Jack from Los Angeles - Dx Feb 2021

[Ivan]

Did the oncologist get back to you about a radiation target? The idea is to stimulate PD-1 response. This is the best long term strategy.

[D.ap]

Hello Jack ,

Welcome . 😊

I was reading your introductory post and was wondering if your primary was considered to of been located deep in your lower right back area .. were ribs involved or where was the primary tucked into ?

What kind of symptoms alerted you to the tumor being there?

Are you receiving lower abdomen scans as well as chest CT’s?

[Couchpotato1999]

Hello Jack ,

Welcome . 😊

I was reading your introductory post and was wondering if your primary was considered to of been located deep in your lower right back area .. were ribs involved or where was the primary tucked into ?

What kind of symptoms alerted you to the tumor being there?

Are you receiving lower abdomen scans as well as chest CT’s?

Hello! My primary was located deep in my lower right back, below the ribs. I don't know the exact location, but it seemed like it was tucked in behind the back muscle......

Initially there were no symptoms. I just noticed a lump there in December of 2020. But ever since I noticed the lump, it got bigger real fast. By the time I had it removed at the beginning of March 2021, there was a constant dull sore feeling at the tumor site.

Now the tumor is completely removed, and nothing has grown back yet at the primary area.

Yep, I am receiving routine abdominal scans, and so far it hasn't metastasized beyond the lungs.

[Couchpotato1999]

Did the oncologist get back to you about a radiation target? The idea is to stimulate PD-1 response. This is the best long term strategy.

Ya I asked my oncologist about that, he said he doesn't think it's a good option because generally the success rate for radiation induced PD-1 response is small.

[Couchpotato1999]

Sooo I've just had my 2nd CT Scan, here's my timeline and latest update:

March 03, 2021 - PET CT Done showing mets in the lungs.

April 08, 2021 - Started Pembrolizumab 200 mg, once every 3 weeks

June 22, 2021 - Regular CT of Chest and Pelvis showed the tumors grew in size compared with the PET CT done back in March. For example, one tumor that was 13mm grew to 18mm. Although the comparison was limited due to non breath holding during the PET CT Scan. No new mets in the abdomen.

July 9, 2021 - Started Axitinib 5 mg, twice a day, and continue to take Pembrolizumab.

September 20, 2021 - Regular CT of Chest and Pelvis showed the tumors grew in size some more. That same tumor which was 18mm now grew to 21mm. Another tumor which was measured to be 8mm on the previous scan is now 10mm. No new mets in the abdomen, and no regrowth at the site where the primary tumor was removed.

[Olga]

Hi Jack
thank you for the update. Perhaps your oncologist should revisit the idea of trying to trigger the immune response by some local treatment to one or few bigger lung mets - radiosurgery, cryoablation. You need to start treating them anyways as they grow. Ivan had to have 5 open lung surgeries to clean his lungs before Keytruda came to the market. Dr.Suh still probably works in LA or in the area. He is an interventional radiologist. Find him, consult re. abscopal effect. https://www.uclahealth.org/providers/robert-suh
we used Dr.Littrup for cryoablations he is the best but he in Detroit. Dr.Suh is also a very good choice to get consultation

[D.ap]

July 2 2021

“Hello, I'm Jack from Los Angeles. I was diagnosed in February of 2021.

Had surgery to remove the primary tumor from my lower right back at the beginning of March. Tumor size was 5.8 cm x 4.7 cm x 8.4 cm. Lucky MRI from March showed no visible mets in the brain yet.

There are a lot of mets in the lungs. One that's 18 mm, one 15 mm, around 8 more mets under 10mm, and over 50 micro-nodules. No symptoms.

Currently on Pembrolizumab, have already completed 5 injections out of 6, with very minimal side effects so far.

Latest CT scan does not show any positive response to the Pembro, so now I'm starting Axitinib. Hopefully the TKI will help.”

July 3 2021

“The 2 largest tumors actually grew around 50-75% after 4 Pembro injections (CT was done on the 14th week after starting Pembro). So we're not sure if it's pseudo-progression or real progression.”

Hi Jack ,
So your largest lung tumor is what size? You are 6 months post surgery and also 6 months into your Keytruda /axitinib medications?
You had said some of your tumors grew 75%?

[Couchpotato1999]

July 2 2021

“Hello, I'm Jack from Los Angeles. I was diagnosed in February of 2021.

Had surgery to remove the primary tumor from my lower right back at the beginning of March. Tumor size was 5.8 cm x 4.7 cm x 8.4 cm. Lucky MRI from March showed no visible mets in the brain yet.

There are a lot of mets in the lungs. One that's 18 mm, one 15 mm, around 8 more mets under 10mm, and over 50 micro-nodules. No symptoms.

Currently on Pembrolizumab, have already completed 5 injections out of 6, with very minimal side effects so far.

