It begins like Eczema and Psoriasis but as it becomes more aggressive tumours form and finally internal organ infiltration.I wouldn't say Mycosis Fungoides is that slow growing as with me it moved from stage 1a to 2b,the beginning of the aggressive disorder,in about 5 years.I'd also suggest that it's pretty life threatening too as the tumours nearly always implode and become infected.It caused me to have an amputation due to these tumours.Most of the CTCL's do seem to be Mycosis Fungoides but there's a host of them; NK Nasal, Large Anaplastic T Cell,Sezary Syndrome,etc.and all of them should be avoided!!
what was your overall experience with CTCL? Like stage you were diagnosed? Everyday life? How you learned to accept the fact that you have CTCL. My sibling just got diagnosed so I would like to know what I can do to help. Thank you
I agree with you. My younger brother passed away dec 15,2023 from this horrible disease. You wanna blame everyone but yourself. The fact is,it took so long just to diagnose it. Once he got a lung infection stemming from pneumonia,it was all downhill from there. He suffered many years with skin conditions not knowing the root problem. RIP Roger
It begins like Eczema and Psoriasis but as it becomes more aggressive tumours form and finally internal organ infiltration.I wouldn't say Mycosis Fungoides is that slow growing as with me it moved from stage 1a to 2b,the beginning of the aggressive disorder,in about 5 years.I'd also suggest that it's pretty life threatening too as the tumours nearly always implode and become infected.It caused me to have an amputation due to these tumours.Most of the CTCL's do seem to be Mycosis Fungoides but there's a host of them; NK Nasal, Large Anaplastic T Cell,Sezary Syndrome,etc.and all of them should be avoided!!
what was your overall experience with CTCL? Like stage you were diagnosed? Everyday life? How you learned to accept the fact that you have CTCL. My sibling just got diagnosed so I would like to know what I can do to help. Thank you
I agree with you. My younger brother passed away dec 15,2023 from this horrible disease. You wanna blame everyone but yourself. The fact is,it took so long just to diagnose it. Once he got a lung infection stemming from pneumonia,it was all downhill from there. He suffered many years with skin conditions not knowing the root problem. RIP Roger