Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear ASPS Community Friends,
I have been contacted by a young woman who was diagnosed with ASPS in November 2009. She is reluctant to actively participate on this Board at this time because she finds it emotionally overwhelming, but she has graciously given me permission to share her information. She was accepted for enrollment in the NIH Cediranib Trial today, but cannot begin taking the medication until she undergoes ablation to treat a concerning lung met which is located close to a bronchial vessel which could pose a bleeding risk from the Cediranib. Her spot in the Trial is being held for her until she has completed the ablation, which will be scheduled as soon as possible. The new patient said that the Phase 2 NIH Cediranib Trial is now closed for further enrollment, but that a new Cediranib Trial is going to open there for ASPS patients which will require a biopsy of the tumor as part of the protocol. I will try to keep this Board updated on the new patient's treatment experience and results when she provides the information to me, and until she is willing/able to participate in updating the Board herself. My best wishes and greatest Hope are with her for a very successful outcome to her treatment.
With special caring thoughts and continued Hope,
Bonni

Hello Bonnie
Please, tell her that if she wants to tak to me i was at the same hospital. You have my cell number
Also, just went thru a lung sx and would love to be around to be suportive if needed 24/7...

Hello
I am posting this for J who has been coughing up a small amount of blood every few weeks and she was wondering if anyone that is also on the trial was doing this before they started the drug?

Dear Amanda,
Thank you for your kindness to J. in posting on her behalf. It would probably be best if you could encourage her to register and participate on this Board herself, if she is able to, so that she can personally share her own information and questions in order for other ASPS Community members to be able to better address her questions and respond to her directly. Please tell her that It would be very helpful and deeply appreciated if she would, anonymously if she wishes to, share her Cediranib treatment experience information and the results of her Trial status scans on this Board since all of the shared anecdotal treatment information is so vitally important to all of us who are closely following this promising new medication, and we all need to actively communicate and share information with each other. The more people who participate in updating and sharing their information, the better informed and more knowledgeable we can/will all be, and knowledge is power in fighting this very challenging disease.
Take care dear Amanda, and give J. my best wishes for her treatment success and healing.
With special caring thoughts and continued Hope,
Bonni

Hi Bonnie
I have asked her to post but she isnt ready yet there has been alot going on.
So she asked me to ask here and sadly no one responded any information... The bad thing about this is that she will be starting the trial soon and now has no idea if anyone has been on this trial and was at times bringing up blood.

Evidently there are a few on the trial that are also not posting and only reading it is sad i agree and i wish that they would just start to post at least the information on all treatments under a fake name if need be or in a topic that no one can ask questions they can just post there info and walk away. To some i think the interaction is what maybe hard for them we all deal with this in are own ways. For me i had you and everyone and it helped me so much!! <3 But, to others it makes it i guess harder...

I am looking forward to everyone at least getting to talk to her when she does start posting she is a very nice lady as you know

Hello again Amanda,
Thank you for responding so promptly. I am assuming that the fact that no one responded to the question about whether they coughed up blood prior to starting Cediranib treatment indicates that at least no one who is actively participating on this Board who is on Cediranib treatment may have experienced that symptom. However, since frustratingly only a few people on the Cediranib Trial seem to regularly update their information it is difficult to know if the lack of response to J's question is an accurate reflection of how many people, if any, may have had this problem. When I previously talked with J. regarding her concern about this matter, I urged her to discuss it with her doctors prior to beginning the Cediranib treatment to try to determine if they were aware of other ASPS patients on the Trial who had had this symptom, and if the doctors felt that the coughing up of blood would pose a problem or risk for her on an anti-angiogenic medication like Cediranib. Hopefully she has done this and is satisfied that she doesn't need to postpone starting her Cediranib treatment until the cause of her coughing up blood has been addressed and treated.
With more special caring thoughts and continued Hope,
Bonni

Dear "J":

I have not heard of anyone coughing up blood while on the trial. I had internal bleeding just recently because of the Cediranib, but I had it due to some sores in the throat and my stomach been too soft. They gave me two medications for it. My whole point though is that as soon as I reported my bleeding, the whole team at the NIH ask me to immediately stop the medication due to the bleeding factor with Cediranib. Apparently, if you bleed while on the drug it could get out of control fast. Please, let the team know what is happening so that they can diagnose why your bleeding is occurring prior to your first dose of Cediranib.

I hope for the best.

Sincerely;

Mario E. Arevalo

I remember when argonaut posted that Antony had been coughing up some blood at some point but it has resolved itself without any intervention (if I remember correctly), may be if he sees my post he can comment on it. Her (J) symptoms have nothing to do with the cediranib trial as she has not started yet?
Also I checked the web-page for this trial and they apparently increased enrollment number - it is now says 60 people - so anyone can not be the last one yet.

