Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Jussi,

Are you seeing reduction of the heart tumor?
Sure have been thinking of you.

After tumor progression I had radiation for subcutaneous met in private hospital in the beginning of this year. After this public hospital was willing to continue cediranib treatment. If we achieve abscopal effect, then we try to talk about continuing immunotherapy. As responses sometimes happen after treatment has already stopped and immunotherapy is expensive I accepted break from immunotherapy as unavoidable evill. Early this year there was no sign that immunotherapy was working, so I couldnt convince public healcare to continue that. I am very lucky to have even cediranib.

Without infusions, there no need for blood tests like before. Of course we could easily have blood work done more often, but at the moment my dad cleans my moth 4 - 6 times a day, so I dont see what blood test would help us to detect bacterial gum infection better.

In january or february pulse was 160. Now 78. So either tumor has shrunk or tumor and heart function have nothing to do with each other. Of course I cant prove it without scan. But are we seriously assuming, that heart tumor has no effect in heart function. We definitely need heart mri if we want to continue opdivo, but it is not a problem, that need to be solved immediately.

So what blood test, would help us detect gum infection better, than looking at the moth often. Crp is very unspesific like fever and there is no fever.

Hi again Jussi

I was thinking BW for enzymes and or inflammation markers? Also for liver functions?
Neutropenia? All the above to check of the possibility of side affects from the ced.


Although your mouth healing speaks volumes of good results . :)

Are you performing echocardiograms?

I totally understand the systemic ced needs to be utilized.
Using your BP and HR are great tools but maybe my question is how else are you monitoring your ced Med ?

I’m so sorry you are having to suffer all that you are Jussi. I am thinking of you.

May 18 I mistakenly wrote, that I had radiation for subcutaneous met in private hospital. Actually I had linear arc stereotactic radiation formandibular met. I could have targeted shoft tissue met and then I would have most likely avoided moth with antibiotics and huge hole in my mandibula as radiation combined to immunotherapy and tki caused severe bone damage. Of course there is no telling, what would have happened if I wouldhave targeted subcutaneous met instead. So targeting most dangerous met for abscopal effect is risky as radiation will damage surrounding tissues.

Radiation most likely achieved somekind of abscopal effect as subcutaneus met, that received no radiation has lost more than 70 percent of it`s volume. Trying to achieve abscopal effect is difficult and risky business especially as scientific evidence about subject is no where near finished.

That’s an interesting point Jussi. Do you think being on the TKI + immunotherapy caused more bone damage vs. just being on immunotherapy alone? Did your doctor suggest a bisphosphonate to reduce the osteoclastic activity of the bone met? What treatment are you on now and how are you doing?

Tki inhibits blood vessel formation, so it definitely affected jaw necrosis. Actual tumor is most likely dead. Bisposphonates can cause jaw necrosis.

I am more or less in hospice again. Immunotherapy wasn't working based on scan early this year. Cediranib is continued, because it gets my blood pressure and heart rate normal. So basically I am hoping for abscopal effect, from radiation to mandibular met to achieve miracle cure.

Hi Jussi
The radiation treatment was how long ago ?
My hope and prayers for success with the abscopal affect.
Love
The Pearson’s

Oh that's right about the jaw osteonecrosis w/use of bisphosphonate, but thought it would just be a 1% chance of that happening. If your bone met is in the jaw, I am not sure if that would be the same thing. Either way, hoping that Cediranib continues to work for you.

Well my breath smells bad (not as bad as my brother`s but still bad. )Well mucositis naturally smells bad. And there is huge hole where I had radiation. That hole will naturally collect all kind of crap. My dad is very scared and wants to start antibiotics. Luckily dental surgeon disagree with him. My overall condition is very good. Heart rate yesterday was 77. And blood pressure 134/95. As heart tumor grows heart blood pressure drops and systolic pressure turns similar to diastolic. So most likely abscopal effect was achieved. Body temperature 36.1 c, so definitely no fever. Even if there would be infection in my moth it doesn't treat my life as much as heart tumor and as antibiotics will risk heart tumor control I am still resisting antibiotics.

Ivan also has a mucositis as a side effect from the xerostomia caused by the autoimmune salivary gland dysfunction. He needs to rinse thoughtfully and clean his mouth after every meal, he uses the TheraBreath lozenges (strong) and pur mints (milder) after meals and in between to stimulate the saliva production and to suppress the mucositis plus the Nystatin oral suspension by prescription. The radiation affects the salivary glands as well so you might have them damaged for now, they will probably recover.
How is your weight? you need to work on supporting the skeletal muscle mass, in any way possible.

Need surgery to remove necrotic tissue ftom manidibula. with this comes doxycycline 100 mg a day.

Few weeks ago my dad tried to scrape of necrotic tissue himself (dentist) if it would have been living asps I would have bled a lot. I hardly bled at all. So at least middle of the tumor is dead. But in theory there might be living tumor higher. Interestingly this tumor wasnt visible when radiation was planned. If it would have been visible, it would have been targeted. As asps grows very slowly, this doesnt sound likely. Also subcutaneous met (not treated with radiation) has still lost around 70 percent of it`s volume. So idea, that my mandible has living asps doesnt seem likely.

Well edges of the tumor received less radiation than center. In theory even if lower edge and upper edge received same dose it is possible, that cells in upper edge of the tumor survived, while cells in lower edge died. I was using cediranib, one dose of opdivo and one dose of avastin during radiation. With this combination osreonecrosis is way more likely than tumor progression. Especially as there isnt tumor progression anywhere else. Of course Officially there is nothing more, that can be done to my cancer, so scanning is low priority.