Josh from Kansas - Dx Sep 2012

[Olga]

Deb - what is the size of the brain mets - is there a need to rush?

[D.ap]

Hello Olga
Haven't forgot about your question
The one treated was 8mm and the non treated one was 2mm or less

We are looking at several issues that have developed during and after sutent was taken . Also DX on November 24, 2015 It was taken by Josh for a little over 2 months It wasn't even rebound in my opinion as it was as a direct result of taking sutent?

BY NO MEANS would I discourage anyone from taking a TKI as it has helped a whole host of ASPS patients stabilize and some have experienced some shrinkage.

We sure are thinking twice about trying another TKI and are looking at ablations
Found this write up on 10 things to know of with TKIs. I think Tom had a similar reaction to a TKI.
Can't remember the one though
Will write more later

http://onlinelibrary.wiley.com/doi/10.1 ... 13096/full

[Olga]

Hi Deb, what do you mean might have been a direct result of taking sutent? New mets discovery and progression of the undertreated brain met? It is unlikely as for the resistance there need to be a good initial response (shrinkage) and then the growth faster than before. Most likely there was no activity for Sutent in Josh and new mets/growths were just unaffected by it.
There are numerous cases when diff. TKI were active (incl. the case of almost complete response to cediranib in Brittany) but most of the times there was a developed resistance after that. Some people used the window of opportunity provided by shrinkage to resect the previously unresected tumors. Some people had no reaction to TKI (their tumors were not sensitive to the ones they tried). It is hard to say if the TKI can actually cause the growth/increased activity in ASPS, I have no idea. Probably not as it would have been seen in the numerous clinical trials happening. May be it was seen, I do not now.
As usual - the reliable working tools have to be used first (resection, ablation) with drugs where the expected effect is unknown be left for "no options" situation, and it is better be done in clinical trial setting (if possible).

[D.ap]

Hi Olga

Can't put my finger on the progression culprit measurements.
I suspect Josh contracted whooping cough.. MAJOR cough thought to be sutent induced? Induced spots to look like progression on CT scans, but maybe minor leakage, hemarageing possible expansions of lung alveoli with out symptoms??
Regardless he sure couldn't continue with sutinent .
Other organs compensating as body will do..clean up duty so to speak? they took the collateral damage.


Anemia LOW

Sounds far fetched but what else is ASPS but a lottery pick of a sarcoma
Wow what a experience after virtually no systemic treatments since last year an none since 2012
Please all share what little info can spare

Love to all
Debbie and family PLUS

[Jorge]

Hi Deb,
It's possible to see new mets appear when using some TKI, expecially brain mets. George was not so lucky with TKI. He had several TKIs trying to cross the blood brain barrier to prevent new brain mets, but none of them work out. Usually the TKI can work in the lung, but may not work for the mets on the other part....
So for the brain, a more effective way is to monitor it frequently and do Gama Knife or Cyber Knife if any new mets are found. The sequela and side effects of them are more slight comparing to radiation or SRS and can be done many times.

For the cough, some patients I know did say when they start having TKI, their cough becomes more severe. So Josh's cough could be the side effects of Sutent?

[D.ap]

Lynette

Big Heart Felt THANKYOU! You are a true friend. You and Jorge and family..always.

Never give up as ASPS can be won!

Love
Debbie : )

[jenhy168]

Hi Debbie,
How is Josh doing? Has his cough gotten better?

Love jen

[D.ap]

Good morning Jen

Much better thanks for asking
Working on weight gain at the moment and looking into PD clinical trials .
We hope to find one to aid in tumor load reduction Just anything that can show reduction so as to use with other methods to take care of offending growing tumors soon.

We are stable at last chest scan and hope to be with brain scan in June.

Love and Hugs
Debbie

[D.ap]

http://www.cureasps.org/forum/viewtopic ... t=90#p9365
Love and hugs to all..

[D.ap]

Will update next week with brain MRI
Please post oldies but goodies to music post
Need ya all for support when you get a moment

http://www.cureasps.org/forum/viewtopic ... 9372#p9372
Ie multi cultural folks

https://en.m.wikipedia.org/wiki/Big_band

Love
D

[D.ap]

Hello all
I know its been a long long time since my post.
To recap Josh took a little over 2 months of sutent last October/ November 2015. Josh developed a hellashish cough that caused

1) broken ribs
2) weight loss as the gag factor kicked in as well as malaise

Scans in November showed great increase in lung met growth and pelvic tumors ie liver , pancreas ,gallbladder and kidney area, so Sutent was stopped.

We approached dietitian and natural doctor and got on a gain weight diet and addressed the cough in so much as to settle it so nourishment could be administered.

January showed stablizing of lungs but the liver/pelvic area continued to grow.
Ablation could not be performed with out some kind of systemic back up.

Our CT scan in April 2015 compared to April 2016.
(BEFORE OPDIVO), 1 years of progression:

Left lower lobe posterior(LULP) 2.2 to 4.0cm
Left upper lobe(LUL) 3.0 to 4.1cm
right lower lobe(RLL) 2.5 to 4.5cm

Opdivo started on July 20
As of scan on October 31 Josh
had 7 doses of 144.2 MG
Below His Base line 6/20/16 - verses after 7 doses of Opdivo, scan 10/31/16

6/20--10/31
LUL 4.5 to 4.5 stable
LLL 4.2 to 3.2 decrease
RLL 5.0 to 5.7 increase
RLL along pleura 4.8 to 2.6 decrease

Report says:
"Most of the pulmonary lesions have decreased in size"

1. overall worsening of metastatic disease in liver. Several new liver lesions are identified 19 mm and 10 mm . Ablated tumor decreased slightly

2. improvements in the left adrenal gland/sprarenal fossa-2.1x2.0 to 1.2cm

Abdomen -
"The 2 dominate lesions inferiorly on previous scan are difficult to separate now
2.8 to 3.1 cm"
I'll write on brain MRI tomorrow
Still realing in the good news
Have a ways to go but sure thankful for the good progress

[Olga]

Looks like a mixed response or may be a local inflammation surrounds the mets and makes it look like progression. Josh is getting it free for a year from the company producing the drug, on a compassionate basis, right?

[D.ap]

Yes that's the case of compassionate use
The inflammation of the liver and pelvic area is what we are hoping for with the next scan showing reduction

Forgot to tell of cough being almost 100% gone !
And we are at a hefty 108lbs
And last but not least the right lower lung is 1mm from where we were back in April 2015

[D.ap]

In looking at the brain MRI 10/31/16, there was mention of
3 have resolved including the 8mm treated in April . Not there.
The LITT treated tumor is showing nercrotic and I believe the 2 on the right side treated in April 2015 are gone
Josh had a previous MRI in August after some slight headaches and they were shrinking then.
So from July 20 to the August scan the Opdivo appeared to be working on the brain . By dose 7 of Opdivo the 3 of the 7 were gone

The 9mm right side skull tumor is stable.

[Jorge]

Debbie and Josh,
Great news! Thanks for sharing the great news. I'm soo happy the cough is gone and Josh gains some weight back