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

[arojussi]

I need info about opdivo and yervoy combination. Keytruda isnt working, so pd1 and ctla4 inhibitors are what we are trying to get next.

[D.ap]

Nivolumab and Ipilimumab versus Ipilimumab in Untreated Melanoma


http://www.nejm.org/doi/full/10.1056/NE ... Discussion

Phase 3 Study of Nivolumab or Nivolumab Plus Ipilimumab Versus Ipilimumab Alone in Previously Untreated Advanced Melanoma (CheckMate 067)

https://clinicaltrials.gov/ct2/show/results/NCT01844505

[arojussi]

Thanks for usefull links.

rdiologist wasnt very accurate, but there is clear growth. We asked for more detailed report.

There is one met in my mandibula around 1 cm, it is pushing to soft tissue. I need srs or cryoablation for that.I prefer cryo. Met isnt painful yet.

Tumor in my cerebellum is now 1.7 cm and growing, so I need surgery or Litt for that. Most likely Litt, because in Finland surgeons consider my disease too widespread for surgery. I already send my doctor overwhelming evidence supporting brain surgery in asps even in metastatic setting. Also when this met grows mass effect and edema fill cause severe symptoms and soon painful death, making surgery indicated as palliative operation even if my disease isnt curable. Only real problem is how we pay for Litt. There is also few new brain mets and some small growth in old ones. Thank God chinese doctor my dad contacted seems very skilled and I trust he is able to manage my current and future brain mets with gamma knife.

Biggest problem is that all these operations must happen fast. I am not sure what should be done first. Biggest brain mets are most dangerous, but complication during brain surgery could delay other operations, so if we can get cryo and gammaknife done quicly, maybe we should start with them. Also in brain surgery there is longer recovery time than cryo and gamma knife, which are outpatient operations. In past I have recovered from these operations in day or two. My best quess is that big brain tumor will be livetreatening in 2 moths.


So I would love to try aggressive local treatments for all my current metastases, before ipi nivo combination.

[Olga]

Jussi - the biggest brain met can not be resected after the radiosurgery soon as there is a swelling from the radiosurgery. I would say it needs to be done first - but if it is accessible. I would tell them that you are already having the problems with it caused by its mass/size, even the met of 10 mm is able to cause the problems. Just read what side effects the met in that location would typically cause and figure out if you are having these symptoms.
Recovery after the brain surgery is pretty fast.

[arojussi]

Thanks Olga. You are absolutely correct. Tumor is in my cerebellum. It is easily resectable with surgery. I already have symptoms from this met. Headaches, balance problems and problems with coordination. I am currently on cortisol for keytruda related stomach problems. I tolerate cortisol very badly, so only way to relieve my brain pressure in long term is surgery. My cortisol course will end in 2 days and after that neurological symptoms will soon be untolerable.

[Olga]

If you feel that it is getting worse, you should go to ER or call ambulance. It is also not a good idea to be on cortisol for the people with oncological conditions for to long.

[arojussi]

My cortsiol course is only 10 days. I had to start it when my diarrhea and stomach pain were becoming untolerable. We reacted to problem immediately after I couldnt denay that My diarrhea was getting worse even after stopping pazo, so it had to be related to keytruda.
Dexometasone gave immediate reliev, so it looks like I will survive with sort course of dexometasone.

I really hate cortisol related dide effects. My history with mental problem is also contraindication for cortisol treatment, so brain surgery truly is my only opinion for treating brain swelling and brain swelling have to be treated. I am pretty sure it would be illegal for hospital to refuse to treat life treating brain swelling.

[D.ap]

Hi again Jussi
I'm so sorry you are experiencing these happenings with Keytruda and corticoids.
Addressing the larger growing tumor seems like a good plan to pursue.
How big was the 1.7cm tumor 2 months ago?
found your post back in January
It's was 1.5 cm in January
It reduced from 1.9cm in November / December of 2016, it appears .

I can't seem to find a post from you commenting on it.
About how long have you been off pazopanib?
Did you stop at the end of 25 days when you discontinued the pazo?

[arojussi]

Tumor was 15 mm in january. Then stable two moths ago. Now there is few mm growth, so I assume it means, that tumor is arond 17 mm in dimameter maybe more maybe little less it doesnt matter. There is growth so it must be dealt with. Radiologist simply measured edema and tumor as one mass, so we dont really know how many tumors grew, because edema as itself can still be just a sign of inflammation and or reaction to radiation. At this point pseudoprogression doesnt explain all changes in the scan, so cerebellar met must be operated, maybe second big met too, but we must first know if central area of the tumor is growing or just edema.

I been taking preaks from pazopanib before. After diarrhea started I was 5 days without pazo, before starting steroids.

[D.ap]

Thank you for the clarification , Jussi .
Your post last year talked of the surgical removal of the cerebellum tumor.
I hope you will see a surgeon and your radiologist soon to help make a desicion soon to move forward .
Are you still taking antibiotics ?
I was reading that some CY? Type meds can make pazopanib ineffectual and are recommended to not be used when taking pazo

https://www.accessdata.fda.gov/drugsatf ... 465lbl.pdf

Also it appears that pazo has a greater percentage of reports of patients with diaherra than Keytruda.
I'm seeing 52% verses 20% ? However everyone is different . The stomach pain is reported happening with both meds too.

Are you going to go back to Keytruda after you are off the corticals, or will you continue the dexo for the swelling ?

[arojussi]

Pazopanib have been making me more like constipated, so keytruda related autoimmune reaction is most likely explanation. Keytruda clearly isnt working, so I most likely need new treatment. Ipi nivo was my first idea. Doctor (i saw this doctor first time this week, he seems nice.) doctor's first suggestion was sutent and because I need something for brain swelling and pazo isnt shrinking tumors I saw no reason to refuse. Doctor suggest that I would start sutent next week. I would be few weeks on it then break, but because I need it for brain swelling I think Continuous dosing would be better. Doctor promised to contact neurosurgeon personally. I dont think sutent will be sufficient for swelling in the long run. I will know more next week.

[jcs2007]

Hey, I just wanted to add that my son recovered from his brain met in the cerebellum and the neurosurgeon acted quickly to get that tumor out and he started steroids right before surgery but was off within a week after surgery. He then did 1 gamma knife treatment 3 weeks later and no more headaches. Best wishes in your upcoming treatment/ surgery.

[arojussi]

Glad to hear.

[arojussi]

How big was your son's cerebellar met?

[D.ap]

Jussi
Here is a link to Sam, Cindys son, and the size of the tumor .

http://www.cureasps.org/forum/viewtopic ... t=15#p9802