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

[D.ap]

Jussi

I'm with Olga. Please don't get down . I feel like the regiment with Keytruda and pazo will continue to be the ticket for your brain tumors.

How's your weight doing for you ?
How often is your thyroid checked ?

So we've had all brain tumors , radiated non radiated,skull tumor , resolve. The only non effected tumor is our 1cm LITT treated .

Hope today is a better day for you .

Love
Debbie

[arojussi]

This going o be hard to explain but I try. It has been around 6 moths singe my last radiosurgery and 5 moths since I started keytruda. If radiosurgery and keytruda and pazopanib havent completely killed two biggest tumors they might start growing any moment now. If they start growing again my brain tumors can grow and multibly quickly. My brain tumors first appeared in marh scan and less than 3 mohs later I had 20 tumors and two over 2 cm in diameter. If that kind of growth happens again I will die and there is nothing we can do about it, so I try to prevent it with any means available. Biggest tumors most likely send nutrients and growth singnals to smaller tumors. We cant be certain if two biggest tumors are alive or dead so safest option is to radiate them again now when they most likely are small enough to be killed with 20 grays of radiation.

Keytruda has most likely worked for me, because all tumors have shrunk and there is no new ones, but most likely I wont have complete reaponse. Keytruda response can last for years, but after that I would need radiosurgery anyway. In theory keytruda response can last forever, but it is so unlikely that i cant count on it.

If we radiate 7 untreated tumors and 2 big ones now, it is realistic that all 20 tumors might die or at least 19. I am not certain how big the biggest tumor is now, but if it is the only one that survives we can use litt or sugery for it later. Another radiosurgery can cause neurological damage, but first one didnt do any permanent harm and that was way more aggressive than the one I am planning now. So the idea that new radiosurgery wouldnt be worth it, because of the neurological damage doesnt make sense to me. When I had tumor in my femor, surgeon told me that he didnt want to do hip replacement surgery, because I was so young. Without surgery I would have died in few moths. This is exactly like that.

My weight is around 58 kg qnd my thyroid is xheced before each keytruda. Ths is little high but it means nothing so we test thyroxin next time so far no symptomps, so my hormones are most likely fine.

[D.ap]

Jussi
Olga suggested asking for a mri maybe monthly if you can.
That could possibly give you a better sense of peace of mind .
I really understand your concern about brain tumors and how serious they can become.
You are on your 8th or 9th infusion of Keytruda.

Our 9mm skull tumor appeared in April 2016
We started Opdivo in mid June and it did not reduce at all on the August or the October mri , but resolved these last 3 months . Disappeared .That was between our 7 and 13 infusion .
I sure know the feeling that waiting can bring and my heart goes out to you .
Having a MRI sooner than later would give you a view of the tumor and a piece of mind at the same time .

[Olga]

Jussi - they are probably talking about the long term neurological damage not the immediate deficit or the location of the in question tumors is different.
Have you had a PET scan? It would probably show the activity of the two biggest treated with the radiosurgery tumors. Right now they might be even dead and no doctor would agree to treat the tumors again without any proof that the previous treatment failed. Necrotic tissue from the previously treated tumor dissolves very slowly and it can take years to go away. How long ago was the radiosurgery done? Is it 6 months already?

I disagree with you on two points: 1. Biggest tumors most likely do not send nutrients to smaller tumors. 2. If the primary was not resected fast - without surgery you would not be dead in few moths.
You need to put on some weight.
Find out of Opdivo is avail. locally - to prepare in case you need to switch fast. Send PM to Deb and get the contact info from her re. the oncologist who treats Josh for the confirmation of the ASPS response.

[arojussi]

I remember reading once that tumors interact with each other but it was a long time ago. When tumors are close to each other it might be easier for them to create favorable micro environment and grow faster. I have believed that this was one of the reasons why my brain tumors grew so fast, but this is pure guess.

Opvido and keytruda are very similar so if keytruda stops working Opvido is unlikely to work. I think in melanoma forum they have tried opvido after keyruda, so it is always an option. Personally I would like to try adding yervoy to Keytruda first. If I get really desperate might have to try interferon again. For now keytruda is working and after there has been response to it. Response is likely to last long, but there is no guarantee. These are reasons I wanted to radiate as many rumors as possible now that they are smallest, but it is not my decision so just have to hope keytruda works long time. I think my doctor meant long term side effects of radiation. I still feel that benefits of radiating are far greater than cons. Many studies say that resecting all known brain mets correlates with better survival. Of course these studies were done with regular surgery, but radiosurgery should be just as effective for small mets. By the way doctor is certain that big tumors are dead, so I understand his decision.

We suggested pet-scan, but doctor doesn't think that will help. So we just try to get mri:s as often as possible. Thanks for answers all they were really helpful.

[Olga]

Jussi - there are few subjects in your post that I have no clear understanding now of, but some sense that it is not exactly the case as it is stated. Just to discuss the subject (and add more confusion):
1. Re. tumors interactions - it is a complex issue as for example some of the factors produced by the primary tumor are distant mets promoters and some are actually inhibit the distant mets growth.
Primary melanoma tumor inhibits metastasis through alterations in systemic hemostasis.
https://www.ncbi.nlm.nih.gov/pubmed/27048169
so it is hard to say what is happening in every separate case. But in general we always advocate to take all the avail. actions to reduce the tumor load if possible without significant damage to the patient's body.
2. Re. if keytruda stops working Opvido is unlikely to work - I am not sure about it as we saw the examples that diff. TKI work very well one after another esp. if there is some wash out period in between them. We need to read more on the boards of the diseases when it is a more often used one after another (we need to check the diseases when these drugs were approved both and find the forums to read).
3. Re. PET scan - it is useless for the small brain mets but would be interesting to see its reading for the bigger treated brain mets - they were fast growing, metabolically active and its PET now would show the activity.
4. You might wait till the next MRI and ask your radiosurgery dr again re. radiosurgery for the brain mets if they are still there, at least for some. They might be willing to do that if the drugs not kill them - I guess this is what they are hoping for.

