Ps in reference to what else to investigate thru the pathology report , phase ll pertaining to atezolizumab here in US with ASPS,is looking at baseline to current comparisons to biomarkers ?
The atezolizumab has been very successful in severe ASPS patients with spinal mets/ bone mets .
“Our biomarker study is ongoing. We are looking at immune biomarkers in paired biopsies taken at baseline and up to 4 weeks after the last dose of study treatment. Response will be correlated with expression of potential immune biomarkers in paired biopsies.”
https://www.targetedonc.com/news/atezol ... rt-sarcoma
Maybe yourself or Olga, have an idea on how this could be found by virtue of the path report.
Paraffin verses frozen , I’m not sure of what’s best .
Saskia from Germany - Dx 2019 at 23 years old_RIP Aug 2020
Re: Saskia from Germany - Dx 2019 at 23 years old
Good morning,
Thx for those further ideas to be discussed.
I will ask to consider also Atezolizumab in comparison to durvulumab and tremelimumab and will ask pathology to look diligently into biomarkers and effects of meds she had before.
We will try to make them not rush through just too quickly and give her time to recover as it is really a huge primary to be removed. I freak out a little about how it will look like. This afternoon the surgeon will explain the planned ongoing.
Tanja
Thx for those further ideas to be discussed.
I will ask to consider also Atezolizumab in comparison to durvulumab and tremelimumab and will ask pathology to look diligently into biomarkers and effects of meds she had before.
We will try to make them not rush through just too quickly and give her time to recover as it is really a huge primary to be removed. I freak out a little about how it will look like. This afternoon the surgeon will explain the planned ongoing.
Tanja
Re: Saskia from Germany - Dx 2019 at 23 years old
Tanja and Saskia ,
Maybe discuss TMB?
I’d be surprised if it was found to be of a high measurement .
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6249625/
Hugs , love and prayers.❤️
Maybe discuss TMB?
I’d be surprised if it was found to be of a high measurement .
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6249625/
Hugs , love and prayers.❤️
Debbie
Re: Saskia from Germany - Dx 2019 at 23 years old
Lets just wait for the pathology results from the surgery and the skin lesions biopsy. It takes time for the full pathology report to be ready. First the surgical report - how did the surgery go, surgical margins obtained etc. Then the pathology report. Everything else is irrelevant as of now, all that discussion about the best path to proceed is going to be based on the reports.
there is no need to request any additional pathology slices, they always make the paraffin blocks in a good amount so you can take some if needed but I think the pathology report is mostly enough, the drs rarely request the tumor tissue itself. Unless it is a clinical trial that requires that.
Good luck with the surgery. The arm problems and a headache is a worrisome sign and the brain MRI is going to be needed soon after the surgery, but I would not to attract to much attention to this before the primary is resected, they can cancel the surgery.
there is no need to request any additional pathology slices, they always make the paraffin blocks in a good amount so you can take some if needed but I think the pathology report is mostly enough, the drs rarely request the tumor tissue itself. Unless it is a clinical trial that requires that.
Good luck with the surgery. The arm problems and a headache is a worrisome sign and the brain MRI is going to be needed soon after the surgery, but I would not to attract to much attention to this before the primary is resected, they can cancel the surgery.
Olga
Re: Saskia from Germany - Dx 2019 at 23 years old
Resection went well today. Whole tumor is removed completely. Not sure if this meant R0. Vascus lateralis is removed with it. Ischias nerv is intact. Leg and foot can move. Professor Schwarzbach was satisfied with everything as per our wish for resection. He said the tumor seemed pretty active. Let's see what all the reports will tell us in detail.
Saskia feels fine so far. Lost 1,5liter blood therefor is pretty tired. She gets oxygen for better breathing but as standard.
Oncologist already asked for approval for durvulumab and tremelimumab at our insurance. Juhu
We will also see a neurologist for saskia's arm to be checked in the next days.
Now let's hope and pray for abscopal effect and a better development we so much need after the last 9 months.
Tanja&Holger&Saskia&Keanu
Saskia feels fine so far. Lost 1,5liter blood therefor is pretty tired. She gets oxygen for better breathing but as standard.
Oncologist already asked for approval for durvulumab and tremelimumab at our insurance. Juhu
We will also see a neurologist for saskia's arm to be checked in the next days.
Now let's hope and pray for abscopal effect and a better development we so much need after the last 9 months.
