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 PablitoDeRoma602447 and welcome to this corner of community but sorry to see you joining us.
I am Mike and I help out around our various Blood Cancer groups.
I don’t have Acute Lymphoblastic Leukaemia (ALL) but I was diagnosed way back in 1999 at 43 with 2 rare types of T-Cell Non Hodgkin’s Lymphomas the first in 1999 and second in late 2013 the second taking me Stage 4a so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well…….. especially as I have had 2 Allograft (donor) Stem Cell Transplants (June 2014 then Oct 2015).
I see you have also put up a post in our dedicated Acute lymphoblastic leukaemia….. and it’s great to see that you have a reply already.
As for Stem Cell Transplant….. I was fortunate in that my brother was a 10/10 match…. it is a long complicated story that you can see using this LINK
Only about 25% of patients will find a matching donor in their families. So they have to depend on finding an unrelated donor and this can be from the UK register but also the world wide register.
In some cases the match does not necessarily have to be perfect as I have talked with many people over the years who have had a 5/10 match and went on to live great lives.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups.
We do also have a dedicated Stem Cell Transplant group where people from all blood cancers can chat and give support around SCT……. although many do move away from the group once they are out the other end of SCT and get in with living their new life.
Always around to chat.
