I was diagnosed with CLL in February 2018, following a period of feeling very tired, low Hb, shortness of breath and night sweats. After numerous blood tests, CT scan, gastroscopy and colonoscopy (to rule out any bleeding) I was given my diagnosis and told that I needed chemo treatment, due to symptoms, extensive swollen lymph nodes throughout my chest and abdomen (only 1 lump in my neck) and a low Hb.
Started FCR chemo in April 2018 for 6 months. Had quite a rough time with a number of hospital admissions, but post chemo scan and bone marrow biopsy shows a good response to the chemo.
Returned to work in the October - struggled with high levels of fatigue and 'chemo brain', but found that the work provided good 'distraction therapy'. So good to think of something different from appointments and how you feel.
Support from work colleagues has been invaluable, especially as I live alone with little support from elsewhere.
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Kingfisher20
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Hello Kingfisher and welcome! Glad to hear that your scan and BMB are looking positive to treatment. This is a great place for questions, support and just to vent if need be...good and bad. Continued success in your journey!
Hi Kingfisher i hope you will find some of the support you need here. Bring chronically ill can be a very lonely place , even if you don’t live alone but more so if you feel alone . Distraction therapy works for me too ...glad you are well enough to be at work and that you have had a good response to chemo . Kind regards . Emer
Thank you Emer for your reply. I do find 'distraction therapy ' in any shape or form helps! Going back to work has certainly helped, although I do get frustrated at times when the 'chemo brain' kicks in and I can't recall things quickly.
Coming to terms with the CLL takes a while, especially the fact that it is incurable and somewhat unpredictable. I found it quite hard when I finished my chemo, as most people think that you're now cured and back to normal. In fact post chemo I felt worse than before I started. Your body takes quite a hammering and I’m finding the fatigue element is slow to improve. But I’m now trying to make the best of each day, doing what I can when I can.
Sounds like you have the SLL variation on CLL (like me). When I was diagnosed I went into almost immediate treatment and since then I've had one relapse followed by second line treatment and back into remission. That's taken 25 years so that should give you some encouragement for the future.
Thank you for your encouragement Jacques. It’s taking a while to come to terms with the CLL, especially as I'm now on 'Watch and Wait' treatment. While I was having chemo you are very focused on each cycle and live quite a rigid/predictable routine, whereas now there’s no knowing the time scale of future events. So just trying to make the most of each day as it comes.
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