Tanja&Holger&Saskia&Keanu
Re: Saskia from Germany - Dx 2019 at 23 years old
Thank you so much for the update. Tell Saskia that the other leg muscles will fill the place where the removed one was and as the time goes, it will not be that visible. Ivan's arms look practically the same in shape, just the scar where the tumor was.
Do not plan to start the new immunotherapy if approved to soon, give it a time. Also Opdivo can be requested as an alternative if durvulumab and tremelimumab are not approved. We have the success cases stories with Opdivo if needed for the insurance request.
Do not plan to start the new immunotherapy if approved to soon, give it a time. Also Opdivo can be requested as an alternative if durvulumab and tremelimumab are not approved. We have the success cases stories with Opdivo if needed for the insurance request.
Olga
Re: Saskia from Germany - Dx 2019 at 23 years old
Tanja , Saskia and family ,
Great news!
Here’s to a speedy recovery !
Much love ,
Great news!
Here’s to a speedy recovery !
Much love ,
Debbie
Re: Saskia from Germany - Dx 2019 at 23 years old
Hi Debbie and Olga,
She indeed is speedy :) started walking only 2 days after surgery and exercises now with one crunch.
Her arm is getting better, she receives physiotherapy for arm and leg. Neurologist checked.
Told her all leg muscles will overtake now.... Like Josh's recovery.... She wasso happy. It must have been a real burden to her to had to know this tumor was in her leg growing and hurting so much. Mentally she changed a lot right now and is way more happy.
Re treatment:
- what kind of time frame have you been thinking of suggesting a little break before starting a new treatment to give her a rest?
Last immunotherapy was on 23rd Dec, surgery now on 14th jan
- tremelimumab is indeed not approved in Germany. Oncologist will ask directly at producer MedImmune.
- alternative suggestion in case nothing works with the producer: Ipilimumab and nivolumab/Opdivo combination to get PD1 and CTLA4 covered
I'd love to come back to your offer: could you pls provide docs/reports/studies for our insurance?
Do you have reports for the combination Ipi+opdivo as well?
Do these relate to Asps?
I so hope to find the right way now because if next immunotherapy fails, insurance will not approve any other ICI anymore but only chemo (oncologist said).
Thx so much for all your help and support. And thank GOD all went well (they scared us to hell the day before surgery as to stress that all was only our wish)
Tanja
She indeed is speedy :) started walking only 2 days after surgery and exercises now with one crunch.
Her arm is getting better, she receives physiotherapy for arm and leg. Neurologist checked.
Told her all leg muscles will overtake now.... Like Josh's recovery.... She wasso happy. It must have been a real burden to her to had to know this tumor was in her leg growing and hurting so much. Mentally she changed a lot right now and is way more happy.
Re treatment:
- what kind of time frame have you been thinking of suggesting a little break before starting a new treatment to give her a rest?
Last immunotherapy was on 23rd Dec, surgery now on 14th jan
- tremelimumab is indeed not approved in Germany. Oncologist will ask directly at producer MedImmune.
- alternative suggestion in case nothing works with the producer: Ipilimumab and nivolumab/Opdivo combination to get PD1 and CTLA4 covered
I'd love to come back to your offer: could you pls provide docs/reports/studies for our insurance?
Do you have reports for the combination Ipi+opdivo as well?
Do these relate to Asps?
I so hope to find the right way now because if next immunotherapy fails, insurance will not approve any other ICI anymore but only chemo (oncologist said).
Thx so much for all your help and support. And thank GOD all went well (they scared us to hell the day before surgery as to stress that all was only our wish)
Tanja
Re: Saskia from Germany - Dx 2019 at 23 years old
It is good to hear Saskia condition and spirit improved. The massive imflammed tumor is a big burden for the body and also the pain and depression are the immuno suppressive forces by themselves.
There is a file with the text for the immunotherapy request with some artcles being re. K and some re. Opdivo
viewtopic.php?f=76&t=1482
we should do more research on Pubmed and add any new articles there
There is a file with the text for the immunotherapy request with some artcles being re. K and some re. Opdivo
viewtopic.php?f=76&t=1482
we should do more research on Pubmed and add any new articles there
Olga
Re: Saskia from Germany - Dx 2019 at 23 years old
Hello Tanja and SaskiaSaskia wrote: ↑Mon Jan 20, 2020 1:31 am Hi Debbie and Olga,
She indeed is speedy :) started walking only 2 days after surgery and exercises now with one crunch.
