I recently got diagnosed with ALL in December 2023.
I was admitted to hospital the day after my diagnosis and I started treatment days after my diagnosis.
I have finished phase 1 of in induction treatment and Bone marrow is in morphological and flow based remission apparently. Still not entirely sure what that means if I’m honest!
I’m now halfway through phase 2 of my treatment and still in hospital.
I have had so many issues with my Liver and my first hospital stay ended up being 10 weeks I’m hoping this time it isn’t as bad although my liver is ‘grumbling’ already as the doctor put it but it’s not alarmingly bad so far.
I have no real clue what happens next or what to expect in terms of my ongoing treatment or what my life will look like for the foreseeable.
I am 37 and was pretty fit and healthy before all of this and feel like Iv lost everything right now if I’m honest. I keep hoping to wake up from the nightmare that has become my life of doctors, medicines and constant blood tests as it still doesn’t feel real.
I don’t seem to be able to find out much about younger adults with ALL and peoples experiences and how much of their life they got back and any long term impacts it’s had for them.
Dear @Tara
Thank you for posting and welcome to the forum. I do hope you find this a supportive space. I can understand that a diagnosis of ALL (Acute Lymphoblastic Leukaemia) must be such a shock both physically and mentally, in particular when the intensive phases require you to be in hospital for long periods.
May I ask whether you have a Clinical Nurse Specialist that is supporting you through your treatment? I would recommend speaking to them around your treatment plan and the assessments. They can give you a timetable which shows the treatments proposed for UKALL 14 regimen.
It is great to hear you are in a morphological remission after course 1, this means that when the Doctors look at your bone marrow sample under the microscope that there is no evidence of ALL. It is an important indicator regarding the success of the treatment. They will be doing other detailed testing to see the depth of remission (MRD - minimal residual disease monitoring) as well to assess response.
The initial phases of treatment are intensive, but depending on response and tolerance of all the medications there can be parts of this treatment that can be outpatient based in future cycles. As I mentioned, discussing this with you CNS would be best.
Here is our information on Acute lymphoblastic leukaemia (ALL) treatment types and side effects | Blood Cancer UK
From a support point of view we would be very happy to talk to you over the phone Blood cancer information and support by phone and email | Blood Cancer UK and also about - Cancer support charity for young people - Shine (shinecancersupport.org) is a great space for younger patients.
I do hope this helps and please do get in touch if you should want to talk.
Take care
Gemma
Hi @Tara welcome and thanks for posting.
I certainly cannot better @GemmaBloodCancerUK response.
I had not had a day off sick for nearly 30 yrs before I was diagnosed with another blood cancer.
I was diagnosed 20 yrs ago, at 53yrs old, and I am actually fitter now than I have ever been, others experiences are different.
I think what I am trying to say is that we are all completely different.
So much has happened to you, so quickly, medically and emotionally perhaps just give yourself time and be very kind to yourself.
I really hope others can share their experiences
Please do keep posting how you are doing
That is good to hear about your recovery Erica, I was diagnosed with Acute myeloid leukaemia (AML) this week and will start treatment in just over a week. I am almost 67 but very fit and healthy otherwise. Thank you for being here.