Tom from Pennsylvania - Dx 2002, RIP 2021

[Olga]

Kathy, we need to know:
1. the type of scan that was done to find this new met in the sacrum, the size
2. what do they mean the tumor in his ribs that was treated with radiosurgery did not respond? usually the radiosurgery is a definitive treatment for the small ASPS mets. what was the size of the met and the treatment regimen? when was it done - how long ago?
3. the scanning needs to be verified by the different scans or biopsies as the inflammatory response mimicking the progression happen on ICI drugs

[Olga]

in addition to above - I would ask to biopsy the treated rib met and the newly discovered sacral met, to rule out the pseudo-progression/inflammatory response. We usually stand against unnecessary biopsies but not in the immonotherapy treatment situation.

[D.ap]

Hi Everyone,
I am writing with the news that Tom is no longer on the Atezolizumab trail. His recent scans showed a new tumor in the sacrum. He had another tumor in his ribs that was treated with radiosurgery and they feel that one did not respond. I don't have a lot of details as he took the call and learned the news as he was leading a board meeting, and I was with our girls at volleyball. Needless to say we have a ton of questions but I wanted to get the ball rolling on here. We would not have made it this far without this group and we are in need of guidance now. We have asked that they send us via email what they found and what they are proposing the next steps will be. I will post once we learn more. Even though I don't post a lot, there is not a day that goes by that we don't think of you all.
Kathy

Kathy ,

Tom has had a great response with atezolizumab and with the biopsy that Olga has suggested , I feel Tom could make a case for continued off label use of atezolizumab .

Sure hope you all are able to get answers to questions , soon .

Hugs and love
Debbie and family

[Olga]

The off label of Atezolizumab is not likely to happen, but Keytruda or Opdivo can be applied for.
Kathy, do people on the A. clinical trial know re. previous radiosurgery to the rib? Since it was done at the another institution and he was moved during the trial, they could have missed that. Ivan's irradiated soft tissue met that was done after the first Keytruda almost two years ago by some reason lit up on the recent MRI and they stated a new met, there were no MRI scans with this location previously as the radiology drs used CT, so the radiologist reading the last MRI did not find any mention of the met in the previous scans and decided it was new. I am actually going to investigate more thi met just in case (the radiology was already consulted and expressed their opinion that this were post-treatment changes but we will be keeping our eyes on it now).

[Kathy]

Olga and Debbie,
Thank you so much for your responses. I have taken all of your questions to Dr. Chen at NIH. I also copied Dr. Burgess at UPMC. I will let you know what we find out. I am thankful for the help.

Kathy

[Bonni Hess]

Dear Kathy, I am so sorry about Tom's recent diagnosis of possible sacrum and rib mets, and my heart and most caring thoughts are with both of you and your family. Since I don't have any direct personal experience with any of the Immune Checkpoint Inhibitor drugs like Atezolizumab, I am unable to offer any knowledgeable input or advice, but based on my extensive research and observations of other ASPS patients being treated with ICI drugs, I agree with Olga that the possibility of pseudo progression should be explored with Tom's oncologist and radiologist. I am holding VERY tight to Hope that ICI pseudoprogression is the cause of the newly diagnosed mets, and that Tom will be able to continue his Atezolizumab treatment which has thus far provided tumor shrinkage and stabilization of his disease. I will be anxiously awaiting your next update when your time and the situation allow, as I continue to hold dear Tom, you, and your family VERY close in my special caring thoughts with healing wishes, warm friendship, and continued Hope, Bonni

[Kathy]

Thank you all for reaching out and helping us navigate the next steps. We are heading down to NIH to discuss options on Monday. Here is what we are being told so far. The sacrum (bone) appears to have more extensive involvement of bone. The radiologist compared it to the one in January and felt it is more extensive. There is no involvement outside of bone. The other lesion is minimally larger. Psudoprogression usually is seen early in treatment, not after this amount of time.

Tom has had an increase over the past year of the number of bowel obstructions. He is dealing with bowel issues on a consistent basis. The Dr.'s at NIH have always told us they don't feel it is related to treatment but Tom feels otherwise.

Yesterday they sent Tom the following study. Has anyone heard of this trial yet. My gut is telling me no, but once again I feel it is best if we lean on all of you for your knowledge and help.

19-C-0123.1.Standar.190716.pdf

(357.14 KiB) Downloaded 379 times

I am hoping the attachment works!

Love to you all,
Kathy

[Olga]

Kathy,
some comments first with the questions.
1. The delayed pseudo-progression with ICI drugs was documented and cases published. Sometimes even years after the patients stopped ICI drug.
What do they say re. biopsy to rule out pseudo-progression and to confirm the true progression? What was the type of scan used?
2. I didn't know Tom had any sacrum mets. Is this the same met that Tom had the problems with in the spine before but they just call it differently?
3. re. clinical trial. I reviewed the combinations they offer - ask them how are they going to decide which one is appropriate for Tom? Durvalumab is again the Anti-PD-L1 antibody, the same as atezolizumab...
4. The intestines blocked cases are known on ICI drugs, I am not sure why would they disagree.
If you want there is a newer article with the full free text you can carefully review to see if there is something
Management of Gastrointestinal Toxicity from Immune Checkpoint Inhibitor
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6624661/

[Kathy]

Hi Olga, Thank you again. We are taking your questions with us to NIH on Monday.
1. they used Ct and MRI - A biopsy was done on a lymph node about 6 months ago that showed both live and dead cells. We will be asking again about a biopsy.
2. Yes, this is a different met than the on in the spine - that was the L4.
3. We will be asking this as well. I'll get back to you!
4. So if he were to move ahead with this trial, he would most likely have more obstructions? I think that would be a definite no for him.
Thank you for the article - I am going to read it now!

We appreciate your help,
Kathy

[Olga]

Kathy - you are saying that the biopsy was done on a lymph node about 6 months ago that showed both live and dead cells - where is this lymph node located? Was the rib met located in the bone? It could make sense to biopsy this one.
re. other possible ICI drugs. I would suggest to try the less specific inhibitor next time - not the PD-L1 but PD-1 like Keytruda or Opdivo, and the concerning mets can be re-treated before or during the treatment.

[D.ap]

Kathy and Tom,
Love to you 💞❤️

[D.ap]

It’s with great sadness that I announce the passing of TJ,Tom Coursen.

His efforts to over come Asps were duly noted in his every day efforts to rise above the pain caused by his unrelenting, disseminated mets.😢

As per Kathy , she would like all to know that TJ was a valiant warrior to the end.

Love and hugs to Kathy and the kids and family and friends .💞

https://www.daughenbaughfuneralhome.com ... 7tdDj4Qv6E

[MartinBube]

I'm so sorry to read this. I was following Toms story since I joined this forum.

[D.ap]

Hi Martin,

My thoughts too , of following Toms journey.Been following since 2013.

Toms story gives a pulse and a vivid picture his courage , determination as well as love for his family . His legacy will live on for eternity .

Hugs to all and let Toms determination and fortitude live on in each and everyone of us as we fight our own battles with ASPS.

Love to all,