Lucio from Los Angeles, Dx 2001

[Olga]

Cediranib is def. not a cure and does fail in many patients eventually but we have not seen any dramatic and sustained (proven) responses with the other drugs so that explains the hype, it is really new for us here on the board to have ASPS tumors shrinking and if at least some of our patients benefited from this drug being still on the clinical trials stage - it is great (although I understand the disappointment of the people that did not get the response - but they also did not loose anything as without getting a response they could not possibly get a resistance and an associated with it steep rebound growth - their tumors just keep growing at the same rate they did before of the trial).
Are you aware of the more promising trial that currently open for ASPS with the patients showing consistent responses? I am not.
It is always very hard to persuade the company to open a trial for ASPS specifically as they are wary of the low enrollment.
After being approved for ASPS (which I am sure will happen soon) it can proceed to be tried in the combination trials that might produce more durable responses.
What was the response re.cryo from Dr.Littrup? He does some sophisticated procedures to make the ablation feasible. For one of our patients he ordered the custom fitted heating part to put inside of the trachea that would keep its temps normal while cryo the tumor right outside of it so the walls would not break.

[Ivan]

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.

Yes, I understand. But I promise you that it was not my deliberate intention. Furthermore, we went to great lengths to preserve F's contribution for the benefit of others which was actually more work than just deleting all her posts completely.

I disagreed with F on a few issues, and pointed out some serious recurring flaws in her pseudo scientific arguments (which she never addressed by the way). Instead, she felt persecuted and said that we have no freedom of speech here. Yet, she was the one asking me to keep my opinions to myself and let her ideas (some of which I consider potentially dangerous) go unchallenged.

As far as Cediranib goes - do you consider "one of the most promising trials" an incorrect description? If it was me, I'd try cediranib before crizotinib and dasatinib. The latter, as far as I know, have had no proven long term response for anyone.

[Bonni Hess]

Olga has done an excellent job of explaining the reason for Cediranib being "hyped up" (Skyflower's description) on this Board and by some of us Board members, but I would also like to add some additional comments and personal perspectives as the mother of a Cediranib patient who is STILL participating in a Cediranib Trial, and who is STILL holding on to Hope for a continued successful response. We of course know, understand, and acknowledge that Cediranib is unfortunately not a permanent cure, that it has sadly not been effective and successful for everyone, and that there is a concerning risk of rebound once the medication is discontinued. However, during Brittany's very challenging ten year battle with ASPS and through our extensive research, networking, and following of other ASPS patients anecdotal treatment experiences, Cediranib is the FIRST and ONLY systemic medication that we have personally observed and found in the past ten years that has provided such significant shrinkage and disappearance of tumors, has provided the longest sustained disease stability for the largest number of patients, and which can cross the blood brain barriar. As per the 2011 ASCO abstract on ASPS and Cediranib, only about 40% patients thus far have had a successful response to Cediranib, but this remains, to my knowledge, a greater percentage of successful response than any other currently available ASPS systemic treatment. The reason that some patients have a more successsful, significant, and sustained response than others apparently remains unknown at this time, but I continue to wonder if it is related to the possibility that there are two different types of ASPS as some researchers have proposed, or the fact that some patients who had a more significant and longer lasting response like Brittany, Paul Mavers, and Clare Clarke were started on a higher dosage of 45 mg. rather than the 30 mg. dosage being given to patients in the NIH Cediranib Trial. There are many variables and there remain many unknowns and questions, which time and continued research will Hopefully be able to answer sometime soon. In the meantime, what I personally know is that at the time Brittany began her Cediranib Trial in April 2009, she was having very aggressive and widely disseminated disease progression. and she had failed responses to both the GVAX Immunotherapy Vaccine and the ARQ-197 C-met inhibitor. She had a Life threatening unresectable and untreatable pancreatic met and recurring brain mets. Her oncologist could not offer us any systemic or radiosurgery treatment option that might shrink/destroy her pancreatic tumor, and none of the available systemic treatments could cross the blood brain barriar to prevent new brain mets. Thankfully, since beginning Cediranib, Brittany's "untreatable" pancreatic met as well as multiple other widely disseminated mets are no longer visible and are presumed to be dead, and she has not developed any new brain mets. Cediranib has given Brittany two more precious years of Life, and it has given all of us who love her two more precious years with Brittany. We Live each day with the fear and the probable reality that Brittany will eventually develop a resistance to the Cediranib especially since she is now the ASPS patient with the longest sustained response, but we continue to hold VERY tight to Hope, to aggressively and relentlessly research for any possible new treatment options, and to faithfully and openly share anecdotal information about Brittany's Cediranib experience and results, as well as our researched and anecdotal knowledge, our support, our genuine caring, and Hope with other ASPS patients and their families.
With special caring thoughts and continued Hope,
Bonni