Teleconsultation transcript (Freiburg, Dr. Wäsch), English
[00:00:10.810] - Speaker 1
I don't know. Can I speak in English or should I continue in my own language?
[00:00:17.170] - Speaker 2
We can talk in English as well.
[00:00:19.970] - Speaker 1
Okay, we can try to talk in English and the translator will help us if there will be some difficult places.
[00:00:27.120] - Speaker 2
Yes, okay.
[00:00:28.240] - Speaker 1
Thank you very much. So my name is Igor I'm brother of the patient Anastasia, whose documents I propose to you for the second opinion. That's all that I can say. Currently she treated in National Cancer Institute at first in Ukraine. I don't know whether you know this institution or not. Right now we are moving to private clinic. And so the situation so far is such that she received the first line treatment with Gamzar and Toxitir during half of the year. Then there was a genetic test performance. She received Pazepanip, but got this very.
[00:01:26.410] - Speaker 2
Why did she stop receiving taxoter and Gemcytopine?
[00:01:32.430] - Speaker 1
They thought that it is not efficient. They found the progressing liver and also her condition was quite bad. She had very big problems with liver. The liver was enlarged and it created pressure on the capsule in which liver is. And it was very painful for her. And ultrasound examination showed that most of the liver like 80% is liquid filled cysts. They are separated with lot of wolves and drainage of them is not possible. And it was very painful for her and she was bad and there was some progress in liver about the metastasis. And overall they decided that first line treatment. So we should not continue with this treatment and change it to something else.
[00:02:31.330] - Speaker 2
How often did she receive Pasopanib?
[00:02:35.090] - Speaker 1
So she started receiving passopanib on the force of January. She received every day 800 milligrams. And after a week of such a treatment, she one week? After one week? Yes, after one week of such a treatment. Immediately after started receiving Pazepanib, she reported strong headaches and she could not sleep and she took a lot of painkillers, but they were not helping. And after a week she contracted. So she lost her consciousness. She contracted you can translate. She got tonica clonic seizures with loss of consciousness and she was hospitalized. And MRI revealed hemorrhagic damage to the brain and she was recovered in clinic with post therapy. Right now she recovered and oncologist did she fully recover? Well, here cognitive state and reactions got back to normal. As for the MRI, it shows hemorrhagic fosse in brain, unfortunately. But Zoncologists decided that we can continue treatment with trabectidin. So that was her decision. That's how the state of situation is right now.
[00:04:43.610] - Speaker 2
And can she walk normally?
[00:04:47.510] - Speaker 1
Yes, she walks a little bit during the day. She walks on the street outside of a little bit during the day. So she's quite limited. So she becomes tired very fast. She didn't move much even before such as this treatment. But she's looking like it was before Pazepanim.
[00:05:20.230] - Speaker 2
The main problem is that the metastatic disease in the liver is quite the metastases are quite big, so up to 10 CM. That's why she has those painful symptoms. I don't think that the enlarged liver derives from the chemotherapy, rather from the metastatic disease. The main problem will be if the liver will be able to function over the next few weeks. Because in my opinion, the main limiting thing today is the liver. Because if the liver doesn't function very well, then the other organs will as well do not function anymore.
[00:06:42.930] - Speaker 1
Blood tests with liver specific points, they are quite normal, surprisingly too. So that's why they decided to continue a chemical. Yes.
[00:07:03.510] - Speaker 2
There were some questions that you sent me regarding the therapy.
[00:07:09.280] - Speaker 1
Yes, I formulated those questions I have so far.
[00:07:12.680] - Speaker 2
Yes, because there was one question that she received I phosphate and Doctor no.
[00:07:23.850] - Speaker 1
There was a discussion. So they decided that it ifosphamide and doxorubicin combination is very hard for her.
[00:07:35.010] - Speaker 2
I wouldn't recommend it as well. So I think the options that you told me trabectudin right now, and maybe doxorubicin in monotherapy are more indicated. Regarding Avastine, I wouldn't recommend it because she had those bleeding episodes in the brain. So avestine might worsen the vascular situation in the brain and you won't have many other options other than Trabectidine and Dr. Rubicon moral therapy.
[00:08:32.570] - Speaker 1
Well, regarding her genetic tests, I don't know, as far as I understood the genetics, he said something difficult for me about the PD-1 or something like that. So the question is maybe some immunotherapy is possible or something else.
[00:08:59.270] - Speaker 2
The result from the molecular testing revealed that the tumor mutational burden is low. And if that is the case, you don't expect a good response to immunotherapy. Probably she won't have any benefits from immunotherapy as a result from the genetic testing. For the more BRCA-1/2 genes were not mutated. She wouldn't benefit from therapy with a PARP inhibitor as well. But those two options are not recommended based on molecular testing in this case.
[00:10:03.690] - Speaker 1
Maybe there could be some other possible options. Maybe we can do some other testing or examinations to reveal them.
[00:10:14.370] - Speaker 2
I don't think that this is necessary.
[00:10:28.460] - Speaker 1
What about some other ways of treating cancer? Like I read that there are some thermal destruction of metastasis when they combine heat and cold. Maybe some other invasive methods, maybe something.
[00:10:47.040] - Speaker 2
That would be the option. If you have oligometatic disease, if you have solitary metastasis, that is an option either by radiotherapy or embolization or there are several other options. It isn't recommended if there are several metastases because the main goal of the therapy would be to destroy every metastatic module. And in this case it's not possible because other than the liver metastases, there seem to be also in the peritoneum and it won't be possible to target every single lesion in order to eliminate it. So it doesn't make sense, unfortunately.
