time. But they never went over 100.4 unless I was really sick.

  • Hi duffymcgrif,

    As Newdawn and AussieNeil and other posters indicated, most people don't learn about their CLL until some accidental event or strange symptom diagnosis involves a CBC, and if there is no apparent cause for a high WBC then good doctors will follow the clues and take further steps to identify the cause of the high counts.

    But I must disagree with your premise that knowing you have CLL causes the need to treat. It may cause anxiety and worry, but the best doctors will follow the iWCLL 2008 guidelines and only treat when necessary- see:

    bloodjournal.org/content/11...

    So whether you know when CLL clones first appear in your blood, or when those CLL cells are more than 5,000 it really does not matter. Many people have CLL clones in their blood but only 1% of them each year have the level cross the arbitrary 5,000 line from MBL to CLL. But even that event does not matter. The amount of CLL must rise until symptoms are strong enough to require treatment. See paragraph 4.1 in

    preview.tinyurl.com/y8wl9byd

    or bit.ly/2roVq4p

    So despite your assertion "yet here I am, 4 years later, spending thousands and thousands of dollars, watching my white cell counts climb," is NOT because of your early diagnosis, it is because your CLL is growing faster than most, and your doctors are helping you watch and anticipate the need for treatment.

    Len

  • It's a good question, Duffy, whether knowing causes more issues than not. It has been a mixed blessing for me, having been diagnosed 13 years ago after slightly elevated WBCs during a routine medical check.

    On the negative side, the initial shock followed by ongoing anxiety and fear about the possible future (having seen both parents die of unrelated cancers and my sister also diagnosed with CLL and have to start chemo right away) caused me to look for ways to confront the fear and try to live in the moment. That's an ongoing process for sure. I also stepped back from a stressful career track, with no regrets. Knowing I have CLL explained some of the bronchial and other infections I'd been having too.

    On the plus side, I was forced to pay much closer attention to my "terrain", as Dr. David Servan-Schreiber calls it in his book Anti-cancer-- nutrition,, the impact of environmental toxins and a "healthy home", exercise, mind-body connections and other factors -- to empower myself to try to resist this cancer. I doubt I would have done any of that without the strong incentive of the CLL diagnosis.

    A double-edged sword for sure . . .

  • My CLL was detected from an annual mammogram!

  • Hi Duffy,

    You asked how others discovered we had CLL...

    Back in 2006 I was getting very tired and my GP did some blood tests. They ruled out other causes of tiredness but my lymphocyte count was too high - suggestive of CLL. Seeing as no treatment would've been recommended for CLL at that stage, no further tests were done - just 6 monthly blood counts. I continued to work (part time) but tried to be more careful to avoid infections.

    For me, it was actually a relief to know I really did have something wrong and wasn't just being lazy. It helped me to have a reason for my tiredness, so I could explain to people why I wasn't as energetic as before. (I didn't tell them I had CLL, I said I had a blood disorder that made me more tired and prone to infections).

    A couple of years later my lymphocyte counts had risen even more and the CLL diagnosis became more definite. But even then, the doctors' reactions were quite low key. No expensive tests, scans or bone marrow biopsies. (I'm in the UK and that seems to be the usual policy here). So I just continued with the 6 monthly blood tests for several more years. During that time I was getting more tired, and had various “minor” infections. But I didn't have any sweats, weight loss, or lumps and bumps.

    I don’t want to sound too casual about all this though, as if I sailed through it all with no problems. When I got the diagnosis it was still a shock and I was very upset. I did a lot of reading up about CLL on line, some of which wasn't very helpful, though some was. I wish I’d found a support group like this one, at that time.

    I think Newdawn makes a very important point, that knowing about our CLL may actually save our lives! We will be quicker to check up on suspicious skin lesions and get medical advice on possible infections. We can keep up to date on vaccinations. We can try and improve our lifestyles – diet, exercise and attitude (as Stretch1 has said).

    I completely agree with janicelee about not waiting till your temperature gets to 104 before going to A&E. After my diagnosis, I was told if my temperature went over 38 degrees C (100.4 degrees F) I should seek medical attention.

    All in all, I don't regret having been given a diagnosis quite early on. It was an unwanted shock but also something of a relief, and a wakeup call.

    Wishing you all the best,

    Paula

    P.S. The other part of your question, Duffy, is what would happen if we didn’t take these high cost meds? I assume your doctors talked this through with you and decided that Ibrutinib was your best treatment option, but unfortunately it’s one of the most expensive, partly because it needs to be taken indefinitely and not for just 6 months.

    What would happen if we ignored the docs and had no more tests done? Well unless we’re amongst the lucky 30% whose disease is very slow-moving, over time we’ll get more infections which will be hard to fight (eg pneumonia), we’ll get increasingly anaemic (causing fatigue and breathlessness), and our blood won’t clot very well, causing bleeding. Enlarged lymph nodes may also cause increasing problems, including internal ones that may press on vital organs. Spleen can get very enlarged, causing discomfort and stopping us eating full-sized meals. (That happened with me and I lost a lot of weight). On the other hand, if we know about our disease and have regular checkups to monitor the best time to start treatment, then hopefully we can avoid that scenario…

  • I too found out during a routine yearly physical. I am happy I found out because it was a wake-up call for me. I had allowed stress to control my life - and now I control my stress. I now make time to rest/relax and enjoy life. Although I always ate well, I am now eating much better than I ever have - and I am making time to meditate and go for 'slower' walks in nature - not that I need to walk slower - but I want to walk slower - to take more time to appreciate and be grateful for every precious moment of life.

  • I think we've all had the 'what ifs' at one point or another. Had you never found out about it and one day woke and didn't feel good, went to a doctor, had blood work, and then be told you have CLL, and your numbers are in the tank, and you think what in the world happened? Think how you'd feel then. You sound like you're on 'watch and wait'. Do you get out? Do you exercise? Yoga is great. You move, meditate, and so on. Exercise will really help you with depression. Walking is wonderful and free.

    My numbers are going up and down. Lymphs going up, red count going down to the point I may need treatment for that. I've watched my lymphs go from 11,100 five years ago to 55,000 now. I have good days and not so good days. On the not go goods I try to not do much. Then, suddenly I'll get a burst of enthusiasm and get a lot done. I did yoga until I began having a leg problem, but sure hope I can get back to it soon. I do it with 15+ other seniors. You need to get moving so you stop thinking about your situation all the time.

    Your initial question is valid. Most of us have experienced what you're going through. You have to change your life. Make it happen! My best, Carole

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