I wanted to see if someone in this community has Leukemia Cutis, so I can get some support.
My father 64, was diagnosed 5 months ago. LC is a very rare type of Acute myeloid leukaemia (AML) that presents in the skin as plaques and nodules. It reproduces VERY fast. It is often an indication of a very advanced Acute myeloid leukaemia (AML), but in my fathers case - which makes it even more rare, it is not present on Bone marrow or peripheral blood. It is called Auleukemic Leukemia Cutis, it is common in children, but only 1 in 5 millon adults get it.
My father got standard treatment for Acute myeloid leukaemia (AML) with induction chemotherapy 7+3. Stayed 35 days at the hospital recovering, but he was very strong with no major side effects, this induction went appatently well- the nodules and plaques almost dissapeared.
Nodules and plaques reduction is the only way to measure the treatment’s success because he’s BM or blood are not compromised.
So he was considered for stem cell transplant, luckily he’s brother is 100% compatible so we where able to move forward in the process, he started consolidation chemo 42 days after cycle 1. He had a very rough time, lost weight, got a batería, fever, got very weak and deteriorated.
Sadly, on day 32 of consolidation cycle he noticed 3 new skin lessions that became 6 in 5 days.
This is a mayor set back that left us all of his caregivers and himself devastated sad and anxious.
Stem cell transplant seems to be the only curative intended option, but to my understanding with new lesions he is not elegible.
he is now being admitted again tomorrow and he will get another round of chemo, this time in tablets and an injection in his belly.
I don’t know what this new course of treatment means, if they are still looking forward to try for the stem cell transplant or if this tablet chemo is more of a palliative course of action?
I will ask all of this tomorrow to the medical team but I wanted to find someone living the same situation. So we can talk.
It has been the hardest months of my life to see my father like this. I do feel hopeless many times since the new manifestations appeared.
Thank you for creating this space it is so helpful, even if no one sees this post - I’m now sure if I’m doing it right- or has an LC experience, it is cathartic just to write about this and read about others.
A great big welcome and you are in the right place @Valentina123 and you are now part of our forum family.
Thanks for telling us what has been going on for your father and you.
You might not find someone in exactly the same situation as you and your father but I have found many of us share the same fears, thoughts, feelings and practicalities.
Please do write down, if you have time, all the questions you want to ask today and make sure you get answers you understand and the answers you need, perhaps be pleasantly assertive.
I think it is so hard for the family members as they feel so hopeless and powerless to make the patient better, but are trying to do everything behind the scenes as well as caring. Who asks how the carer is apart from us on here.
How are you doing?
Please do let us know how you get on today and please do look after yourself as well as you are obviously looking after your father