[arojussi]

My next scan is 10.2 so we look it next. If all tumors keep shrinking we might safely wait wih radiation.

[Bonni Hess]

Dear Jussi, My very best wishes and most positive thoughts will be with you on February 10th for scans that show no new mets and continued shrinkage/disappearance of your current mets so you can just continue to take your current Keytruda/Pazopanib drug regimen and let it continue to work to stabilize your disease progression and shrink/destroy your tumors. With special caring thoughts, healing wishes, and continued Hope, Bonni

[MartinBube]

Hi Jussi,

I can not say much as an advise but Olga, Bonnie and Debbie have shared a lot of good ones for your.

I'm accompanying Bonnie in the wishes and positive thoughts for your scan on the 10th.

Try to win the mental war and stay positive and strong, I know how this sounds and sometimes I can not even apply on me but try hard!

[Vega343]

Jussi,
Just please know we are thinking of you from Lincoln, NE and hoping for good results. I love the logical way you approach this all and am following your case every step. Tons of emotions, but still, and I hate trial and error approach, but asps seems to be this way. Thanks for your updates, you are helping me make decisions for my 10 year old child who is now on a year of stability with cediranib trial, but we could turn a corner with that any day. Praying for the best for you.
Mj

[Jorge]

Hi Jussi,
I share your concerns on the brain mets but it's relieved to know that doctor is certain that big tumors are dead. To verify this by yourself, you can compare the brightness of the lighten up mets in different scans--the premise is the scans are always done in the same scanning parameters. If the brightness is darker than the mets before treated, they're not active. If the brightness of the mets are becoming brighter after some time, than they may regrow sometime.

Other than the 2 biggest met and the 7 untreated ones, what are the rest small treated ones now--are they continued to shrink or resolve?

Many ASPS patients use the immunotherapy, some receive PR but no one is CR so far. On all the cases I've read on this forum or known from the Chinese patients, the small mets can be resolved but the big ones are always the ones left behind--some of them may still shrink after months or over 1.5 year since the immunotherapy, but no patient recieve CR. So I would like to do some local treatment to the big mets to expedite the CR if possible.
What about the lung condition?

It feels to me you're still in stable or continue to relieve status I appreciate your proactive and wish you continuous relieve!

Lynette

[Bonni Hess]

Dear Lynette, Your observation that small mets seem to completely resolve with Immunotherapy treatment while the large ones only have partial shrinkage is, to my knowledge and observations, also true for other systemic treatments. It seems that the effectiveness of currently available systemic treatments is greatly reduced by large tumor burden which is why it is critically important to resect or destroy by ablation or radiosurgery as many tumors as possible to lessen tumor burden and better enable the systemic treatment to work. I have observed this in many cases where the primary tumor is not resected and the patient unfortunately experiences only a small amount of tumor shrinkage and a short term response to the systemic treatment, and ultimately tumor growth and disease progression. Addressing and treating tumor burden is extremely important in obtaining a successful systemic treatment response. With special caring thoughts, healing wishes, and continued Hope, Bonni

[arojussi]

We will meet doctor in Friday to discuss about radiosurgery for smaller mets. If we kill all 7 then I might live.I don't have active disease elsewhere, just brains, Keytruda keeps my tumors stable, but it doesn't seem to kill any of them. Tumors that had radiosurgery are shrinking even the big ones, but the rest remain stable. Lesions are very small one to 4 mm.To me it doesn't make sense to wait until keytruda stops working, because growth can be very fast.

[D.ap]

Hi Jussi
I guess your February 10 scan showed a stable report ?
So you are on your 11th or so infusion with Keytruda ?

The discussion will be about location and the pros and cons of treating those areas with radiation ..
Can any of the tumors be surgerically removed easily?

What day in August ? Did you begin your Keytruda and what MG of pazo are you on ?
Has there been any discussion on pazo being a conflicting drug with the Keytruda?
I'm not aware of any but it would be worth talking about with your hemo oncologist

Love
Debbie

[arojussi]

Now scan show stablity in 7 small mets and little shrinking in radiosurgically treated mets. Sadly there was 3.5 cm necrotic area around biggest tumors. It gives me little symptoms, but lot less than in September. Currently I use 800 mg of pazo. Sometimes I was on smaller dose because of side effects. Most of the smaller tumors are in frontal lobe as far as I remember. It is not vital, but controls thinking and personality. Tumors are way too small for surgery. If 2 biggest ones start growing surgery is most likely option, but only if there is no other tumors growing. Even if tumors are in important regions like optic chiasm, they can be killed now when they are small. In important regions radian dose cant be as high as 25 grays so if we wait growth it might be too late. I got my 10 dose of keytruda last week. I think I started keytruda in 10.8.2016. After first 5 doses small mets looked partially little smaller, but radiologist was unable to measure change. After that small mets have been stable. Risk of mets becoming resistant to keytruda is at this point bigger than benefits of waiting longer. I most likely need radiosurgery sooner or later, and now I would survive with minimal damage and changes of success are best. Most likely I am missing something, so I need to talk with doctor about this.





.