I'm so new to this that I'm still in the diagnosis phase. Went in for regular blood work today and came back with lymphocytes at 7.7K, low monos, which triggered a slid, which shows atypical lymphocytes. Language below:
Lymphocytosis with atypical lymphocytes and smudge cells. Clinical correlation with flow cytometric study is recommended to rule out lymphoproliferative disorder such as CLL/SLL.
I lost my daughter to leiomyosarcoma Christmas of 21 and I'm the caretaker for my husband who has early dementia at 61. The best thing I can do is get some reality on this disease and I'm hoping people can point me in the right direction regarding normal next steps and pitfalls. My PCP is great, but this will be beyond him and so I'll need to start fresh.
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Horsechestnut
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Hi Horsechestnut - great name, I'm surprised it hadn't been taken.
You might have early stage CLL/SLL; the flow cytometry test will either rule it out or confirm it. If you do have CLL/SLL, you can be reassured that it is fast becoming a manageable chronic illness like diabetes and you have found a supportive community, where you'll read about the latest advances in treatments. Some of us never need treatment and some of us have had just one treatment that has lasted over 20 years. Most of us are somewhere in between.
Hi, and my sympathies. You have had a hard time of it. You say CLL or SLL has yet to be ruled out, so there's some hope there. Smudge cells are, I'm afraid, indicative of CLL, though not exclusively. If it's CLL, don't lose hope or think you're going to die. Some never become ill from it, some do get ill, but after a number of years, and continue to live happy lives with medication, and some sicken quickly, but still benefit from treatment. If it is CLL the diagnosis will be a shock. You'll be fearful and baffled by a disease that affects every individual differently. Reach out to the community here. We've all gone through the process, and folks here will be able to give you all the info you need. And once the shock is over, information is the best resource you can have to deal with your disease.
For myself, I have CLL, but it has not made me ill yet, and has not been treated. I'm on Watch & Wait, which means I'm periodically monitored for serious symptoms. That may go on for years and years - in my case, 5 so far. If your diagnosis is confirmed, there's a good chance you'll be on Watch & Wait.
I'm so sorry for your daughter. You're obviously worrying about your husband. I'm carer for my own 73-year old spouse (I'm 58, bit of an age difference). He has heart failure and a back injury. I often wonder what will happen if I can't care for him anymore. But I take one day at a time. If the worst happens, the path will become clear, and we'll have the strength to cope.
You're in my prayers, and do keep reaching out to this beautiful community. Cheers!
Thank you so much. I'm hoping it's something less, like a weird infection from a dog scratch on my face, but it's probably cll. Realistically. I'll let you all know what I find as the more definitive tests come in.
My dad was exposed to Agent Orange in Vietnam, and I always thought my daughter's genetic based cancers (germ cell mutations) were likely connected. This turn of events only underscores that possibility. <3
I was also diagnosed by my GP. My white blood cell count was high at my annual appointment for a couple of years with no obvious cause. She ordered a smear test and diagnosed me with CLL on my wedding anniversary. I was shocked and crying inside but tried to carry on as if all was OK.
After five years on Watch and Wait, I started treatment in Nov 2022 on a trial for a new drug, Pitrobrutinib. I’ve had very few side effects (all dermatological) and feel much better.
There was never pain associated with my CLL. Towards the end of my W&W, I would not have been able to care for anyone else very gracefully due to fatigue. At some point, for a period defined in months, you may need some help to care for your husband.
I am very sorry about your daughter’s passing from cancer.
Hello Horsechestnut, welcome to our community, it's one none of us really wanted to join but here we are and it is a good place to be. Personally I have CLL, diagnosed at 68 in 2018 and thankfully have kept very well. I had three years watch and wait before starting treatment with Acalabrutinib in 2021. I have responded well, I have had few if any side effects and can report my bloods back in normal ranges.
As Aussie Neil says, we are all at different stages but we are encouraged by new research and progress in treatment. Once over the shock of initial diagnosis, you will settle down and hopefully you will live a long healthy life.
I pray everything goes well for you, I send my condolences on the loss of your daughter and pray that your husband's condition is manageable.
God bless and know that you are amongst friends here.
My husband is 73 this year. He is still on WW and his numbers haven't changed. He still plays his guitar in a band and is an active member of his Men in Sheds group. At the beginning he was really shaken as his father had died of leukemia aged 73. He really enjoys his life and and committed to living it to the full, whilst still being mindful of covid etc. To him it was a wake up call.
Just over three years. A complete shock as there were no symptoms. It was found during a routine cholesterol blood test. He now has yearly tests and since covid annual telephone consultations.
Hello, Horsechestnut. Welcome 😊 to our community. I'm so glad you found us! I have been in watch and wait for over a year and have found the people on this site to be outstanding in their knowledge, sharing, and caring. Truly, a huge help in all aspects. Don't be afraid to share or ask anything here. Just be sure to "lock" your posts to " community only" as not to share your personal information with the world internet. You will. In return, receive more detailed responses to your questions. Remember AussieNeil's response - CLL is becoming a managed disease, like diabetes 😊 God bless you, your daughter's soul, and the rest of your family. We are here for you. ❤️
Welcome to a wonderfully supportive community! Also check out cllsociety.org and seek out the tabs for Newly Diagnosed (if you do indeed receive a CLL/SLL diagnosis). Your accurate and current education can start there and there are listings of CLL Specialists to help you put together your care team (mostly US based but lots of good general education on this disease as well). All the best to you and yours - you are bearing up under some of life's greatest challenges. Onward!
Welcome, and sorry life has hit you with more heartache than anyone should have to bear. If it turns out it is CLL, stay well away from google - the treatment landscape is improving rapidly (at a pace that can only be called dramatic), and almost everything you find on google is not applicable.
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