[00:11:54.980] - Speaker 1
Maybe I have a proposition to look into something else. Maybe there are some recent papers on treating sarcomas. So what can we do besides basic, besides the trabectedin or doxorubicin? Maybe we can add some drugs, maybe they're experimental or not designed for sarcoma, but maybe they can be combined with chemical therapy.
[00:12:23.030] - Speaker 2
No. That's why I asked you how her general status is. And I mean, she seems to be very sick if she is only able to walk for a very short time period at this point in time. Besides doing aggressive therapy, the quality of life is also important. And combination chemotherapy is a very aggressive therapy. Even if you combine chemotherapy with, I don't know, immune checkpoint inhibitors or tyrosine kinase inhibitors or all sorts of antibodies, probably you will have the same result as in the combination with Jim, Cytobin and Dozetoxel. And I mean, because of the extent of the disease, the prognosis is not very good. And you should also look after her quality of life at this time. So I wouldn't recommend any combination with any other substances.
[00:14:13.140] - Speaker 1
Just maybe the last question. So after such a thing like press happened, they forbidden all the tourism inhibitors, all this class of drugs, maybe they were over protective and maybe we could try something under the strong supervision.
[00:14:37.820] - Speaker 2
No, I wouldn't suggest it. I wouldn't suggest it because you know that there is a high risk that the secondary effects would be a disaster for her. I mean, you just don't want to care the patient with the therapy.
[00:15:10.020] - Speaker 1
Well, there was a question about the metastasis in brain possible. So when she started receiving Pazepanip, there was a CT scan of all of the body, including brain, and everything was clean. After a week of Pazepanip, we had this massive picture with hemorrhagic damages in brain and different specialists. They split their opinions, one of them. So a couple of them said that there is no metastasis, this is only the syndrome. But they never seen it before. They just concluded it's the syndrome. And others, one of the groups of city specialists. They insisted that there might be a metastasis in brain in one place. And they suggested doing Pet City, but oncologists not only my oncologist, but multiple of them said that Pet CT is useless because it uses glucose and there is a lot of glucose in the brain and it will not show anything. So I do not understand. So they contradict each other and what do you think? How can we work into the brain in this case?
[00:16:31.280] - Speaker 2
I mean, I'm not an imaging specialist, but you can send the images to the radiology clinic in Fryburg and they can have a second look on them and maybe they can recommend further imaging studies that can be performed in order to rule out brain disease.
[00:17:03.080] - Speaker 1
Okay, I seem well. I think that I have no questions.
[00:17:10.460] - Speaker 2
I have a question. So she didn't undergo any surgery. Why did she go to the physician?
[00:17:21.820] - Speaker 1
Look, so she lived in a house she bought far from the city. She wanted to live outside and she was quite sick after some time there, but she thought about it. So it was caused by different conditions. Then the war started and she escaped to one of the nearby countries and she was like half of the year outside and she was changing places and she didn't do any medical examinations. And on summers she returned to her house when a situation stabilized it and she started to feel progressively worse. And she decided to do a check on August of the previous year.
[00:18:17.940] - Speaker 2
And then she underwent biopsy.
[00:18:21.440] - Speaker 1
So she underwent, as far as I know, a CT and MRI scans, which revealed that something is very wrong. She received that blood test, that there’s oncology, and she went to the first biopsy. Yes. And the biopsy so the biopsy station was they took not much material. It wasn't sufficient to do immune historic chemistry, but it was sufficient for them to claim that this is Lama sarcoma. They said that they have many different evidence so they said that from MRI it's very clear that it's Lemial sarcomas. They know it very well and from other factors. And they concluded that this Islamia sarcoma and performance treatment right now she took second biopsy. She took genetic tests.
[00:19:15.360] - Speaker 2
Yes. Liver biopsy. Okay.
[00:19:17.880] - Speaker 1
Yes. So why didn't they took the biopsy from the main organ in Institute of Cancer? They thought that they will destroy the barrier and metastasis would spread. When I came to the private clinic, they said that this is superstition. So in their practice they do not see such metastasis. But they said that this sarcoma and this disease, there is no matter where to take the biopsy. So this is the same sarcoma in liver, in uterus and so on. So as a result, the second biopsy was taken also from the liver, because it's more convenient.
[00:20:22.880] - Speaker 2
And when did she start with trobexidin?
[00:20:28.840] - Speaker 1
She hadn't started tribectidin yet. It's not registered in Ukraine, so it's been imported by sort of illegally, and she will start it this week. So when will arrive?
[00:20:45.920] - Speaker 2
Okay. So I wish you all the best. If you have any questions, you can connect to us.
[00:20:56.900] - Speaker 1
Yes, thank you. Yes, I wanted to ask a question, so I wrote a lot of I know that in Germany there are sarcoma centers, because I see the doctors in Ukraine, they like never seen such things like this, and they are not very confident with the sarcoma. And also a lot of doctors escaped it. And from National Institute of Cancer and I learned that there are sarcoma centers in Germany. I wrote to many of them. Usually the answer is please come to us and we will do a check and decide whether we can treat you. And your colleague told me that those Sarcoma centers are very different in their specialization. Maybe you can suggest where we should for example, if we come to Germany, where we should go first, which Sarcoma center deals with circumstances like that.
[00:22:08.220] - Speaker 2
You can come to Freiburg.
[00:22:13.020] - Speaker 1
You are sarcoma center?. Yes. Okay. Thank you.
[00:22:20.540] - Speaker 2
Okay.
[00:22:21.200] - Speaker 1
I know your opinion and know that so you deal with such cases and you have such patients.
[00:22:29.410] - Speaker 2
Yes. Bye.