Hello.

Im so happy for you both. It's actually pretty amazing and I hope she will always stay healthy. I know there must be some side effects of the radiation therapy, but the outcome could have been worse. So I would too be very gratefull. Im glad that she beat the statitics for this disease. It also seems that you had some good doctors where you live. (where are you from?) 

I wish both of you the best of luck and a healthy normal life. 

Well done both of you. 

Hi, 

I just wanted to come on and say thank you for the update. My husband was diagnosed with HS with multiple tumours in his liver and spleen back in November. I immediately started researching and came across this post and it gave me a lot of information but also some hope during a very bleak and scary time. My husbands chemotherapy seems to have gone well so far and we're hoping things are going well for us but your update on your wife has given him a great boost of positivity. I'm so happy to read she's still doing well.

Hi KMuir

im really glad if it was helpful and more so that your husbands treatment is going well. When my wife first found out her diagnosis and we tried to research , every research study (there arent many) seemed bleak and the few anecdotal accounts were all bad outcomes so it was really hard for her to have any hope of watching our kids grow up. 

Its taken a long time but weve come to terms with the fact that statistics are just that and we have to see her outcome as unique as is everyones. If your husband is responding to the treatment then you and he should believe that you can have a life past this. I hope for it. 

id like to ask if you dont mind sharing which chemotherapy drugs he is receiving as that information is very valuable though very case dependant im sure.

Just to reply to Fem, (missed ur last response) we're from Dubai, my wife had her first 2019 surgery in a hospital in london where they diagnosed her after pathology(initially they thought from scans it was a more common meningioma) . Her 2021 surgery and follow up consultations have been at a clinic Abu Dhabi UAE. So far i have to say both her surgeons in UK and UAE were excellent. 

take care

I totally agree, the more information we can share the better it might be for everyone.

he had 8 cycles of CHOP. He was well enough to have it every two weeks. The first 4 went okay and the last 4 were pretty rough. He's also been on trametinib between his chemo cycles and we're waiting for dabrafenib to be signed off and he'll stay on the two inib's for the foreseeable future. 

Thanks for sharing. Its a difficult diagnosis because of the lack of info and i think just naturally posotove outcomes wont get shared as much.  people (at least myself) forget to share when things are going ok. When my wife and i see an account of a person who is having a positive result , it is such a boost of hope that we cannot get any other place. I totally get it. 
 

I totally agree, my husband and I have had this conversation often, it's not that people never get better from it, it's just people that do enjoy being better and don't revisit forums to tell people about it (well that's what we've been telling ourselves anyway) 

are you guys in the UK? 

Were in the UAE but in 2019 she got treatment in the UK because we felt they had way more experienced neurosurgeons( at the time it was thought to be a low grade meningioma likely benign). after the surgery we came back to UAE and did scans here and kept sending them to the docs in the UK. 
 

When her scans again showed possible growth in 2021 we were forced to find local options because of Covid travel restrictions but that was a blessing in disguise because we met a very good surgeon here (happens to be german and trained in UK) in cleveland clinic UAE