Soft tissue sarcomas

A place for anyone affected by any type of soft tissue sarcoma to support one another, ask questions, and share experiences.

Epithelioid Hemangioendothelioma

msparos
Posted by

Morning all,

I have been diagnosed with Epithelioid Hemangioendothelioma or EHE recently. [Edited by Admin] is there anyone on here that has had the same diagnosis? I'm in remission from NHL. All a bit crazy!

Thanks

Ali

Tix
Posted by

Hi msparos

Sorry you haven’t had a reply. I’ve never heard of this sarcoma! Hope the group on facebook has someone’s who has heard of this! X

FightingEHE
Posted by

Hello msparos

Ive only just seen your post, but yes, I was diagnosed with EHE in 2015.  I am 'watching and waiting' - no treatment at all, just twice yearly scans and blood tests as I have no symptoms fortunately..  I attend the Leeds teaching hospitals.         How about you?  

Angela

Sau_kundu
Posted by

Hi

I am from India.

My brother in law was diagnosed with EHE in October 2017. 

He has been given targeted therapy of Avastin and chemotherapy of paclitaxel. And also radiation therapy at sacro iliac joint and D5-D6 in spine.

After this there was some improvement in the earlier findings.

But new finding of tumor are found in lungs and left shoulder.

Now his body is deteriorating very fast.

He is having breathing problem and his platePla andhl haemoglobin is reducing very fast. Doc is transfusing blood and Sdpc every alternate day. Even Revolade is being given.

We don't know what could be done to improve his body.

Thanks


FightingEHE
Posted by

So sorry your brother-in-law is suffering so much with EHE.  I wish I could offer some help but there is so little known about the disease. Lots of healthy food to boost the immune system, and detoxing and the Facebook group are very helpful and will offer prayers too.  

Very best wishes, Angela

Cat new
Posted by

Hi it seems this EHE is becoming to affect more and more people of late, I was diagnosed with it in July 2018 , I hope you are doing ok xx