Daniel D in South Korea - Dx 2013

[Olga]

Daniel - was the testing done on a trial, by the trial rules? As much as we aware that pd-L1 or PD-1 negative test does not predict the response (especially in ASPS as it was already tested and found negative in many responding ASPS patients), if this test is required by the clinical trial rules, Daniel has to way to avoid it. But olaratumab is NOT a Immune checkpoint inhibitor but the PDGFRα antagonist so I am not sure why they tested the PD-L1? to move you to another trial? it required the PD-L1 positivity for the testing?
Daniel, I am so glad they have taken you off the trial. This trial is closed everywhere and was found to be harmful for the patients.
https://www.targetedonc.com/news/fda-em ... ue-sarcoma
It has nothing to do with the possible response to ICI drugs - immune checkpoint inhibitors like pembrolizumab (Keytruda), nivolumab (Opdivo) and atezolizumab (tecentriq). These drugs block different type of checkpoints, immune one not the growth one. Find a clinical trial for ICI drugs. If you are on steroids now after the surgery, try to go off slowly and allow the time before going on any ICI drugs/trials to restore the immune system first

[arojussi]

Pd1-status is just one prognostic factor for immunotherapy. Same is true for tumor`s mutational burden. Neither can predict exactly who will respond to immunotherapy. And with asps situation is even more strange. In general asps has very low mutational burden. Basically often asps only has mutation,that increases angiogenesis. Interestingly asps responses extremely well to immunotherapies and all pd1-targeting drugs seem to work and at the moment noneseem better, than others.

Basically only thing that truly matters is that indeed check point inhibitors seem to work in asps more than half of the time and responses are often long lasting. Situation isnt this good with any other cancer medicine. I often hear, that 5 percent or lower response rate. Indeed in ceneral response rate is low in sarcomas. So immunotherapy should only be used in cases like asps.

[danieldew7]

Dear Olga and Jussi,
Yes now that both of you mentioned it olaratumab is intended to block growth, not immune inhibitor.
I will point this in my next meeting next month.
About 5 days after cranial surgery, my left sight went weird, some objects and lines were mixed and went awry, the surgery team told me it is homonymous hemianopia symptom but will go away after a while. Yes the effect was only lasted for 3~5 days and they supplied me with choline alfoscerate and there is no further symptoms even when I didnt take it.

For Debbie questions,
My onco did protein test to detect that olaratumab pd-l1 isn't working for me. As for resected tumor on my skull, they didnt check whether it affected by olaratumab or not.

As for next step,
I will get another chest x-ray since there is no further growth since both of lungs resection and if the result stay the same, they will consider to remove the tumor in my left shoulder lymph, should there is no remarkable side effect. Any thought on this one? Lymph removal sounds a bit risky, please let me know should you know the risk of it such as lymphedema or other effect.
Thank you

[Olga]

There are usually multiple lymph nodes in the area, not the single one so may be your system will find a way to operate without this one. Women with breast cancer often have them removed and only some of them get Lymphedema.

[danieldew7]

Dear all,

So after a few months of stable condition, I got hematoma due to unknown origin (up to now) on left hip last month.
Both doctors from 2 hospitals (emergency surgery and current oncologist) told a bit different of cause, which is
- Emergency surgery result told me that the bleeding is from below left kidney after CT scan and surgery, while
- The current oncologist told me that the bleeding is perhaps due to metastasis hypervascular on the adrenal gland after seeing the CT scan result.

My current oncologist told me to wait for another 2 months for another CT and bone scan, and should there are no abnormalities he plans to give me pazopanib. This decision was due to the unknown origin of hematoma, metastasis probability, and the wait is due to the pazopanib anticipated side effect- which is bleeding.
Any comments regarding this matter will be appreciated.

Thank you and best regards,
Daniel D.

[Olga]

Ask to have an MRI of the adrenals/kidneys. To get that, tell the drs that we have few cases of the ASPS metastases to adrenals in the community. Check both sides, as sometimes they are bilateral. Also ask them to order the blood work with the adrenal hormones panel to see if there are anything not right.
Did you have the emergency surgery or now? it is not clear from your post.
Ivan had both asides adrenals metastases. Had them cryoablated by Dr.Littrup. They can also be surgically resected trough the approach from the back, read more here:
viewforum.php?f=80
what about immunotherapy access, have you done anything to get that? contacted the Merck or Bristol-Meyers offices for the compassionate access?

[danieldew7]

Hi Olga,

Yes, the MRI will be done in the upcoming January, no more available space before that. The blood test was done last week and my onco didn't say anything particular, I will ask about the blood test again later. The emergency surgery to stop the bleeding was done last month right after I have stomach ache.
I check the link and... well actually I cannot afford for one treatment that cost 12K Euro. The thing is medical welfare in Korea is very good handling cancer patient, we only have to pay 5% of medical expenses. Instead of further surgery either on my collar bone or adrenal gland, my onco suggest pazopanib first- it is also covered by welfare and my company covers almost all of that 5% expense.

Thanks,
Daniel D.

