Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hi Everyone,

I'm new to the board. My name is Nathan, I'm 23 years old and I was diagnosed with ASPS in 2008. I, like most patients, have many many mets confined to my lungs. It started from a tumor in my thigh, which I had resected. While it took a decent amount of strength from my left thigh(had to take out 80% of my quadratic muscle), I am really happy to be without it.

I, being one of the patients from the Cediranib trials at the NIH in Bethesda, wanted to give an update on how I was doing with it. I started the trial Septemper of 09. I was on 30mg. From the very first scan, my largest tumor showed something like 30% decrease in size. From then on, the decrease quickly slowed to stability. The side effects were quite manageable. Diarrhea, nausea, vomiting, stomach cramps, slight fatigue, hand/foot syndrome, slight mucousitis and high blood pressure(my favorite part - No Neutropenia). So really, other than the hand/foot syndrome and high blood pressure, the side effects amount to that of having a permanent stomach bug(which is much better than most chemo), most of which can be managed with a proper regimen of Loperamide(Imodium), Metamucil and a fairly wise diet. The down side is that the side effect have a snowball effect over time. eventually, no matter what the dose, the side effects build up and become unmanageable for most patients. after about a 9 month period my doctors decided to take me down to 20mg. The side effects nearly fully subsided, but I began to show growth again, of about 19%.

The good news out of this is I enjoyed almost a full year of stability with very managable side effects. To give you an example, the entire time, I worked my job as a courior at Duke University, did what I wanted and ate what I wanted.

Also, While doctors arent allowed to give out patient info, I was able to find out that nearly all, if not all patients on the trial showed some type of response. Temporary or not, that is very very good news.

Well, I'm looking for a new trial and so far I've come across Desatinib and Sutent as viable options. Any up to date reports on any patients on those meds?

Thank you and Bless you,

N. Andrew Carey

Hello Nathan
Welcome to the forums! Thank you so much for taking the time to post and i hope the others fallow and post there information also
I am so sorry that ASPS has entered into your life! Though i am sad that you also are dealing with ASPS i am glad you found us in this forum!

MY Cancer was removed from my right calf and because of 33 raidiation treatments i limp in the mornings and look like a cartoon creature when i try and run lol
As you stated though its worth it!

Though i am sorry that you are now off this trial there has been discussions in the forums about other drugs to use if you are off this trial and i am sure that you will be hearing from ther others soon. I would post about these drugs but i dont know enough and would make a mess of there information.

Sending you a *hug* and again welcome!

Dear Nathan,
Thank you for reaching out to share your information with this Board. I am so very sorry for your ASPS diagnosis, and for the disease progression that you have now experienced after your initial tumor shrinkage and stabilization of your disease during the past year of your Cediranib treatment. I am so grateful that you found your way to our Web site, and I know that you will find it to be an invaluable source of shared information and support as you continue your ASPS battle. After your Cediranib dosage reduction to 20 mg. and the subsequent disease progression, did Dr Kumar and your other Clinical Trial oncologists at NIH consider the possibility of resuming the higher 30 mg dosage to try to determine if that would once again stabilize your disease, and if that isn't possible due to the Trial protocol, have they offered you any other treatment suggestions or options? I would think that Sutent would certainly be a good choice since it seems to have shown success with other ASPS patients in stabilizing their disease, although I don't think that it has shown as significant of tumor shrinkage as Cediranib has. ASPS patient LCMA has had stabilization of her disease for the past two years of her Sutent treatment, and you can follow her treatment experience and results at her personal blog which is
LCMA.blogspot.com Also if you contact me at my e-mail address which is BonniHess@aol.com I will be glad to give you her e-mail address if you want to write to her personally. Also, ASPS patient MJ who was also on the Cediranib Trial at NIH and is now no longer on it due to severe side effects even at a greatly reduced dosage, was scheduled to begin Sutent treatment in August. I am Hoping that MJ's husband Brian will update this Board when he has some information about her treatment experience and results to share, but in the meantime I will be glad to send you his e-mail address if you would also like to contact him personally. ASPS patient Paula has also experienced stabilization of her disease since beginning her Sutent treatment, and you can follow her treatment experience and results through her sister Mania's updates on the Sutent thread of this Forum. Dasatanib and Pazaponib are two other new anti-angiogenic tyrosine kinase inhibitors in the same class of drugs as Cediranib and Sutent, but I am personally unaware of any other ASPS patients who have been treated with them, and if they have, what the treatment results were. Information on another interesting new treatment option which is a Vinca treatment called ALB109564 was recently posted by 'F' in the Clinical Trial topic on this Forum, and it might be worth reviewing and discussing with your oncologist. You sound like you are very knowledgeable and proactive in managing your care and treatment Nathan, and you seem to have a very postive attitude both of which are critically important in this challenging battle with this extremely rare and little known disease. Please know that I am here to try to help you in any way that I can with shared informaion and support, and that my most caring thoughts and best wishes are with you.Take care and keep this Board updated as you are able.
With special caring, healing wishes, and continued Hope,
Bonni Hess, mother of 28 year old Brittany diangosed with ASPS in July 2001 and currently continuing her 16 month Cediranib treatment in a Clinical Trial in Edmonton, Alberta.

Sorry to repost this, it wouldnt let me edit my other post.

