Cure Alveolar Soft Part Sarcoma International (iCureASPS)

What does your doctor say, is it really necessary to keep antibiotics? Did they do a test for infection in sputum, what type of antibiotics you are given - the broad action or specific ones? It is usually not effective to have the antibiotics for a long time, more than 5-7 days, and the short course might not that affect the immune response. Might the bleeding be addressed differently, by coagulating the blood vessel?

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

It is a pretty unusual fast growth for the pancreatic met in one and half month. Were the scans done on the same scanner and are truly comparable - what scan was done on 7/24 and on 9/5? With your rapid onset of the side effect in lungs there might be an immune system attack caused inflammation in the pancreas too.
In general you can have a surgery or SBRT (very unlikely anyone will agree to do it on pancreas with the high risk of damaging the pancreatic duct, but you should ask the radiation doctor). The surgery will mean the interruption of K. And it is going to be extremely hard to find a surgeon who would agree to operate since you have the brain and lung mets.
I would probably wait till the next Keytruda and rescan soon to see if there are any signs of response in any untreated mets anywhere.

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 for plan B if Keytruda doesn't work on me in 2 months.

With the brain mets treated and controlled by Gamma Knife, do I have the chance to go to Germany to Dr.Rolle's successor for the laser assisted surgery for my lung mets if Keytruda doesn't work on me?


Best,
Sam

Basically the pancreatic met represent a bigger problem now so the surgeons will not agree to perform any surgery on the lungs or elsewhere until the pancreatic met is treated somehow - there are risks with having the surgery and it can even speed up the growth of the pancreatic met as any surgery increases the growth factors caused by the need for the body to repair the healthy tissue.
You can consult the abdominal surgeon and the radiation therapy doctor in the meantime, ask them to evaluate the pancreatic met in case it is needed. They will need an abdominal MRI with the contrast, not the CT. Meet with both of them, discuss what they can do and benefits or risks of each modality.
What was the reason the abdominal CT scan was done on 9/5? As I remember it was a day for you to have SBRT? Did you have to have any steroids after the SBRT?

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, the pancreatic met does represent a bigger problem now, comparing with the 10 small lung mets (<1 cm).

I now should focus on whether Keytruda responses on me and the next steps with the pancreatic met if Keytruda doesn’t.

I’ll go consult with the pancreas surgeon to evaluate my pancreatic met. Meanwhile, I’ll meet the “proton therapy” doctor to see what it can do with my pancreatic met.

Even if Keytruda doesn’t work on me, hopefully, once I have the pancreatic met treated, I will be able to focus on treating my lung and brain mets.

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 pancreas body met since it’s too close to the intestines and very likely to cause some intestine severe side effects.

So now my plan is as followed：
(1) See if Keytruda would response on me (1st dose on 8/30; 1st checkpoint: 10/15; last checkpoint: 11/30)
(2) If K doesn’t, then take the pancreatic met surgery.
(3) After recovery, go to Germany for the laser-assisted surgery for my 10-20 lung mets(<1cm).
(4) Take Pazopanib to slow down the growth of my ASPS.

May I know how much it costs for the laser-assisted surgery in Germany?

Best,
Sam

Sam it was a long time since we went to Germany for Ivan's surgeries so I do not know their current costs. Ivan's pancreatic surgery was a bit more than 20,000 Euro.
You plan sounds good and it is very beneficial that you have a good quality and willing to operate local surgeon for the pancreatic met. It is unfortunate you only had a CT scan for the pancreatic met before you started K, was the CT scan done with the contrast? What scan was used for the brain mets?

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

OK, it is good that at least that you have the brain MRI so if there is a response in the smaller non-treated mets, it can be seen more clearly than on the CT scans - they only show the object and if the object is a scar with some viable tumor in it, it is going to be hard to say if there is a response. On the MRI scans they say the change in the composition can be seen and the inside of the tumor becomes less solid with different signals density. Perhaps the abdominal surgeon should be included Cc in the list of drs receiving the abdominal scans as sometimes they can better see the changes if there are any, the same goes for the brain MRI - the radiosurgery dr should get the scan and review treated (for the quality control) and non-treated (for the abscopal effect detection) mets.
It is excellent that you exercise. Do not overdo, be careful. But in general the muscle density and mass is found to be positively connected to the immunotherapy response.

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?


Best,
Sam

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 I do with the expected new brain mets if Keytruda doesn’t work on me? Brain MRI every 3 months and use Gamma Knife if any new mets are found?

It seems that TKI (Pazopanib) doesn’t work on ASPS brain mets?

What was the main reason that caused Jussi to pass away? Brain mets? Heart met? Or infection?


Best,
Sam