Her arm is getting better, she receives physiotherapy for arm and leg. Neurologist checked.
Told her all leg muscles will overtake now.... Like Josh's recovery.... She wasso happy. It must have been a real burden to her to had to know this tumor was in her leg growing and hurting so much. Mentally she changed a lot right now and is way more happy.
Re treatment:
- what kind of time frame have you been thinking of suggesting a little break before starting a new treatment to give her a rest?
Last immunotherapy was on 23rd Dec, surgery now on 14th jan
- tremelimumab is indeed not approved in Germany. Oncologist will ask directly at producer MedImmune.
- alternative suggestion in case nothing works with the producer: Ipilimumab and nivolumab/Opdivo combination to get PD1 and CTLA4 covered
I'd love to come back to your offer: could you pls provide docs/reports/studies for our insurance?
Do you have reports for the combination Ipi+opdivo as well?
Do these relate to Asps?
I so hope to find the right way now because if next immunotherapy fails, insurance will not approve any other ICI anymore but only chemo (oncologist said).
Thx so much for all your help and support. And thank GOD all went well (they scared us to hell the day before surgery as to stress that all was only our wish)
Tanja
If I might ask ,what contrast Med was suspect to the arm problem ?
Debbie
Re: Saskia from Germany - Dx 2019 at 23 years old
There is no studies that would compare the combination immunotherapy regimens versus single ICI drus in ASPS. The combination comes with the increased toxicity and an unknown benefits (if any). Since Ivan had an advanced heart metastases when we started Keytruda, we did not consider its combination with Axitinib to make it easier for him. We could add the Axitinib later if needed/no response.
The most reasonable drug to try is Opdivo - the same rate of response in melanoma and we have the responses in our ASPS patients plus some published cases. And the drug is approved for other indications. I would even asked to continue Keytruda after the surgery recovery is over, with addition of the SBRT to some single lung met in attempt to improve the immune recognition. But first you need to get the full surgical report and the histology report for the primary and the skin met to see if there are any signs of the immune infiltrates. Then we can discuss the strategy to potentially improve the immune response (sbrt to the single safely located met a day before the ICI treatment, fecal transplant, better plant based diet with the good amount of the insoluble fiber to improve the microbiome, no antibiotics or steroids and off pain killers for let say a month before of the next ICI administration). We still do not know if it was the real or pseudo progression - it should be seen from the surgical reports. After the leg is recovered from the surgery, the immune suppressing environment might be way down in her body and she might have better ability to develop the tumor specific response than before.
The most reasonable drug to try is Opdivo - the same rate of response in melanoma and we have the responses in our ASPS patients plus some published cases. And the drug is approved for other indications. I would even asked to continue Keytruda after the surgery recovery is over, with addition of the SBRT to some single lung met in attempt to improve the immune recognition. But first you need to get the full surgical report and the histology report for the primary and the skin met to see if there are any signs of the immune infiltrates. Then we can discuss the strategy to potentially improve the immune response (sbrt to the single safely located met a day before the ICI treatment, fecal transplant, better plant based diet with the good amount of the insoluble fiber to improve the microbiome, no antibiotics or steroids and off pain killers for let say a month before of the next ICI administration). We still do not know if it was the real or pseudo progression - it should be seen from the surgical reports. After the leg is recovered from the surgery, the immune suppressing environment might be way down in her body and she might have better ability to develop the tumor specific response than before.
Olga
Re: Saskia from Germany - Dx 2019 at 23 years old
Wonderful answers, thanks a lot. This helps so much.
I will for sure try to calm down Saskias oncologist to not rush to get treatments approved right now and continue right away.
We wait for all reports first.
Debbie, I don't know the name of the contrast med. It was for the CT.
Saskia is soooo happy, completely different to all the months before with this massive "alien" in her leg
Tanja
I will for sure try to calm down Saskias oncologist to not rush to get treatments approved right now and continue right away.
We wait for all reports first.
Debbie, I don't know the name of the contrast med. It was for the CT.
Saskia is soooo happy, completely different to all the months before with this massive "alien" in her leg
Tanja
Re: Saskia from Germany - Dx 2019 at 23 years old
Hello
Unfortunately Saskia had MRI yesterday because of suddenly again terrible headache and we discovered (what we've been already anxious of) brain Mets.
