Kevin from California, US (Dx Feb 2012) - RIP Oct 17, 2014

[wangcns]

Also, if any of you are interested, several of mine and Kevin's coworkers have banded together and created a non-profit called Gamers for Good, inspired by Kevin's fight with ASPS.

https://www.facebook.com/pages/Gamers-f ... 9064057773

http://www.gamersforgood.com/KKG-Artbook

Their first project is putting together an art book and they've already signed up over a hundred artists to contribute pieces based on Kevin's favorite video games. I have to say, I had an emotional moment when I saw what those crazy cats have been cooking up. It's been picked up by some of the game industry media outlets.

http://www.escapistmagazine.com/news/vi ... ard-Artist

Either way, hope this will bring more awareness to a rare disease like ASPS and pave the way for other awesome projects. Gamers have such a bad rep as irresponsible, immature individuals, but that stereotype is about as accurate as most stereotypes are.

[jenhy168]

Also, if any of you are interested, several of mine and Kevin's coworkers have banded together and created a non-profit called Gamers for Good, inspired by Kevin's fight with ASPS.

https://www.facebook.com/pages/Gamers-f ... 9064057773

http://www.gamersforgood.com/KKG-Artbook

Their first project is putting together an art book and they've already signed up over a hundred artists to contribute pieces based on Kevin's favorite video games. I have to say, I had an emotional moment when I saw what those crazy cats have been cooking up. It's been picked up by some of the game industry media outlets.

http://www.escapistmagazine.com/news/vi ... ard-Artist

Either way, hope this will bring more awareness to a rare disease like ASPS and pave the way for other awesome projects. Gamers have such a bad rep as irresponsible, immature individuals, but that stereotype is about as accurate as most stereotypes are.

That's amazing Great to hear that this will bring more awareness to ASPS. Hope Kevin's CT scan turns out well.

[Ivan]

Great idea, and should catch on well in the community. Too bad it's only for fan art, otherwise I would be willing to contribute some of mine.

I am happy to hear that Kevin is feeling better. However, these measures seem to be mostly for palliative purposes. Is there any scenario being considered which could get rid of that crap for good?

[wangcns]

Yeah, it's not possible to remove all of the tumor in his sacrum. They've discussed Kevin's case numerous times at the UCLA tumor conference, talked about tying off blood vessels, etc. In the end, they felt SBRT was the best solution in terms of having the least impact on Kevin's quality of life. At least he can walk now and has minimal pain. Even when we flew to Seattle and spoke with Dr. Tredway, he said he wouldn't be able to get it all and would have to reconstruct his sacrum/pelvis which would be lifelong pain and limited mobility. We also sent scans to Dr. Littrup about possible cryoablation for his lung tumors, but he didn't feel that it would be the best treatment considering how many he has. Still waiting on results from his lung CT scans.

So it's just Pazopanib for now, not much else we can do. At least Kevin is showing good response and fairly minimal side effects. Even before the SBRT, scans showed that the tumor was retreating from the neural canal, most likely due to the Pazopanib. The SBRT appears to have increased that clearing of the canal. There's still some involved with the nerves, but it's much less. Kevin can walk almost normally now. I think at this point that's the best we can hope for, keep monitoring the tumor (we see his oncologist every month), and hope that it's mostly dead. We just saw his surgeon last week and he said the same thing. They think most of what is showing up on the scan is necrotic, but as we all know, they can't really tell until something starts growing. We've added another doctor to our monthly routine, the rad onc, who has said he and his team are very encouraged by what they've been seeing; they'll keep monitoring Kevin's sacral region.


Hope you're feeling better, Ivan, and that you track down the cause of whatever is making you feel unwell.

[Olga]

Connie - this is a very interesting and unique experience that Kevin got with treating the soft tissue tumor with the stereotactic body radiation therapy (SBRT) while on the simultaneous treatment with pazopanib. There is a theory that TKI might improve the response to radiation therapy in the radioresistant tumors. Do you know what was the radiation protocol used, how many treatments/dose?

[D.ap]

Kevin and Connie

Thanks so much for the update
So glad to hear of Kevins pain level decreasing!
Hope the future scans report a retreat of the ASPS as well.
Update when possible

Love
Debbie

[Ivan]

Glad to hear Kevin is feeling so well I feel back to normal (minus my still fractured ankle). Got rid of the stomach bugs and changed my sleeping schedule = win.

[wangcns]

I'll try and see if we can track down what the dosage was, so we can add that to the body of archival knowledge. I know he received SBRT every day for five days, stopping the Pazopanib a few days before beginning SBRT and resuming it about two weeks later. He's got a little brown stripe in his hair that marks the Pazo interruption.

