Sam from Florida - Dx 2007

[D.ap]

Great news Cindy !

What was the explanation for the benign ? bone tumor?
Happy holidays to you all too!
Love

[Olga]

Cindy - did they say what it could be? Does it look like the resorptive bone lesions - newly found side effect of ICI drugs? Or perhaps some other ICI side effect, some of them are very rare. Ivan has already got few that are pretty rare or may be under reported. People on a clinical trial might have better understanding than the local doctors, but you can also ask for the rheumatologist consulted as they usually manage all autoimmune diseases and might know what to look for.

[Bonni Hess]

Dear Cindy, Thank you for the thoughtful update with the very good news results of dear Sam's biopsy showing that the suspected lesion is very thankfully not ASPS. Since the biopsy results seem to indicate that Sam doesn't have disease progression, will he be able to resume his participation in the Pembrolizumab/Axitinib Clinical Trial? My most positive thoughts and very best wishes will be with Sam and your Family for his 3 month chest/abdominal CT and PET scan this week, and I am holding very tight to Hope that the scan results will show continued stable disease. I'm sorry for Sam's post biopsy physical restrictions, but am grateful he is recovering well and Hope he will allow his body to just rest and heal completely. Happy Holidays to you, Sam, and your Family,, and may the New Year bring renewed good health and a permanent ASPS treatment and cure for all of our ASPS Community patients. Sharing the great joy and relief of Sam's non-ASPS biopsy results with special caring thoughts, healing wishes, love, and continued Hope, Bonni

[jcs2007]

Well, there is no real answer on what this lesion in his femur was but possible tumor that was attacked by immune cells. Either way , once you are kicked off trial,there is no going back on it per coordinator. I’m disappointed since the lung and pancreatic mets were shrinking! Looking at the Alotinib trial at Miami which could be started quicker than off label Keytruda. The new Dr did mention if this new med didn’t work or stopped working then we’d revisit immunotherapy.
Ps. His thyroid was affected so went on med but no issue with potassium at this time.

[Olga]

First re. thyroid - was the level down or up? If the med means to get it up, try to have him on a lower dose possible - there are numerous hints that higher thyroid levels help cancers to evade the immune surveillance. People are even trying to lower their thyroid levels as apart of the cancer treatment.
Second - I would not start any treatment till there is a sign of progression, and even more - if there is an isolated progression in some met, I would treat it with the radiosurgery and wait to see how the rest of the mets reacts. Sam might have already developed the tumor specific immune cells population, and in some people even short duration of the ICI drugs treatment is enough to keep the memory cells replicating and circulating all over the body. And yes, the lesion in the bone might very well be what remains after the tumor was there and was attacked by the tumor specific immune cells. Some ASPS mets are easy to miss on any scans, so it might been missed before.
There are discontinuation studies, when people were taken off ICI drugs trials by reasons other than progression, previously documented responded to it. In melanoma, about 75% were progression free long after they stopped - obviously when immune system developed the cancer specific immune cells it, they can carry on. In people that progressed, some responded again to re-challenge with ICI drugs off label. I have no idea what other drug that is being proposed can do to this immune cells memory. Any trials have to have the firm evidence of progression for enrollment anyways.
When are his next scans? Last scans results?

[D.ap]

Cindy
I so sorry Sam was not allowed back on the trial..
I did a search on the forum beginning with CD3 and cd3t
And ended up on a conversation I had had with Rachel Reinsvold , back when she was on the trial for MEDI4736 (now called Durvalumab) and Mogamulizumab
( Poteligeoat ) at MD Anderson .

http://www.cureasps.org/forum/viewtopic ... =Cd3#p8952

The below link talks of the sustaining performance of the pd1/and or Pdl1 meds even after being discontinued .
(May have to go to NCBI library as is now a login access only :/)

https://www.onclive.com/conference-cove ... -treatment

I agree with all Olga is suggesting as it seems Sam was having positive response to the Keytruda / axitinib .(as you said also). : )

How often did Sam have bone scans ?
Can that be checked to see if it had been missed ?

