One Month On

Diagnosed one month ago and sill trying to come to grips with the implications. I'm 58 and on W & W (and worry). Had flow cytometry done which showed cd-38 positive. Also sent for FISH testing with results pending. Last CBC show slighly elevated WBC (13) and ALC 6.2). I know that I am in a much better place at present than many others on this forum so I feel fortunate (and sympathetic to those experiencing bad symptoms).

What drives me crazy is the uncertaintly and not knowing if symptoms I'm experiencing now or later relate to CLL or something else. I recently complained to my hematologist about unusual joint pain which I had pre-diagnosis and has now gotten worse. He stated unequivocally that it's unrelated. I did complain about upper right abdominal discomfort and he sent me for an ultrasound.

I guess some of this anxiety will subside with time, especially if subsequent blood work shows slow or stable WBC and ALC. I have come to the very unscientific conclusion that, in my case, stress played a significant role in either acquiring CLL or in influencing the elevated CBC values. The latter were completely normal until I experienced what was for me unprecedented stressors in a concentrated period of time (death of parent, diagnosis of other parent with stage 4 cancer, major changes at work, etc).

Sorry to babble.

9 Replies

  • Hi Ned I wanted to just let you know that you are not alone in thinking like this.

    Everyday I wonder if the pains I'm feeling are CLL related.

    Like you my haematologist says no but it can't be a coincidence that a lot of us suffer with joint pain.

    Mine is mainly in my shoulders and neck but all joints are affected to a degree.

    It feels like I am ceasing up! I also sweat profusely during the day and night but am told it's only the night sweats that could be CLL related.

    I have found though that the more I exercise the better the stiffness feels so I try to stay as active as I can.

    I am one year into watch and wait and the stress definitely has decreased so hopefully you will be able to relax a little soon.

    Take care.

  • Thanks!

  • Hi Ned and certainly no babble as far as I can see just relevant observations that many of us can relate to.

    I sometimes wonder what comes first, the joint pain or the CLL because I've become convinced in my case that there's a link between systemic inflammation and CLL. Stress impacts on us physically and many say it increases their WBC. Thankfully yours are still at a very low level and long may they stay that way but I agree the uncertainty is a strain. It's important to realise worry won't help. It's like a rocking chair...keeps us occupied but doesn't get us anywhere!

    Interestingly I also had bad abdominal pain at diagnosis which was said to be unrelated. Any possibility that it's gall bladder related with being on the right side. Spleen problems are more likely found on the left.

    You've had a lot to contend with and I'm sorry for the loss of your parent. It's early days for you but low figures too. Hope your FISH reveals a more positive chromosomal profile but whatever it comes up with, you can cope and we are here to help you do so.

    With supportive best wishes,


  • Thanks very much for the support.

  • Give yourself a break. It hits you when you are diagnosed and it takes a while to chill as the young people would say. You will come back to center. Being part of this group will help. It is nice to have a place to turn. I am way better than when I was diagnosed seven months ago and with all I have learned in the past six months and knowing that it can be treated I tend to treat it like diabetes as a opposed to a final diagnosis. You will center give yourself time to adjust.

  • I agree with all the previous comments, Ned. My husband was diagnosed 7 months ago and we are back in the land of the living! It takes time, there are always those moments when we can't believe he has CLL (he looks and acts just like he always did, how can he have it?) but life goes on and we don't want to miss any of it. You'll find yourself returning to your old/new self soon enough.

    Feel free to "babble" here at any time. We've all been there!

  • Hi Ned1, I like most others who have replied experienced all the same symptoms prior to and after diagnosis and I'm convinced there must be a link. I was diagnosed in March so still a newcomer but still with the joint pains and other worries. I have also found that stress is a huge factor and I have worked hard on reducing that work wise since diagnosis which together with exercise and healthy eating seems to have helped but also say it's still early days. Difficult to do I know but try and take the advice of those further down the line than us and try to stay positive and enjoy life to the full. I'm also convinced a lottery win might also assist with this outlook. Lol. Have fun and never be worried about having a good moan or look for support on this site.


  • Hello Ned, really sorry to hear about your CLL diagnosis. It's a difficult thing to deal with.

    I also found it , oh just terrible when I was diagnosed with CLL in 2003 . I was 42. The diagnosis of Leukaemia was something that happened to other people - not to me!

    Yet, 13 years later still here , still w & w .

    Fatigue and joint pain are also a problem for me, sometimes more than others . I feel much better when sleeping well, eating well and doing regular exercise. It really, really makes a difference. I love doing Zumba!! I've also found Headspace the meditation app helpful too.

    My WBC is about 22. I have a small swollen gland in my neck which I noticed first about six years ago. So, I'll count myself lucky and touch wood.

    I have spent a lot of time worrying though, especially initially . I was fortunate enough to find a place on a Penny Brohn course funded by the NHS in Yorkshire (which isn't where I live but I muscled my way in , as it wasn't full) )

    Living Well with the Impact of Cancer

    The course was more than a bit of a turning point for me.

    Wishing you the very best .

  • Thanks, Elaine. Like you, I find regular exercise makes a big difference.

    All the best..

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