Hello. Im so Sorry to hear about your grandaughter. She has been through a lot. And dont Think I know more about the disease than you do. My father is getting cemo therapy called clag-m. And it’s very hard for him, but he is getting through it with a lot side effect. But We Will know in a couple of weeks If it has worked. This is his first cyckle, so If the PET scan and MRI shows good effect of it, they Will give him a cykle more. Then I Can tell you about it. Where are you from? Uk? 

Hello. How is your wife doing ? 

My husband is 59 years old and he was diagnosed Histiocytic Sarcoma in August 2018.  We were told HS is very rare and aggressive, doctors haven’t got enough documents to decide what treatments on him.  Our case was referred to Oxford hospital and they had asked opinions from London hospital, Newcastle hospital and also the US HS consultant.  They finally decided to have CHOP chemo on my husband.  He has to do 6 CHOP chemotherapies, he had to take CT scan to monitor the chemo result after every 2 chemo.  If the result was not ideal then doctor might change the type of chemo.  Luckily he was responding well to CHOP, After 6 chemo finished in Jan 2019, his neck tumour size is reduced to from 3cm to 0.2cm and the tumour near his stomach was 7cm, and now with significant reduction (unfortunately there is no measurement in size).  Doctors are very happy with his result.  In order to stop the cancer coming back, he has to do a stem cell transplant.  Luckily his brother’s stem cells matched with his.  He has finished his transplant in the middle of June, he was discharged from hospital in early July.  He has a long recovery period up to 6 months or even longer.  He has to take a lot of medicine to help him staying away from infection.  He was back to the hospital couple weeks ago due to high fever, luckily he was discharged after anti-biotics treatment.   I know there is limited information about HS.  I hope this sharing helps.

Hi 

im really glad your husband is doing well and is recovering. My wife recently finished the radiation treatments. They have advised her against any chemo for now as her scans are clear (timeout was surgically removed with some margin) and they advised that doing the chop chemo is an option but they feel doing it adjunctively would have more negatives. They also said that in her case there is a limit to how much chemo a person can do and if there is no evidence of the disease at this point it’s better to frequently scan and monitor. I had found a few (3-4 ) cases of primary brain HS where the outcome was longer term no evidence of disease and those had all taken temozolomide chemo therapy . This is something we are still asking about but till now they said it’s relatively well tolerated but again there is no good reason to take it now. 

Thanks so so much for sharing. 

ok. Good to hear. My father is also responding on the clag - m cemotherapy, there hasn’t been any HS activity since he Got the first cyckle. He is about to get the second and last one. They dont have any other treatments or option for him here. They have tried chop on another patient before him, and it didnt work on him, so they Will not be using that. But unfortunantly the radiation and the chemotherapy has had a Big negative impact on his brain. He sleeps all Day,  and behaves like he has demantia right now. But We Are Hoping that it Will get better. 

Hello how is it going with your family members and their treatment ?

Hello. How is it going ? 

Hi my wife and I are doing well. How is your father, did he finish his rounds of chemo? I hope everyone is doing better.

My wife finished Radiation in August and has done several follow up scans PET MRI etc. So far they all show no new tumor activity and are in line with normal post operative/radiotherapy treatments. She still needs to do MRI scans every 4 months (It will be year or so before they advise to reduce the frequency).

she had a lot of post treatment side effects mainly brain fogginess and anxiety in general but they are much less now and she has been working hard towards her general wellbeing. When scans immediately upcoming the stress level goes up a lot but I'm thankful that it's just that which is really a best case so I am hopefull things remain.

They recently did genetic testing on the tissue which didn't show anything concrete as targetable (which at this point isn't really actionable anyway), but they did find something that *may* suggest that some treatments for melanoma may be helpful if it came to it but the oncologist is still doing research as results just came in.

Right now the only thing advised is further scanning so I'm thankful.

its so good to hear. It must be such a relief for you. My dad hasn’t had any activity in the brain, and was actully doing a lot better. But suddanly he had an infektion for 14 days ago and was admittet to the hospital. Here the PET scan very sadly has shows that he has tumor in the lung and multiple changes in the liver. They wanna discussing If they Will do a biopsi, but they Are not sure. Right now it seems that they have given up in him and wont give other treatments. It is very heartbreaking for us because it happend so suddanly and its getting worse fast. They told us in the begin that histiocystic sarcoma one the brain could not spred to other parts og the body, and they didnt do PET scan on him because of this. So right now We Are desperate to find some treatment in other country. 

Hi Fem

I'm really sorry to hear it. it's very scary with this diagnosis because even the doctors keep saying there isn't enough data to have a clear treatment plan. I can't imagine how it is to have them not give you options of something to be done. 

My wife's most recent MRI a few days ago shows a very small enhancement (possibly nothing) in a slightly different part of her brain. it could be nothing but they are concerned so she needs to do another MRI and also of her Spine in a few weeks as they have no idea how it could progress. The PET scan done just this jan was  clear but it's possible that anything was too small to show up. Again they say there is a possibility it's nothing but will only know after the next scan. Right now it's literally a tiny dot on the scan but it's deeper in the brain so I'm not sure what could be done if it turns out to be something.

Its been exactly a year since this all started and I'm scared for her to face another round when she was just getting a little back to normal. I wish I could offer some useful advise to you. I have read somethings about immunotherapy/vaccines but unfortunately it's beyond my understanding as it all relolves around Glioblastoma Multiforme which is different so I am waiting for her oncologists to discuss it but in the meantime they say we need to check with the next scan.

Our treatment options where we live is not as good as the UK but going back for treatments is also very expensive but we don't have a choice if it comes to it.

I will keep updating if our oncologist hopefully suggests anything in hopes it's helpful