Hello and ty all for responding
J is having a treatment today before starting the Ced trial to look and see where this bleeding is coming from and to see if they can fix it in some way. I am going to ask her to post tomorrow or as soon as possible she needs to talk to everyone that is on this trial it will help her so much and she can also get tips on the side effects.

Olga, from what i have been told that there are close to twenty other ASPS paitents also on this trial all from various places and they are not posting here as of yet
Maybe there could be a place for posters to inform the forum and not get asked questions and be anon :/

I dont think people relise that the help we all get here comes in so many forms! From medical situations that others have gone thru and small things like having a pillow that suported an area of the body that relieved pain for someone else. It is all of it and I am sad that we are missing these twenty paitents stories and treatments and things that helped and hurt them. Maybe these posts will help get a few to post and help

Hi Amanda,
I will try to contact Dr. Kummar, the lead NIH Cediranib Clinical Trial oncolgist, and ask her to at least make available to her ASPS patients information regarding our CureASPS web site for those patients who for whatever reason are not aware of our organization. Those of us who particpate on this Board understand how invaluable the researched and anecdotal information and strengthening support and encourgement are that is shared here. I find it very difficult to understand why anyone who is fighting this extremely rare and challenging disease would not avail themself of any information that there is available to them, even if they choose to do it anonymounsly if they have privacy concerns. However, all that we can do is offer this vitally important resource, and Hope that people will utilize it and actively participate on the Discussion Board, instead of just taking the information that is so graciously provided by everyone on the Board, and not giving back by sharing their own personal anecdotal treatment information from which we all can learn.
With special caring thoughts and continued Hope,
Bonni

HI Bonnie
I am so glad you are going to give this sites information to the Ced trial people and I hope with all my heart that these people start to post soon!
As i said before it has helped me so much! It helped me to make decisions in my treatment and i had all of you to bounce questions and concernes over with!
Others with ASPS sharing there stories and feelings...

I dont think i would be where I am right now without this forum!

Hello all,
I hope that they have been able to discover the bleeding problem for J. It seems that recently Jordanne has thrown up a little blood. She has been experiencing quite a bit of vomiting recently and we are hoping it was more a virus but I don't think so at this point. We will be at NIH Monday and Tuesday so I will try to remember to bring up the forum with them. I wonder if they don't want too much information shared amongst trial participants so they get a more accurate reporting of side effects. Sometimes you have to wonder if something is really a side effect or just life.
For me, as a mom, it helps to read the posts and hear possible solutions for some of the side effects as Amanda said. I think that many of the patients themselves are just trying to live as much of a normal life as possible without thinking and talking about cancer all the time. It seems that mostly it is caregivers or family members that post here.
We will all keep hoping that these clinical trials will lead to something much more permanent. From the sound of things, Cedirinab and Stutent sp? have been the most promising so far.
God Bless,
Dotty

Dear Dotty,
I am so sorry to hear about Jordanne's increased vomiting, and although I Hope that it is just a virus, based on Brittany's experience I fear that it may be a side effect of the Cediranib. Although Brittany continues to suffer nausea and occassional vomiting, she has thankfully not had a severe vomiting episode requiring hospitalization since early June.
I did write to Dr. Kummar a couple of weeks ago to request that she provide information to her ASPS patients about our CureASPS organization and encourage them to participate on our Web site Discussion Board. She was kind enough to respond to me with the following:
Dear Ms. Hess,
Thank you for your interest in our clinical trial. As part of the information provided to patients, they are counseled about the available resources including support groups that could be a source of information and help.
We hope to continue our effort in the treatment of ASPS and appreciate the continued support of patients, their families, and organizations such as CureASPS.

Hopefully having been provided with the information about our organization and Web site, more of the participating NIH Cediranib Clinical Trial patients or their family members will become active on our Board and post updates on their Cediranib treatment experiences and results, including Cediranib patient "J" whose thread I am writing on now.
I Hope that Jordanne has a good Clinic appointment at NIH on Monday and Tuesday, and if she is having scans, that you will have good news results to share of continued stable disease and tumor shrinkage. Please travel safe and give Jordanne and yourself special hugs from me.
With special caring thoughts and continued Hope,
Bonni

As of right now the trial is still recruiting new patients.

Hello,
Because of bleeding on and off from what we are asuming was from her lungs J never went on the Ced trial...
Here is a link to the topic and post

http://www.cureasps.org/forum/viewtopic.php?f=59&t=632