Hello. I'm from Denmark. I have been searching for other with experience of this disease. My father was diagnosed with braintumor i february. He also had a surgury, where they were very sure that the removed the whole thing. At first they sad that it was a glioblastoma, but biopsy showed that it was HS. Because they thought that it was alle removed ( and the MRI also showed no sign), and all other scans showed no sign of disease in other part of the body, they didn't give him radiation or cemotherapy, the plan was just to do MRI i july and observation. But just 1,5 month after surgury he started having some symptoms. They did a MRI that showed that the tumor had grown again to almost 3 cm. Then they gave him radiation to thw whole brain and a boos of radiation to the lesio, and we just got answer from the doctor that the tumor is still there. It has neither grown or gotten smaller. But my dad has been feeling better. Now they will disscus weather he can get a new surgury and then cemotherapy, or if they are going straight to cemotherapy. It is a very agressive tumor, and they are saying that the prognoses are bad, but there is a chance to get cured from it. How is your wife doing? and is she getting some treatment?

I hope your dad recovers swiftly, my wife is currently 1.5 months from Surgery where they said it's all removed. She had MRI post surgery and the last CT scan around 3weeks when they fitted her radiation mask, they said there is no change. She has been having a few headaches in the last week and is scheduled to undergo 6 weeks of radiation starting in 1 week. we are going to ask for another MRI if they don't do it automatically scan prior to radiation.

We got a differing opinion from different oncologists about doing adjunctive chemo, most of the doctors said for HS she will face all the negative side effects without any demonstrated benefit from chemo.

None of the doctors have given us a reliable prognosis only to say it's very rare, aggressive and there is no agreed treatment protocol.

Is your dad being treated in Denmark?

ok. Good to hear that your wife is doing Well. Yes my father is being treated in Denmark. The doctors here say that all litterature says that the Best Way to treat it is with surgury, radiation and cemotherapy. But i Think they should have given him radiation long before. The kind of cemotherapy they want to try, they Are saying they tried on another patient with a very good outcome, and the medicine they Will give him Can pass through the bloodbarrerier to the brain, so they have hope, but of course cant guarantee anything because it is so rare and have been treated in many different ways with different outcomes. I hope your wife Will do very and handle the radiation well. Are they giving it to the whole brain? Have your doctors suggested any other treatment ?

Hi in her case they have recommended a more targeted radiation therapy over 6 weeks but with some margin area beyond the original tumor.

do you know which chemo drugs they will use: we were recommended Doxorubicin and ifosfamide. however there after sarcoma doctors said it is not known to be beneficial but we are still not sure what is the right advice. For now we are sure to do radiation

they have not recommended any other therapies such as  targeted or immuno, have u heard of any other options?

the cemotherapy that they Will Use is called clag-m. But I dont know what it contains yet. Here its not sarcoma doctors who handles the treatment of HS, but it is the hæmatologist. They haven’t mentioned other kind of medicine, just that they have used different types of cemo  on an other HS patient and that this kind is the only one which had effect. But as you Said there Are no standard protocols. I my self have searched for articles on pubmed, and all the articles mention different medicine, I have a couple of times Read about cemo called chop-e. I have printet out some articles to my fathers doctor, to get his opinion. But I have thought about immunotherapy. But I hope that you wife wont need any cemotherapy. No matter what We Are keeping our hopes up. Because even though its aggressive it still has the possibility to be cured. How old is your wife

My wifes 37, the doctors have said because of her age they feel she has a chance of withstanding side effects of radiation and chemo if she does it. 

ok. She is very Young. I hope the Best for you. My father is 55 years, but strong and healthy so they Said the same about him. I wish and Pray that they Will defeat this illness and get Well soon.

Yes I wish your father a speedy recovery. Please keep sharing and I will too as I don’t know anyone else with this illness. I will update on whatever treatment options we r told about.

Thank you. Yes i Will do