PEComa tumor patients

PEComa tumor patients This group is created to help people around the world with malign PEComa tumor to get conected, to share information and experiences and to support each other.

Because this is so rare kind of sarcoma/cancer it´s hard to find others who go through this. Greetings from Sweden! Karla (patient with PEComa in the abdomen)

10 videos about the advances in the research about PEComa malign tumors.
05/12/2024

10 videos about the advances in the research about PEComa malign tumors.

Andrew Wagner, MD, PhD, details his typical treatment approach for systemic therapy in patients with malignant PEComa.

23/11/2024

My name´s Karla and I live in Sweden.
In August doctors found a big malign PEComa tumor in my abdomen (next to the kidney) which was 20 x 12 x 12 cms big with metastas in the lymph nodes and a little in the lunges which they suspected maybe is LAM. Because of the size of the tumor is so big they don´t see the possibility to operate and take it out. I have been now almost 3 months with Everolimus (Inmunosuppresive medicine). It has gone pretty well but I have haft some side effects infection in the nail in 2 fingers and a cold which made me get 2,5 months with hoarse voice and sore throat.
In August the tumor got sonder and I got a bleeding and an infection which had me one week in the hospital. I got many antibiotics and after that I have haft problem with a bactery in my intestines 3 times (clostridum) so I take another kind of antibiotics against that still. Besides that I feel good now and pretty normal. I don´t have any pain from the tumor and I don´t understand even how it can fit there because my abdomen doesn´t even look big. So, I share my situation and threatment and you can feel free to share about you. :) Greetings! Karla

https://www.mdpi.com/2077-0383/10/16/3705
22/11/2024

https://www.mdpi.com/2077-0383/10/16/3705

Perivascular epithelioid cell tumors (PEComa) represent a family of rare mesenchymal tumors resultant from deregulation in mTOR pathway activity. The aim of this study is to evaluate the long-term efficacy of targeted PEComa treatment. We reviewed all consecutive patients with PEComa who started sys...

https://www.annalsofoncology.org/article/S0923-7534(19)39235-X/fulltext
22/11/2024

https://www.annalsofoncology.org/article/S0923-7534(19)39235-X/fulltext

Perivascular epithelioid cell tumors (PEComas) are rare mesenchymal tumors recently recognized as a distinct entity by the World Health Organization [1]. The natural history of these tumors is highly variable ranging from indolent benign lesions to lesions with an aggressive clinical course includin...

https://www.youtube.com/watch?v=mzTcu6kwjnY
22/11/2024

https://www.youtube.com/watch?v=mzTcu6kwjnY

It is a rare mesenchymal neoplasm of unclear histogenesis. It is composed of cells with “perivascular epithelioid cell morphology” which co-expresses smooth ...

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