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

[Olga]

Jussi,
hi, I have to respectfully disagree with your verdict toward the Finnish healthcare as from what I see more treatments were covered by it than in other places. As I understand, your laser assisted lung surgeries in Germany by Dr.Rolle and a cryoablation in US by Dr.Littrup were paid for by the system? So you might be the only person here to get it paid out of country. Ivan had it paid for the first 2 laser assisted surgeries and only after a long fight. The rest of the surgeries were paid by us excluding the ones that are done in Vancouver - very few. Also the multiple brain mets radiosurgery treatment would not be even possible elsewhere, it would have been extremely hard to find a place where they would perform that in a such a multiple setting and of course it would not be paid for by the system. Also the attitude toward the surgery is the same everywhere not specific to Finland - no one would electively (versus emergency) operate on a brain with the multiple brain mets to remove the few big ones. They have been treated so they do not even know if the bigger mets are alive or dead, it needs to be seen as they keep shrinking, also you are receiving the systemic treatment that they hope could work to at least reduce them.

The health care treatments are paid for on a basis of the evidence proven approved plan. Keytruda is also rarely available and mostly not paid for so the very reason they agree to look into the early results and if it is hints as effective to pay in the future - it is also a very rare beneficial for you position. You started Keyruda without any documented proof it is effective so how they could make a decision? A this stage of our ASPS story I consider the very existence of the treatments anywhere in the world that would improve/prolong your lives as a great achievement of the global healthcare and science not avail. for the patient's before for any money, if it is close to home - that's an advantage, if it is getting paid by the local healthcare - that's a big gift as often it is against their own rules.
In case of the brain mets emergency - can you check yourself into the bigger hospital emergency room? Discuss with your family where to take you. Write a note with the explanation of the situation and keep it on you in case something happens when you are not home. Descr. the situation and where to take you - if you already had the consult with the good brain surgeon who already reviewed the case and refused to operate what is his name/hospital so he can be contacted and may agree to operate emergency.

[D.ap]

Jussi
I agree with Olga
You have a truly great health care system
However you have a sucky disease

Ask your doctor if the Keytruba continues to shrink the brain tumors if they would consider surgery at a later date ? As a palliative effort to reduce tumor tissue
It sure could give all a win win situation
You would have less tumor load and the doctors can investigate the success of Keytruba

How are your headaches ?

[D.ap]

Morning Jussi and Mikko

I found this article of brain surgeries and ASPS patience plus others

When the results are in with next scan I hope the doctors will consider a surgical consult to help continue the elimination of the brain tumors.

https://www.ncbi.nlm.nih.gov/labs/articles/20039192/

It's a pay to view but the summary gives lots of info specific to 27 years of info of brain tumor removal from Ewings to ASPS patience .

[D.ap]

Sorry corrected above post
Not specific to 27 year old but to 27 years of studies on brain tumors and surgeries

I especially like the quote at the end of summary


"Finally, it seems that surgical indications for multiple brain metastases from sarcoma have increased during the last ten years."

[arojussi]

My headaches are mild, but I started having more problems with my vision. Sometimes it is difficult to read and focus my eyes in one tarcet. I still use pazopanib 400 mg per day, because when I stop it completely headaches turn way worse.

It is very likely that 2 biggest tumors start growing again sooner or later, so we need a plan for that. It is possible that radiation, pazopanib, keytruda compination could kill tumors over 2 cm, but I cant count on it. I see no medical reason why surgery wouldnt be possible and effective for the 2 biggest tumors. As long as the only reason not to operate is that there is 20 tumors, I think we continue to try to find somepody willing to operate, when biggest tumors start growing again. Waiting until tumors cause emergency, would give me poor change to survive. Of course if new tumors appear it will change everything, but so far that hasnt happened. I need to talk to neurosurgeon again, because most likely I am missing something. Last time I had very short interaction with a surgeon. I am ok with the possibity of dieing during surgery.

Yes i Know that statistically we have good heatcare, but because I have disease that is so rare that doctors dont have to know anything about it, it is hard to not feel disappointed. I know I had advantaces that most of us dont get, but we had to fight for them very hard. By the way universal hospital that treated me first still doenst recommend surgery for asps. I mean any surgeries. One patient was 2 years on TKI before having her main tumor removed.

[Olga]

You can talk to the neurosurgeon on a basis of the worsening symptoms and the surgery needed to improve your quality of life. Explain him what is happening with your vision, headaches and that the results of the last scan are stable or smaller for all the tumors, so the plan is to surgically remove the biggest mets as statistically they are the ones that could fail among the rest (mets that are bigger than 20 mm are more often incompletely dead after the irradiation) and that they are most likely the cause for the symptoms. Given that the rest of the mets are stable, it is very reasonable to ask for the surgery to improve your quality of life, most of the systems are against the surgery in a multiple mets setting when there are no symptoms but will treat them as a palliative measure when the symptoms worsen and significantly affect the patient's quality of life. Make it known that your QOL is affected.

