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Hi All

I've said before I feel a bit of a fraud saying I have CLL, although the facts are there. I feel for all of you who have gone on to treatment or are nearing that stage, but I am currently feeling my own case is something about nothing really, too blasé?

My latest appointment was yesterday, no raised nodes or spleen issues. I do feel tired in the afternoon but I put that down to work! My previous appointment was 4 months ago. WBC was 21, lymphocytes 14.1. Yesterday’s results were WBC 20 and lymphocytes 14.6, so pretty much no change which is extremely good news. I’m wondering whether it maybe just one of those things whereby I’m lucky and will stay pretty much the same. Anyone have that experience or is it the case that it will keep rising albeit very slowly, or is there a point where it will suddenly take off? Difficult one I know as everyone is different, I suppose I have answered my own question there!

More worrying for me, I have never had a problem with blood pressure, but it was high at 150 over 100. I asked this to be checked as I had tried a friend’s electronic machine over Christmas which showed high, I reckoned the machine was faulty, but appears not. Need to see the GP to assess more, first available appointment at our surgery is 3 weeks time!

Next haemo appointment is now 5 months time. Woohoo, will be summer then!

14 Replies

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  • Hi andygm,I was diagnosed December 2014 and was devastated,turns out I have had CLL since 2006 and didn't know it,back then my lymphocytes were 7.6 funnily enough 10 years ago yesterday,my last blood tests three months ago were WBC 16,Lymphocytes 7.1 so have blood tests six monthly,my consultant is of the opinion that I have stage A non-progressive CLLas evidenced by the fact there has been no changein the lymphocyte count in a 10 year period,so everything is crossed that he is correct,I am very lucky but I am aware that things could change.Have you been offered the flu jab?I also had a booster of Pneumovax and Hib.I do have recurrent sore throats and do get tired,I try to walk every day I play bowls 2/3 times a week and try to keep healthy as possible.I am wishing you a very long watch and wait and a happy and healthy new year,by the way I don't think you should be too blasé,take care [Maggie]Sunflower.

  • I think I understand where you're coming from Andy because it appears to be less than a year since your diagnosis and with no discernible symptoms, you must wonder what all the fuss is about. You may indeed be one of the lucky ones who meanders along very slowly with an indolent presentation for an exceptionally long time. And I sincerely hope that's the case. I think I convinced myself for the first 2.5 years that my path would be like that but now I'm not so sure.

    Nobody can predict as you say so we can only literally 'watch, wait and hope'. I'd caution against too much complacency though because the levels we see in the lab tests only represent a percentage detected in our peripheral blood. The errant lymphocytes have also taken residence in our organs and bone marrow even if it isn't immediately obvious. However, my advice would be to embrace and enjoy this period and hopefully it will continue. You may never require treatment but unfortunately nobody can predict with any certainty.

    I hope you can get your b/p lowered and I see from your previous posts that you've had tests for diabetes because you're slightly overweight. As someone who has been diagnosed with diabetes post CLL dx, I'd urge you to make glucose and weight control your goal because if you ever require treatment, CLL and diabetes make bad bedfellows. I'm sorry if that sounds a bit dreary but it's meant with the very best intentions.

    But for now it's looking good and yes, roll on some brighter weather. I think I starting to rust!

    Newdawn

  • Hi Andygym,

    Don't let your guard down but remain positive and learn. Practice gratitude on your journey as you will likely be living with CLL for the rest of your life whether it is indolent or aggressive.

    Although getting a FISH test (Fluorescence In Situ Hybridization) is not required before actually needing treatment because the results can evolve or change over time, you might consider, if available, getting it done along with a IGHV mutation status test, which will not change. These two tests will help to give you a better handle on how your disease may progress if you are not one of the discordant minority like me. As you speculate, indolent CLL can and has taken off for some patients and that scenario is unpredictable.

    Try and make having CLL your teacher and gain a wisdom on life that you would not have the opportunity to experience otherwise.

    WWW

  • That's a good reply,I couldent have put it better mine is indolent but I wont be taking it for granted one thing it has taught me is to count my blessings and as some lovely person on here quoted me "enjoy the present because its a gift."

  • Agree with all that's been said. Also, whether our CLL is in the early or later stages, I think it's good to share. Although my future is uncertain with regard to time span between here and treatment, I feel that the knowledge I've gained at least prepares me for what may or may not be ahead. Also, although some of us are in the early stages, posting on here means that others who are recently diagnosed will not be afraid to join. Peggy

  • I know how you feel to some extent, because you may have seen from my reply to Terry yesterday my count is rising slowly, but in all other respects I'm fine, so in truth I'm loath to admit I have anything wrong with me. I'm not though blasé enough to think it won't become a problem & I'm determined to do everything I can to keep the diseases rate of progress down as low as possible & one of things I'm trying to steer clear of is a serious case of flu or shingles, which I'm given to understand could kick start the condition from it's present state to something more aggressive.

