Lucio from Los Angeles, Dx 2001

[Amanda]

Hi Sky
I would like to chat and as soon and real life isnt insane i will mail you

I hope that they tell you that the drug is ok now to take and that you see the doctor soon ...
The waiting in cancer for doctors scans just every thing is such a drain.
I hope they call you tomorrow

[Olga]

I relocated discussion about the diet/life style modification to http://www.cureasps.org/forum/viewtopic.php?f=53&t=545
There are also some comments re.Lucio situation with the tumor close to aorta that has grown. I would definitely contact Dr.Littrup re. evaluation of its pissible cryoablation regardless that you feel it might be not feasible due to the location. He has done some remarkable ablations in the past for other ASPS patients, there are techniques to move a nodules away from the structures by the injecting of some air and ablate it afterward etc., he knows his stuff.
The other option to evaluate is the radiosurgery, we had a positive experience with Dr.Okunieff when he has successfully done the radiosurgery for the centrally located lung tumor in one of our patient using Novalis unit. He had worked as the head of Department of Radiation Oncology, University of Rochester Medical Center at that time, but about a year ago Dr. Paul Okunieff has been named director of the University of Florida Shands Cancer so he can be found there now:
http://www.health.ufl.edu/about_the_hsc ... us=APP,REN

E-mail: pokunieff@ufl.edu
Web Site: www.ufscc.ufl.edu

[skyflower]

Lucio was approved for Sutent, no appeal necessary
I guess I'll start a Lucio on Sutent thread.

[Amanda]

Hello and YAY!!
I needed some good news this morning and reading this made me happy ty

Lucio was approved for Sutent, no appeal necessary
I guess I'll start a Lucio on Sutent thread.

[Bonni Hess]

Thank you for sharing this very good news Skyflower. It is very encouraging to know that Sutent is being approved for ASPS patients without having to go through the appeal process. I know that this will probably still differ depending on the insurance company and the type of insurance that the patient has, but it sets a good precedent and gives a good basis for arguing the appeal if the request for Sutent coverage is initially denied.
Will Lucio now begin his Sutent treatment as soon as possible, or will he delay it until the issue of the lung met that is pressing against his aorta has been addressed and resolved? I will be anxiously awaiting your next update and continuing to hold Lucio and you very close in my heart and most caring thoughts.
With special caring, healing wishes for Lucio, and continued Hope,
Bonni

[skyflower]

Thanks for the well-wishes Bonni and Amanda
He decided to start on it right away. He got word from NCI that it should not affect his participation in a future Cediranib trial (as long as he doesn't plan on taking both at the same time!). Good news for those that have to stop Cediranib and want to take Sunitinib in the interim. I don't think he has it in writing though, I hope it's not subject to change. He was able to pick Sutent up at the local CVS pharmacy (after special ordering it of course).
Still looking into the surgery options. We're hoping that Sutent will shrink down the tumors and have a surgery soon after there's a shrinkage and stability (rather than 3 months after stopping the -nib, which allowed time for the mets to grow back to pre-nib size).
Thanks Olga, Lucio is getting his appointments together and has sent his recent CTs to Dr. Littrup, and has appointments to Premiere Oncology and other doctors within UCLA (thanks 'F'!). The tumor board at his current primary oncologist discussed Lucio on Friday, and came to the same conclusion that we already knew, that at some time we're going to have to deal with the mets (qty 2) that are in dangerous spots, probably with surgery or radiation.

[Fictional]

Hurrah! Great news. Kgal had to be off 3 weeks after sutent for her primary resection which was major surgery + reconstruction. For cryo, Littrup said we don't have to be off Crizotinib whenever we do it.

Although the tumors rebounded in3 mo maybe it's as if you had stability for those months? A positive spin on the info anyway. I added sutent tx side effects paper to the files section on our FB site. Kgal sx were less - maybe easier if you're younger.

[skyflower]

does anyone have experience with UCLA cryo? lucio was evaluated and seems to be a good candidate... they also suggested low-dose stereotactic radiation therapy (possibly in 3 sessions). reading about cryo makes it sound really good... surface protein recognition, a venue for building up your body's natural defenses, to be able to recognize and fight, blah blah blah. and it seems the small sampling of people on here who have had it are doing very well with the treatments that they pursue after (hi brittany! hi ivan! congratulations on your continued stabilities!). we have only heard about dr. littrup and the recent scans have been sent to him as well, but are there any experiences with UCLA?

[Fictional]

Is this Dr Robert Suh? He looks like a good find. The UCLA sarcoma services is a very busy service and Suh has published in the literature extensively about feasibility and outcome of radioablation and cryoablation. We love Dr. Fritz there too.

About the radiation -in the forums here and in the literature, you will usually see that ASPS is relatively radiation unresponsive - but I have a friend who is a Sloan kettering-trained radiation oncologist - i consulted her about radiation when we considered it shortly after ds' diagnosis 3 years ago - and she said she had 3 ASPS patients who did respond to radiation (they were in targeted difficult areas to reach surgically) - so it is not completely unreponsive. Usually low dose radiation is considered to reduce microscopic reoccurence - especially in a different area like near the mediastinum. Lungs are very sensitive to radiation - so usually radiation in that area is not taken lightly.

Karen in this forum had a heart ASPS met the size of a lime. She had open heart surgery to have it removed, but another surgery regrew - and she had a second open heart surgery - afterwards the surgeon told her she could have no more surgeries. They gave her IMRT after the second surgery and thankfully it worked. She's now 5 years out from the surgery (originally got diagnosed in 2000). She doesn't post regularly here, but I last spoke to her this summer. Things were pretty stable.

