Seth from South Korea, Dx november 2017

[seth94]

Yes, I know Fuda hospital. George had 2 cryoablation there.
Dr. Niu is director of that hospital. They have rich experience of brachytherapy as well. If you're going to consult him, ask in what degree can the met be ablated--completely or like 70%.

There was a dangerous complication in the course of the procedure because the doctor was lack of experience. One of the met George had brachytherapy was very close to the heart. The pericardium was pierced and filled with blood, which made the heart beat dropped to ~50.
other than this, there was not other side effects as his mets were small.

Oh, that’s good news. There is network with FuDA hospital in Korea.
Good to know that George had no side effect except bleeding. If i have to take a brachytherapy, i would go to dr. Doggett who transfer his technic to FUDA hospital!!

[seth94]

Seth
How many lymph nodes centralized tumors are there?

“My lymph nodules exist around both bronchial tubes, and they are 2-4 cm”

http://www.cureasps.org/forum/viewtopic ... 507#p12471

There are 3 nodules. 2 in right lung, 1 in left lung. Except lung/lymph nodules, i have only bony mets until now. Some doctor said preventive medication for osteoporosis has some effect to prevent bone metastasis of breast cancer. Maybe, i should try this medicine...

[seth94]

There is a brief update. Dr. Aoun’s seceretatry does not reply my email since Aug 8. So, i have been finding another dr.

I sent my ct scan to dr. Lugnani who doing cryo in Italy, Spain, Slovenia. He said my mets are treatable and need 4 cryo during 2 months. I think he has lots of experience. There is a picture that dr. Niu and dr. Lugnani doing cryo together.

I have to stay Spain for 2 months. Thank you Olga. I have been thinking that cryo is not possible. Without your advice, I would have go to US to take a brachytherpy.

[Olga]

For cryo you can go to China and have it with Dr.Niu - it should be cheaper? How expensive is it going to be with Dr.Lugnani and how many patients did he treat overall? The risk of the lung collapse is much higher with the less experience. If for example he mostly treats prostate cancer, he might be not the best for the lungs application, so you need to ask - how many lung cancer or lung metastases cases did he treat overall? From his profile it looks like he might be more focused on the prostate cancer cryoablation. I am not saying that he is not a good option, but we usually evaluate few options looking for the moist experienced in a field.
Also - why wouldn't you try the Keytruda or Opdivo first.
There might be some other reason for Dr.Aoun secretary not answering - she might be not working there anymore? Contact Dr.Aoun directly: aounh@karmanos.org
or ask Ian - he is an international patients assistant in Detroit: iwidd@dmc.org
what is the situation there and how to get evaluated. They accept the scans by the e-mail - we would upload them to the online storage and share the link.
I looked it up - you have only sent the e-mail to Barb on Aug.10, a week ago, if she is on vacation -she might be still there. It does not make sense to hurry that much, you need to be very careful. Treatment is like a chess game, you have to play smart.

[seth94]

For cryo you can go to China and have it with Dr.Niu - it should be cheaper? How expensive is it going to be with Dr.Lugnani and how many patients did he treat overall? The risk of the lung collapse is much higher with the less experience. If for example he mostly treats prostate cancer, he might be not the best for the lungs application, so you need to ask - how many lung cancer or lung metastases cases did he treat overall? From his profile it looks like he might be more focused on the prostate cancer cryoablation. I am not saying that he is not a good option, but we usually evaluate few options looking for the moist experienced in a field.
Also - why wouldn't you try the Keytruda or Opdivo first.
There might be some other reason for Dr.Aoun secretary not answering - she might be not working there anymore? Contact Dr.Aoun directly: aounh@karmanos.org
or ask Ian - he is an international patients assistant in Detroit: iwidd@dmc.org
what is the situation there and how to get evaluated. They accept the scans by the e-mail - we would upload them to the online storage and share the link.
I looked it up - you have only sent the e-mail to Barb on Aug.10, a week ago, if she is on vacation -she might be still there. It does not make sense to hurry that much, you need to be very careful. Treatment is like a chess game, you have to play smart.

Thank you Olga. He will give me information about expense soon. And I will ask him about his experience for lung cryo. Korean cryo doctor said it is almost impossible to do cryo for mediastinal mets. But in dr. Lugnani’s homepage, there is a video that dr. Lugnani treated mediastinal mets by cryo. That’s why i trust him and sent my ct scan to him. And he said he can prescribe keytruda in Spain. So, i’m considering take keytruda and cryo at the same time.

