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

[arojussi]

I had severe headache and vomiting yesterday, but it was all better today. If my blood work ia ok and my conditon deosnt get worse again I might get my first keytruda dose tomorrow in private hospital Docrates. If all goes well I will later get my keytuda in my universal hospital, which would be great because keytruda is not cheap.

[Bonni Hess]

Dear Jussi,
Thank you for so thoughtfully keeping us updated and apologies for being so late in responding to your several posts. I am so sorry for your yesterday's severe headache and vomiting and Hope that it is now completely resolved and proves to be unrelated to brain swelling from either your brain mets or your radiosurgery treatment. I am still unclear as to what type of radiation treatment that you had for your largest brain mets and am wondering if it was Gamma Knife or some other type of radiosurgery? Having only had personal experience with our daughter Brittany's three Gamma Knife treatments, I can only speak to the side effects and results that she experienced with the Gamma Knife treatment. Following her first Gamma Knife treatment for relatively large 1.3 centimeter brain mets in her parietal lobe and cerebellum, she experienced continued, increased, and unresolved brain swelling that caused severe headaches and vomiting requiring high dose Decadron treatment and innumerous emergency room visits and hospitalizations for a period of five months until she finally underwent a craniotomy to resect the two continuing growing tumors resulting in the loss of her peripheral vision, but thankfully successfully completely removing the two tumors which unfortunately had apparently been too large to respond to the failed Gamma Knife treatment. Subsequently, with vigilant and frequent brain MRI's every three months, Brittany's new brain mets were able to be found and diagnosed at much smaller sizes than her parietal and cerebellum tumors had been, and her next two Gamma Knife procedures were very successful with much fewer and much less severe post Gamma Knife side effects which relatively quickly resolved, and the treated mets very thankfully ultimately completely disappeared after Brittany began her Cediranib systemic treatment in 2009. I am so grateful that you are going to be able to start the very promising Keytruda systemic treatment Hopefully today, and am holding very tight to Hope that it will be very successful in stabilizing the progression of your disease, preventing any new mets anywhere in your body, and in shrinking and destroying your existing multiple brain mets. Take care dear Jussi and keep in touch with the Board as you are able. Reaching out across the miles to embrace you with special hugs, deepest caring, healing wishes, most positive thoughts, and continued Hope, Bonni Hess, mother of now 34 year old Brittany diagnosed in July 2001 at age 19

[arojussi]

I might have confused this before sorry. I was not treated with gammaknife. I had rapid arc radiation in Docrates private clinick. Some doctors think that most important thing about radiation treatment is the experience of the machine user and the machine used would not be the most important thing.
I had first keytruda today. We had to pay it ourself. Doctor in my universal hospital tried and hopefully keep trying to get Keytruda for me, but so far my universal hosptital doesnt want to pay 6000 e/moth, if they can find an execuse, so they say, that they wont pay, because there isn't/there can't be large double blind studies about asps and keytruda. My earlier vomiting ended in less than 24 hours and hasnt come back, so I try to stay without cortison for now, to increase the effect of keytruda
P.S I never felt that you would respond slowly. This forum has truly offered me a lot of support in this very difficult time.

[Bonni Hess]

Dear Jussi,
Thank you for your prompt response and the helpful additional shared information. I am personally not familiar with the rapid arc radiation treatment but am very Hopeful that it will be very successful in shrinking and destroying your treated brain mets. Was the treatment administered in a single session as is done with Gamma Knife, or over several sessions as is done with Cyberknife? I am so grateful that you only had one post radiation vomiting episode and that it has now resolved. I am grateful too that you have now begun your systemic Keytruda treatment, but am so sorry that you are currently having to pay for the very expensive Keytruda medication privately. Perhaps if you can research and provide some data and documentation of proven ASPS treatment success with Keytruda such as Chinese ASPS patient George from this Board appears to be having, you will be able to appeal for a Compassionate Use exception for drug coverage from the Keytruda pharmaceutical company and/or your universal hospital. In the meantime, I Hope that you tolerate the Keytruda well and that it will prove to be very successful in stabilizing the progression of your disease and shrinking/destroying all of your mets. Perhaps when Olga returns from her trip to Germany with Ivan for his pancreatic area met surgery and her time allows, she will be able to move your updates to the Keytruda topic where it can be more easily followed by those who are interested in this promising new treatment. Take care dear Jussi, stay strong and holding very tight to Hope, and keep the Board updated as you are able.
With deepest caring, special thoughts, healing wishes, and continued Hope,
Bonni

[arojussi]

I had my radiation in four sessions for 13 tumors. Session usually takes about 30 minutes and most of it is preparations.

[D.ap]

Jussi

How are you feeling today ?
What dose of cortesoid are you on?