[Olga]

Daniel, if Merck or Bristol-Myers agree to provide Keytruda or Opdivo on a passionate basis, they usually pay for the most of the cost of the drug, or the government does it on an exceptional basis. We have the same system in Canada and had to fight to get K for Ivan, it is paid by the government now. They tried to force Ivan to start TKI first, offered Sutent. But we objected asking to provide an evidence of the results, and compared with what is already known for immonotherapy and there is no advantage for TKI - sutent or pazopanib - versus immonotherapy drugs. In South Korea it seems to be BMS Korea Pharmaceutical . The supportive articles to get K for ASPS is in the systemic treatments is here:
viewtopic.php?f=76&t=1482
When the emergency surgery was done to stop the bleeding, what exactly was done - what did they find was the source of bleeding and what did they do to stop it? Obtain the surgical report if not sure.

[danieldew7]

Hi Olga,

Thanks for the precious insight- I will push my onco to get nivolumab or pembrolizumab (K?).

Thanks again to remind me to check the medical record again, on scan during bleeding, there was hematoma of the left adrenal gland (Different from what they said that the bleeding is under left kidney), and a minute hepatic cyst detected.
During surgery, they used microcatheter and microwire, embolized by glue lipiodol (as contrast agent).
Post-surgery, the hematoma in left anterior pararenal and perirenal space was clearly absorbed significantly.

...hope I didn't misinterpret the Korean medical record.

Thank you,
Daniel D.

[Olga]

K=keytruda=pembrolizumab
opdivo=nivolumab

[D.ap]

Dear Olga and Jussi,
Yes now that both of you mentioned it olaratumab is intended to block growth, not immune inhibitor.
I will point this in my next meeting next month.
About 5 days after cranial surgery, my left sight went weird, some objects and lines were mixed and went awry, the surgery team told me it is homonymous hemianopia symptom but will go away after a while. Yes the effect was only lasted for 3~5 days and they supplied me with choline alfoscerate and there is no further symptoms even when I didnt take it.

For Debbie questions,
My onco did protein test to detect that olaratumab pd-l1 isn't working for me. As for resected tumor on my skull, they didnt check whether it affected by olaratumab or not.

As for next step,
I will get another chest x-ray since there is no further growth since both of lungs resection and if the result stay the same, they will consider to remove the tumor in my left shoulder lymph, should there is no remarkable side effect. Any thought on this one? Lymph removal sounds a bit risky, please let me know should you know the risk of it such as lymphedema or other effect.
Thank you

Hi Daniel
So you are off olaratumab and Doxorubicin after 2 doses .How about choline alfoscerate ?

Have you had any further surgeries since May other than the embolization to stop the bleeding ?

[danieldew7]

Hi Debbie,

Yes, I ended olaratumab and doxorubicin only after 2 cycles- the medication following cranial surgery was also ended after a few weeks and there is no abnormality on my sight. It just appeared after a few days after surgery and has gone on its own after a few weeks. The surgery doctor also didn't mention anything particular regarding this, only temporary post-surgery side effect.

No other surgery since May other than the embolization. My onco even not sure after seeing the CT scan but he suspects it to be metastasis in adrenal gland.

Thanks,
Daniel D.

[D.ap]

Thank you Daniel .❤️
Has the left shoulder lymph gland, resolved ?
That was seen in May of this year ?

[danieldew7]

Hi Debbie,

The one in my left shoulder is left untreated. My onco told me that surgery for that part would not help overall recovery, and only burden me with the surgery. The size itself is slowly growing but without significant size (Currently its diameter is about 5 cm). He still considering to remove it but after hematoma last month, the priority went to suspected mets in my adrenal gland.

Additionally, I just got some clinical trial information available in here, here are they just for sharing;
1.Pemetrexed, Cicplatin
https://nedrug.mfds.go.kr/pbp/CCBBC01/g ... amNo=31020

2.Avelumab (Bavencio)
https://nedrug.mfds.go.kr/pbp/CCBBC01/g ... amNo=31579

3.Durvalumab (MEDI4736/ Imfinzi), Pazopanib
https://nedrug.mfds.go.kr/pbp/CCBBC01/g ... amNo=31960

4.Durvalumab (MEDI4736)
https://nedrug.mfds.go.kr/pbp/CCBBC01/g ... amNo=31958

Thanks,
Daniel D.

[Olga]

Daniel - clinical trials 2,3 and 4 are for the PD-L1 inhibitors, one in combination with the TKI pazopanib.
The PD-L1 inhibitors are the more specific immun-checkpoint inhibitors that target the next step after the PD-1 (that Keytruda and Opdivo target). We have some patients on another PD-L1 inhibitor atezolizumab clinical trial and it was pretty active for them, as were the PD-1 drugs for other ASPS patients. We are unable to tell what is the best choice for ASPS patients. In your case, if there are no pembrolizumab or nivolumab trials are available, and also no off label access on a compassionate basis trough the pharma companies directly, the clinical trial might be a good choice.
The met on the arm being 50 mm is to big to keep like it is as according the immunotherapy clinical trials stats, the patients with the lower tumor burden have better chances to respond as bigger tumors have bigger immunosupressive effect. If it is easily resectable, I would resect before of the clinical trial. On the other hand, to be enrolled in any clinical trials, the targeted nodule has to be bigger than 10-20 mm - check the enrollment criteria. I do not remember what else do you have for a target.