Im Sorry to hear that. My father passed away a det days ago. It went very fast. But the doctors here didnt do the scans they should, and they admittet that If they have done it maybe they would find evidence of disease earlier. But they Think to much about Money. I dont Think you should worry about the recent scans. My father would often have dots or something that would light up in the scans. And when they finally made a FET scan of the brain it showed that it was changes from radiation and chemo. A FET scan of brain shows If there is any tumor activity in the brain, that mri doesn’t show. I wish all the best for you

Oh, I'm truly sorry for your loss, I don't think theres anything can be said. 

Thank you for telling me about FET scans I will ask about it, I too hope that it's nothing. They have already told us that she will have to do another type of PET which maybe they were referring to FET. they are supposed to have a joint meeting with the doctors this week to discuss her case.

Dear fem, I'm so sorry to read that your father has passed away. Your love and care for him showed in every post you made. My husband was nearly 56 when he died. Too young.  Histiocytic sarcoma had spread to his liver, lungs and spine. I,too, worried that I hadn't pushed for more scans earlier, but I also now believe that even if it had been picked up earlier it wouldn't have made any difference to his treatment or the lack of success of that treatment. It seems as though there are variants of this dreadful cancer- ones where tumours can be cut out which seem to have some success, and the variant where it spreads through whole organs and chemo and radiation make no difference. Take care.

Thank you for your message. I feel like a tried to talk to doctors so many times, but in the end it didnt matter. I am a nurse myself so I know how many mistakes they made. Actually when the tumor was cut of ( in the brain) it didnt grow again. They made a CT scan of his brain a couple of weeks ago and they Said that there still was no sign of tumor activity just complications of all the treatments he got. So I dont know how it spread. But the second chemo he got, they cut some of the chemo of his treatment because they Said there where no signs of disease in the body ( without having a PET scan). So they didnt give him the full treatment, and neither did they give him a PET scan after. He was ill many times with fever where he was admittet to the hospital, but they didnt do anything, where We now know that fever without signs of infection could mean cancer. And they also admittet that they should have reacted on this. Also We Said to doctors from the begginning to talk to other doctors in other countries, they promised me this but they did not do it. I was also promised that If the disease returned that the doctor would give him other treatment to prolong his Life, but changed his mind. And at the very end he wrote to a doctor at a clinic in USA, who actually wrote back and suggested 3 different options for treatment as a trial, but his doctors still would not do it. We talked to a hospital in germany who was willing to give him treatment, but Then my father Got to weak and could no longer fight this battle. But it is difficult to fight a battle when there is not one doctor who is willing to help him fight it. I try though not to Think to much about this,I believe that no matter what the outcome would be the same. I wish both for my father and your husbond that they Are in a better place and that they rest in peace. 

Hello. I was thinking about you and your wife. How Are you both doing? 

Hi Thank you for thinking of us. I hope you are doing ok, considering what you went through last year especially with the added burdon of Covid, lockdowns etc.

I'm positive (but cautious) to say we are doing well so far. My wife has had many many scans (Brain and Full body) and the location of the original tumor, which was removed,  is stable showing no signs of concern, despite a few potential specks of enhancement which appeared on some MRI scans (which were ruled to be non concerning after further scans didn't confirm any nefarious activity).

In short this is the best possible scenario and we are hoping it stays like this indefinately. The doctors are very admittedly cautious in their discussions (they are too reluctant to use words like "Cancer free" or "remission" or "no evidence of disease") as they don't have enough case data to predict the behaviour or chances of recurrance/spread etc and they probably don't want us to let our guards down with the scanning.

She has another scan due in a month or so which we obviously hope wil be uneventful.  Her general health has also improved a lot. There is a lot of stress for both of us approaching a scan and until the results come out. A few times they have said there is a speck of enhancement and we need to do another scan in a few weeks to compare so then we stress out for that interval, but It has settled a lot in the last 6 months.

I have no complaints..... no tumors and  frequent scanning is the best possible outcome since her diagnosis and we both hope it stays as such indefinately. I am having difficulty in allowing myself to relax about the situation but I keep reminding myself that worrying has no benefit whatsover and to be grateful to have reached this situation.

Hi fem

just a little after my last post my wife did another MRI which shows a possible new small lesion close to the old one. They are advising Surgery which is likely what will be the next step. 

I would really like to get the contact of the doctor you mentioned at the clinic, is there anything you could do to connect me with him as all the doctors I'm in touch with are treating it like any other aggressive tumor but they don't have any experience with it.

I've sent you a friend request 

Thank you for all your sharing

Hello. I am so Sorry to hear that. I have just seen your messages.

Are they sure that it is a tumor? 
I would advise you to get a surgury.

as for the doctor in Denmark, dont have any hopes in them. They dont know how to treat this kind of tumor. My mom is actually suing them for neglect. They didn't want anything to do with my father after he had a new tumor and sign of disease. I has to fight very hard just for him to get another surgury, as they didn't even wanted to give him that. 

I would recommend you to get in contact with the clinic in USA. I Think they have much more knowledge with this type tumor. 
you should tell your wifes doctors to get in touch with Them ans other doctors to get and second opinion about treatment as soon as possible. 

Will they give your wife cemo also? 
the type of cemo they gave mig father ruined him, it was to much for his brain and body, and it didn't work. It was called clag-m.

But I am very sad to hear this, I know what you Are going through. 
I truly hope it goes Well. 
The good thing is that hers is actually growing very slowly, so If she gets it removed again and gets treatment that she Will probably get healed.

My best regard to both of you

They could also as I told you once do a pet scan of her brain to be sure If it is a tumor or some other lesion.