Latest CT scan does not show any positive response to the Pembro, so now I'm starting Axitinib. Hopefully the TKI will help.”

July 3 2021

“The 2 largest tumors actually grew around 50-75% after 4 Pembro injections (CT was done on the 14th week after starting Pembro). So we're not sure if it's pseudo-progression or real progression.”

Hi Jack ,
So your largest lung tumor is what size? You are 6 months post surgery and also 6 months into your Keytruda /axitinib medications?
You had said some of your tumors grew 75%?

My primary tumor was pretty big (located in my lower right back). It was 5.8 cm x 4.7 cm x 8.4 cm

Yep I am almost 7 months post surgery, and 6 months into Keytruda. But I've only taken Axitinib for 3 months. The 2 largest tumors grew by ~40% when comparing the first PET-CT to the second Regular CT scan. But then between the Second Regular CT Scan and third Regular CT scan, they've increased by about 20% - perhaps because I started taking Axitinib.

[Couchpotato1999]

Hi Jack
thank you for the update. Perhaps your oncologist should revisit the idea of trying to trigger the immune response by some local treatment to one or few bigger lung mets - radiosurgery, cryoablation. You need to start treating them anyways as they grow. Ivan had to have 5 open lung surgeries to clean his lungs before Keytruda came to the market. Dr.Suh still probably works in LA or in the area. He is an interventional radiologist. Find him, consult re. abscopal effect. https://www.uclahealth.org/providers/robert-suh
we used Dr.Littrup for cryoablations he is the best but he in Detroit. Dr.Suh is also a very good choice to get consultation

Hi Olga, thanks for the suggestion, I will look into it. I saw the oncologist today, and for now we're gonna stop the Pembro + Axitinib combination, and try the Anlotinib (Catequentinib). So I'm gonna start in about 2 weeks, and take that for 8 weeks and see how the scan goes.

Hopefully it would be more effective for me, because Anlotinib is approved for use in China, and as I understand it was developed by a Chinese company. I am also of Chinese ethnicity...hopefully it works for me lol.

[D.ap]

My primary tumor was pretty big (located in my lower right back). It was 5.8 cm x 4.7 cm x 8.4 cm

Yep I am almost 7 months post surgery, and 6 months into Keytruda. But I've only taken Axitinib for 3 months. The 2 largest tumors grew by ~40% when comparing the first PET-CT to the second Regular CT scan. But then between the Second Regular CT Scan and third Regular CT scan, they've increased by about 20% - perhaps because I started taking Axitinib.

Hello again Jack,

For some clarity , your largest tumor currently is 18mm?
So you are talking about your first lung tumor scan maybe right after your surgery or before being compared to now ,when you talk of the 60% increase?

[Couchpotato1999]

My primary tumor was pretty big (located in my lower right back). It was 5.8 cm x 4.7 cm x 8.4 cm

Yep I am almost 7 months post surgery, and 6 months into Keytruda. But I've only taken Axitinib for 3 months. The 2 largest tumors grew by ~40% when comparing the first PET-CT to the second Regular CT scan. But then between the Second Regular CT Scan and third Regular CT scan, they've increased by about 20% - perhaps because I started taking Axitinib.

Hello again Jack,

For some clarity , your largest tumor currently is 18mm?
So you are talking about your first lung tumor scan maybe right after your surgery or before being compared to now ,when you talk of the 60% increase?

Yep here is a more detailed timeline:

March 03, 2021 - PET CT Done showing mets in the lungs. The largest met measured 13 mm.

March 05, 2021 - Had surgery to remove the primary tumor

March 31, 2021 - Had lung biopsy where the largest tumor was biopsied to confirm ASPS before starting Pembro.

April 08, 2021 - Started Pembrolizumab 200 mg, once every 3 weeks

June 22, 2021 - Regular CT of Chest and Pelvis showed the tumors grew in size compared with the PET CT done back in March 03. For example, the largest tumor that was 13mm grew to 18mm. Although the comparison was limited due to non breath holding during the PET CT Scan. No new mets in the abdomen.

July 9, 2021 - Started Axitinib 5 mg, twice a day, and continue to take Pembrolizumab.

September 20, 2021 - Regular CT scan showed the largest tumor grew from 18mm to 21mm. Another tumor that used to be 8mm on the June 22 scan grew to become 10mm. So the Pembro + Axtinib treatment did not shrink any tumors, and it looked like in general many tumors got a little bit bigger. However, the growth appears that it might be slowing down because I started taking Axitinib (???)

Most of my larger tumors are located in my right lung, so we felt that it would be worth while to try the Anlotinib first and see how that works, before looking at more extensive treatments.

