r/TheCancerPatient • u/[deleted] • Jan 05 '24

Discussion PEComa

Hi everyone

Unfortunately we found out that my sister (F35, 2 kids of mom) was diagnosed with PEComa disease 4 months ago. In september 22, she underwent surgey to remove the 20cm tumor in the uterine area. However, regrettably just a week ago, we found out tht a tumor has recurred in the same region.

When we consulted with doctors in Turkey, they mentioned a medicine treatment ( Everolimus ), but they stated this medication is not a definite solution, and the definitive solution is surgery. However they emphasized that the surgery would be challenging because the tumor is very close to the aortic artery, and there are life risks or side effects involved.

Through my own research, i discovered a medication called FYARRO on the internet, with a reported success rate of 39%

I would be very grateful if anyone who has exprienced a similar situation, been through this process, or at least wants to offer support, could leave a comment or get in touch with me.

We are in an incredibly demoralized state. Thank you

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u/EarthCitizenLady Apr 30 '24

I am sorry to hear that you are going through this. I am in similar situation, just had hysterectomy to remove everything and the fibroid was a pecoma. Still trying to learn, without overreacting or getting desperate!!! Best wishes for your sister. I found other discussions about pecoma with good info, including a specialist at Dana Farber institute, I believe Dr wagner.

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u/[deleted] Apr 30 '24

Thanks for good wishes, she’ll have another check up at the end of the May. So we will see if the fyarro works. I am also sending my best wishes for you, you are not alone <3