Sam from Florida - Dx 2007

[jcs2007]

Deb, thanks for your input too. Dr. Trent mentioned getting as much out of Anlotinib as possible at the moment verses switching. He had been off Anlotinib for 2 months after brain surgery so I assume that’s when the mandible met grew? I had plan to ask that question about Keytruda again at his May appointment. We just wanted to finish the brain treatment but jaw surgery seeem very invasive even though the dr. Said people do quite well in recovery, but my mind goes to Jussi. Thanks again!

[D.ap]

Hello Cindy ,
Yes I’m so sorry you all have to be at this juncture and have to make these difficult decisions .

I’m not sure that the progression wasn’t already happening prior to Sam stopping the Anlotinib .

You are right in being concerned and wanting something to address the brain / head tumors . With the possibility of jaw surgery you will absolutely need a Med on board and I would venture to say that Sam would have to be off Anlotinib 8-12 weeks ?

I believe with an ICI like Keytruda he could be on it during the surgery period .
If you ablated while on an ICI , it could possibly give Sam the antigen trigger to aid the immune system to attack the brain tumors and other tumors throughout his body and then follow up with surgery if need be.

Here’s an article to ponder on .

viewtopic.php?p=13716#p13716

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6069027/

Good night and hugs to you mom.💞

[jcs2007]

Hey, I cannot believe I haven’t posted in such a long time but Sam has been super busy with doing wound care after his mandible tumor was removed in 6-1-21. The surgery went well but his jaw and leg where they took bone from formed wounds that are finally healing. He goes 3x a week for bandage changes and has done several grafts on the leg. His wound care doctors have gone above and beyond to help him. Next, unfortunate news is that the skull met that was .8mm for many years just grew to 1.6mm and he has a new met in his femur and knee area which is causing a lot of pain. He is still on Anlotinib,but I’m sure that is about to change. He has an appointment next week to discuss these new findings. Just looking for any questions I should ask regarding treatment options. Luckily, his lung mets are stable and brain is currently clear but these new bone Mets are concerning. Thanks for any suggestions?Fighting ASPS 2007!

[D.ap]

Hi fellow ASPS fighters! My son sammy was diagnosed last year at age 12 with ASPS.
He had no systoms. We just happened to find the lump on his left thigh. After 3 mos.
ct scans there now seems to be a change in lung mets, so our oncologists are discussing
medicines and or future surgeries. \

I just wanted to personally thank all those who posted past and present treatments.
They will help us in our future decision making!
Blessings,
cindy stokes

Hi Cindy ,
Was reviewing Sam’s history and where his primary was in 2007.
The femur tumor is how big ? Is it in the same area as the primary ?
Is the skull tumor able to be surgically removed ?
They are pretty sure that it is ASPS?

[jcs2007]

Hey, the primary was in his left outer thigh which has not had any reoccurrence so this new tumor ( 12cm) is in his right femur/ knee and caused pain last week. The radiation oncologist recommend radiation for the knee but not for the skull. Sam will go off Anlotinib and start atezolizumab, but meets with orthopedic surgeon ( he did Sam’s first surgery 2007)tomorrow to determine treatment for the femur/knee since we don’t want it to break. The skull met may need to be surgically removed too but hoping for some shrinkage from medicine? Also, he’s still doing wound care too but that’s improving. We are pretty sure it’s asps since that has always been the case.

[D.ap]

Hi Cindy,
So the atezolizumab will be administered before treatment on the skull met you think ? Does it appear that the knee bone is involved with the tumor ? How long has it taken for the tumor to get to 12cms ? Is this the same area that was growing when Sam came off Keytruda and axitinib in 2018?
That would be about 2.5mm or so , a month if so .

[jcs2007]

This knee/ femur met wasn’t there last year but it was called aggressive by 2 MD’s since it grew large and fast.Sams been on a lot of antibiotics this past year which I don’t know if that’s related or not. The orthopedic surgeon wants to do radiation and change to Atezul medicine to see if we get it to shrink. He wants to wait on surgery since Sam is still in wound care from 2021. He’s using a wheelchair and crutches to keep weight off of it. The one doctor mentioned that he feels the TKI can cross blood brain barrier but there can be these non responding bad actors but we’ve gotten as much out of Anlotinib as we could. Hoping the medicine will shrink the skull met since radiation isn’t an option,(Thanks for the feedback.Always thinking of Josh)
The spot in 2018 was higher in the hip so a different area and that biopsy was negative for asps and looks ok.

[D.ap]

Hey Cindy,
Was the knee scan an MRI?

12cms in less than a year doesn’t sound like Asps ?

[jcs2007]

Yep, it was an mri of the femur. The surgeon called it aggressive and destructive but I’m afraid his leg ct were done 6-2021 and xrays and sonogram 12-21. This ongoing wound care of his left leg has really affected him in 2022. The idea is to hopefully shrink it with radiation and new Atezolimunab medicine then remove what’s left of the tumor, but this pain is tough so It will be a long week. In the past,all the tumors have been ASPS so idk except we need to monitor the bone closer now.Thanks for your feedback.

[D.ap]

Hey Cindy ,
I’m so sorry to hear of the debilitating issues with Sam’s legs ..
So the oncology team is on board with radiation being performed on Sam’s leg ?
If it were say a benign cyst , wouldn’t the radiation not be needed ?
Is is your understanding that there is really no definitive way to know if it is ASPS , without a biopsy?
I understand their apprehension to doing a large surgery with Sam’s jaw still healing as well as his need to reduce the leg pains ..

[jcs2007]

I guess all the doctors who viewed his MRI are sure it’s a tumor verses a cyst so he had his first Atezolizumab infusion yesterday which I am hopeful It helps him since he’s had progression these past 2 years. He is excited about this new medicine but not too thrilled about radiation. However, he wants the knee pain improved. Thanks for your advice and imput!

[D.ap]

Hi Cindy ,
What’s the schedule for the radiation treatments?
I’m sure not a doctor however there is a known schedule to administer the radiation during or before the administration of atezolizumab or any other immune checkpoint inhibitors.
I hope that there is discussion to that affect to begin to insure Sam a chance of reducing his leg tumor and consequently his pain.

Sending prayers you alls way .

Love,

[Olga]

Cindy,
I am sorry to hear about this development. Just to let you know, we had the patient who said he was so much better when the affected leg was resected and prosthesis was installed. He said, should have done it earlier.

[jcs2007]

Unfortunately, after 3 infusions of Atezolizumab, Sam has had Mets in his left rib, sternum, and hip increase in size. Also, many lung Mets have grown which most of these spots have been dormant for many years. He is doing radiation for the knee which has helped with the pain. The plan now is to meet with a thoracic surgeon and our previous orthopedic oncology surgeon who started this journey with us in 2007. We will then discuss other systemic options as well to see what is the best plan. I was hoping it was just pseudo progression but his doctors don’t think that is what is happening. Fortunately, his leg wound from the 2021 surgery is 95% healed but his jaw wound opened again so back on antibiotics. Thanks Debbie and Olga for your constant support on this site for all of us.

[D.ap]

Hi Cindy,
So this 3xinfusion equals 9 weeks or 12 weeks ?
How’s the leg radiation area looking, as far as irritation etc ?
I wonder if Sam needs some time to recoup before embarking on any more immune suppressive treatments? How’s his weight ?