As Olga has pointed out ICI have been reported to of affected bone integrity .I’ll add , as can happen in some patients on TKIs.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4996701

/
Calcium levels ok and with what I’m reading , bone density testing can be performed as well .

Also IF progression is seen , Jussi pointed out what we have all seen to be true , of using ablative methods to reinvigerate the memory cells to possibly systemically attack any remaining tumors .. micro or not.

http://www.cureasps.org/forum/viewtopic ... =60#p12860

[D.ap]

CIndy
Not trying to clutter your posts , however Olga’s question about whether Sam is hypo or hyper thyroid is an important piece of info. : )

[arojussi]

Interesting situation. Sam was kicked of the trial after developing fibrous lesion. As this lesion isnt asps there is no disease progression, so getting to a new trial can be difficult. Also response to anlotinib are practically never long lasting. However immunesystem can achieve long lasting responses lasting years or even decades. This is the reason why I push for immunotherapy. In asps mixed responses are very common, so reading scans and evaluating progression in asps with immunotherapy is very difficult.

[jcs2007]

Thanks for the valuable information. As for the thyroid, Sam was placed on Levothroxine for hypothyroidism after 5 or 6 months of being on Axi/Pembro trial. We just did CT of lungs and abdomen so waiting on the results and a brain mri is at the end of the month.He is recovering from the leg biopsy. He planned to start the anlotinib trial because he does not want a repeat of last years emergency pulmonary embolization( prior to the axi trial),but I’m wondering about that immune memory concept. We also are curious about the atezolizumab trial too.
Happy Holidays

[D.ap]

Cindy
Hi again
What dose is Sam on? To bring his levels up?

[jcs2007]

Hey, Deb, they recommend to go up to .50 of levothroxine. He has Pet scan and brain mri after Christmas so we’ll see what it shows. Take care!

[Olga]

What is the PET scan for? it is usually not very useful scan for ASPS unless the tumor is bigger and has a very developed blood supply. Smaller ASPS tumors usually show low intake on PET scans.

[D.ap]

Hey, Deb, they recommend to go up to .50 of levothroxine. He has Pet scan and brain mri after Christmas so we’ll see what it shows. Take care!

Cindy ,

With Sam being off the Keytruda /axitinib trial , have the docs checked his thyroid levels recently ?
Maybe he could be off it soon as .50mcg is a step up from the lowest level of .25mcgs.

[jcs2007]

Hello, Sam is actually on .05mg levothyroxine which brought his levels within normal range. His brain mri should a spot on the skull that looks like the same lesion that was in his femur but brain was clear. Pet scan was done as a required end of study protocol for the axi Pembro trial. Since his lung mets should small growth, Sam wanted to go on the Alotinib trial since he does not want to risk another pulmonary issue( pulmonary embolization procedure really scared him more than the brain tumor). Quote: “Miami docs have kept me going for the past 10 yrs so I trust them”
So far he is on 12 mg which is causing some fatigue and nausea but he take it a bedtime which helps. He wants to get back to grad school because looking for a full time job seems impossible with his side effects and traveling every three weeks to Miami, but he needs something to do.
Prayers for all ASPS patients and family members!

[Olga]

Cindy,
yes having a good medical team to care for you is a really good thing and we did not mean to contradicts their recommendations - they have all the information versus us having just some, for example we didn't know re. lung mets progression and this is why I said may be better do nothing, and it explains why the another trial was recommended.
As for the pulmonary issue and a pulmonary embolization procedure - it is a very rare event in our patients, the concerning lung mets are usually managed by the cryoablation or SBRT before they cause any symptoms (they are determined in advance based on the more aggressive growth and proximity to some lung structures). Ivan had numerous lung mets cryoablations with Drs Littrup and Aoun and it was good. But if he get an access to a promising systemic treatment at the clinical trial - it is a good idea too.