Elisa on Atezolizumab + Bevacizumab

[Johannes]

Hi everyone,

Here is another update about Elisa.

Last year was difficult: Elisa had been off treatments for almost a year, and since some of the tumors had slowly started to grow we were thinking about the next possible treatments. Then she had a cardiac arrest caused by the metastasis in the heart, which had, as it turned out, grown to 7-8cm in diameter. It was all very dramatic, but Elisa was successfully reanimated and luckily did not suffer any brain damage.

Surgery not being an option, we considered radiation to the heart, but given the risks involved, we decided to go for another systemic therapy. So Elisa started Atezolizumab + Bevacizumab almost a year ago. She has tolerated the treatments fairly well, and the cardiac mass decreased significantly in size, which is extremely encouraging. And it shows that this combination is definitely active in ASPS (well, at least in Elisa’s case).

The other lesions (lungs and femur) remained stable. But now one long met has grown, from about 1.3cm three months ago to 2.1cm. Because it is located close to the heart, it seems that treating it with radiotherapy could become problematic if it grows further, so we are looking into doing stereotactic radiotherapy soon. Elisa is not at all happy about this, as she was very tired for many months after the last round of SBRT she received a few years ago. Otherwise, the oncologists’ plan is to continue with Atezolizumab + Bevacizumab, but we feel we should start thinking about a plan B.

I would appreciate any thoughts or suggestions!

With my best wishes,
Johannes

[D.ap]

Hello Johannes and Elisa,
I’m so glad the heart met responded to the Atezolizumab + Bevacizumab combination.
Plan bs are always a must , huh . Especially with ASPS !

Is the lung tumor unable to be surgically removed or are you all concerned about having to stop treatment if you all had surgery performed?

Also ,it is an increase is tumor instead of inflammation?

Our son has had several scares of inflammation in his lungs possible tumor progression that when biopsied ,were found to be just inflammation. The inflammation seems to of coincided with a bout with covid and also with a dose of a covid vaccine.

He’s currently on just Keytruda.

[Johannes]

Hi Debbie,
Thanks for your prompt response and encouraging words!
I don't think the lung met could be surgically removed (probably too central and close to the heart). Elisa did respond well to the obviously a lot less invasive stereotactic radiotherapy in the past, so in principle it would not seem like a bad option.
But it's really good you remind us of the possibility that this could be only pseudoprogression. It would be surprising though, after more than 10 months of treatment, and in only one lesion, right? At the same time, Elisa did have Covid less than 3 months before that scan... So perhaps we should wait and see what the next CT scan shows.
Thanks again,
Johannes

[D.ap]

Hello Johannes and Elisa

Joshua’s covid severity was quite minimal as far as symptoms,feeling tired and slight headache,. How well did Elisa weather the Covid virus? Did she by chance take Paxlovid?

Anytime a person embarks on a medication that is needed,Of course, immune suppression happens. So as you, as you know, inflammation can happen, and/or other mechanisms of the immune system aren’t at their optimal operation.

One of the best things that I’ve learned from this incredible cureasps. forum, is to always always have a Plan B. However I also learned to try and not implement that Plan B without a lot of thought, so consequently not in haste.

As we know, A.S P.S is a very rare sarcoma. Performing treatments, and adding medicines, take some type of toll on a persons overall well-being i.e.the immune system. That’s not what we want to do if we have a choice. Do something or wait and do nothing .To do nothing rather than something , is an incredibly hard decision to make. The wait and see.

With the immune system suppression , the persons body is left at a loss of one of the best tools that it has to combat our sarcoma. The immune system. Consequently, it can do more harm than good.
When this happens there’s a possibility of reoccurrence.
Our family refers to the reoccurrence, this phenomenon “as the beast rearing its ugly head.”😏

Please let us know how Elisa’s scans turn out. Thinking of you guys today and always.

Love,

[Johannes]

Hi again,

Quick update: radiotherapy is not a good option, because the area where the growing lung met is has already received a lot of radiation, so the risks would be too high. Moreover, the lesion in the femur has grown as well (visible on the MRI that was done last week, not on the earlier CT). So we are not talking about only one met that is not responding to the systemic treatment.

Durvalumab plus Tremelimumab would seem like a good option based on the encouraging data from the MD Anderson trial (https://pubmed.ncbi.nlm.nih.gov/35934010/). It seems though that none of these patients had received prior immunotherapy. Since Elisa has just been on Atezolizumab for almost a year, the response to another PD-1/PD-L1 inhibitor might be more limited, but perhaps adding the CTLA4 inhibitor will do the trick.

We are also looking into CAR T-cell therapy, but I am not sure we can organize something quickly.

All the best,
Johannes

[D.ap]

Hello Johannes,
What kinds of increases are you seeing on the femur , from
the ct scan to the mri?
Was there any prior treatments to the femur ?

The trial involving asps patients from USA and Canada of durvalumab and Tremelimumab..

https://cureasps.org/forum/viewtopic.php?p=10748#p10748

[Johannes]

Thanks, Debbie.
The latest MRI was compared to an MRI from last year (we know that comparing CTs and MRIs would be difficult!).
Johannes

[D.ap]

Thanks, Debbie.
The latest MRI was compared to an MRI from last year (we know that comparing CTs and MRIs would be difficult!).
Johannes

Certainly ☺️
The reason I ask if there was prior treatment and or treatments, to the femur is that in our experience those treatments can be exasperated by an ICI . Scar tissue can and will inflame, looking like progression…

Our son Joshua is on anti-seizure meds as he had had SRS to a brain tumor just prior to starting Opdivo. The inflammation being an inoperative area to remove the scar tissue, as well as an incredibly constrained area where the inflammation could not resolve, made us just treat the seizure with meds . A cost /benefit situation. I believe it to be termed as an IRAE. We used antiseizure meds first before considering steroids . They have worked to date .👍🏼

He has had inflammation in his lungs as well , where there is currently over 150 areas of scar tissue from his laser assisted thoracotomy was performed. Those areas of inflammation have been verified by biopsies to of NOT been active tumors .

[Olga]

Johannes, Hi, I missed this worrisome update.
Was anything done as of yet?
Just wanted to remind you that there is still might be an option of the cryoablation for that lung and femur met. If there are only 2 of them growing. Some mets may develop specific mutations resistant while the other ones don't.
Dr.Littrup has done cryo for Ivan in a very challenging location close to the heart with success.
It seems that moving to a new systemic treatment is better done after some wash out period and well coordinated with the local treatment, that might improve her chances to get a response again to another ICI

[Johannes]

Dear Olga,

Thanks for following up - what you say all makes sense. Trying to control the bone met (13cm long) with cryotherapy would seem difficult though, and radiation is not an option anymore.

Elisa did start the Nivolumab + Ipilimumab combination and has received three rounds so far, which she is fortunately tolerating well. Restaging will be done after the fourth round - will keep you posted!

Best wishes,
Johannes

[D.ap]

Hello Johannes and Elisa

Nhi is also on the nivolimab/Yervoy combination.
She is also battling femur tumors .

Looking forward to hearing of results with the new treatment.

Much love ,

[D.ap]

Dear Olga,

Thanks for following up - what you say all makes sense. Trying to control the bone met (13cm long) with cryotherapy would seem difficult though, and radiation is not an option anymore.

Elisa did start the Nivolumab + Ipilimumab combination and has received three rounds so far, which she is fortunately tolerating well. Restaging will be done after the fourth round - will keep you posted!

Best wishes,
Johannes

Hello Johannes and Elisa

How are the results of the nivolumab/Ipilimumab looking?

thinking of you both today.

Love,