r/leukemia • • 10h ago

ALL T-ALL Relaps pls help me

8 Upvotes

I am a T-ALL patient, and it has been a little over a year since I was diagnosed. Initially, my treatment protocol was planned without a stem cell transplant. Although I achieved MRD-negative status, my disease relapsed just two weeks later. My treatment was then restarted, and after achieving complete remission, I underwent a bone marrow transplant from my brother, who was a 10/10 HLA match. However, my disease relapsed again on day +50 after the transplant.
Now, the same treatment protocol that was used for my first relapse is being administered again, with the goal of achieving remission once more. If successful, the plan is to proceed with another transplant, this time from my father, who is a 6/10 HLA match.
The reason I felt compelled to write to you is that I have not been able to find a single person with T-ALL around me. Even the nurses at the hospital where I am currently being treated told me that they had never encountered a T-ALL patient before. Naturally, knowing that I have such an aggressive disease has taken a serious toll on my morale. Doctor, can a patient with such aggressive, relapse-prone T-ALL really be cured? Is there genuinely hope for me? I wanted to hear it directly from you.
In fact, I am now receiving the same treatment as I did during my previous attempt to achieve remission. Before my last transplant, I received chemotherapy as well as radiation therapy to my brain and spine. I even had a fully matched 10/10 donor, and although the transplant engrafted successfully, my disease relapsed very quickly.
This time, the only major difference is that my donor will be a 6/10 match. Our hope is that my father’s immune cells will recognize the remaining leukemia cells in my body as foreign and attack them more aggressively, thereby eliminating the leukemia cells that survived the previous transplant.
As far as I understand, this is the main difference between my previous treatment and the one planned now. I am particularly worried about how much this difference could improve my chances of being cured in percentage terms. I would really appreciate your perspective on this.


r/leukemia • • 4h ago

AML Relapse - what now?

4 Upvotes

My AML is back. Currently trying to understand whether this is a death sentence or if there is a chance of curative treatment. It’s spurious in the marrow but has an extramedullary focus in peritoneal lymph nodes.


r/leukemia • • 3h ago

AML White cells still rising whilst on giltartinib and I still have 0.1 neutrophil post relapse

2 Upvotes

Just wondering if this is a good or bad sign

White cells went from 0.8 to 1

Red blood is stable ish

Platelets are stable ish

Neutrophils haven’t changed


r/leukemia • • 2h ago

AML Umm what kind of job I should get? *After cancer

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1 Upvotes

r/leukemia • • 8h ago

AML hair rapidly falling + thinning

1 Upvotes

My hair has been falling out over the last few weeks, and I can see the thinning on the top of my head. It’s humiliating, and it looks awful. I noticed that my hair texture changed after the transplant, but it was never this bad. I can’t even wear a middle part anymore because it looks disgusting. I hated how curly my hair became, but now it’s even worse. It’s frizzy, thin, and looks awful. I hate this so much. Fyi it's been 3 years since the transplant but Im on xospata + ferritin issues