Jussi from Finland - Dx 2008 - 30.3.1991 - 23.8.2019 R.I.P.

[arojussi]

To Olga: They try to radiate 2 big ones. Tumors are 2.3 cm and 2.4 cm big, so sadly even 27 grays in the middle of the tumor most likely wont destroy them. My dad thinks adding keytruda medication would be best after radiation. There is of course 7 small tumors left that they dont radiate, but I hope the private clinck I am now would re-think. If the big ones dont die, at least one of them is possible to operate and maybe the other one too, if somebody is willing to do the surgery as palliative measure. I have very minor symptomps after second day of radiation and was able to hang out with a friend.

Aa you aready talked to my dad and as usual he is more informed about my situation than I am. Big thanks for your support.

[Olga]

OK, now I get it. It is most probably a good think that they did not irradiate all of them at once. Let's hope the big ones are going to be killed by the radiosurgery, if not - you have a plan with LITT or resection now. Re. private conversations via PM - I am actually in favor of ralking on the board more than in private, it i very beneficial for other patients to see what the problems are and how they can be dealt with. We all build a better understanding and more rational ways of dealing with ASPS on each other experiences.

[danieldew7]

Dear all,
How about anlotinib that being posted on the home page of this site?
http://www.cureasps.org/anlotinib-shows ... -in-china/
The statistic shows a good result especially for ASPS. The trial may be closed for now in China, but I don't know for USA.

[Olga]

It was not even open in the USA yet, and Jussi lives in Finland:)

[D.ap]

Morning Jussi
We are all sure thinking of you today as you persue the treatment on your multiple brain tumors
http://www.cureasps.org/forum/viewtopic ... 1012#p9486
The above post on the "multiple brain tumors treated " you mentioned using votrient for your systemic treatment. If I might ask , why
Votrient?
Please know hope and prayers are with you today and always
Love
Debbie and family

[arojussi]

Votrient was only option my universal hospital gave me. After i demanded something. They also wanted to do whole brain radiation, but even I knew it was a bad idea. I wanted to start something quick so I took Votrient.

[Jorge]

Hi Jussi,
Good to know you don't feel much symptom from the radiosurgery now. Usually, the symptom comes in about 2 weeks after the radiosurgery and goes to the peak in about 1 month. The worst symptom may last 1~2 months. Please pay attention to your feelings during the period.

What the peripheral doses are used in the radiosurgery, especially to the 2 big tumors? The peripheral dose is more important in radiosurgery. Usually, dose of 18 grays can destroy small mets of a few millimeters but can't destroy mets over 1.5cm.

You don't need to be too upset about brain metastasis. I guess the hypothesis of a few months of prognosis is from the doctors? That's because they don't know about this disease very much. My husband was found with 2 brain mets at ~2cm in Sept 2012. The doctors always predicted he had only a few months in different period. But he is now doing well now and started going back to work in May, after 9 times of Gama Knife to the brain and finally Keyturda works to reverse his condition.

What you need to do is to stay strong and strive for the proper treatment! The 2 big mets are timebombs although they were radiosurgeried. And if you read every post in this forum, you may find none of the patients have any TKI works for the brain mets except Brittany. So you have to find the other treatment like PD-1 antibody.

Stay strong and keep fighting!
Good luck,
Lynette

[arojussi]

Thanks for support. I asked for the biggest dose of radiation and the doctor agreed. So biggest get 20 grays to edges. Smaller ones most likely get destroyed. Actually few months was my guess. Clad to hear I might be wrong.

[arojussi]

I will meet a doctor tomorrow. I try to talk about radiating rest of the tumors (7 small ones) as soon as possible, this would most likely mean that we have to wait before staring Keytruda. If he doen't want to radiate then I hope to start Keytruda as soon as possible. I have been haivng very minor problems with Votrient after I started taking it 2 hours before any food or other medications, so maybe I can tolerate Votrient and Keytruda together, but if I have to choose one I think Keytruda is definetly the way to go. Stereotactic radiation has so far caused very minor symptomps. I have been having light headaches and they usually go away with fev hours. In long run I most likely need palliative surgery or LITT for biggest mets 2.4 cm and 2.3 cm, but I don't think it is something to worry about right now. Any comments?

[MartinBube]

Jussi, good luck tomorrow with you doctor and hope that you will get some encouraging news.

[Olga]

There are some studies re. max irradiated volume that the brain is able to tolerate at once, keeping the swelling down. Ask them about it or try to find the articles, although the individual ability can vary. It is pretty important to go trough the next 2 weeks without the major problems, we have seen many caused by the brain radiosurgeries here, probably (we are not sure) some of our members lost their lives as a complication, so be careful for now. The ideas as how to proceed should be based on the facts so try to find any (even single) published cases that support your decisions.

[arojussi]

Status update: I will most likely get Keytruda my universal hospital doctor hasnt been aware of my situation until now, but he seems to want to help. My blood work came back and I have not hear doctor`s opinion yet, but to me they seems to be fine. My liver is strong as always. My GFR is over 90, so my kidneys are ok. I am tolerating Pazopanib very well. I have been swetty and constipated, but that is all. My acne has gone crazy, but I think cortsion affects that. I currently take 4.5 mg dexometason daily. Next week 3 mg and after that 1.5 mg. I try to take cortison at least 2 - 3 hours after Pazopanib. in early September I will have brain scan and I hope we can use streotactic radiation for remaining 7 tumors then. They are currently around 5 mm so I hope they don`t became too big. I am not that worried about swelling in the brain, because my doctor was very confident about their radiation methods. Today morning I had a little worse headache than usually, but it went away in few hours as usual.

I am mostly worried about Pazopanib working with asps brain metastases. Few studies I wound indicated that Pazopanib works well with asps. There is also evidence that Pazopanib can go through blood brain barrier, but these studies were done in kidney cancer. Asps brain metastases might be different from other asps metastases, so it might affect, but it is hard to say how. I hope Pazopanib can keep mets stable still September, so we can radiate the rest. After that we should have enough time to wait for Keytruda to work.

[D.ap]

Jussi
Good to hear of the Keytruba
PM Lynette as she will be so glad to hear from you and talk with you clinically!
What scan ,ie brain, are you on currently?

Love
Debbie

[arojussi]

i think they will take brain MRI in September. It would be stupid to use any other method.

[D.ap]

I agree. I wasn't sure how soon you'd have another MRI
Glad to hear that in 2 months The brain tumors can grow fast . Don't be bashful if you experience an unusual headache to ask for the Mri sooner