Tamador for brain mets

[Illiniparent]

Our daughter has had ASPS for 9 years, typical slow growth, small tumors in lungs,until this summer, now lesions in abdomen,pelvis and brain, had two excised from brain in July followed by gamma knife in removed areas and for two smaller lesions, follow up MRI showed response but also showed new lesions, now started on chemotherapy regimen of Tamador
Anyone aware of results of Tamador with ASPS brain Mets ? And results on tumors elsewhere in body, lungs, abdomen, pelvis ?

[D.ap]

Hello

Our family has had good experience with Temador with brain tumors .. not really able to see good results elsewhere.

How big are the lesions that are being treated with the gamma knife in the brain ?

There were a total of 4 discovered with the MRI?

We used the temador as a Med to help aid the SRS be more affective in treating the brain tumors . It has a way of making the tumor more susceptible to radiation, as alveolar soft part sarcoma is known to be radioresistant because of how vascular it is … it takes higher doses of radiation to kill the tumor .


Here’s the link to our story and experience with temador .

http://www.cureasps.org/forum/viewtopic ... 8023#p8023

[D.ap]

Hello again ,
When you get a moment , could you let us know if your daughters oncologist have suggested the usage of any immune check point inhibitors?
Alveolar soft part sarcoma ( ASPS)responds better to having the immune system used rather than chemo ,that tends to suppress the immune system . ASPS is known to be both radioresistant as well as chemo resistant.

Hope today finds your daughter and yourself feeling stronger after the radiation and surgeries previously had .❤️

[Illiniparent]

Thanks for the responses. She had been on immune checkpoint inhibitors, previously had been on TKI drugs but developed severe neuropathy. Went off everything for a course of IVF egg harvesting. Went back on immunotherapy but this summer found the multiple brain lesions. After surgery and gamma knife plan was doxorubicin but after follow up brain MRI showed plan changed to Tamador.
Had 5x5x 4 cm removed from pelvis two weeks ago, recent scan showed 5cm Mass near kidney and other smaller ones in abdomen. Lung nodules , which had largely been stable for a long time, have now grown 25-50%. That is why we wonder about efficacy of a Tamador on lungs, abdomen.

[D.ap]

You are welcome for the response .
I understand the situation with your daughter is difficult and my heart goes out to you and your family, but if you could answer a couple of questions when able ..

The immune therapy was before tki ?
When and what was given ?

I’m afraid with the size of the tumor near the kidney, that Temador may not be the ticket to use in this scenario. It’s quite immune suppressive. What information was provided by your doctor to support this treatment?

As you all are probably aware of, her tumor load is quite significant and needs to be addressed sooner than later with continued courses of aggressive treatments, not unlike those that have happened to date.

How often are scans being performed?
Brain , lung and abdomen?

Is your daughter being seen by a sarcoma oncologist
?
What are the sizes of the lung tumors ?

[Illiniparent]

Thanks again, first treatment was aTKI, then immunotherapy, I don’t recall specific one , , nodules in lungs have grown, last scan, few weeks ago described largest as 2.1cm x 2.4 cm, two others described about the same size, also described enlarged nodes in mediastinum, 2.1 x 2.0 cm
Treatment has been at tertiary care centers , 2 different ones, both oncologist were sarcoma but neither had ever had an ASPS patient before, today met with radiation oncologist for treatment of brain Mets
Tumor burden definitely has us worried

[D.ap]

In reference to brain met treatments, gamma knife can be used multiple times . Whole brain radiation is not very affective at all with asps .

Brain mets certainly would be your number 1 concern right now , as far as I can understand.

What’s your primary oncologist saying ?

[D.ap]

Morning ,

With brain Mets having been found prior , I wonder if neuropathy was caused by one of the brain Mets ?

We had brain Mets found 2 years after our son Josh had his primary in his right upper thigh removed . He’s had a total of 6 brain tumors treated successfully,to date. His diagnosis was in 2012 so our journey parallels your daughters time line.

After the brain treatments , he experienced the same disseminated tumors in his abdomen .. adrenal gland , kidney and liver , and tumors in his lungs.

He was down to 93 lbs in 2015 and 5months later in 2016 after one last brain tumor was treated , he started on Opdivo at 110lbs. This weight gain took a lot of effort. His tumor load was too much for his body at the time . We consulted a dietitian and gastroenterologist to get his weight back up.

He responded immediately and to date has reduced his tumor load from over over 15cms in his right lung and probably half that in left lung , and his liver and kidney, adrenal tumors of more than 10cms of tumor volume .

Brain Mets are serious and should be addressed first and foremost. However they are not a reason to give up on the patients care. They will need to be eliminate in the most aggressive means possible.

The fight needs to be fought, for your daughter's care.

Thinking of you all today.
Sincerely,

[Olga]

I would advocate going back to immunotherapy. It is often effective after the restart. Egg harvesting procedure is done on the pretty high hormone dose and that might have been the reason for the following progression and reduced sensitivity to immunotherapy treatment. As the hormonal level is back to normal now, immunotherapy might work again. Find out what immunotherapy drug she had before, let us know. Evaluate that 5cm near kidney met, if it is in the adrenal gland. What country are you from?

[Illiniparent]

Thanks for the comments, she had a gamma knife treatment last Thursday and starts next round of Tamador on December 19,Drs are focusing on the brain mets, at meeting with oncologist last week Dr said was hopeful the Tamador would impact the other, pelvic , abdominal, tumors,
We’ll ask again about immunotherapy,
Treatment has been at tertiary care centers , at both , she has been only ASPS patient

[Illiniparent]

To answer an earlier question, before the IVF egg harvesting break from treatment, she was on Keytruda

[D.ap]

Hello ,
At what age was your daughter diagnosed and how long was she on Keytruda?

During her time on Keytruda did her tumors remain stable and were they reduced ?

Where was the primary located ?

I hope today finds her quickly recovering from the gamma knife treatment.

[Illiniparent]

Diagnosed at 24, now 33, primary was in thigh, quadricep area , large 13x5x4 cm.
Tumors did seem to remain stable when on Keytruda and were only in lungs , only after stopping for IVF egg harvesting did follow up scans find lesions outside lungs
Started second cycle of Tamador two days ago, dose upped to 200 from 150, nausea on day 1 but that is better now
Again, all, thanks for any information

[D.ap]

Thank you for the information.
It sounds like by the size of your daughters primary, that she has had ASPS for some time ? Maybe in her early teens ?

[D.ap]

Thanks for the comments, she had a gamma knife treatment last Thursday and starts next round of Tamador on December 19,Drs are focusing on the brain mets, at meeting with oncologist last week Dr said was hopeful the Tamador would impact the other, pelvic , abdominal, tumors,
We’ll ask again about immunotherapy,
Treatment has been at tertiary care centers , at both , she has been only ASPS patient

How’s your daughter weathering the gamma knife treatment ?
How big and how many tumors were treated?