Daniel D in South Korea - Dx 2013

[Olga]

This is a reasonable suggestion by the oncologist and in line with the generally accepted treatment practice in ASPS. The local treatment is advisable if there is any easy ways to locally destroy the metastasis - if only one or a few are of concern. The systemic treatment options for ASPS are limited and are usually reserved for the times of the general progression. And since as of now there are no approved immune-checkpoint inhibitors for ASPS, it is difficult to obtain the approval for the insurance to pay. We expect some of them to be approved for ASPS pretty soon so they will be available later if needed.

[danieldew7]

Yes my onco didn't discredit the current clinical trial, but he didn't give anything positive about the possible outcome neither.
My hospital called today that the resection schedule could be this month instead of the scheduled next month.

Best regards,
Daniel D.

[D.ap]

Daniel
Glad to hear of the surgery scheduled .
Thanks for the update.
Love,

[danieldew7]

Dear all,

Resection was done on March 2nd, they removed 13 Lt. supraclavicular lymph nodes with clear margin, safety margin at lateral 0.1cm.
The tumour size was 7*5*2 cm.
The next scan could be done around the end of this month or next month.

Thank you and keep healthy- stay out of corona.

[Olga]

Congratulations on the successful surgery! I am sure it feels good to have less tumor in the body. Stay safe

[danieldew7]

Dear all,

We found other met in the middle of humerus on last week bone scan and x-ray.
Resection is the best option for now before it breaks, and I will have PET and MRI tomorrow to check if there are other met and for pre-screening.
My vision is stay the same but it could go blurry for 10~30 m distance, it looks like the objects are slightly appear double.
It could be met to the orbital, that is why I also have the PET scan tomorrow.
I suggest CT but my onco said that PET and MRI is sufficient for now. Other appointment with my onco on next Tuesday.

Thank you and best regards,
Daniel D.

[Olga]

MRI is a very good scan for this situation. Also for the small met in humerus, one of our members had a RFA for the small bone met with a great success, and it is less traumatic than the resection

[danieldew7]

Dear Olga,

Thx for noticing RFA. I wil surely ask my onco for this possibility next Tuesday.

Best regards,
Daniel

[danieldew7]

Dear all,

For the previous left humerus met, RFA was not possible because of the infested area is too wide after another CT scan.
So another excision and intramedullary nail insertion were performed.
Not my picture but the whole concept is the same: https://www.researchgate.net/publicatio ... ng-the.png

Overall, here is the record of my treatment history:
2014.07.31 Rt. thigh excision
2017.02.09 Lt. lung thoracotomy
2017.12.26 Rt. lung thoracotomy
2018.03.30 Rt. humerus excision
2018.10.31~11.20 Doxorubicin + Olaratumab #2 -> PD
2019.05.07 Craniectomy & tumor removal
2019.12.11 Craniotomy & tumor removal
2020.03.02 Lt. neck excision w/ cervical lymph nodes removal
2020.04.07 Lt. humerus excision w/ intramedullary nail insertion

The current treatment plan is focused on removal of the mets on skull base (Around sphenoid area), as they already caused diplopia for about a month.
The other mets on skull calvarium and bilateral lung are the next priority.
My oncologist suggests excision on skull base, or Pazopanib, or both.
I asked for Atezolizumab availability but he said it is not available yet in Seoul National University hospital, but he suggested seeking 2nd opinion from the other two local hospitals as Atezolizumab itself is already available in South Korea.

Thank you and have a good day- any thoughts or comments will be very appreciated!

[D.ap]

Hi Daniel
How’d your PET go with your vision prob in March ?

2020.03.02 Lt. neck excision w/ cervical lymph nodes removal

Could it of been caused by your neck lymph nodes ? By referred pressure maybe ?

[Olga]

Hi Daniel.
Thank you for this detailed update. The life was pretty hard for you recently with the surgeries.
I am wondering why Keytruda (pembrolizumab) or Opdivo (nivolumab) are not considered based on numerous reports, including published, of immune checkpoint inhibitors efficacy in ASPS metastatic patients specifically.
new artcile was just posted recently by our member:
viewtopic.php?p=14784#p14784
also sample application for K or O is updated:
viewtopic.php?f=76&t=1482&p=11514#p11514
I am pretty sure that both, K and O are approved for other indications such as melanoma or lung cancer, if atezolizumab is approved.

atezolizumab also is a good choice as the more specific drug from the same class. But there is more published evidence in ASPS patients for Keytrude and Opdivo. If your oncologist is willing to work more on this subject, we are ready to provide the contact info for Ivan's oncologist to confirm long term efficacy of Keytruda in Ivan's case (2 years and ongoing).

[danieldew7]

Hi Debbie,
The diplopia itself was appeared right before neck surgery and keep worsening (before was 3m, now I see things double from 1m distance) since then.

Dear Olga,
I will visit other hospitals tomorrow and Monday since my current hospital only recommend Pazopanib and my onco said that no other drugs available at Seoul National University hospital, when I asked the reason he just tell me that it is the only drug available for this disease, and told me to consult other hospital as he doesnt have enough time to explain why due to other patient schedule.
I know other patient in Korea using Yervoy (Ipilimumab) at this moment, and I will ask the option for Keytruda (pembrolizumab) or Opdivo (nivolumab) since both of them are also permitted drugs under Korea Ministry of Food and Drug Safety.
I will contact you again should the one they needed for drug application is other patient's data.

Thank you,
Daniel D

[danieldew7]

Dear all,

Even the other local hospital only gave me Pazopanib as the only option. No other oncologist even gave me other recommendations.
So I start taking Pazopanib 800mg every day since 12th May and will be monitored again next month.

Best regards,
Daniel D.

[Olga]

Daniel - I am not sure from your post if you tried to arrange some ICI drugs - have you presented the information we have about Keytruda to either of doctors? Or you just asked re. options available?

[danieldew7]

Dear Olga,

Yes of course I brought the data and tell both oncologist about K, O, or atezolizumab but both of them said the same thing- the only available drug for this disease on my current condition is pazopanib.
I even had some arguing time but in the end, if there is no oncologist prescription I couldn't get the insurance drug so I had to agree with 1 month treatment first with this drug.

I will update the progress on TKI forum later.

Best regards,
Daniel D.