Is the hope in using keytruba at this time?
The votrient will be used in addition to the keytruba?
I know that axitinib and Pembrolizumab are in clinical trials here in the US. Any information of success stories in the combinding of the TKI and immune therapy?
Wishing you a good remaining day , Jussi.
Love
Debbie

Axitinib and Pembrolizumab in Subjects With Advanced Alveolar Soft Part Sarcoma and Other Soft Tissue Sarcomas

https://clinicaltrials.gov/ct2/show/stu ... oma&rank=3

[arojussi]

We already told them about George and many other ASPS patients using Keytruda. We also had several studies about Keytruda. One study where ASPS used PD-1 path to escape from immune-system. ASPS is also very similar to melanoma and Keytruda is approved to use in melanoma, so my hospital should know that keytruda is superior to pazopanib in ASPS and especially in ASPS brain metastases, so they are just saving money by refusing to treat me with the most effective way. In Finland we are very proud that we have free and effective healthcare system. It doesnt feel that way now.

I stopped my cortison day before my first Keytruda treatment. I still have some headaches, but they have been tolerable.I still use Pazopanib in addition. Most studies I found recommend to use PD-1 antibody and TKi-inhibitor in combination. One ASPS patinet used interferon combined with antiangiogenic drug and had benefits, so I hope Keytruda and Pazopanib work the same way. Also when radiation and pazopanib were used in combination the effects were superior, compared to radiation or pazopanib used alone, but this study was done on mice. I havent been very tired and I usually walk 2 - 3 km a day. My skin looks horrible, but I have 300 mg tetracycline-antibiotic for hat. Tetracyclines might also have some anti-cancer qualities, but I am not certain about that.

[arojussi]

Sad news. Tumors havent shrink. There might be some 1 - 3 mm growth.

[Olga]

Are all of them showing that growth and no shrinkage? It is pretty unlikely that none of them responded to radiosurgery that was done before Keytruda. Or you mean - untreated tumors did not shrink? Read on pseudo-progression that is pretty common with Immune checkpoint inhibitors (ICI):
http://www.cureasps.org/forum/viewtopic.php?f=70&t=1243

[Bonni Hess]

Dear Jussi,
I am so sorry that your mets have not yet shown any shrinkage and that there may be a small amount of growth. Since you didn't mention anything about having any new mets, I am assuming that the scans didn't show any new ones which is very encouraging. I share Olga's questions about which mets have been unresponsive to your treatment and have had some possible increased growth? It is my great Hope that the growth is actually ICU pseudoprogression and that continued Keytruda treatment will begin to shrink your mets and stabilize progression of your disease. Please take care, stay strong, hold tight to Hope, and keep the Board updated as you are able.
With special hugs, caring thoughts, healing wishes, and continued Hope,
Bonni

[arojussi]

Well we dont have radiologist answer yet, but me and my oncologist watched the pictures. Lung metastases were maybe smaller. Big brain mets that were treated with radiosurgery looked stable. Small bain mets that were not radiated had grown 1 -3 mm. It is too early to tell if keytruda is working. I think that small growth in brain mets indicates that votrient isnt working for them.

[Bonni Hess]

Hello again dear Jussi and thank you for your prompt response with the additional shared information. It is encouraging that the lung mets may be smaller. It seems that the brain mets that were treated with radiosurgery should be starting to shrink but it is good that they are at least stable with no increased growth. Is Keytruda thought to be/known to be able to cross the blood brain barrier to help shrink brain mets? I will be anxiously awaiting the radiologist report in order to have more definitive information regarding the actual status of your lung and brain mets. More special caring thoughts, healing wishes, and continued Hope, Bonni

[arojussi]

I am really certain that keyteuda crosses blood brain barrier.

[Olga]

1. yes, Keytruda crosses blood brain barrier - there are cases of the brain mets response in other cancers.
2. the size of the mets treated by the radiosurgery should be bigger than before of the treatment independent of the possible growth as the target always covers the bigger size than the actual size of the met to give the safety margins to compensate for the possible deviation errors. Ask the treating radiologist what was the planned coverage or safety margins to know what the necrotic area size should be. They probably have been even bigger and shrunk a bit now but are still bigger than the before treatment size.
3. We do not have any info about the cases when pazopanib was able to reduce ASPS brain met (at least I don't).

[arojussi]

Hio from a long time. I had 4 doses of keytruda so far. My skin still looks horrible, but skin rashes like lichenoid dermatitis and viltigo may actually correlate with better response to keytruda. I havent seen any viltigo yet. After keytruda my acne turned into bigger spots, despite antibiotics and some spot have turned purple. (At least my dad thinks they are purple.) purple spots are typical for lichenoid dermatitis. But I cant be sure, because I haven't completed the course of skin diseases yet.At the moment my headaches are mostly gone. I still have some problems with vision and balance, but they are not as bad as they used to.

Few weeks ago I had terrible headaches i slept most of the day and couldn't move my head without terrible pain. This was when I tried to take break form pazopanib to heal one annoying wound. After I continued pazopanib my head felt better. Our theory is that even if tki doesn't help with brain metastases it might help with the brain swelling.

We still try get contact with cleveland clinic about litt for 2 biggest metastases.

In less than 3 weeks I will have brain mri to see if Keytruda is working.