Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi, Olga: After reading Jussi’s case, I am pretty worried about my multiple brain mets although they were all treated by Gamma Knife on 9/4 and the biggest one is only 0.7cm with the other 0.1cm ones. But since they are multiple brain mets, I think more new ones will come sooner or later. What shall...

Hi, Olga： The Gamma Knife doctor decided to treat all the brain mets last time on 9/4 since it costs USD $5,000 for each Gamma Knife treatment. So I guess my doctor can judge whether Keytruda has response only according the comparable CT scans of my lung mets and pancreatic met on 10/15 and 11/30? B...

Hi, Olga:

Before K, I had brain MRI and chest/abdominal CT, both with the contrast.

I now everyday walk the trail and do some indoor cycling training to enhance my heart and lung function for the incoming treatment.


Best,
Sam

Hi Olga： I talked with the surgeon, he said it’s not too hard to resect my pancreatic body met, and he will try his best to preserve my spleen since there is space between the met and the vessels. And I talked with the proton radiologist, he didn’t recommend me to do the proton radiotherapy on my pa...

Hi, Olga： The reason why I had abdominal CT on 9/5 was because the doctor wanted to find out the source of my blood stained sputum. Therefore, the had CT for my chest, abdominal and pelvis on 9/5. I haven’t had the SBRT yet and I didn’t take any steroid after my Keytruda. Thanks for your reminding, ...

Hi, Olga: The 7/24 and 9/5 scans were both CT scans. I was shocked to know the unusual fast growth of the pancreatic met too. I hope it's caused by the immune system attack caused inflammation like you said. I sometimes feel frustrating now just to wait for Keytruda's response. I'd like to prepare f...

Hi, Olga:

I am almost fully recovered from the pneumonia now.

I started my first dose of Keytruda on 8/30.

But one urgent thing is that my pancreatic body met grew from 2.6cm (7/24) to 4.0cm (9/5) in just one and half month.

Should I do anything with it now?

Best,
Sam

Hi, Olga: The signs of incomplete recovery from the pneumonia are still a little coughing and a little blood stained sputum. But I'm getting better and better. Hope the antibiotics wouldn't hurt my immune system too much. And hope Keytruda can have responses since I'll stop the antibiotics by my 2nd...

Hi, Olga:

In addition to the radiosurgery for my brain mets on 9/4. What else can I do to increase the chances for Keytruda to response to my tumors? I still have a pancreatic tail tumor and some lung mets. Shall I do the radiosurgery for the pancreatic tail tumor and lung mets?

Best,
Sam

Hi, Olga:

I started my first Keytruda on 8/30 and I did the Gamma Knife on 9/4 for brain mets. And I started to take antibiotics on 9/5 even till now since my lung (pneumonia) hasn't fully recovered yet. But I think I'll stop the antibiotics by my 2nd Keytruda.

Best,
Sam

Hi, Olga: After staying in the hospital and did some blood tests and CT scans. The doctor diagnosed my situation as pneumonia rather than the side effects of Keytruda. Because after they provided me with antibiotics for 3 days, my blood stained sputum and coughing improved a lot. And as for the hema...

When serous side effects happen to a person, it doesn’t mean that Kaytruda will work on the tumors of this person, right?

Best,
Sam

Hi, Olga: It has been a week since my first Keytruda infusion. However, I have two obvious side effects here：(1) My right lung has inflammation and I am having blood stained sputum. (2) I am having hematochezia. I am ok in the ER now. The doctor just gave me antibiotics and hemostacic agent, they ha...

Hi, Olga: The two biggest brain mets are about 0.7cm and 0.5cm. The doctor said steroid will not be needed regarding to this size and number of brain tumors with Gamma Knife. My doctor said we can treat the two biggest brain mets with Gamma Knife first and wait 3 months to see if Keytruda will work ...

Hi, Olga: Today is the first day of my first full dose (200mg) Keytruda (8/30). I now have two option dates for the Gamma knife for the biggest two brain tumors： (1) 9/4 (2) 9/17 (My 2nd dose of Keytruda will be on 9/20) Which date do you recommend me to do the Gamma knife to better help enhance Key...