Cure Alveolar Soft Part Sarcoma International (iCureASPS)

D.ap wrote: Sun Aug 22, 2021 6:12 pm 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?

Ivan wrote: Sat Aug 14, 2021 11:51 am 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.

Couchpotato1999 wrote: Fri Jul 02, 2021 9:55 pm
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.”

D.ap wrote: Sat Sep 25, 2021 7:20 am

Couchpotato1999 wrote: Fri Jul 02, 2021 9:55 pm
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%?

Olga wrote: Fri Sep 24, 2021 11:20 pm 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

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.

D.ap wrote: Tue Sep 28, 2021 5:56 am

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?

ntran727 wrote: Wed Sep 29, 2021 8:23 pm 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!

ntran727 wrote: Wed Sep 29, 2021 8:23 pm 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!