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

[Jorge]

Hi Jussi,
I'm very touched you're so brave and determined!
I wish with the success of the 2 surgeries, the doctor will be more open to the positive treatments in the future. And this will help you very much to contro the desease.

Wish you a speedy recover!
Lynette

[arojussi]

So next monday we travell to Shanghai for gamma knife. Patology from my cerebellar met came back as living and actively growing asps. There is one suspicious spot that might be necrosis or living asps or both. If I have undershood corrrectly it is in my right frontal lobe very close to the bone. I have been having some headaches in that area. Interestingly dexometasone hasnt helped much. I have always been having severe tension headaches and migrains. We will still discuss about gamma knife for that lesion. Of course based on location surgery might also be good option especially if radiation necrosis cant be ruled out. Most irradiated lesions look dead. Chinese doctor will radiate small mets that were not radiated before. It will take 2 days.

According to lab tests cerebellar met was now resistant to pazopanib and sutent. Looks like Keytruda never worked for me. Even if I had such high hopes for it. Pazopanib apparently worked, before tumors became resistant to it. Based on my tumor sample one experimental tki medication might work. My doctor tries to get it to me off label, because trial is not in Finland yet and trial demands stable brain tumors. I currently have only brain tumors and 3 lung nodules all less than 1 cm in diameter. If systemic medication works in slowing down progression in my brain in theory we should have time to treat all future nodules with gamma knife. As long as lesions are found small and treated fast up to 47 lesions can be succefully treated maybe more. I will most likely have gamma knife before any medications, because my surgical wounds are still healing and we have no idea how I might react to new medication. AZD8186 is medication that we are trying to get.

[D.ap]

Hi Jussi
How's your swelling on your jaw going ?
Is it evident that your brain tumor surgery is the reason for your headaches ?
It was 1.7cm as I recall ?
The surgery sounds like a better idea maybe ?

Too I was wondering how it was determined that pazo helped and not Keytruda in the biopsie of the surgically removed brain tumor ?

The amount of necrotic material ?

I'm sure sorry to hear of your headaches .

[Disco76lover]

I hope the operation goes well Jussi and looking forward to hearing the positive outcome. Xx

[arojussi]

So I have been on sutent, to control rebound effect and brain swelling. I had many more brain mets treated than We initially planned. I am very happy doctor decided to be as aggressive as possible. Indeed total tumor volume is more important than number of tumors. My brain swelling was way worse after treatment of 13 big tumors year ago. Now biggest tumor was less than 1cm. I know my prognosis is very poor, because sooner or later new brain mets will grow. If I will develop few new brain mets there is still a change, but if I develop 20 new ones I will die and there is no way out of it. Scan next week.

[D.ap]

Hi Jussi

I re read your post and I'm truly glad that you are doing well with your swelling .

How many tumors were treated ?
It's amazing that sutent is helping with the edema.
Could it be because of the Keytruda continuing to work with the gamma knife treatment ?
What goals are there to allow u to go into the other Med ?
Please let us know how ur doing
Love
Debbie

[D.ap]

Jussi

I was curious to how big your lung tumors are and where they are located?
When you get a moment.

[arojussi]

I know more after scans. My lung tumors havent been issue for years. At the moment I think there are around 3 nodules. All of them are less than 1 cm. They grew 1 or 2mm in average in 6 moths. This growth was so slow that my oncologist considered me cured and my follow up scans were consirered low priority and that was how control of my cancer was lost. Some good news for brain tumors less than 6 mm in diameter gamma knife has control rate of practically 100. Percent.

[arojussi]

36 brain tumors were treated in total. It is very impressive. When pazopanib stopped working I developed several new brain tumors. So I figured even if tumors are resistant to pazo and sutent tki can still slow tumor growth. I most likely have to use different kind of tki:s for the rest of of my life. Really hate that. I developed new bone met while I was on keytruda. This lesion was growing and had vacular nature typical for asps. Based on this it isnot realistic to hope that Keytruda is still working. Even if keytruda would still be workig it is practically impossible to find hospital that would give me more of it.

[D.ap]

Hello Jussi

That is impressive ! What's the secret to keeping swelling down? The total 36 x several mm's a piece per tumor, is just wow!

I've heard of high doses of sutent and defiantly heard of cedirinib helping with edema. However, bleeding is always a risk, right?
Will the scan be reviewing your mandible as well?

I hope today finds you continuing to recover .

[arojussi]

Tumor volume is more important than number of tumors. Do the math. Total tumor volume of 36 few mm tumors is still way smaller than volume of 13 tumors that are bigger than 1cm. Gamma knife is also way more precise than linear arc resulting in significantly smalller normal brain tissue dose.

[D.ap]

Thank you for the clarification Jussi
I had no idea your first 13 were a cm plus .
So this gamma knife was over half the volume ?

[Disco76lover]

Wow Jussi, I totally admire your strength and determination in fighting this horrible disease. You are truly an inspiration and I wish you the very best in getting through this. Sending lots of positive thoughts your way.

[arojussi]

We had scan results today. They think cancer hasn't progressed. Brain scan is nearly impossible to state accurately. Radiologist counted around 30 tumors. I had linear arc srs for 13 tumors year ago around all of these lesions there are huge necrotic areas, so it doesn't look pretty, but as long as there are no symptoms or reason to believe that tumors are growing these necrotic tissues arent a problem. I also had gamma knife srs around a moth ago. So I had 49 lesions treated already, so If radiologist sees 30 tumors changes that there would be several new tumors is pretty small. It is no surprise, that chinese neurosurgeon was able to find more and smaller lesions than average radiologist. He simply has a lot more experience with brain mets. Gamma knife treated tumors are most likely still visible, but changes that they would still be living cancer is small. Oncologist was able to test different medicines with my brain tumor sample. I was impressed when I heard that he was able to find clinical trials, that I can try to get into. All I need is weak response to any medicine, because all my visible lesions are either treated or treatable. So all I need is something that controls possible microscopic brain mets. Of course I have messed up really badly, when 30 brain mets is good news. However there might still be change for me. I try to update articles about stereotactic radiation to brain mets section, when I have energy.

[Olga]

The result is pretty good - at least there are no aggressively obviously growing brain mets at the moment, so at least you bought some time. It is an interesting observation re. bigger necrotic margins for the mets treated with the LINAC based radiosurgical unit (do you know what they have there - Novalis or something else) versus GammaKnife margins. Does it mean that with the GammaKnife there is less scattering physically or they have better precision/reliable target coverage and do not need to add bigger margins to make sure they hit the met. Or simply bigger mets need more margins - your first mets treated in Finland were bigger. Few years ago I was trying to find a good review comparing radiosurgery units based on X-Rays (LINAC) versus GammaKnife (gamma rays) but could not. They were not interested comparing them in a multiple brain mets setting as the radiosurgeries were not done with the number of mets more than a few, then some places started with the good results but they usually use some unit they have and just build upon the experience.