Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Greetings!
Here’s my history:

Diagnosed in July 2001 with ASPS
primary right thigh (about 6.5 cm diameter), successfully resected Nov 2001.
2 cycles of MAID chemo prior to resection, then surgery followed by brachytherapy for 50 hours, another chemo, and month-long regimen of external beam (treatments ended May 2002).

Summer 2003 nodes appeared in lung CT-scans. Saw a nutritionist who put me on a diet designed to create a hostile environment for cancer, and kept up a regimen of doing nothing (AKA monitoring) until a mediastinal mass (about 4X4 cm) appeared July 2008 CT. I was not advised of mediastinal tumor until middle of October 2008 (during July CT follow-up doctor had advised that everything was showing “normal”, I wasn’t pro-active about reading the reports until October when my chest pressure did not go away. I scheduled an appointment to ask about words in the report I did not understand like “lytic lesions” and “mediastinal mass.”).

Thoracotomy in Dec 2008 failed to remove mediastinal mass, but a few nodes of right lung were removed and sent for assay. Revisited previous nutritionist and resumed diet with added supplements of broccoli seeds, various mushrooms (reishi, shiitake, maitake and others) and grape seed extract. I also submited my case to Dr Rolle but he said he was unwilling to take me on as a patient because my large mediastinal mass was "unresectable".

Trial for R1507 started Feb 2009, which involves weekly hour-long infusions, and CT and PET scans every few weeks. Which brings us to now.
Still on R1507 trial (not the patient who has documented partial response, but here’s hoping that’s in the future). The side effects are slight. Slight fatigue, and occasional diarrhea. On April 30 I had my latest CT and the results showed stable disease. My Doctor said he things one of my mets appears to have gotten smaller but the difference was not enough to make it official


Last week I had a consultation with Dr Lee from UCLA thorasic surgery. We are currently looking at the possibility of trying to resect my large subcarinal mass as well as getting the lung mets as well.


I've been lurking on this site for over a year and I'd just like to thank all of the posters and mods who have worked hard in keeping up this very valiable resource. Thanks for all you help and insight.


-Lucio

Hi Lucio,

Welcome to the boards! Our daughter had Jay Lee at UCLA for her first thoracotomy. It is nice to hear that R1507 has minimal side effects and stability / partial response in ASPS.

We know of a non-ASPS sarcoma patient who was told by Rolle that he could not get the big one out with laser, but if the big one came out, Rolle would consider lasering any that remained.

Best wishes to you and yours,

'F'

Thanks 'F'

My R1507 trial will end in about two weeks. I'll still have to do another PET and regular CT to see how things went. I'll post the results here when I get them.

Hello and welcome to the forums Lucio
I am glad you will be seeing the doctor at UCLA and I also agree with the foods and things you are doing.
I am in radiation right now but as soon as it is done next week i am going back on Flax oil and seeds and things like that.
ASPS spread to my 8th rib and I will be removing the section of the rib that has the 2.5 cm tumor in three to four weeks after my leg has healed from the radiation. I am glad you posted there are a lot of very nice people here that have helped me a great deal with treatemnt ideas and there amasing research in ASPS.

Again welcome

Amanda R

Hi Amanda

I hope your up coming surgery goes/went well, best of luck.



Update:

6-11-09 was the scheduled end date of my clinical trial but Dr Chow (city of hope) has allowed me to stay on the trial until I either have surgery or seek another treatment. I’m currently in the process of doing the work up for my third thorocotomy. I still have to see a cardiac surgeon as well as an MRI, CT, and a hand full of other test.

My latest scans, dated 6-11-09, as part of my R1507 trial, show no significant change in my lung nodes and no significant change in my mediastinal mass. I guess some good news is that in my last PET all my lung nodes showed up as FDG negative, they did not light up at all. Is this a common thing? I don’t want to get my hopes up but I’m excited at the possibility that my lung mets are dead and only scar tissue remains. My mediastinal mass was reported as being mildly hypermetabolic measuring 4.6 x 3.3 which is what it measured when I started the trial.

My surgery work up will likely take another 3 weeks, can anyone out there recommend a good surgeon (one with ASPS experience) in the southern California area? I’d like to get another opinion since I have plenty of time.