Re. universal health care - its obvious upside is the care for everyone but its downside is the resources are limited, treatments are regulated by the ruls and cases like ASPS falls trough the cracks. Thanks to single case articles, doctors publishing small groups studies and scientists working with the rare diseases there are still some supporting articles but in general in all universal health care systems (Canada, UK, Finland) we feel that our patient's are not treated aggressively enough. We had few patient's who died in UK with the brain mets operable potentially but nothing was done as they were multiple mets/organs cases and they do not operate then to use their limited resources in an optimal way.

[Jorge]

Great news, Jussi! Am really happy for you.
I'm sorry to hear you have vision problem and can't focus your eyes.
--can't focus your eyes: that's probably a side effect from Pazopanib. I know several Chinease patiant having Pazopanib said they coudn't focus their eyes.
--the dosage of 400mg: How much do you weight? The effect of low dosage of TKI reduces a lot (understood you use it to control the brain swelling from radiation); Low dosage TKI can develop resistance much quicker.
--vision problem: Do you go to a ophthalmologist? You should go and ask the ophthalmologist to check your optic nerve. George's optic nerve were dying due to the intracranial hypertension after Gama Knife. If the intracranial hypertension can't be relieved in the short term, the optic nerve would die and can't be alive again.
This can be another reason that the bigger met can be removed?
--untreated small brain mets: have you think of radiating them like last time?

[arojussi]

hopefully vision problems are side-effect of Pazopanib. Yes I take it mainly to control brain swelling.figured it was better than cortisol. At first i wanted to take a break from it all together, but soon after my fifth keytruda I experienced horrible headache, so I returned to Votrient. At first day 800 mg a day. I had worst problems with vision the very next day, but headaches were tolerable again, so i continue with 400 mg. I weight around 60 kg.

My physicist told me that radiation would not make me blind. (One of the few side-effects that I couldnt tolerate.) I havent seen ophtalmolocist lately. Yes I hope to radiate remaining 7 tumors like last time.

[D.ap]

Hi Jussi

Just checking in to see how your headaches are being managed on 400mg of pazo?
Its my understanding that cediranib can control edema if needed but I'm not familiar with pazopanib ?
Your next brain scan will be in January?
You've checked in with optometrist ?

Just thinking of you today

Debbie

[arojussi]

400 mg of pazo seems to control my headaches very well. My vision problems are almost gone, so I believe my optic nerve is fine. Vision problems were relly annoying when I tried to play computer. I was supposed to have scan now, but they wouldnt take brain mri, because last one was about a moth ago and just taking mri of torso doesnt seem helpfull right now, so we just canceled the scan. I hope to have brain mri some time in december.

[arojussi]

Tomorrow will have another doctor appointment. I will hear what they learned about my main tumor and lung met samples. Lets hope PD-1 is positive and MSI is high. Those are (as far as I know) best predictors for Keytruda response. Of course lung mets could be negative and brain mets positive. So we cant say for certainty.

I have been having some slight headaches, but they can be my usual tension headaches, because they definetlty arent worst in the morning.

[D.ap]

Hi Jussi
Was your lung tumors, required as a result of taking Keytruba and part of a trial ? Or tissue from your Germany laser procedure ?

I couldn't remember if you were taking Keytruba thru a trial or not.
Also is it your understanding that the mitotic rate on the pathology report after the primary is removed, could give a hint to a patient's MSI rate ?

Johannes and I briefly touched on this discussion
http://www.cureasps.org/forum/viewtopic ... lity#p9002

[arojussi]

That moment when it is 5.00 am and you just found out that nothing is wrong with your hormones. It is just that your internal clock is so messed up that your cortisol cant be accurately measured in 10.00. I saw the doctor Friday and he didnt want to give me keytruda, because of low cortisol 50 nmol/l. Actually to my circadian rhythm that is normal value and any higher would indicate cushing. We had new blood test and I hope that will be enough to convince doctor to give me my 7th dose. Worst case: he want so wait for brain mri to rule out keytruda side effect, but that would be crazy.
One good thing: My new doctor doesnt think I am crazy for considering surgery. Actually he was recommending it. Now we just have to find a surgeon.

[arojussi]

I get keytruda off label. Doctors just were curious about histological state of my disease.

[D.ap]

Olga is on target
LITT is going to cause swelling and surgeries will debulk /vacate with margins the larger tumors but later tumors can be taken care of IF NEEDED as Keytruba may eliminate the small tumors. So hoping Jussi.

Let's look at that local surgery first
You have both options it sounds like Jussi and Mikko ?
So want the best for you.
Hugs
Debbie