Thank you so very much for you kind welcomes. I already have found this site to be an invaluable resource and I'm excited to be a part of it.

To answer your question Bonni, when Dr. Kumar, Dr. Horniffer and I decided to go down on the dosage, it was under the current impression that dosage reduction wouldnt have a negative impact on the drugs effectiveness. They thought this because there were apparently a few patients who had dosage reduction and still showed the same met size decrease. However, once my dosage was reduced the evidence started to become clear with other patients. By the time I was scanned next, they had found many of the patients had regressed, including me.
I did try to negotiate with them to bring the dosage back up, find some sort of loop hole. They told me they would look for some sort of wording in the protocol, but they found nothing. We discussed a few things but there isnt very much open in the way of trials right now. Also the unfortunate fact that I have recently learned about cancer treatment is that the more trials you've been on, the less you are qualified for.
Which brings me to a question I'd like to ask you Bonni. Brittanny, having ASPS for as long as she has, how many treatments has she been on and have you run into any trouble with trials not accepting due to previous treatment limits?
I have been on three treatments so far,
1. Ifosphomide/Doxyrubicin: December 08 - February 09, Uneffective.
2. ARQ-197: April 09 - June 09, Uneffective.
3. Cediranib: September 09 - August 10, Effective(Reduction with eventual stabilization)
I am actually going up for my next set of scans this coming Monday. I like to have a positive additude, but medically as well as logically, I see no reason why the Cediranib would simply start working again. So, I'm in for another trial of some sort. I have been looking into Dasatinib. It looks good, but one of its most common side effects is neutropenia and general low blood counts plus a possibility of hair loss. In other words, it is a pretty harsh chemo and I need to look for something for with which I can keep my job. I also read the post about ALB109564 and it certainly looks interesting.
So far though, Sutent looks like my fallback. However my doctor has told me that its an FDA approved drug for Kidney Cancer meaning that it can be hard to get approved by insurance for non-approved cancers like Sarcomas. I assume a few other patients have gone through that process, anything anyone can tell me?

Thanks so much again,

N. Andrew Carey

I removed the previous post and try to look why you couldn't edit it, this option should be open, may be something in the settings of the forum. I suggest you to copy the info re. systemic treatments you have been on so far to the personal updates and keep discussion further options incl. sutent insurance coverage there, it will be more convenient forum relevance wise.

Hello again Nathan,
Thank you for your very prompt response and for all of the important shared information regarding other Cediranib patients at NIH who have also heartbreakingly experienced disease progression on the reduced 20 mg. dosage regimen. I don't understand the Trial protocol's rigid inflexibility in not allowing patient's to resume the higher 30 mg. dosage if progression develops so that it can be determined if a return to the higher dosage could be effective. It certainly seems that this is something which would be important to determine, in addition to the humanitarian aspect of allowing patients to possibly regain disease stability. Unfortunately, rigid protocol with no exceptions seems to be the standard practice with Clinical Trials.
Regarding your question about Brittany's treatments during the past nine years of her challenging ASPS battle, she has undergone 23 surgical/ablation/radiosurgery procedures to remove/destroy tumors throughout her body, successful radiation to her primary tumor and failed radiation to her spinal tumor, and participation in three Clincial Trials including a failed GVAX Immunotherapy Vaccine Trial at Dana Farber in 2006, a failed ARQ-197 Trial at UCSF in 2008, and her current Cediranib Clinical Trial at Edmonton, Alberta which she has been participating in since April 2009. Because none of the traditional chemo treatments had been proven to be successful in treating ASPS, we had resisted subjecting Brittany to unproven toxic chemotherapies which could weaken her immune system and make it more difficult for her body to fight the cancer. Instead, we took the approach of resecting or ablating tumors as they developed, until an unresectable/unablatable tumor appeared in the head of her pancreas. The only treatment option was to find an effective systemic treatment to shrink/destroy the tumor, which thankfully Cediranib appears to have been successful in doing at this point. Prior to finding the Cediranib Trial in Edmonton, Alberta (the NIH Cediranib Trial had not yet begun recruiting at the time), we had researched and considered a Dasatanib Trial, but there was no data available at that time regarding the results of Dasatanib treatment for ASPS patients, and also we were told that Dasatanib would definitely cause sterility which was a major concern/issue. Sterility could possibly also be a side effect of Cediranib treatment, but we were told that has not yet been determined. Have you found any clinically documented or anecdotal data on the responsiveness of ASPS to Dasatanib?
Sutent seems like a good treatment option based on the successful response of some other ASPS patients. Regarding the concern about problems with insurance coverage for Sutent since it is already an FDA approved drug no longer available in Clinical Trial, ASPS patient AprilDee posted an entry in the Personal Update thread of this Forum saying that her oncologist was able to successfully petition Medicare to reverse their initial denial of coverage for Sutent and they are now paying for the drug. If you decide to pursue Sutent treatment perhaps you could contact AprilDee regarding the appeal process.
My most postivie thoughts and very best wishes will be with you for good news on your upcoming scans on Monday, and I will be anxiously awaiting your update on the scan results and your treatment plans. In the meantime, please take care Nathan and have a good weekend.
With special caring thoughts, healing wishes, and continued Hope,
Bonni