    One of the things my specialist said very early on was if I felt I needed anything from my GP I should go & bang on their reception desk & stress as someone with CLL I should be seen as any urgent patient. I think I would do that with your blood pressure, because whilst it might not be an issue, whatever's causing it might affect our CLL & the sooner you get a handle on it the sooner you can deal with it.

  • Flu can certainly lead to secondary infections like pneumonia, but transformations to aggressive CLL is genetically driven and there is nothing you can do to change that unfortunately. Since I'm a Richter's patient, and a shingles patient no point in worrying about it... worrying will effect you immune system negatively.

    Be certain all you vaccinations are up to date and discusses the new recommendations with your GP by the CDC on the use of two different pneumonia vaccines in leukemia and lymphoma patients...

    Don't get drawn into having a shingles vaccine by a well meaning but CLL ignorant GP... CLL patients should not have live vaccines... Zostavax is a live vaccine...

    ~chris

  • Thanks, I discussed the pneumonia vaccine with my specialist recently & he advised me not to have it (actually he told me not to have it), because of the possibility it might be a live vaccine.

  • I think you mean the shingles vaccine..it is a live atenuated vaccine called Zostervax.

    Pneumonia vaccines are not alive nor is the flu shot, but the flu nasal spray used on children is a live vaccine... so some caution is advised being around children who recently has the flu spray...

    ~chris

  • Well I specifically asked about the pneumonia vaccine & shingles wasn't mentioned & he told me not to have it, because some of the options could be live. I've had the flu jab with no adverse effects & I was interested in the pneumonia one because of what I've read on here & because a friend of mine recently had a very bad attack of it, but his reply was a definite NO.

  • Your pneumonia vaccinations may be up to date, which is great, but here are the new recommendations from the CDC, perhaps give the links to your doctor...

    healthunlocked.com/cllsuppo...

    Here is a chart my friend Len Keck posted some months back... we are considered weakened immune systems... so just follow it across...

    cdc.gov/vaccines/schedules/...

    Here is a .pdf version you can print for your doctor...

    see page 2

    cdc.gov/vaccines/schedules/...

  • OK thanks.

  • Congrats on your numbers. I'm sure in the world of CLL there has to be some folks that take it in their stride and do really well just like you. I remember reading that some patients never need treatment ever. You may be one of the lucky ones. I hope research is done on the group that never needs treatment to identify why this occurs. Have you ever had genetic testing done?

    As for your blood pressure be sure to take it when you are not under stress or in a doctors office. For example when you are around a free BP machine in a drug store go ahead and see how your numbers come up. Readings can be all over the place for lot's of reasons. My doctor insisted that I monitor at home for the best idea of my actual blood pressure.

    Kathy

  • Thanks for all your replies. This is such a good place to be as everyone has some advice or experiences to pass on. It certainly was a comfort when I was first diagnosed in June last year. Just to answer some of the questions. Yes I was offered the flu jab and had it. I have never had blood pressure issues, even after surgery (I have had 3 spine operations over the last 20 years and a kidney stone removal). The check for diabetes was done at the over 50 check. Cholesterol was good, no other issues, liver and kidney function good as it was last week. I understand the issue of ‘white coat syndrome’ with regards to BP checks and has not normally presented a problem for me, the fact that I noticed it in a relaxed atmosphere at a friends on his machine made me think to have it checked properly. I’m thinking it may be down to my weight gain and lack of exercise recently. I used to be pretty fit and lean but I am one of those people who once they stop exercising the weight goes on, along with too much going in one’s mouth! I intend to get back in the gym soon. My consultant did ask for a FISH test on my results the one before last but for some reason they weren’t done by Kings in London, she has asked for them again. They did say that the CD38 marker was a good prognosis. I understand some of your comments about life and treating it well and ‘learning’ from it. I have learnt a lot from this site, but my attitude to it is not going to change. The very early days was a shock, as we all know that feeling, I did get my head around it after a few months and accepted the condition I have got. My outlook on life has changed I will say, my thoughts are not to dither about things and do what I want, within reason, don’t put off things and don’t take work so seriously, ie, if I don’t manage to get something done by the end of the day, the world is not going to end, I’m not in such an important position. I think that I am comfortable with the fact it is something that might kill me, hopefully not, but, it has made me not afraid of death, I have had a good life, ups and downs as most people have, but I would not complain if I had to go tomorrow. Obviously it is my family and friends it is going to affect so you could call me selfish in that respect. Don’t get me wrong, I still am going to enjoy life and doing what I love to do and hope to do so for many years yet, but I am accepting of the fact that life will end one day whatever. I am still afraid of flying though! I’m sure that there will be some food for thought back from you all which makes this such a great site. Rambled on far too much. Peace and Love.

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