My mum has just been diagnosed with CLL. Her lymphocyte count is currently at 5.7 and she is otherwise well. We are waiting to see a Haematologist to determine what to do next.
I'm very aware that this is about my mum but I'm really struggling. I'm really struggling with the uncertainty of what is going to happen and I'm terrified at the thought of losing her. From my reading, it doesn't seem that we can predict the course of CLL very well. Is a low lymphocyte count at diagnosis a good thing?
Any advice would be greatly received. Thank you
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Elsie89
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Hi Elsie and welcome to our community. We equally welcome carers.
With a lymphocyte count of 5.7, your mum is barely into the CLL classification range of more than a count of 5 monoclonal B-lymphocytes. Her count of 5.7 also includes healthy B and T lymphocytes. So on that basis, your mum is probably in stage 0 or 1, but other factors are involved in staging, such as whether other blood counts are low (platelets, red blood cells and neutrophils), whether she has swollen lymph nodes and whether her spleen or liver are enlarged.
We are currently approach the point where it is possible to keep CLL under control with maintenance drugs, or provide long, repeatable remissions with non-chemo short term treatments. For some perspective, I was diagnosed at stage 4 nearly 11 years ago and have just started my first treatment. Your mum may never get to the point of needing treatment, but if she does, this is a very exciting time for treatment choices that can be matched with her specific requirements.
There is much your mum can do to live well with CLL, collected in our Pinned Posts section, starting with the 30 tips post. Perhaps your mum will join us directly? If not, you have still found a supportive community for you!
I was very nervous when I was diagnosed. But in most cases CLL is a very very very slow condition. And if your mom needs treatment tomorrow or 20 years from now , today there are very effective treatments that are pills that will put your mom in a very long remission she may never need treatment. That being said try and stay calm you’ll learn a lot from the very informed people on this site.
It’s a great site to come learn about CLL. We all are fortunate to have this site to come ask questions and to just say hello to the fantastic members.
Has your mom seen the site yet? What county are you from as there are many from around the world here. I was diagnosed 2 years ago this coming March and was so afraid and uncertain with what life had in store for me. I have a young daughter and I was afraid I wasn’t going to be here to see her graduate from school or get married. It tore me up for about a year. Just typing this now brings tears to my eyes. But the positive is I learned that this condition is a chronic condition like high blood pressure is. The word cancer is what scares us all. But I look at it as what it is a chronic condition. My specialist and people on this site have told me this. 1/3 of people need treatment at diagnosis 1/3 need treatment maybe a decade or more and 1/3 never need treatment.
Hi John. We're in the UK. I don't think my mum is ready to look at sites just yet- but I will direct her to here when she is. I don't think she is going to need treatment right now but living with te uncertainty of not knowing what is going to happen is very difficult. But I suppose that is life!
Good morning Elsie, I was diagnosed with Cll on my 70th birthday in February , although I think it had been hanging around for quite a whike before that. I started taking Ibrutinib because I was unable to have chemo, 6 months ago. My friends say I now look better than they have seen me for several years, and I certainly feel better. I have had one or two side effects but nothing unmanageble, in fact one side effect has been very welcome as I now have gently curling hair. I wish you and your Mum well. Past experience as both a cancer patient and cancer carer leads me to think it is sometimes harder as the carer. As Neil says these are exciting times for we patients as there are many new drugs in the pipeline.x
Don't panic Elsie like l did 5 year's ago this month l was diagnosed with a ALC of 7.5 but turns out l had it for years before it's now 13.5 so chronic is the word.Picking up infection and fatigue is the worst so be mindful of hand washing etc.this is a fab place you are amongst friends. Maggie x
First of all welcome, you are in the right place for support! My mum also has CLL and I remember, like you, being utterly terrified when she was first diagnosed.
My best advice to you is to arm yourself with knowledge - I have found the more I have researched and learned about the condition, the less frightening it seems. If your mum is otherwise well, take comfort in that. The CLL has been picked up early and will be closely monitored.
There are so many brilliant treatment options available for if/when the time comes. But for now, try and enjoy the present moment and continue to do things you would always do with your Mum. It is scary when first diagnosed for all involved, but please remain optimistic and positive. She may not need treatment for a very long time (if at all). I am sure when you meet with a Haematologist you will get lots of fab advice.
Oh, and one last thing, this condition doesn't now define your mum. She is who she always has been, and despite what is now a new journey to embark on, remember to talk about other things and have a good old laugh.
It's invaluable to hear it from your perspective as we both have loved ones with this condition. I keep jumping to worst case scenario and imaging losing her, which is just unbearable. I hope when we see a haematologist, things will become a little clearer and a little less scary
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