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

[arojussi]

So I am just updating my ideas about my situation: tumor in my cerebellum must come out. Otherwise brain swelling will kill me before we have time to try sutent, ceridinib and other drugs. Pseudoprogression or radiation necrosis is still possible, but unlikely. So lets have surgery on that met and if biopsy reveals living tumor sells then surgery on second big met too. If biopy reveals immunological progess, then maybe I should continue keytruda. I know pseudoprogression at this point is very unlikely but possible. I seen some really weird responses to immunotherapy, so only way to be absolutely certain if keytruda is working is biopsy. Because asps long term prognosis is excellent and I can live years with Sutent I think brainsurgery is indicated. Without brain surgery brain swelling will kill me in days or weeks. Surgical removal of met, that is causing swelling is easiest and most effective option, so skilled neurosurgeon should choose surgery as a method of controlling my brain swelling. So if universal hospital where I study dosent want to do surgery. Then I simply go to er, where they have to deal with brain swelling.

[D.ap]

Hi Jussi
Which doctor made known of life threatening swelling ?
Absolutely swelling is dangerous .
You are still on steroids as per that doctor ?
Whether swelling is from tumor or Keytruda / pazo and is causing dangerous shifting and or pressure, it needs to be dealt with immediately

[arojussi]

No doctor has yet mentioned life treating swelling. But in scan there is clear growth and increased swelling and my neurological symptoms are still there and cortisol doesnt seem to manage them, so this swelling is forming very acute danger. When I saw doctor last Thursday I didnt realise this, because I was so shocked by the fact that Keytruda isnt working, but during weekend it has become clear that swelling must be dealt with quickly. I can hang in with cortisol, but I see no reason to wait any longer than necessary. so hopefully we can get neurosurgeon to plan about surgery in few days.

I am scared, that they will give me same answer as last year, that my disease is too far and even palliative surgery would waist of hospital resources. Of course now I am in immediate danger. I wasnt back then. I am also worried about leptomeningeal spread, but arent asps brain mets often capsulated?

doctor already mentioned hospice care, but there is still several treatments I havent tried, so I dont think it is time yet.

the idea of going to er isnt my own, but if neurosurgeon doesnt want to do planned surgery, then going to er seems my only option.

[D.ap]

Found this on forum under metastic treatments / Brain

http://www.cureasps.org/forum/viewtopic ... =797#p8127

"The authors' results suggest that in selected patients, resection of metastatic sarcoma to the brain is associated with a relatively low risk of operative death and results in improvement in neurological function. Patients with systemic control of their primary disease and certain histological subtypes (specifically alveolar soft-part sarcoma) have improved overall and progression-free survival."


You've had your primary successfully removed , you've had both lungs initially removed of tumors by Dr Rolle and have had multiple brain tumors ,13? Treated a year ago, correct?
Your biggest 19mm untreated tumor had been reduced to 15 and looks to be 17mm currently by the Keytruda ., However for whatever reason , immune therapy or otherwise ,the edema is causing fluid build up and neurological symptoms .

You are of good health are in my opinion a patient that has maintained "systemic control " of your disease and are in need of surgery to alleviate neurological symptoms.

[Jorge]

Sorry to hear about the progression on the treated met.The neurosurgery must be scheduled soon, or the regrowth can be very fast--My huasband experienced regrwoth from a failed Gama Knife treated met before. The met grew from ~1.4cm to over 3cm in 2 month.

I'm shocked to see "doctor already mentioned hospice care". I don't understand how can the doctor suggest this to such a young man.
My husband had simialr situation like you before. He only had brain mets at that time; the 2 big Gama Knife treated met regrew; besides, there were about 10 small mets other than the 2. But what's better than your situation is his other 10 mets were also treated by Gama Knife.

When I was pursuing neurosurgery, most doctors refuse to do the surgery. I remember here are how I persuade the surgeon to oeprate on my husband. See if it's useful for you.
1. The nature of this disease, the course of the disease is very long. --Your expecience of living with the brain mets for about 1 year is also a speaking prove!
2. He was in very good health condition.
3. Our expetation is to extend 3 months of life.--although I belived the surgery can give more than that, I told him my expetation is only 3 month.
4. He tried every possible treatment, and no one works. Surgery is the only option.--in your case, you've tried Radiosurgery, TKI and immunotherapy, too!
5. I'm willing to take any consequence from the surgery. --However, you must verify the aptitude/capability of the surgeon and the hospital first! and you can increase your requirements after you're admitted and prepared to the surgery.

Good luck!

[arojussi]

So first surgeon we contacted doesn't want to do surgery. Instead he wants to but me on permanent cortisol treatment. He couldn't give any reasons why cortisol would be better than surgery. I contacted 2 of my old class mates from the medical school. One of them knew that this neurosurgeons clinical career is mostly over. So we need opinion from other neurosurgeon. If all neurosurgeons in Finland refuse then we must have litt or surgery in china. But we have hurry, so lets hope surgery can be done in Finland.

Thanks for all support.

