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Anyone else experiencing these symptoms with CLL diagnosis....?
I was diagnosed with CLL last summer however upon further review of my medical records and CBC results found that my CLL likely goes back 7 years or more and was not put together. For the last three years I have been experiencing severe and painful flares of edema in my legs, feet, arms and hands. I have progressively painful daily joint pain and pain all through my legs. I have a negative rumeatoid arthritis test as well. I have lost a significant amount of my hair (about 2/3's - in the last couple of years) and continue to lose significant amounts. I have easy bruising and am constantly exhausted - I am not young but @ 38 I should have more energy than barley getting through a work day. I have spoken with my Drs about these symptoms and am in the "watch and wait" faze of the disease. My Dr has no explanation of most of my symptoms other than regular CLL and then the others he's stumped on - also overworked in my experience. So I thought I would reach out to other patients and specialist to see if I'm alone in my struggle. Thank you for any help...
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Have you looked it up in the search bar above? I needed to look up CLL on google. There are so many that probably have or had it on this site. Check with CLL or the whole name. I had had MDS, so at this time no leukemia. I know others will post. You are not alone if you stay on this site.
I have stage 1 CLL (diagnosed almost 3 years ago) and am symptom free at this point.
I'm glad. From what I have read on here quite a few people are symptom free for some time after diagnosis. I unfortunately think that I am in a different category - they found mine after years of symptoms
Yes I have, I've found some people that have some of my symptoms but are in late stages of CLL. I think that I may need to seek out a new car team as I still haven't been given a stage of my CLL or much information from my oncologist most has come from my GP.
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2 ReactionsHave you had a FISH test and a chromosone test? There was a third blood test that I had but my mind is blank on it now. Those are what was used to determine the type and grade of mine. It is a deletion on chromosone 13 with a good prognosis.
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1 ReactionThe third blood test was flow cytometry.
I like that you may seek a new care team. Make a list of your questions if you have not. Are you at a research or notable hospital? It is important to get that information whether it is an oncologist.
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1 ReactionDefinitely get a good hematologist! My PCP referred me after an annual check up showed an increase in WBC for two years. I was diagnosed with CLL in 1996. In the years since my WBC has gotten up to the 80s three times and an oral chemo was prescribed. It is important to watch the WBC often, because in my case it went lower very quickly. Yes, there are issues, but remember it is chronic and with proper monitoring it should not affect your life adversely! Best wishes!
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1 ReactionYeah I am learning that my Drs are overworked and have too many patients. It was me who had to point out that my CBC blood tests going back over 7 years showed the markers (High Lymphocytes and Low Necrophils) that inevitably made them run flow cemetery last summer. Yet still no answers as to why I am in worsening pain and for most of my symptoms.
Not that I have been told the more I talk to people the worse I feel about my care. I have seen my Oncologist once since my diagnosis in June 2024 and if I wasn't pestering my GP about wanting to understand why I have the symptoms I have I probably wouldn't be getting any further look into things at all. I went almost 3 years with little to no answers then they found CLL but said people can go decades without symptoms - so still no answers really.