I’m a standard risk B-ALL patient, and after 1 year of treatment, i did a bone marrow test and the result came up with <0.01%.
My confusion is, Is this the lowest and the best range for me? Or it might’ve gone to proper 0.0%
Here’s my test report!
https://drive.google.com/file/d/1vuj_RN_5mgXw6hw--xv5jJwES9h9MbAb/view?usp=sharing
Hi @tahmidmahi, that is far too technical for me and perhaps one for your medical team as they will know your full medical history and have the expertise to answer you questions and thoughts.
How are you feeling about having been in lockdown for so long?
My diagnosis was also ALL B+ Philladelphia negative.
On diagnosis my blast count was 97%.
On relapse after 4 months of chemo on UKALL14 my count was over 80%.
An MRD of less than 0.01% is pretty impressive. If I had a bone marrow biopsy today, all these years later I would suggest my MRD would be higher than that.
HOWEVER, what you don’t say is if you have had a stem cell transplant, and if so whether the graft was successful?
I put up with chronic GVHD, safe in the knowledge that it is this troublesome graft that is constantly on the lookout to neutralise my old malignant B cells as and when they appear.
Having said all of that I confess researching my ALL hospital notes has triggered a panic attack. Not something I am prone to. Deep breaths needed.
Hi @Robson, thanks for sharing your diagnosis and treatment.
You say that you have chronic GVHD, how does that manifest itself and is there anything that can be done to alleviate your GVHD?
Also you say that researching your ALL hospital notes has triggered a panic attack do you mind telling us why?
My best result was ‘undetectable’. My husband called me Mrs Undetectable for a couple of days.
@Robson thank you so much for your response to @tahmidmahi. It sounds as though you’ve been through a huge amount - it’s so understandable that looking at your hospital notes made you feel so anxious. Did your feelings of anxiety last very long? How are you feeling now? We’ve got some information around mindfulness and breathing exercises if it’s ever helpful?
Hi @tahmidmahi - it’s so understandable you have questions around this. Have you got in touch with your consultant or your clinical nurse specialist, to get clarity round this and ask any questions you have? I’d really encourage you to get in touch with them by phone or email, if you have any questions at all as it’s really important that you’re as informed as you feel comfortable, around your individual circumstances.
Please feel free to call us on 0808 2080 888 if there’s anything we can do to support you or anything you want to talk through at any point.
It is my opinion that people who have faced a life threatening condition of cancer for a long period of time can suffer from PTSD.
In the case of Blood Cancer this threat to life can be severe over many months or even years.
In my case the threat lifted to a degree post transplant, and the passage of time does help with the PTSD symptoms. However, reminders of the rocky road I have travelled, such as reading my old hospital letters and seeing the awful blood test results can bring on panic.
Fortunately time does heal plus also whatever it is in our physcology that allows (for example) a mother to dull the memory of the agony of childbirth.
Hi @Robson, yes, I think the shock of a blood cancer diagnosis can cause a form of PTSD (Post Traumatic Stress Disorder).
What I would say is that I was diagnosed 17 yrs ago and I can still remember that day as if it were yesterday and replay it like a film with me looking down on the scene and words like ‘chronic’ and ‘Leukaemia’ written in big letters with zig zags around them. Those feelings of fear, shock and anxiety come whizzing back.
For the next few weeks I felt as if I was in this weird bubble with the world going on around me.
I know I do not ‘fight’ or ‘flight’, I just freeze.
I now have so much more self awareness and that has been a bonus from my diagnosis.
Has anyone else got any thoughts on this?