Thanks

Lucio, hi, I have to comment that unfortunately PET often shows negative for the most of the ASPS small lung mets so this a common thing and just means that they have very low metabolic activity when they are small and slow growing, unless you had the positive PET values for these mets in the earlier scans and they had decreased after this treatment.
But I would say that overall it is may be encouraging result as there are no new mets and no growth in the existent ones so since you are stable it can be considered as a sign of a clinical benefit and as far as I know it is a common practice that in that case the patient is allowed to stay on that trial as long as the benefit continues.

Hi Lucio,

Looks like generally good news.

I think Fritz Eilber (UCLA) is the general surgeon with the greatest sarcoma and ASPS experience in your area, but if it is mediastinal mass, then he would probably refer you to Jay Lee - who is a cardiovascular surgeon - and therefore is very familiar operating in the mediastinum. Jay does not have as many years of experience as Fritz, but he is trained as a CV surgeon and also does all the sarcoma metastatsectomies for the large UCLA sarcoma service.

I know Fritz had told us he had operated on 3 ASPS patient just in the month before he did 'K' - and I have spoken to another ASPS patient's mother who since has been operated on by Fritz as well. That is pretty high considering ASPS is so rare. And that is just in the past 1-2 years. There are likely more he's done that I don't know about.

He was the surgeon recommended to us by a surgeon at the National Cancer Institute.


'F'

Hi Lucio,

I was checking what your experiences were with R1507 because we decided to enroll 'K' in the study in Oregon. I've also since heard that they only check serial PET scans if the SUVmax is greater than 3.0. So if I understand what you've written, You probably did have a PET response to r1507. It might have turned down the metabolism, but you cannot be sure how many of the cells are dead. Still it is better than an PET response that is increasing or getting worse.

You should ask for a copy of the PET report each time you have the study. It will tell you numbers that can help you. The doctor should also tell you more information about it if you ask specifically.

Hi all

My apologies for not updating my thread but I’ve been very busy of late. I have a lot of new information to share with you guys hopefully some of you will find it helpful.

Update:

In my last update I told you that Dr Chow had allowed me to stay on the R1507 trial even after it was scheduled to end. It turns out he made a mistake in doing so because, after carefully reviewing the June 11 study, he discovered that one of my left lung mets had shown a single increase of more than 25%. And because the trial uses W.H.O criteria I would have to be taken off the trial. This means I was on the trial for an additional two cycles because they did not catch this “progression” the first time around.

I had my third thorocotomy on July 15, 2009 at the UCLA Ronald Regan hospital. My surgeon, Dr Jay Lee, and his team, did an excellent job. They were able to remove my entire mediastinal mass in one piece. There was no involvement in the surrounding tissue, which included my heart and my airways. They also did wedge resections of the “last” three lung mets on my right side.

According to the pathology report my mediastinal mass measured 5.0 X 5.5 X 3.4 cm. And was likely 15% necrotic (in the center). Hopefully they’ll be able to see what kind of effect the R1507 trial has on ASPS tumors if any.

Both Dr Lee and Dr Chow agree that I should look into another clinical trial before pursuing a left side thorocotomy. This week I have an appointment to see Dr Chow and also to see Dr Chmielowski at UCLA to discuss various clinical trials for me to participate in.

Greetings everyone,
My husband (Lucio) went to pick up his results from a CT scan at City of Hope, and a nodule near the trunk of his left lung has grown from 1.8x1.6 to 2.2x1.8 cm (in 2 months). He is scheduled to start a trial for Dasatinib sometime soon (side question- are there any positive anecdotes related to ASPS and Dasatinib?). His primary care oncologist recommended doing the trial for a few months, looking for a systemic treatment in general. We have to meet with his surgeon, Dr. Lee, to determine the risks associated with doing the trial first and the trial failing vs doing the surgery now. The consensus among the doctors and surgeons we have met with seems to be "look for systemic treatments options first, surgery second". No time has been set yet for when the Dasatinib trial is to start (still in work-up stages), so there is still time to make an "informed" decision, but I haven't read much on here regarding Dasatinib, or on the internet in general regarding ASPS and Dasatinib...
Hope everyone is having a nice day,
Lokelani

