Cure Alveolar Soft Part Sarcoma International (iCureASPS)

As all of you know, Josh after developing disseminated disease ,was given the opportunity to try Opdivo.
We began July 27th with 144.2mg and have been on an every 2 week schedule since then.
We did have a brain MRI in August as Josh was having slight headaches and the scan showed the beginning of reduction then.

Our scans were scheduled out at about the 4 month mark to hopefully allow opdivo to go through its course of attacking, inflammation, then having the scan show reduction of Joshua's brain, lung, adrenal, pancreas, kidney and liver tumors.

A left-side upper lung tumor as well as his pancreas and 4 of his brain tumors were affected. The most dramatic was the left side upper lung and that returned to its size it was 12 months ago and the pancreas that lost 10 mm. His remaining lung tumors and 3 brain tumors remained stable. His liver showed significant increase which in 3 months we hope to show reduction. We are hoping that it is a sign for pseudo progression not metastatic disease progression.
This is a great article to read and or give to your oncologist when embarking on an immune therapy med.
it pertains to scan readings and inflammation.

http://cureasps.org/forum/viewtopic.php?f=2&t=1282
It's a new frontier for all involved .

With the opdivo, blood work and weight are looking excellent, and Josh has been a trooper experiencing a couple 2 to 3 day immediately after the infusion feeling of malaise. His breathing and ability to walk /do activities is amazing to me . This time last year after taking about 6 weeks of sutent he became very sick and had to stop. He lost weight quickly and coughed pretty much night and day.

2015 was the first time of any systemic treatment. It blows me away of the night and day between the Sutent and the Opdivo side effects.

We will be receiving our 10th infusion this week and maybe visiting about the Portugal Sarcoma conference with our doctor as he had been an attendee.

Thank you for the report.
It is good to hear that he started to use Opdivo having the well documented signs of the systemic progression and now already half of the mets are showing reduction, so we'll hope that the rest will follow. It looks like there is some advantage for the patient to have the new ICI drugs on a compassionate use versus clinical trial setting as with the mixed response like that they could take him off the trial? I am wondering if the scanning/reporting criteria are updated given pseudo-progression widely discussed now.
Could you remind us what systemic treatments did Josh try besides Sutent if any?

Olga
You are so correct
If on a trial , Josh could of been taken off because of the report of progression .

Temador was used after Joshua had completed both SRS treatments on his brain 2014 3 months and December 2015, 3 months after
It was the only med we knew to use available to cross the blood brain barrier.

http://www.curetoday.com/articles/immun ... dscape?p=1. Not sure if this has already been shared on this forum, but I share it again anyway.

And by the way I found one melanoma patient on melanoma forum who used immunotherapy. His other tumors reacted well, but liver mets got bigger at first. Later he became NED or NEAD.

Jussi or Mikko

I've been reading on the liver and how it's difficult to infiltrate with meds

https://www.ncbi.nlm.nih.gov/m/pubmed/26186144/

Un clothing the vascular system and or blocking the vascular building by using immune meds allows the immune system to attack the rogue cancer cells by virtue of the immune system big time and begins to take care of the cancerous cells?
The scan shows inflammation ?Is that your understanding ?


Thank you from the bottom of my heart for the input

I know that life is difficult for us all some days however be it having friends like you gets us over the horizon
to the proverbial rainbow
Thank you for the words of encouragement my friend
Love
Debbie

As far as I know there is no way of seeing difference between progression and pseudoprogression in CT or MRI. At first I found it hard to believe that liver could get worst while weight was improving. Then I found this melanoma patient with liver mets. I think that this information increases the likelihood of liver growth being inflammation, but there is no way to be certain.

I'll visit with doctor tomorrow
We are and have been guardedly optimistic until we see the next scan and we are able to at least give Opdivo a chance .
I have been looking for research articles on using radiation and cryablation with immune therapies . Immune drugs being relatively new makes it hard to find finalized papers.
By virtue of a friend on face book he gave us all the possibile reason to why the immune therapy works
At least in bladder cancer etc

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4063144/
In theory it's our understanding that it increases the Pdl1 expressions , and with some clinical trials those pdl1 makers are being looked for prior to the patient being admitted.
It's in clinical trials using Atezolizumab.

