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

[arojussi]

Dried blueberries seems to control my cediranib related diarrhea quite effectively.

[D.ap]

Jussi
Great news!
What do you attribute it to and how did u find out about dried blue berries?

[arojussi]

It was my fTher`s idea. I try to share science behind it when I have more time.

[arojussi]

I still have small subcutaneoes mass in anterior side of my elbow joint. To me lesion doesnt look vascular, so I dont think it is asps met. Those of you, who had subcutaneous asps metastases, did they look vascular?

[D.ap]

Hi Jussi
How was the elbow scanned?
How big is it?
It’s growing in size quickly ?

Josh had a gangilion cysts on his neck removed .Not ASPS.

I don’t know if it showed a vascular tendency .

Do you think a stethoscope—-listening for a bruite sound as well as an ultrasound , might be a good idea ?

[arojussi]

It is very small around 1 cm. My dad thinks it has grown a little. I dont pay any attention to it. Only downside of removing it with small surgery is that I would have to rake break from ceridanib. In theory ultrasound should show if lesion has a bloodflow. If yes then surgery, if no then lets just keep monitoring it.

[D.ap]

Jussi
Been at 1cm for awhile ?
What’s your oncologist think?
With the beginning of cediranib.. does it hurt?

[arojussi]

So just came back from doctor. Situation is bad, maybe not unsolvable, but bad. Something in meninges possible leptomeningeal carcinomatosis, which is immediate game over. If it just one solid tumor in meninge it might be targetable with gamma knife, if it is met. Also growth in two treated lesions. And one tiny new one. As before it all comes down to chinese neurosurgeon`s opinion. He might see more growth or less. If he can target all growing lesions no problem. Also one lesion near heart been there in last scan, but missed by radiologist. Need ct next week, to make sure where it is. One 7 mm new lung met. Ideally Lirttrup can ablate them both. Subcutaneous lesions in my butt and pelvis most likely my lovely acne. Subcutaneous lesions wont kill me, so at the moment met near heart get highest priority in my mind

Cediranib clearly isnt working, so thinking of new systemic treatment. C-met inhibitor is on the table. Trying pd1-inhibitor again with ctla4-inhibitor and or hypofractioned radiation. I update more once I get myself back together.

[Bonni Hess]

Dear Jussi, I am so very sorry about your concerning recent scan results which indicate that the Cediranib is unfortunately not working to stabilize the progression of your relentless disease. It is SO frustrating and infuriating that the lesion near your heart was missed by the radiologist in your last scan!! I agree that addressing and treating the heart area met needs to be the highest priority, and I am holding very tight to Hope that it can be successfully ablated by Dr. Littrup. I am very Hopeful too that you will be able to find and begin a new systemic treatment soon to stabilize your disease progression and shrink/destroy your mets. As you know, several of the Immune Checkpoint Inhibitors (ICI) such as Pembrolizumab (Keytruda), Nivolumab (Opdivo), and Atezolizumab are showing great success for several of our ASPS Community patients, so perhaps it would be a good treatment choice to try a different ICI than the Keytruda that you previously tried, and maybe use it in combination with another drug such as Axitinib. I know that you must be very discouraged, but there is still much reason for Hope with all of the promising new treatments that are being developed. You are a very courageous, knowledgeable, and resourceful young man, and I am grateful for, and deeply admire, your continued pro-active approach, undeterred determination, resiliency, and positive attitude in fighting your very challenging disease. Take care dear Jussi, stay strong, know that you are being held very close in my heart and most caring thoughts, and keep the Board updated as you are able. Reaching out to embrace you with special hugs, deepest caring, healing wishes, and continued Hope, Bonni

[D.ap]

Jussi

Like Bonni, I wanted to say that we are sure thinking of you as you try and get more answers.
Do let us know what you find out with the heart and brain lesicion ,consultations .

Love
The Pearson’s

[Olga]

Jussi - I am so sorry to hear that. I will be thinking on what could be done but few comments/questions:
- what are the sizes of the new brain mets? if radiosurgery will require steroids after for recovery, it might be counterproductive;
- is the met by the heart located in the hear or lung tissue?
- what are the sizes of the soft tissue/pervic mets, are any located in the bone?
- you do not need to ablate the lung mets, they improve the immune response (probably the lungs location is good for the recognition and tumor specific response formation);
- I have an article where the non-responders to ICI were converted to responders by the radiosurgery in a proven controlled study, I'll find it later. You can use it to justify the ICI re-challenge.
any clinical trials that have opened with ICI recently there? Not all of them disqualify the patients with the history of the ICI treatment.

[arojussi]

Thanks for support. I will have aother doctor`s appointment newt week and ct to see location of met near heart. Currently we dont even know exactly if it is in thorax cavity or peritoneum. At the moment I believe subcutaneous spots are acne. If they would be asps mets, then I would definetly need systemic immunotherapy, because this is very unusual place for asps mets. Wouldnt be the first time my acne has been consirered as cancer progression. So at the moment I dont see reason why local treatment modalities couldnt handle my disease. In brains there are few few mm spots and maybe 3 mm growth in few old ones. So if china can radiate them I go with that. Two moths ago my brains were stable, but I had near heart met, which is confusing, because my asps has always been more aggressive in the brains. As I had absolutely no response to immunotherapy last time my doctor isnt very optimistic and francly I agree. But if local treatments cant handle my case trying immunotherapy with radiation is reasonable. Yes changes of success are low, but if we achieve durable response it is worth it. I most likely wont need steroids after gamma knife. Currently there is no immunotherapy trials available in Finland as far as I know, but know more next week.

[arojussi]

The met shouldnt be connected to heart at least not yet. I remember asking that over and over again, because as usual I was very scared and it was hard to receive information.

[arojussi]

Me thinking out loud: I need ct to see if tumor is in peritoneum or in thoracs cavity. So far makes sense. But tumor possibly being in peritoneum and at the same time close to heart. Sounds weid to me. My rest heart rate has been elevated closer to a 100 beats a minute. I would be worried about this, but my heartrate has been that way for years. My heart still handles exercise fine as always. Fluid around my heart has also been there for years so I dont believe that this new met would explain it. By the way I am in way better shape than asps-patient, who had around 20- 40 lung mets operated in Finland. So laser is indeed way better for lung mets. But most likely significant lung damage still stresses my heart and because of my hip I am not able to exercise as much as I would want.

[Olga]

I do not remember if you ever had a heart MRI? Echo?