Hi everyone,
I’m Daniel, 32, and I’ve recently been diagnosed with Philadelphia-positive B-cell Acute Lymphoblastic Leukaemia (Ph+ B-ALL) with some traces of AML.
It’s been a whirlwind, everything happened so quickly that I’m still processing it.
About a month before my diagnosis, I’d been feeling unwell, exhausted, foggy, and unusually weak. Things escalated when I started seeing double vision in the upper-left and right sides of my eyesight, followed by a constant headache. That’s when I called my GP.
I had my phone appointment on a Wednesday, blood tests on Thursday, and by Friday (31st of October) at around 1 a.m., I woke up to multiple missed calls from NHS numbers. My partner woke up too, and I told her, “Something must be wrong with my blood results.” When I finally answered, they told me my white blood cell count was 119,000 and that I needed to get to hospital immediately.
I was admitted to Queen Elizabeth Hospital, where they initially suspected AML. By Tuesday, the 4th of October, tests confirmed it was B-ALL, and by Wednesday night, I was transferred to King’s College Hospital in London for specialist care.
I’ve always kept track of my fitness with a Garmin watch, monitoring my heart rate variability (HRV), stress, and sleep. I’d stopped exercising after my summer holiday, but in late September, I noticed my HRV dropping below my usual range (40–63), and I began feeling depressed and fatigued during simple activities.
At a local parkrun, where I usually do 5K in 27 minutes even without training. I suddenly struggled, finishing in 34 minutes and feeling utterly drained. I knew something wasn’t right.
Still, I pushed through. My partner and I went to Majorca in October for her marathon. We stayed outside Palma and cycled daily, 13.5 km each way. Even with an e-bike from day 2 at full assistance , my heart rate hit 140 bpm going on flat road. During a casual 5K shakeout run before the marathon , I could only manage 3 km slowly and walked the rest. That was a clear red flag (I was still using the normal bike on this day, even the cycle back to the hotel felt horrendous).
After returning to London, I focused on resting, eating well and work the minimum, but by Sunday the 26th, my HRV had dropped to 23, and I could barely manage stairs and walks without feeling winded. That Monday, I booked another GP appointment, and that’s when the chain of events started that led to my diagnosis.
Today marks my second day of Imatinib, and I’ll be starting Phase 1 of chemotherapy on Monday.
The team explained that while there are some AML features, the treatment will follow the Philadelphia-positive ALL protocol, as that’s the dominant diagnosis.
I’d be lying if I said I’m not scared, especially about the possibility of needing a stem cell transplant. I don’t have full siblings (only two half-siblings from different fathers), and being South American, I know donor matches can be harder to find here in the UK, where most registry donors are of European descent. Still, I’m holding on to hope, that I’ll respond well to treatment and that a match, if needed, can be found.
I joined this forum to connect with people who understand what it’s like to walk this road, to share experiences, find support, and hopefully, give some back along the way.
If you’ve been through Ph+ ALL or a stem cell transplant, I’d really appreciate hearing your experiences, advice, and how you managed both the physical and emotional side of it.
Thank you for taking the time to read my story.
Wishing strength and healing to everyone here
Daniel
Hi Daniel,
i’m sorry to hear your news.
I was diagnosed with Philadelphia Acute Lymphoblastic Leukaemia in 2020, aged 50, at the start of covid after blood tests, because my legs had swollen and felt really tight. . I was admitted straight to kings college hospital within 3 days of the blood results being picked up by a now retired consultant in Canterbury hospital, kent, i had a bone marrow transplant the following year with a 100% match from a german donor. I was then told i was in complete remission. I spent most of 2 years in and out of kings. I found you have to stay positive and see how you feel each day. If i was tired, i slept. If i felt more energetic i would exercise and dance in my hospital room, to keep myself fit. (It was during covid so i wasnt allowed to see anyone or wasnt allowed out incase of infection). Each day of treatment that i had, for me, was one step closer to being fully treated, so it was a good thing. I needed to have whatever treatment was given, so fully put my trust in kings and they were brilliant. I owe them my life.
4 years post transplant and i’m still under them and will be for life. My checks are now once a year but i can always contact Haemotology at kings if i need to.
My family and friends tell me that me staying positive definitely got me through this and they were too.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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