Lokelani - I really suggest you to look into Phase 2 Cediranib trial that is now open at the NCI specifically for ASPS even though it is not close they will pay for the flights if he is accepted. There is no info that Dasatinib might work but there is a lot of info to support that Cediranib has a good chance to help him!

thank you olga, for the suggestion. cediranib is indeed enticing. we made some calls regarding the trial and it appears lucio is a good candidate. they e-mailed forms and answer sheets that we've been going over. depending on how the consult with dr. lee goes on monday, he will probably pursue cediranib (i think he's pretty much made up his mind). reading the posts on dietary restrictions is a little gloomy, the side effects very gloomy, but the potential benefits with cediranib are huge. *sigh* we'll have to finish up all the green tea so it's not laying around getting stale if he is to go on the trial. i'm guessing it's the same for black, oolong, and white teas also...

Lucio started the Cediranib trial at the NCI in late October. They put him on 30mg per day, and on December 14 we received the good news that his largest met (close to 2cm) is now 40% smaller! We're not sure how much the other Mets have shrunk as we don’t yet have the report or the slides, but obviously this is great news for all of us.

So far everything has been okay except for his bilirubin. On weeks that he travels to the NCI for clinic his bilirubin count goes above 1.5, and this is a concern for them. We think it has to do with traveling to the NCI from orange county, ca. Maybe the stress makes the difference because when he has labs done in California his results are fine. He’s also noticed on days when he travels he just feels crappy, even for a few days after.

His side effects have been mild to moderate. Here’s a list of the most common side effects, he gets these just about every day:

Diarrhea
Painful abdominal cramps
He’s become more irritable (This came from him, not me! )
Constipation
Fatigue
High blood pressure

Less Common Side effects are:

Cold Sweats
Sensitive hands

Feel free to ask if there's any questions!
Yvonne said he has another CT in mid January to confirm the results. He or I will post again after and hopefully things have gotten even better. Forgive me if there are pronoun errors, this post was a collaborative effort.
*Olga, please feel free to move this post as applicable*

Dear Skyflower,
Thank you for writng to update with this WONDERFUL news! I deeply share the great happiness and strengthened Hope that these very encouraging results have brought, and will be holding very tight to Hope for Luci's continued disease stabilization and significant tumor shrinkage. I am sorry that Lucio is having negative side effects from the medication, but unfortunately they seem to be typical of those that most of the patients, including Brittany, have experienced. However, thankfully thus far Brittany's liver enzymes,
which I think is the same as the bilirubin count, and her blood pressure have remained stable, although she did develop hypothyroidism for which she takes thyroid medication. I am grateful that thus far Mario's side effects seem to be tolerable.
Olga will probably move your entry to the Cediranib topic so that those who are following ASPS Community patient's Cediranib experience can read it there, and then you can post Lucio's next Cediranib Trial results update in the Cediranib topic. In the meantime, please take care, give Lucio my congratulations and best wishes, and have a most Happy New Year bright with the Hope that these good news results have brought.
Sharing the great joy of this good news with special caring thoughts and continued Hope,
Bonni

*Reposted from Lucio's Cediranib*
Thanks a lot, it's really comforting to know that bonni, 'F' and amanda are there to respond to posts
lucio's decision to stop treatment was a personal one. he had been mulling it over for a few months, and it was due to the compounding of the side effects. we were thinking about going to see dr. littrup, but then when we got home and looked at the scans, the tumor that was near his aorta almost looks like a pacman on the verge of chomping down on a similarly sized dot. so we are not hopeful cryo will be an option.
the sutent decision should come within a few weeks. i think the insurance company is time-limited, but i'm not sure what it is. lucio is setting up to have a case manager (thanks 'F'!). in the meantime it lets us get all the information we need regarding surgeries and alternate drug options.
we have not read that book, but we have read similar diet/health/cancer books. we know that some people are hesitant to change anything about their diet and lifestyles until there is scientific data to back up the claims, but it doesn't hurt to eat healthier and not clog up your system with unnecessary pesticides/herbicides/antibiotics/hormones. and many drugs out there started out as plants anyways that someone wanted to isolate the active components of.
*Added* Really, thanks Bonni, 'F', and Amanda. For your support and comments, you have given us a lot of things to think about.