I sent email to dr. Aoun’s secretary and I got an automatic reply that he/she is on a vacation until Aug. 13. So i sent email again that date, but i didn’t got a reply yet. I will sent email directly to dr. Aoun. Thank you very much Olga.

P.S.
Is dr. Aoun do cryo on bone mets? I want to take cryo for bone mets together.

[Olga]

Seth, what bone met do you want to get cryoablated - size, location?
You should be able to get a prescription for Keytruda at home. It is called off label prescription and we have the supporting letter here:
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1482
Merck representatives in South Korea could answer how you can get an access to this drug on an expanded access program
http://www.msd-korea.com/

[seth94]

Seth, what bone met do you want to get cryoablated - size, location?
You should be able to get a prescription for Keytruda at home. It is called off label prescription and we have the supporting letter here:
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1482
Merck representatives in South Korea could answer how you can get an access to this drug on an expanded access program
http://www.msd-korea.com/

Most of them are 1-2cm. They are at ischium, s-i joint, femur, t2 and humerus.

Olga, do you heard about injecting ici into the mets directly?

[Olga]

I think I have seen a clinical trial like this in US? I need to check. In general it is a very good idea.

You have a pretty large number of the bone mets, it is pretty unusual for ASPS for them to be multiple although we have seen such cases in Asian patients, may be there is a genetic predisposition to that pattern. Have you had your kidneys scanned? There is a kidney cancer - Renal cells carcinoma - that close resembles ASPS under the microscope. They have more bone mets than ASPS, I would check just in case.

[seth94]

I think I have seen a clinical trial like this in US? I need to check. In general it is a very good idea.

You have a pretty large number of the bone mets, it is pretty unusual for ASPS for them to be multiple although we have seen such cases in Asian patients, may be there is a genetic predisposition to that pattern. Have you had your kidneys scanned? There is a kidney cancer - Renal cells carcinoma - that close resembles ASPS under the microscope. They have more bone mets than ASPS, I would check just in case.

It’s good to hear that it is a good idea. At Spain, there is a internationa cryosurgery center, and i go there for lung mets. There team(not only dr. Lugnani) treat me with cryo and injecting ici to the mets directly. They have been injected icic directly since 2016 and there is no side effect and result is better. They do cryo on lung since 2009. So, i’m going there next month!

My last abdominal ct scan report said there is no met in kidney, spleen, liver, pancreas, GB and so on!!

Thanks a lot Olga.

[Olga]

What ICI drug do they use? Keytruda or Opdivo is preferred for ASPS.

[seth94]

What ICI drug do they use? Keytruda or Opdivo is preferred for ASPS.

Opdivo+Yerboy. They use low dose when inject direlctly to mets!

They said between cryo and cryo 15 days is needed for recovery, and i have to take 4 cryo(2 for right lung, 2 for left lung). Olga, do you think is it a reasonable plan??

Thank you always Olga.

[Olga]

Seth, sometimes Dr.Littrup would do 2 mets at once if they are located in a way it is convenient, but 15 days is a good plan. What is their cost for one procedure? Does the cost include any in-hospital days or it is done completely outpatient? Sometimes even if the procedure is outpatient, one night might be included for the patients that need to be under the observation. Who is going to travel with you?

[seth94]

Seth, sometimes Dr.Littrup would do 2 mets at once if they are located in a way it is convenient, but 15 days is a good plan. What is their cost for one procedure? Does the cost include any in-hospital days or it is done completely outpatient? Sometimes even if the procedure is outpatient, one night might be included for the patients that need to be under the observation. Who is going to travel with you?

Yeah, they said they will do cryo as many as possible mets at each cryo. Total procedure(4 times cryo, ici, in-hospital, medical team, cryo probes, argon gas) are 75,000 euro. They said each cryo, i need to stay for 2 days at hospital. 1 day before cryo and 1 day after cryo. My father will go with me. But he will be back to Korea after first cryo. So to me, in-hospital might be good.

[arojussi]

Injecting ici at the same time as cryo sounds experimental. But logically thinking it should be very effective in asps.

[Olga]

Seth - it looks more expensive than in US but they do not do an intratumoral ICI administration, so it may be more interesting. If more than one met is cryo-ed during one session, they usually just add the cost of the extra probes that were used. You will get the invoices. Ask them to evaluate the bone mets to identify the ones that are at risk for a break and if it possible to cryo them to before they grow further, may be after a month or two in between to see if there might be an immune system abscopal response.