Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Oh and changes of radiation necrosis are just few percent. I was afraid it was like 20-40 percent change.

Good news on all progress .: )
What did the target cm area ,end up being ?
1.2cm plus ?

Radiation was planned to 1.5 cm tumor and 7 mm margin.

When you meet with the cardiologist, ask if the fluid can be drained. When Ivan had a pleural effusion and a lung collapse after we came back from the first surgery in Germany, they performed a drainage in the ER - it is a low risk procedure if done by the experienced dr that allows fast evacuation of the fluid. Immediate relief for the heart. Just to get the time for the drugs to work.

As effusion causes very littlle symptoms and my cough mostly annoys my dad. I consider draining it unnecessey stress to my body. As my subcutaneous met continued to shrink, after I stopped cediranib, increased pro-bnp is most likely explained by increased effusion. My pro-bnp is nowhere near dangerous levels. draining fluid from pericardium, to get lab test to normal makes little Sense. So I would prefer to continue cediranib as soon as possible. Of course we need to palance skin healing after radiation and effusion, when choosing when to continue cediranib. My first idea would be to continue cediranib week after radiation has ended as effusion is more dangerous than skin damage.

After first radiation dose my skin is little red, but I believe I survive 3 fractions wirh just extreme redness in my arm and that wont kill me.

Of course we will ask if cardiologist believes that effusion is very dangerous or not.

Meeting with cardiologist went well. We agreed, that there is no need to drain fluid at the moment. Even tough my heart is surrounded by big tumor my heart seems to work ok. So we monitor my condition closely and if I start to experience symptoms like dizziness or if systolic and diastolic blood pressure synchronize, then we do palliative operation to reduce pressure around heart. Of course sudden death is possible, but very unlikely.

My neck and shoulders have been very tense lately. Could be just stress, but also immunotherapy related side-effects to muscles are possible. Less likely, but possible. Of course my muscles have been tense ever since I was a child (that is why I am running addict and have massages often, but tension has never been quite this bad. Of course muscle tension is way more likely, but if I have immunotherapy related rheumatic adverse effects, then response rate can go as high as 85.5 percent. Need to check that number, it seems unrealistic.

Yes I was wrong patients with reumatic irAEs had higher response rate 85.7 compared to 35.3 percent response rate in patients without irAEs. P-value 0.0001.

Oh and. Cardiac mri will be arranged.

I think muscle tension is from stress.

I go to the sauna and then take a very cold shower. It relaxes the parasympathetic nervous system.

Been doing sauna daily for years and ofcourse I continued to do so, when muscle tension suddenly turn worst than ever. I been under this much stress before and tension has never been this bad. There is no vomiting, so it is not from brain swelling. Doing crosstrainer can get my shoulders to tense up, but I have just run recently. Running has always relaxed my shoulders, even so muscle tension is most likely explanation, but immunotherapy related rheumatic adverse event is still possible. As rheumatic polymyalcia is associated with temporal arteritis, which can lead to blindness, we must take that into consideration, even if it is unlikely.

Cardiac mri next monday.

Oh and one question that must be solved soon. When should I continue cediranib after radiation. I was thinking of going with information based on sutent-trials. Currently they recomment to stop sutent few days before radiation and to continue it few days after radiation has ended. My skin has tolerated radiation way better than expected, I would feel save to continue cediranib few days after radiation. As pro-bnp increased little after I stopped cediranib I believe it truly helps with tumor associated swelling. As this swelling can be dangerous I consider re-starting cediranib relatively soon would be ideal. Have to ask from oncologist about this. I definitely would want to restart cediranib as swelling in the heart is more dangerous than skin damage.

As I remember, most of the skin damage (radiodermatitis?) from the radiation is not immediate but delayed, like 30 days after or even later? Ask the radiologist when you see him next time, it depends on the dose to skin.

If most if your tension is in the trapezius muscles, it could be a combination of stress and postural issues. I suggest strengthening the scapular retractors with exercises like band pull aparts or reverse fly's. This will have the effect of calming the traps. Also stretch the pecs and release them by rolling a tennis ball or something similar on them. This will clean up the upper body posture somewhat.

Hey Jussi how are you feeling? How's the skin?

Skin is really good. Just a little red. Of course radiation dermatitis takes weeks to kick in, but at least there werent immediate burns caused by radiation.

Cough is improving. Heartrate is coming down and pro-bnp is stable. Now I run 2.3 km in 33 minutes, before immunotherapy it took 38 minutes. Still very slow, but definitely better.

If muscle stifness is from immunotherapy or just my usual muscle tension doesnt matter. Treatment is the same: anti inflammatory pain medicines like burana and physical therapy. Symptoms dont reguire corticosteroids. Not yet at least.