[Olga]

Jussi, there are probably some other experienced brain surgeons in Finland - you have to work hard on it. Also I would request the personal meeting with that neurosurgeon and ask him why, or even write to the head of that hospital a letter that would suggest them that the lawsuit is may be coming as you have a reasonable treatment plan with the other ASPS patients case quoted that is being denied. You have to fight for the right to have a surgery.

[Olga]

Do you want to ask Dr.Rolle to find you some good quality neurosurgeon in Dresden and to refer you there to get a scan review and a price quote? After all you are still his former patient at the hospital.
Also laser ablation is used increasingly for the brain mets but is probably not avail. in Finland http://www.rwjuh.edu/laser-ablation/laser-ablation.aspx

[arojussi]

Thanks Olga. Laser ablation is definetely a possibillity. Only problem is that I would have to travel to Clevland for laser ablation and ablation would take all of my fathers moneys. China is still optimistic that they can treat all my small lesions. Radiologist looked my scan again and there is growth in 2 radiated lesion (little growth) and 2 new ones. These changes could still be from radiation necrosis or keytruda response and we caught them in time. Universal hospital (kys) has several times refused from participating my treatments and my brain tumors were missed several times by their radiologists, so now they believe I am terminal and sooner I die sooner problem goes away. Medically it is insane, but we cant force them to treat me. So I think we should ask from (hus) biggest universal hospital in Finland. They resected my primary and my bone met, so they know benefits of surgical treatment in asps.

[Olga]

The laser (or thermal like it is called sometimes) ablation for the brain tumors is not only avail. in Cleveland now, there are other numerous places and probably in Europe too (I would try Germany). But of course having the treatment in your own country and paid by your own health system is beneficial from so many points of view incl. possible complications.
I am not sure re."we cant force them to treat me". People successfully fought their health systems many times before, it takes persistence and an educated approach - you have to build and prove your case and appeal to their upper management/health authorities, that the reasonable palliative measures are denied for you, outlining what are the measures, and what is the proof they can be effective. Or you take a specialized lawyer but it is more expensive. But if you can have your case reviewed by the biggest universal hospital in Finland (I am pretty sure you have a right to get a second opinion from them), it is even better but try to do it in a most official way, requesting all the records of their board meetings when they discuss your case and all the answers (if denied surgery) given to you in a written form. Even request like that makes them feel more accountable, when they have to give you the reason for their decisions on record.

[arojussi]

Thanks I hate idea of lawyers, but neurosurgeon cant give valid reason why he doesnt want to do surgery, so asking written document about it should but pressure on hospital and surgeon. He cant say it is not operable, because location is easy. He cant say cortisol treatment is an opinion, because of my mental health problem. He would have to lie in his document. One doctor in kys has lied to me before. (He said that whole brain radiation could be as effective as stereotactic radiosurgery. Even I know it is a lie.) so we should be able to pressure somebody to do the surgery. I just hope we have enough time for this fight.

[D.ap]

Hello Jussi
Dang it to put it lightly for the answer or lack there of from your neurosurgeon .
I'm thinking he couldn't discuss the cortisol conflict as he didn't have all your records to review? He was new to your case?
Even so , he should of said he'd get back to you rather than not listening to your concerns

I hope you've been able to make an appointment with another neurosurgeon .
Get some sleep and make it a priority tomorrow to find another to talk to face to face.
What role does your primary oncologist play in advocating for your wishes?

Remember that you are feeling the with drawls of the dexa and ask for help in getting that appointment made .
If not your family ,then ask a good friend to help.

Night my friend

[arojussi]

This neurosurgeon was most likely one central doctor behind decision to recommend whole brain radiation to me. He is professor, so it looks convincing when professor says stereotactic radiosurgery isnt an opinion. As we remember I refused from whole brain radiation and had srs instead.

[D.ap]

Central doctor or not , get the written report of the meeting and certainly ask for surgery again. The written report gives you a better understanding of how to approach the denial. Olga is correct on both statements..you are your best advocate and they need to have a medical basis to deny you proper care.

Get an appointment. You maybe surprised with a doctor that will go along with the surgery if you make it clear that's what you want to pursue.
All health professionals want to see patient involvement . Clinically, they want to see that you care enough to participate in your own care, if that makes sense.
You've already let your doctor know of not needing hospice , so they need to see that you are serious in making that statement .
Make that appointment and then do something fun.
You've been thru a lot and deserve it .

Love
Debbie

[arojussi]

Big feels are rolling. My former oncologist is doing everything possible to push for surgery. He is now relatively big boss with lots of influence and huge reputation as skilled oncologist. Only problem is that stubborn professor of neurosurgery doesnt feel like doing surgery, but like I said he can give any valid medical reasons against surgery. In Finland they do palliative brain surgeries for brain mets in breast cancer. In asps benefits are way bigger. So kys can say they dont do surgery, but they cant give valid explanation why. Symptoms from my cerebellar met are very severe by now, so if kys doesnt want to do surgery i will simply have to go to er soon.