New and would love advice

Good morning! I was diagnosed with CLL 14 months ago. I am a 52 yr old woman and was seemingly healthy except I was beyond exhausted all of the time, thus fueling myself with a ton of sugar, had 3 Mohs surgeries within 4 months, serious hot flashes and A horrible skin rash. My dermatologist thought I might have diabetes but instead was diagnosed with CLL. My numbers were just out of the normal range and I went to Sloan in NYC. My oncologist said non of my symptoms were from CLL! I started to eat clean and take lots of vitamins and started to feel better but now my lymphocytes are high, my fatigue is back and the swearts are horrendous. Yes, they could be from menopause but I'm wondering if my high lymphocyte number could be the cause for any of it? My dr has an amazing reputation but is not very approachable. Wondering if any of you have had similar symptoms and if you found anything helped? Many thanks for all the amazing sharing that's done here!!

6 Replies

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  • Well the question I suppose is if you are a candidate for treatment now. That would depend on your hemoglobin and platelet counts lymphocyte rate of increase etc. As the symptoms are quite possibly related to CLL then treating the disease will hopefully help. I would ask your doc when he foresees treatment. As to sweats fatigue...good sleep, diet, exercise are certainly a positive.

  • Hi Jeanne

    I am a 61 year old male who also goes to Sloan with a 2017 diagnoses I have blood work 4 times a year for a different reason and now that i know a little more about CLL i can review the old work and see how the CLL progressed and what symptoms i had as it did

    Before the CLL my normal WBC was always around 4 and ALC 1.4

    In my case when the WBC and ALC stayed just above the high lever of normal i really had very little symptoms

    In 2017 for what ever reason it did a really rapid rise to WBC 21 and ALC 16 and it really affected me at those levels but it turns out i was also pretty sick from a virus followed by a bad cold

    Now that i am stable and free of illness for almost 8 weeks the WBC is stable at 17 and the ALC is at 14 it still affects me quite a bit but much less and fatigue is still my constant friend

    I get occasional night sweats and i have found that it is generally when i am one step from getting sick but my immunity is able to still fight it off and it generally clears up after the night sweat

    I have also found i need to avoid for example a dish of ice cream at night or any kind of heavy meal because my system really cant handle any bad eating habits anymore and i am almost guaranteed a difficult night sweat if i eat badly

    I do not know enough to play doctor but can say your generally in good hands and if you continue to have issues with the doctor its possible to change BUT not easy and you would have to have a pretty good reason and present it too the hospital possibly through one of the social workers

    I forget If your setup on the MYMSK one of the things i really like is everything that was ever tested is there to review and it is also a good place to ask questions and express concern on how you feel about your treatment

    If you do decide to go elsewhere it also allows you to get all your information to were ever you want it

    Also if you go here there is a list of CLL Doctors and one different one at Sloan NYC on this list and i was going to use her but chose to use the Long Island branch

    cllsociety.org/toolbox/cll-...

  • Hi Jeanne. My goodness, you've taken the words right out of my mouth! I'm also 52 and was diagnosed 4 years ago. Currently on Watch and Wait and overall things fairly stable though at my last check up 10 days ago I was pretty disappointed to find out my lymphocytes had leapt up from 36 to 56. All other blood parameters fine and I'm on iron as my ferritin levels were low when first diagnosed. BUT I am having awful night sweats as well as daytime flushes and am menopausal. Despite my haematologist reassuring me that despite the night sweats and rising lymphocytes, my cll grading remains Binet Stage A, I would love to know how much of the night sweats is due to menopause and how much is CLL progression. Or maybe I wouldn't like to know?! I was going to post asking if there are any other women out there of around my age with the same confusion and any tips. I try to lead as healthy a life as possible. Like you, my main symptom at diagnosis was-and continues to be- overwhelming fatigue. This has been well covered on this forum as most haematologists at best ignore it and at worst draw a blank when it comes to advising re fatigue levels. We are told to work through it.....I have so far not really addressed my CLL in any scientific way, as even 10 days ago my consultant tried to reassure me by telling me to live my life and try "to put it to the back of your mind". Some days its fine, others it's really scary. Re the menopausal element of night sweats, I am keen to avoid HRT as my older sister has hormone receptive breast cancer, diagnosed after she commenced HRT. This could so easily be coincidence and thank God hormone replacement therapy is a choice for all of us, but for me I don't really think it's an option right now. Anyway, I totally understand your feelings and am sorry I can't really offer concrete advice or tips but sometimes it just really good to know you're not alone! Keep in touch! Best wishes. Lucy

  • Thanks for posting.

    I have the same question of how much of the hot flashes/sweats are CLL related and how much due to other issues. I've had hot flashes, and still do, even at 65, so I know they preceded the CLL. That said, I find that I can't tolerate heat at all, now, and I am convinced that is the result of CLL. So it may be both, or that one triggers the other. When asked if I have night sweats, I say no, but I do wake up at times very hot, throwing off covers and letting the fan blow on me. So should I say yes? Sweaty, but not drenching, nor prolonged (a few minutes). It is one of those things that seem very subjective in identifying.

    Fatigue is similar. At what point is it fatigue, and not just age (not your issue) or physical condition? Do we have to reach a point of bone deep exhaustion before saying we have fatigue, or is it sufficient to say it is a lot harder to muster a day's energy for doing normal life things? Again, maybe subjective until it is becoming severe.

    When symptoms are not severe, it seems easier to understand the scientific literature on the disease and treatment that to answer some diagnostic questions with much certainty.

    I do find that using a chill pad on my pillow helps some with the hot flash that I almost inevitably get when first lying down to sleep at night.

  • Watch out for arrogant doctors . I had one who was bad . Best to get a second opinion with a CLL expert. There is also a lot of very good information on the CLL Society Web side .

    No one has to do anything very quickly .

    I am on a clinical trial combining two targeted drugs . Imbruvica plus Venetoclax.

    Be well

  • I have the same thoughts about hot flashes and sweats. I do not have the drenching sweats but also cannot tolerate heat and any activity will cause the sweats even in a cool environment. I find it so confusing and somewhat reassuring I am not the only one with these questions!

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