Sam from Florida - Dx 2007

[jcs2007]

Olga, I just want to say that I really appreciate this website for helping us over the past 12 years. I wish we had treated that pesky lung met before it caused trouble, but we were so focused on what to do with the pancreatic met at that time which is the reason we chose to do systemic verse surgery for pancreases. Thanks for mentioning the SBRT and cryoblation treatment options since I forgot about that option that we did in 2013. I’ll keep posting about His treatment on Anlotinib so others will know the side effects etc.
take care and thanks again for the advise( I asked why do the pet scan after I read your post because I thought the same thing regarding pet scans and asps)

[D.ap]

Cindy and Olga

I’ve asked the same of PET.
FDG comes to mind.

My understanding technology with the readings can show more details of success ? And or assesment to know to where to go / not to go with treatments ?


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5048410

And rather than a bone scan it could of shown TKI mapping success or not of sorts ?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3075495/
/
I bet there was a baseline scan with the clinical trial as a end comparison upon leaving the trial

[jcs2007]

Hello, I haven’t updated my son’s treatment in awhile since he went on Anlotinib in 2019. It has controlled lung Mets very well with the main side effect was foot and mouth ulcer and fatigue. Sadly, Sam had a brain met removed in January and will need radiation too( choose that route verses removing all tumor which would require removing eye). The plan is to stay on Anlotinib while doing radiation. It was so disheartening to have another brain surgery when he was getting ready to start a new job. I feel this sarcoma is like playing the wack a mole game, where it just keeps popping up. He did get 1st dose of covid vaccine and only had a sore arm. He has CT scans this Tuesday so fingers crossed. Sending warm wishes to all ASPS fighters!

[Olga]

Cindy,
thank you for the update. It is very sad to hear that Sam had to have a surgery to remove the brain met. Was it discovered just recently? How often were his brain scans scheduled? You have mentioned he had a scull met before, what was done about that met then?
The location of this new met looks tricky. What type of irradiation is scheduled to treat the remaining part of the tumor?
I would ask about adding few immune checkpoint inhibitors treatments - Keytruda or Opdivo - as it is obvious that this brain met is based on the mutation not responsive to TKI.

[D.ap]

Hello Cindy and Sam,

I’m so sorry to hear of the brain tumor. Your description of how ASPS is like a game of wack a mole is spot on.😕

I agree with Olga in that an immune check point Med could be a better choice with the radiation ? Sam has a propensity for tumors developing in the head / cranial area and the ICI could possibly create more of an antigen in situ vaccine type response ?
Just a thought.

How big of area is needed to radiate the remaining residual tumor?
If corticosteroids are needed, ici’s can possible be a Med that endures and weathers their immune suppressive tendencies .

Let us know of the scan results .
Good to hear from .

Much love,

[jcs2007]

Hey, thanks Olga and Deb for your quick response and I was going to ask about Keytruda or like drugs verses just doing Anlotinib with radiation. I don’t know the exact size of the remaining tumor after debulking and removing on Jan 8,but the issue is that it involves the orbit so future vision loss is possible. The radiation is IMRT for 33 visit starting Wednesday. We were getting brain mri yearly but 2020 changed that so he was over due. In 2016, he had brain met removed from cerebellum then 1 gamma knife treatment. He did axi/pembro for a year then on Anlotinib. He started having eye issue so went to ophthalmologist who recommended drops, but then started having headache 2weeks later, so off to the ER since he was over due for brain mri and had a history( I will not let that happen again). I’ll keep you posted after our visit on Tuesday. 🙏

[D.ap]

Hi Cindy ,
I’ve been doing a little research this weekend to review radiation and ICIs and came across this excellent article on head and neck response while using radiation and icis with folks that have squamos cell carcinoma .

Where else does Sam have active tumors ?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6414812/

[jcs2007]

Thanks Deb for that article. Sam’s doctor put him back on Anlotinib ASAP since there was also slight growth of lung Mets at the initial view of the CT. He’d been off Meds for 2 months and there maybe a new spot in his cheek. He went off while healing from brain surgery and wisdom tooth pulled. He started radiation treatment today. The plan is to do Anlotinib and radiation and reevaluate his situation. I asked about IcI but dr. Wants to get as much out of alotinib as possible. People keep asking me why we don’t do pet scan so i explain the weirdness of asps but maybe you guys can help. I’ve encouraged him to drink lots of water and eat more fruits and berries. Any other. Suggestions?

[Olga]

Is he on steroids after the brain surgery/going to be during the radiation?
re.diet - more food with the insoluble fiber would be advisable in case he is potentially going to be on the ICI, the body needs to be prepared - improve microbiome and get a wash out period for steroids.
Re. PET scan - bigger faster growing ASPS can also be found by PET, due to increased metabolic rate. Not the smaller ones though.
Smaller ASPS is very much treatable by the cryoablation, if you have any experienced dr in the network ask for the referral - lung mets, small bone mets.

[jcs2007]

Thanks Olga, although I hadn’t posted in a while, I jump on and read post especially Ivan’s. I thought I read something on his page about diet and micro. Sam was not placed on steroids this time. He started radiation yesterday which they are using the most precise beam so we had to drive alttle further to use it, but that’s ok. Now, we also have to check out his cheek area( makes me think of Jussi with his jaw progression😔) He started Anlotinib on Tuesday,since he was off 2 month the dr. Didn’t like how the lung Mets had slight growth in some but still need the final report. Thanks again

[jcs2007]

Well, Sam finished radiation treatment to right brain( frontal and orbital) last Monday and has fatigue and bad headaches off and on. Sadly, the ct of craniofacial left jaw showed a tumor.Head and neck surgeon recommend surgery for cheek and mandible by using bone from fibula. He has no pain here but just uncomfortable and there is a risk of breaking his jaw if he bites something too hard. He is still on Anlotinib with reg. Scans in May where we will discuss his mouth issue. Never a dull moment with ASPS. He is doing probiotics and vit C. Luckily, vision is ok so far!

[Olga]

I am very sorry to hear about the new tumor in a left jaw - this type of surgery is pretty painful. Do you have a chance to consult with cryoablation dr re. alternative management plan? Dr.Littrup is the best but perhaps there is some experienced dr in your network/area? If the tumor is relatively small, it might be worth looking at.

[D.ap]

Thanks for your imput. Deb, Sam was diagnosed 2007 at 12yrs old and removed primary tumor in left quad. He just completed 1 yr on axi/ pembro trial in Miami but just kicked off due to new met in femur. We are waiting to meet with orthopedic oncologist to see what treatment is needed. Then may explore other trials like anlotinib. This disease is exhausting!

Hi Cindy and Sam,

You’ve all been thru the gambit of treatments and surgeries over your journey from 2007 to current.
And I want to say how sorry I am to hear of Sam’s latest happenings .

I’m with Olga in that I’d explore a less invasive procedure like an ablation before the rather extensive surgery.

Have you all discussed moving to another immune therapy and or back to Keytruda off label ? Your case could be made that it worked for the most part for Sam, just not the femur.

I’m certainly not a doctor but with Sam having a tumor in his jaw and taking Anlotinib , seems rather counterproductive as it’s known to destroy osteoblasts ?

[jcs2007]

Thanks Olga, I hadn’t considered that but will definitely look into that as a possibility. This tumor came on quickly. It is 4.7cm and involves muscle and bone. I just wonder if Keytruda would help shrink it too? Also, would like something that helps with blood-brain barrier since this is his 2 brain tumor. Thanks for your input.

[D.ap]

😊 Cindy we must of been writing at the same moment .