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My partner had a liver biopsy on the 28th of last month and last week the results came back as Epithelioid Hemangioendothelioma. This only affects 0.01% of the cancer population but we are very keen to network with anyone in the UK/World who has it. I would be grateful for any responses from anyone with knowledge of this disease.
Sorry if I dissapoint you I don't know anything about Epithelioid Hemangioendothelioma.
I guess this is one of the best places on the internet to look for support with dealing with a rare condition like your partner's. I don't know whether this site is particularly good at spreading medical expertise. I do know that it's very good at linking people either experiencing, or caring, for somebody who is experiencing, cancers.
I hope you find (as I type that I realise that I may seem to be be wishing your partner's condition on somebody else) somebody with knowledge of the "same" condition soon. Meanwhile we all want to be supportive, even if the particular "cell reproductive malfunction" that affects us, is radically different from the cancer that your partner has apparently developed.
I was hesitant to respond at all because I don't meet the criterion of having any knowledge of this disease. I just wanted to open up the idea that this site is about the people experiencing these diseases (or their carers), not just the diseases themselves.
All the best wishes I can spare,
Someone posted last year asking for more information about this condition on behalf of their mother. You can see the discussion here. As you can see from the responses, there were some suggestions from other members about websites which may offer more information.
I wonder whether any of these other sites might help link you to others in a similar position?
Welcome to Cancer Chat.
Many thanks for your response. I am sure that I need the support and feel similarly to anyone in our situation. My point on finding others is simply that there are no treatment standards for Epilthelioid Hemangioepithelioma and so we are looking for anyone who has had a treatment and what the response has been like.
Thanks for your note. I have an email notification set up if there is any activity on that post but am I able to private message the poster as it seems she has dropped off the boards for a long time?
Hello! I'm sorry to hear about your partner. My child is also the same cancer. I got most of my information from Boston Children's Hospital (USA)
He went through a round of chemo and it didn't work. We are just waiting now. Hope this give you a little more info.
I'm really sorry to hear your child has this disease. Thank you so much for posting a reply to me.
Can I please ask which Doctor/Hospital is treating your child and what the specific name of the chemo drugs and how long they had them for?
You are right, the member who started the discussion didn't post again, but I think this is because no-one got in contact who had Epithelioid Hemangioendothelioma. I thought some of the links on the thread might be useful.
In terms of private messaging, you have to get this set up by the moderator. You could post on the thread and see if the member responds. Her account is still active. I can also email her, in case she no longer looks for messages.
Hi again Jane,
Thanks for your help. In terms of PM'ing the person will this automatically trigger a notification? If not then perhaps if you could send her an email? We would very much appreciate it.
On the information front you did well to suggest those links as they are indeed ones I have already got onto. The Inspire is not however but the link suggested to http://www.heardsupport.org/ is currently moving to a new site and is probably best accessed through CRAVAT foundation which is an update of that site http://www.cravatfoundation.org/ . It is working with University of Illinois to get an international Registry together so that treatments and research data can be pursued.
To date this has been held by the H.E.A.R.D support group but there is international calls for a global database given that only 300ish cases are recorded worldwide.
I have emailed the person who started the other discussion. If You post on her thread then it should trigger a notification to her, if she set up her account to receive notifications. Anyway, I've emailed a link to your discussion thread, so I'll keep my fingers crossed that you get a response.
Thank you in turn for your update on the websites.
He was treated with a chemo called paclitaxel. Everything I have read in the Internet says chemo is NOT a treatment option. It did not work. I have heard of a drug called rapamycin. If you search that drug it also seems to work. I'm not sure if you have ever heard of the author Kris Carr. She also has this same cancer and she opted not to treat it and has been doing fine for about 10 years I think. She is also stage 4. Our doctors have asked us whether we wanted to treat it or sit and watch. They were afraid of activating the cells. This cancer does have quite the attitude and may dissolve back into the body and never be seen again. We felt differently and chose to try. I wasn't sure if we were making the right decision. Putting awful chemicals into his body and making him really sick for something that wasn't going to work.
He's still fighting but he is good. We plan to visit as many hospitals as we can. Are you from the UK? If you are and they do not have anything there try the Cleveland Clinic in Cleveland Ohio USA. They are working on a huge research program right now. Kids are excluded. Keep me posted if you find anything that works.... We could use something to go after.
I've had epitheloid haemangioendothelioma, been through treatment and come out the other side. I didn't have it in my liver but in my chest cavity.
Chemo didn't work - but surgery certainly did which I had in the summer of 2012.
If it is useful feel free to ask me anything.
Steve! Hello! And hello to the rest of the community!!
My brother (age 24) has been diagnosed with EHE about a month ago. We're at Sloan Kettering, and he just started a chemo regimen of doxarubicin and ifosfmaide.
He has a giant tumor in his chest "mediastinum", as well as 9 smaller tumors in his liver. The mitotic rate (how fast cells are dividing) we got from the chest biopsy is "4", and our doctor, the chief of sarcoma here at Sloan, said the best first thing to try and do is the chemo, and hope we get a response. We know full well we may not, but other drugs are experimental (the anti-angiogenics for example) and it seems they are also a crapshoot with little to guarantee they work, and much less knowledge on potential side effects, etc.
I would love desperately to be in touch with you and anyone here that may be able to help, to learn more about your cancers and see if it had similar histology / cell structures / diagnosis to my brother's, as it seems even within EHE there is so much variation. We are also setting up consulations at Dana Farber, and will be trying to get anyone with any expertise on EHE on the line in coming weeks. If this chemo doesn't work, we need to come up with plan B, and fast.
I'd be so so so grateful for your time.
Thank you so much, and blessings and luck and love to you all,