Universities are building more proton centers on the west coast (they are expensive) - but they won't be available for another few years. This is something you could ask your radiation oncologist. Proton irradiation is supposed to reduce the chances of a secondary cancer developing by 50% and is usually recommended for children. My understanding (albeit simple) is that in many cases proton is better than IMRT which is better than 3D CT XRT which is better than regular XRT for delicate areas like the heart and mediastinum and pelvis.

[Olga]

Slow growing sarcomas are more sensitive to Proton and Neutron radiation but they are not yet able to treat deeply located lung tumors, it is mostly used for the superficially located sarcomas - unresectable primaries, tumors of face and skull etc. There are a few proton centers that do sarcomas and slow growing sarcomas are more sensitive to them, the one that is in Chicago area
http://www.neutrontherapy.niu.edu/neutrontherapy/ is a referral center for sarcomas but it is not good for the lungs applications as to do lungs (generally deep located small moving object close to vital structures) one needs to use some robotic unit like CyberKnife or Novalis, it is not possible yet to use with these radiation emitters - they are very large, only with the linear accelerators. I have seen that there are developments in the stereotactic neutron radiosurgery units but they are not there yet.
Radiation would have been my last choice after surgery and ablation. If the quote to treat that met is from Dr.Suh I second that 'F' said that he is one of the people in the field that knows this stuff, has been doing it for years now and is safe/reliable doctor to go with, although Dr.Littrup would be the better choice just because he does it a lot, every day and more then anyone everywhere and you should really go for the most experience in the technology based treatments, generally it takes 10 years and no less then 100 cases (300 is better) for the person to became an expert in the complicated field like that. But if there are any insurance/tactical considerations, I would go with Dr.Suh no problem. The thing is every ASPS patient would need to establish the good relationship with some good level ablation doctor (interventional therapy radiologist) to be able to evaluate any worrisome mets and deal with them in a time efficient manner. One month you can ablate them, the next month they can grow into something and the window of opportunity is closed.

[Fictional]

Since Lucio's in Los Angeles, I was thinking Loma Linda for the Proton would not be too far away for them. They apparently can do lung - and you're probably right about the depth limitations Olga, but I was just thinking about if Lucio opts to do radiation afterwards, not as primary therapy.

They are building a proton center here in Seattle (to open 2011) and San Diego (2012).

Here's a link to the Loma Linda Chest Proton page: http://www.protons.com/proton-therapy/c ... domen.html

Some of the consideration about proton vs. regular might be important in ASPS because this is mostly a cancer of young people. Younger survivors of cancer are at increased risk of developing secondary cancers. A friend of our daughter's had cancer when she was 3 years old and then a secondary when she was 12 - thankfully she is now NED, but there are continuing worries because of the XRT required for her treatment, and her last bout took an extreme toll on her general health. Apparently among cancer survivors, 14% are at risk to develop secondary cancers - and more if they have had radiation.

[skyflower]

Why are 'F''s postings be labeled as Fictional? I find that completely disrespectful and very discouraging, as we have found her to be the most knowledgeable about alternate treatment options (rather than parroting Cediranib like a handful of other posters on here. There are other treatment options out there and many of those that started Cediranib had to come off it shortly after). Did she request this?

Lucio and I have moved to Seattle (new job opportunity) and are looking for doctor recommendations, so if you know of any great doctors in the area please send the info our way.

[Ivan]

Why are 'F''s postings be labeled as Fictional? I find that completely disrespectful and very discouraging, as we have found her to be the most knowledgeable about alternate treatment options (rather than parroting Cediranib like a handful of other posters on here. There are other treatment options out there and many of those that started Cediranib had to come off it shortly after). Did she request this?

Lucio and I have moved to Seattle (new job opportunity) and are looking for doctor recommendations, so if you know of any great doctors in the area please send the info our way.

Yes, she requested it when she left the board. I just chose a random nickname starting with the letter 'F'.

[Olga]

skyflower - did Lucio have the cryo in LA? We found out that the doc that did Ivan's last cryo here in Vancouver, also works part time at the UCLA with Dr.Suh - the name is Dr. David Liu, we liked him very much (not that VERY much as Dr.Littrup though...).

[skyflower]

Ivan, knowing the history of how f came to leave the boards, and that you were a direct part of it, using the nickname fictional gives the appearance of being mean-spirited rather than random. the nickname you gave LCMA appears much more random than for 'fictional'. that is just my personal opinion but i hope you can see how it can be interpreted that way.

Hi olga, no, lucio was not eligible for cryo after all. his doctor had second thoughts after the appointment. we are still looking at other options. he is still on sutent, but because he has shown stability rather than shrinkage we are having to figure out other options.
side note- having cediranib fail for so many makes me question if it should still be labelled as "one of the most promising trials currently open." is it still open? and it does helps people, but almost immediately after most people stop taking it the mets rebound and there is a need to drug-hop. in that case i think most of the -nib drugs have similar partial response or stability effects to cediranib, sunitinib being the notable example, and possibly in the future crizotinib and dasatinib. anyways, i'm just curious about that, cediranib is very hyped up here and i wonder if the value is being too far inflated over other options.

lucio is currently keeping up with appointments in southern california, continuing with sunitinib, and still looking for doctors in the seattle area. for anybody else looking, U of W and swedish medical center are supposed to be excellent.