I'm sure that it's more clinical than that and there can be too much of a good thing in any treatment that is administrated

Morning all
Jussi pointed out , in our discussion , discerning pseudo
progression and Joshua's overt symptoms , i.e. Weight gain verses liver increase on CT scan

arojussi wrote:As far as I know there is no way of seeing difference between progression and pseudoprogression in CT or MRI. At first I found it hard to believe that liver could get worst while weight was improving. Then I found this melanoma patient with liver mets. I think that this information increases the likelihood of liver growth being inflammation, but there is no way to be certain.

In talking with Dr Powers , we talked of performance of the PET verses the CT in diagnosing what is actually going on in Joshua's liver
So here's my best guessmation to what was said

Yes we could look at a PET scan but more than likely we would see lots of activity and maybe still have the same opinion, clinically , that it is possibly the Opdivo at work because

1) Josh is doing so well clinically i.e. Energy ,
weight gain , little physical side effects
2) blood work is looking great over all.

Joshua's thyroid apparently has been flucating to the low side and he has been feeling joint pains BUT we are at 112.6 bs!! Up 15 lbs from July

And Olga, about your question on doctors views on scan readings , we were distracted and never came back to the topic. However in talking with the doctor I truly felt that the group , Dr Tap (MSK), DrJudson, are better equipped to fight the mainstream masses with better information to demand further treatment for ASPS

Hello all
We have had a great report and are moving forward with our 11th infusion

We are at a whooping 115 lbs today
So happy is this mom
Bp up a bit 127/80 from his 6 month average 110/65 ish,o2 100 ,HR 96. Maybe from hitting the ground running to make 9:30 appointment this morn

Sleep cycle needs adjustment but that's our home work

Thyroid to be rechecked next appointment
Liver kidney and else within good ranges
Josh continues to amaze me with his great attitude and upbeat self in face of the unknown .
I'd like to think it's a little because of me that he is displaying this happy mode

Dear Debbie, I am SO happy for dear Josh's great check up which enables him to move forward with his 11th Opdivo infusion . Did his check up include scans or just lab work, weight and blood pressure monitoring, and a physical exam? Take joy in the good news as you continue to move forward on Josh's courageous journey with increased Hope in your heart and know that I am sharing your great happiness. With happy hugs, special caring thoughts, healing wishes, love, and continued Hope, Bonni

Bonni
Thank you for the well wishes.

Josh has his lungs checked and liver felt as well each visit along with weight and BP, O2 and HR
Blood work performed each time, CBC. Metabolic once a month I believe.
Cortisol levels are not performed by oncologist
Scans to be scheduled at 6 month anniversary--week of January 20

Josh see's his GP once a month to follow up as well.
He will run blood profiles if requested.

Thank you for your prompt response dear Debbie. Is my interpretation correct from the info you shared that "having his lungs checked and liver felt" each visit indicates that the lungs and liver are not being scanned at his check ups, and his scans are only being done once every six months?!? I am personally uncomfortable with only twice yearly scans when there are lung and liver mets concerns since the lab tests and physical exam wouldn't show any possible increased met growth and/or any possible new mets. However, I understand that the possibility of Opdivo related inflammation may provide false scan results of increased met growth and this may be the rationale for less frequent scans. My happiest thoughts and very best wishes are with you, dear Josh, and your family for a most happy and healthy holiday season, a wonderful beginning to the New Year, and very good scan results in January. Heart to heart with special caring thoughts, healing wishes, love, and continued Hope, Bonni

Bonni

Every 3 months is the schedule for Brain. chest and pelvic area. Unless headaches or other issues arise.
Bone scan will be repeated in July and be continued as an annual scan

We began our first set of scans a little after 3 months from our first dose of Opdivo and will from here on out be performing the 3 scans every 3 months till July as the companionate use will be revisited.

Dear Debbie, Thank you for correcting and clarifying my misunderstanding of Josh's scan schedule. I am grateful and relieved that he is scheduled for his brain/chest/abdominal/scans every three months to vigilantly monitor those areas for any increased growth and/or new mets which we know is critically important with this unpredictable disease. Brittany's four month brain and spinal.MRI scans are scheduled for this Wednesday, December 21st, and as always, our scanxiety is growing as we hold VERY tight to Hope for VERY good scan results. Have a wonderful and relaxing Holiday time weekend. With warm hugs, caring thoughts, healing wishes, love, and continued Hope, Bonni

Hello all

6 month Scans have been taken

Josh is at 120 lbs
Still low thyroid but other than a little tired plus weight gain -- 23 lbs over 6 months ? This is where we are at
2 Ct scans lungs and pelvic today
MRI yesterday
Thursday onc meeting

Will update
Love to all
Will let you know