Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Evening here the states Jussi

I too agree that the time to address the 7 mets is when they are small and unobtrusive to the brain ..
You've had 2 MRI's in the 4 month time period ?
Maybe your first infusion was earlier than October ?
Then your first scan was right at 4 months and number 2 at 6?
I understand your thought in using pazopanib to cross the brain barrier. You've been taking it how long ?
Could u be building a resistance is my uneducated comment ? And somehow keeping Keytruda from doing its job completely ?
You are truly a smart young man and I respect what you are up against and your input .

Some light reading Jussi .

http://www.cureasps.org/forum/viewtopic ... 385#p10385

However wanted to send hugs and congratulations for stability !
I sure missed that oppurtunity earlier.
We all need to be as grateful as possible , when possible .

Jussi
I was reading about the useage of pazo in metastatic breast cancer that I believe had metastasised to the brain and patients being on 30mg x2 a day and being effective in micromets..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3668025/
Do you think a lower dose is possible to use against the edema ? But to allow the Keytruda more control over the brain and its treatment ? Maybe help to move beyond stability to reduction?

A question to ask your onc

Private hospital dont radiate untill mets start growing

Hi Jussi
I'm wondering how your doing ?
Are you having monthly MRIs?
Write when you can
Love
Debbie

Just had mri. Every 2moths. There is tiny new lesion deep inside my brain. Everything else is stable. They are not sure if lesion is met or not. Just had 15th dose of keytruda. After we confirm new met I hope to ad yervoy to keytruda snd possibly more radiation.

Jussi ,

I hope they are able to give u a definent answer about the image soon for your peace of mind.
What size and where is it located ?
Will you be seeing a neurosurgeon ?

And last but not least , could it be a" fallout blip of radiation to healthy brain tissue "that is showing up after 9 months ? An image from your radiosurgery , or radio therapy ?
Not sure of the correct term for damaged tissue beyond the radiation treated tumors..

Love
Debbie

Dear Jussi,
I am so sorry that your most recent two month brain MRI showed a concerning new lesion deep in your brain,and I echo Debbie's Hope that you will be able to obtain a definitive diagnosis as soon as possible and I am holding very tight to Hope that it will be determined to be a benign growth instead of an ASPS met. I am grateful that all of your previous mets remain stable, and Hope that they will soon begin to shrink and disappear. I assume that a definitive diagnosis of the new lesion will require waiting for your next brain MRI? Will you therefore postpone beginning the combination Keytruda/Yervoy treatment until after a definitive diagnosis is made? In the meantime, I Hope that you are tolerating the Keytruda well and are able to enjoy your regular activities. Please take care and keep in touch as you are able.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

Lesion is very small just 1 - 2 mm. oncologist didnt even mention it when she called about scan results. Lesion is deep inside of my brains radiologist mentioned. Still even radiologist considered overall expression being that situation is stable. Even if small lesion is asps met I have no problem as long as this is not the first sign that rest of my my asps has become resistant to keytruda. I been using antibiotics for my acne efer singe I started keytruda (stubid I know.) I stopped antibiotics in february so this lesion can just be bseudoprogression after keytruda started working better.

Morning Jussi

How are you feeling , with today being about your 8 months anniversary of Keytruda treatment ?
Have your sleep patterns returned to normal yet ?

It's my understanding that your next MRI will in June ?
Hope all is well .
Love
Debbie

I actually have been on keytruda around 10 moths . In finland we say day before moth so 10.8.2016 means tenth day of august. My internal clock is still messed up. Seems like only way to fix it would be going back to university.

We are trying to get all my brain tumors treated with srs before my tumors become resistant to keytruda. Brain tumors grow lot faster than lung mets so waiting for growth would most likely result my death. It is also better to treat 7 tiny mets than 1or 2bigger ones, radiation damage is smaller and tumors die easier. I can find several studies supporting this approach mostly thanks to this site. If all hospitals in finland refuse we ask from Sweden and germany and so on untill somebody will do it. There are several srs centers in world so most likely somebody will do it. My radiation dose iis no where near dangerous dose. Risk of radiation necrosis increases when whole brain radiaion dose goes above 60 gy. I havent even had 30 gy yet. Giving more radiation is legal problem not a medical one. I wound case study where they succesfully treated 47 brain mets with srs.

Jussi - as I understand you are going to try to appeal to have the clinics or the overall health care decision that you demand to treat these small brain tumors is reasonable and it is beneficial and also feasible to do it on the smaller size because there is less damage when the target is smaller and the probability of achieving the complete necrosis is higher with the small tumors versus bigger vascular ASPS tumors. You can start writing a review on this subject to prepare the appeal. There are new supporting articles getting published all the time, make a broad search for the "multiple brain metastases radiosurgery" on the Pubmed or even for just "multiple brain metastases" sort by the date and read 10-15 newest pages. You can open a new Topic in the brain metastases section with the name like Supporting articles for the immediate small brain metastases radiosurgery and keep adding them there.

Jussi,
I understand you concern and I would be very anxious in your situation.
If you're determined to do the SRS, do you consider the hospital in China? China has a great polulation, so the doctors here have much experience with some radiosurgery--Gama Knife and Cyber Knife.
If you're interesting, you can search Huashan Hospital (Affiliated Hospital of Fudan University). It's a very authoriative hospital and very good at Neurosurgery and Radiosurgery. Many ASPS patients have the brain mets treated in this hospital and achieve good results.

Jussi
I sure join Olga and Lynette in encouraging you to persue the treatment of the additional brain tumors spotted at this time to address them with SRS.
The radiologist, who is a should be an expert doctor of brain treatments , should be able to look at the basic scan 10 months or so , and compare it to current scan to assess how Keytruda and pazo are performing .

What has been the basis to date of progression over your 10 month scans, according to your onc ?

There are about 7 mets and you are somewhat sure they aren't because of prior SRS and or gamma offsite damage ?

These 7 spots were visible before radiation and keytruda so they are not from radiation damage. There is 1new spot that could be from radiation damage but it is tiny just 1-2mm. Irradiated mets are shrinking, but other mets have been stable. First 2 moths after starting keytruda these 7 mets looked little smaller, but difference was too small to measure. Ever since no change. If keytruda would be killing the tumors then smallest tumors would react fastest. In my case it has been opposite, so I believe radiation is main cause of tumor shrinking. Of corse keytruda has been keeping things stable but we have no idea how long that lasts and treating all my lesions can be curative, small change but I want to take it. I understand risks of long term radiation damage and I am ok with them.
Thanks Jorge. We ask first from centers in Europe simply because they are closer, if they all refuse, but cant give medical reason why I shouldn't go ahead with radiation then we consider China.