We also received word back about Kevin's lung CT scans. Relatively stable, not much change in the lung mets, no change with the lytic lesion in his sternum that may or may not be ASPS (this was the one that biopsied negative but that Dr. Federman still thinks is ASPS.) We'll just continue on the Pazopanib and see how things go. Right now the goal is disease stability and that's what we're seeing, but I'm all too aware that this may very well be a temporary thing. But while it lasts, we'll try and enjoy as normal of a life as we can. It's all any of us can do, right?

[Ivan]

Glad to hear from you. Please send Kevin my best wishes!

[Bonni Hess]

Dear Connie,
Thank you for your thoughtful updates and the shared very good news regarding Kevin's good and encouraging scan results and him now feeling much better and able to walk with minimal pain as a result of the shrinkage of his sacrum tumor apparently caused by both the Pazopanib and SBRT treatments . I Hope that he is continuing to tolerate the Pazopanib side effects well, and will be holding very tight to Hope that he will have a continued successful response to the Pazopanib with continued stable disease, no new tumors, and shrinkage/disappearance of his sacrum tumor and multiple lung mets. How often is Kevin having his scans, and are they chest/abdominal/pelvic CT's with contrast?
Please give Kevin and yourself happy hugs from me, have a wonderful and beautiful Fall, and keep in touch with the Board as you are able.
Sharing the joy of Kevin's good scan results and sacrum tumor shrinkage with much happiness, special caring, and continued Hope,
Bonni

[wangcns]

Hey all,

It's been a while, hope are all all doing well and enjoyed your holidays. It's been quiet on the ASPS front for us for the last few months, so we've been trying to enjoy this cancer break as much as possible, but we recently had some concerning scans so I wanted to update everyone. Kevin recently developed unexplained muscle pain in his shoulder area that hasn't gone away for a month at least, so at our last meeting with his rad onc we requested an MRI of the region. Because of our experience with the sacral tumor, we just immediately assumed the worst.

I don't know if other ASPS patients have seen this, but it appears that Kevin's developed avascular necrosis in his shoulder region. We don't know many details yet, we're scheduled to go in on Monday and have a lengthier discussion with his oncologist, so that's all we know so far. Have any other ASPS patients experienced this or is there any information on this? From what I've Googled, it could be a number of things, from the steroids he was on before to reduce inflammation from the sacral tumor, to the XGeva he was taking since the ASPS had metastasized to his bones, to side effects from radiation.

As for his sacrum tumor, it continues to shrink, so his doctors feel like the Pazo is still working. His SBRT is nearly 6 months behind us, so this is definitely less the SBRT and more of the Pazo. However, it seems to be working more on the sacral tumor than it is on his lung mets...which I guess is typical, mets in different areas responding differently to the drug. Kevin is definitely feeling the side effects of the Pazopanib more and more, we were hoping it would be possible to take a small break to let his body recover from the toxicity of the drug but I don't know if that's wise or even feasible.

I will have more details after next Monday's visit.

[wangcns]

Sorry Bonni, I realized I didn't respond to your query.

Kevin is having lung CTs every 3-4 months. We've been seeing his oncologist almost every month, his rad onc every 3-4 months, and his surgeon every six months. He's been getting sacrum CTs every 3-4 months since his radiosurgery in July 2013 and just recently they called for an MRI of the sacrum and the shoulder region. Full PET bone scan once a year. I actually have not been as good as I should be about his scanning schedule, I should review it so thank you for your reminding me.

I have to confess I get a little confused and lost sometime with all the MRI, CT, and PET scans and trying to figure out what is better for what and when and what he's currently getting. I'm always asking, "Wait, is this the MRI or the CT?"

[wangcns]

Okay, found the page on steroid induced osteonecrosis. Kevin was also taking decadron and received radiation (but on the left side, not the right where the necrosis is occurring) in addition to the SBRT to his sacrum. The decadron really helped at the time, but osteonecrosis was not on the list of side effects we looked up...it was for xgeva, though.

[D.ap]

Connie and Kevin

Thanks so much for the update
We hope you find only good news this next Monday.
I am so glad to hear that you are taking a breather and enjoying the break
Good for you guys!
Please be assured that we are always thinking of you both.
Both of you take care

Love
Debbie

[jenhy168]

Hey Connie,

I was on Pazopanib for about a year before starting Sutent 2 months ago. At first Pazo wasn't too bad for the 1st 6 mos, but the longer you take it, the worse the side effects get. The worse side effects for me was stomach pains, GI issues, and nausea. When it got REALLY bad for me, I'd take a break for 1-2 days then go back on again. My oncologist said it was fine for me to do that. But I would only do that about once or twice a month (at the most). I'm not working anymore because of all the side effects, so if Kevin is still working, I'm sure it's pretty hard on him. What dosage is he on? Hopefully Pazo continues to shrink his sacrum tumor.

Take care, Jen