Pulmonary Epithelioid Haemangioendothelioma

Yes, it seems as though it certainly is rare. I have searched around quite a lot, and seen figure mentioned of 50 documented cases. However, that must mean your husband is in good hands, because it is often mis-diagnosed as "adenocarcinoma". Typical reports say that this EH is "rare vascular tumour of low-grade". Is your husband having surgery, which they say is possible with unilateral (one lung) infection? There can also be a response with chemo and with interferon. I want to wish you the best of luck. The best comfort I can give is that sufferers of rare cancers usually do get a lot of good quality treatment because the top specialists are eager to see something out-of-the-ordinary. Let's hope that means he is getting the very best of referrals and treatment. How are you both feeling? I want to say Hi, and to hope that you get a lot of support on What Now. There is a chat room, too, so just come in and see. You don't have to join in if you don't feel up to it, but I think it will make you feel as though there are a lot of people bailing out alongside you in the boat. Lots of love xxxx Penny

It has been a while since I submitted my initial message and there has been little in the way of knowledge/experience from anyone else. My husband has had 3 lots of chemo but in the short space of time since he was diagnosed his mobility has deteriorated significantly. He has had radiotherapy on his spine due to compressed vertebrae in two locations but he is currently in hospital whilst staff manage his pain. There are only 2 or 3 other cases in UK apparently. Is there an expert out there? USA, India, anywhere... - who can suggest something that isn't being tried at the moment. Although staff are very good, and things may be happening in the background - there doesn't seem to be much proactive work. I've tried researching the Internet but a lot of the web sites aren't open to me.

Yes, I've noticed that you have to sign in to some of them and this keeps us "patients" excluded. Is there anyway that say a Cancer MacMillan nurse could help you get access to any of these sites?

I'm very sorry that your husband is having increased problems with his spine. I hope that they manage the pain issue as soon as possible - the mental welfare of the patient - and of carers! - depends so much upon that. Is there any way you can contact these other sufferers/carers? I presume you are posting upon every website going! I wish you the best of luck with that search. How much help are you getting from the hospital, and are you at a specialist one or your local?

I'm afraid the lack of proactive research will be because the drugs companies feel that there isn't enough demand for them to do tests, and I suppose that almost no patients also limits the possibility of clinical trials. There is always hope, and some drug that have been developed for another type may be discovered to work well on this type. Let's hope!

Lots of love xxxx Penny

Hi..My husband has recently been diagnosed with Epithelioid Haemangioendothelioma. At first they thought he had Mesothelioma however many pathologists later a specialist at Harvard confirmed EH. Hubby's first symptoms only appeared 3 months ago and it began with a pleural effusion. He has deteriorated at a very scary rate however this week he started his first round of chemo using Pemetrexed (Alimta) and Cisplatin. Our Oncologists have very little knowledge of this type of cancer and have been researching as much as they can. I would be interested to know more about your husbands case.

Hi.

So sorry to hear that your husband has this disease too. I was diagnosed in June this year. There is a support group and registry in Melbourne Australia that is quite good. It is called www.HEARDsupport.org. Have a look I hope it will help some. Good luck.