[ntran727]

Hi Jack,

Seems like your lung Mets are growing slowly at around 1mm a month on average and did seem to be slower growing after the addition of axitinib. My thoughts are if it is too soon for you to give up on Pembro and axitinib since you have been working on lifestyle changes which may then allow for better response to immunotherapy in due time. For me, I was on Pembro starting June 2020 alone, then axitinib was added October 2020 but I continued to have growth in my lung Mets at about the same rate as you are having it. Finally my scans in March 2021 (9 months after starting Pembro + 5 months of Pembro + axitinib) I finally had stabilization of the lung Mets. Scans after that showed significant shrinkage of the lesions. I am not sure what finally made my body respond but it finally did. If I had given up on the treatment and switched to something else then I would’ve missed out.

Anlotinib is promising but it is still another TKI and likely doesn’t have the potential to cure as immunotherapy has for some people (of course we don’t know this for sure but seems people can get off treatment and still have response), so I would want to know for sure first that the immunotherapy isn’t working before I switched treatments as long as the lung Mets are not growing rapidly and there are no new tumors. I understand though your wanting to switch since it has been 6 months already but just wanted to share my story and thoughts. ASPS is a long battle and choosing the right treatment and the timing of it can be crucial to one’s survival.

I hope you have kept up all the lifestyle changes as well.

Keep us updated with your treatment plans and take care!

[Couchpotato1999]

Hi Jack,

Seems like your lung Mets are growing slowly at around 1mm a month on average and did seem to be slower growing after the addition of axitinib. My thoughts are if it is too soon for you to give up on Pembro and axitinib since you have been working on lifestyle changes which may then allow for better response to immunotherapy in due time. For me, I was on Pembro starting June 2020 alone, then axitinib was added October 2020 but I continued to have growth in my lung Mets at about the same rate as you are having it. Finally my scans in March 2021 (9 months after starting Pembro + 5 months of Pembro + axitinib) I finally had stabilization of the lung Mets. Scans after that showed significant shrinkage of the lesions. I am not sure what finally made my body respond but it finally did. If I had given up on the treatment and switched to something else then I would’ve missed out.

Anlotinib is promising but it is still another TKI and likely doesn’t have the potential to cure as immunotherapy has for some people (of course we don’t know this for sure but seems people can get off treatment and still have response), so I would want to know for sure first that the immunotherapy isn’t working before I switched treatments as long as the lung Mets are not growing rapidly and there are no new tumors. I understand though your wanting to switch since it has been 6 months already but just wanted to share my story and thoughts. ASPS is a long battle and choosing the right treatment and the timing of it can be crucial to one’s survival.

I hope you have kept up all the lifestyle changes as well.

Keep us updated with your treatment plans and take care!

Hi Tran, thanks for sharing your thoughts. This makes sense and I will discuss with the Oncologist.

He did tell me that another reason he thinks we should try the Anlotinib now, is because it's a Phase 3 trial and they don't know how much longer the trial will be going.

I've also consulted with an Oncologist at MD Anderson, and he told me that sometimes when the patient has been on Pembro + Axitinib for a few months, it's good to stop taking it before your body start developing tolerance to the drug, and try another drug instead. Then we can switch back to Pembro later.

[Couchpotato1999]

Also from my understanding, your case of Keytruda starting to work after 9+ months into treatment is statistically rare.

[Couchpotato1999]

Hi Jack,

Seems like your lung Mets are growing slowly at around 1mm a month on average and did seem to be slower growing after the addition of axitinib. My thoughts are if it is too soon for you to give up on Pembro and axitinib since you have been working on lifestyle changes which may then allow for better response to immunotherapy in due time. For me, I was on Pembro starting June 2020 alone, then axitinib was added October 2020 but I continued to have growth in my lung Mets at about the same rate as you are having it. Finally my scans in March 2021 (9 months after starting Pembro + 5 months of Pembro + axitinib) I finally had stabilization of the lung Mets. Scans after that showed significant shrinkage of the lesions. I am not sure what finally made my body respond but it finally did. If I had given up on the treatment and switched to something else then I would’ve missed out.

Anlotinib is promising but it is still another TKI and likely doesn’t have the potential to cure as immunotherapy has for some people (of course we don’t know this for sure but seems people can get off treatment and still have response), so I would want to know for sure first that the immunotherapy isn’t working before I switched treatments as long as the lung Mets are not growing rapidly and there are no new tumors. I understand though your wanting to switch since it has been 6 months already but just wanted to share my story and thoughts. ASPS is a long battle and choosing the right treatment and the timing of it can be crucial to one’s survival.

I hope you have kept up all the lifestyle changes as well.

Keep us updated with your treatment plans and take care!

Hi Tran - would you be able to let me know which institution / Oncologist is treating you?

I think that might be helpful info to give to my Oncologist, in case if my Oncologist wants to contact your institution for reference.

Thanks !