Cure Alveolar Soft Part Sarcoma International (iCureASPS)

No. We suggested it, but doctor believed it was unlikely to give more information. Luckily heart mets in asps are extremely rare. Still I believe heart ultrasound would be be worth having, once we get current situation sorted out.

Jussi
Good to read of your methodical approach to your scan results .
How are your thyroid levels looking these days ?
Are you still at the 125 microgram dose with your thyroxine ?

Actually I started feeling symptoms of hyperthyroidism (rapid heart rate intolerance for heat), so I stopped thyroid medicine after blood test confirmed, that my tsh wasnt too low.

Wow
I’ve heard of people swinging from low to high thyroid..
And visa versa .

How long ago was that you stopped the Med?
And you were on it how long?
How many months while taking cediranib were you on thyroxine Med ?
Please no pressure to answer this week
You need to get answers on your scans .
I may figure out answers by reading back on your personal accountancy.
Looking forward to hearing what docs say .

Question
Is cediranib on a 4 week ON and 2 week off, schedule ?

Cediranib was continuos 30 mg daily. In theory we could just try higher dose.

7 cm met in my heart

Jussi,

Can it be surgically removed ?

7centimeters?

Which side of heart and in is being seen in the heart or outside the heart?
I’m sure sorry to hear this. Please know we are here to talk with , when you are ready.

Love

Based on quick look tumor looks inoperable. So I had first dose of ipi and nivo combo today. As ceditanib in combination can be liver toxic and liver is my strongest organ I continue with that too. Also fractioned radiation for my subvutaneous lesion is in planning stage.

There is science sipporting use of tki with pd1-inhibitor. There is also science supporting yervoy and opdivo together. Also radiation is supported by science, but using yervoy, opdivo, cediranib, fractioned radiation combo is unknown territory, but I see no reason why they wouldnt work together. Have to stop using imodium, because it can destroy cut microbes. Also I try using probiotes. If I dont react to immunotherpy I die soon. Luckily heart attack is better way to die than brain swelling. Yes heart echo would have wound met before, if I would have insisted it. Heart met didnt affect my exercise so I hoped elevated probnp was just caused by thoracotomies and or chemo I had years ago. I made very stubid mistake again and it will most likely cost me my life. Well I made it to decade with asps, which is 5 years more than what finish sarcoma specialist can achieve. Yes it was stubid that I only suggested echo and didnt insist it. My yourney is most likely over soon.

Hi again Jussi
What if you are taking all 3 meds and you do have servere heart issues , ie heart attack ?
Which Med would you choose to discontinue or do you suppose the docs would quite all 3?
It seems to me that you are putting yourself through some awlfully rigourious and very hard on your heart meds all at once ?
Ipilipmumab in itself is known to very hard on a persons body , let alone their heart. : /
There have been documented cases of the Opdivo and IP,yervoy ) patient deaths .

I know it has to be incredibly upsetting and incredibly scary , to of discovered a heart met.

Stopping cediranib will result in my heart met growing faster, so I am more scared of that , than heart roxicity of drugs. Adding yervoy is neccessery, because keytruda alone had no response. Of course in time I will most likely stop cediranib and yervoy, but now we must get heart met to shrink or I die. Yes this drug coctail can kill me, but 7 cm heart met is even more likely to do so. Immunotherapy can work slowly, so cediranib is needed to control met untill then.

Jussi-

Morning to you . : )

Are Opdivo / yervoy sched for every 2 or 3 week ?
Ced still 30mg?

Why do you think that stopping cediranib will result in my heart met growing faster? Only responding mets develop resistance and the following grow rate speed up, since you never really had a response (or did you have a reduction that I don't know about? anyway, this 7 cm met wasn't a responder obviously) you are at no risk to develop the speedy growth anywhere. I would stop cediranib. I did not see any evidence that the synergy for this combination exists in vivo. With ceditranib the chances you get the adverse effects and stomach upset again, you do not need it now. Play accurately.

This is indeed hard question. Cediranib can indeed cause stomach upset, but as long as it can be managed with dried blueperries I have no side-effects from it worth mentioning. So I plan to keep using it for now. Indeed there is no evidence supporting cediranib and immunotherapy togerher, but Breelyn Wilky has combined axitinib with pembrolizumab with good results. Rebound growth in cediranib is not as frequent as in other tkis, but if tki is stopped for any reason there is always risk for faser growth, which would kill me. As long as diarrea is controlled with dried blueperries and my labs are tested weekly I consider this approach to be slighly saver than immediately stopping cediranib. If I would need imodium for diarrea then I would stop cediranib as imodium can also hurt gut microbes.