There is a clump of 3 sticking somehow together and look pretty huge. Don't know the size. Maybe 2, 5 to 3cm. We don't know yet. It's at her left frontal overlap. Guess this caused her problem and paralysis of her right arm?
She got cortisone to reduce the swelling.
Additionally she has one smaller met on the right frontal overlap and a little met occipital. They also mentioned tiny satellites.
It's now discussed to have a surgery with resection of the big clump and radiation. Or only radiation. We have no outcome yet.
Oncologist thinks nothing might help anymore but that's her (more or less) opinion since may. We don't want to give up and Saskia is also really fighting!
I told the oncologist that resection if possible is always the good option. Right?
She said to consider full brain radiation.
But my mind tells me to only radiate small locations to not suppress the immunsystem. Right?
Can you pls pls give advise, feedback and a report for prove how we could continue?
Saskia is on good care right now at "low" intensive care station.
I still hope now for abscopal effect because of resection primary, maybe resection brain Mets and small radiation plus then to start with opdivo or Atezolizumab.
Pls let us know
Tanja
Unfortunately Saskia had MRI yesterday because of suddenly again terrible headache and we discovered (what we've been already anxious of) brain Mets.
There is a clump of 3 sticking somehow together and look pretty huge. Don't know the size. Maybe 2, 5 to 3cm. We don't know yet. It's at her left frontal overlap. Guess this caused her problem and paralysis of her right arm?
She got cortisone to reduce the swelling.
Additionally she has one smaller met on the right frontal overlap and a little met occipital. They also mentioned tiny satellites.
It's now discussed to have a surgery with resection of the big clump and radiation. Or only radiation. We have no outcome yet.
Oncologist thinks nothing might help anymore but that's her (more or less) opinion since may. We don't want to give up and Saskia is also really fighting!
I told the oncologist that resection if possible is always the good option. Right?
She said to consider full brain radiation.
But my mind tells me to only radiate small locations to not suppress the immunsystem. Right?
Can you pls pls give advise, feedback and a report for prove how we could continue?
Saskia is on good care right now at "low" intensive care station.
I still hope now for abscopal effect because of resection primary, maybe resection brain Mets and small radiation plus then to start with opdivo or Atezolizumab.
Pls let us know
Tanja
Re: Saskia from Germany - Dx 2019 at 23 years old
Hello Tanja,
It’s so so scary for a family / patient to hear of brain tumors being seen. Too many emotions and thoughts, however know that hope is always , always to be found !
That day is still fresh in my mind when our son had his MRI show his first showing of brain tumors. It was devastating.
We moved on and here we are going on 8 years later !!
We’ve had excellent medical folks give us great advice AND offer outstanding positive support , to never give up our fight . We researched and sought out folks that were not naysayers, because we knew of the rare and limited knowledge , of ASPS.
I will write more later but I wanted to send hugs and love and positive support.
Hugs ,
It’s so so scary for a family / patient to hear of brain tumors being seen. Too many emotions and thoughts, however know that hope is always , always to be found !
That day is still fresh in my mind when our son had his MRI show his first showing of brain tumors. It was devastating.
We moved on and here we are going on 8 years later !!
We’ve had excellent medical folks give us great advice AND offer outstanding positive support , to never give up our fight . We researched and sought out folks that were not naysayers, because we knew of the rare and limited knowledge , of ASPS.
I will write more later but I wanted to send hugs and love and positive support.
Hugs ,
Debbie
Re: Saskia from Germany - Dx 2019 at 23 years old
Thank you debbie
We are so so scared.
Resection will be on Friday of the big clump 3mets 6cm! Frontal overlap. And 4cm oczipiatal.
The pressure in her head is so huge that without surgery she may die in 1 or 2 weeks they said.
So we convinced for surgery.
But nevertheless they said this will only prolong life for some weeks because they think the other small Satellites will also grow fast again.
How can that be?
I don't know the radiation plan for afterwards and hope it will not be for the full head, right?
I so want to trust your words for a longer life. God help
Tanja
We are so so scared.
Resection will be on Friday of the big clump 3mets 6cm! Frontal overlap. And 4cm oczipiatal.
The pressure in her head is so huge that without surgery she may die in 1 or 2 weeks they said.
So we convinced for surgery.
But nevertheless they said this will only prolong life for some weeks because they think the other small Satellites will also grow fast again.
How can that be?
I don't know the radiation plan for afterwards and hope it will not be for the full head, right?
I so want to trust your words for a longer life. God help
Tanja