My Grandson Relapsed.....A few Months Ago after a 9 month battle My Grandson was scanned and found to have no cancer in his foot, groin , Knee, Leg and Lungs. All areas where cancer had been found in April of 2011. The first scan after he had had been told he was in remission showed all the old nodlues had re appeared in his Lungs and a few new ones were found. The Doctors said there were no signs of any Cancer in his foot, Knee , leg Or Groin...but the Lungs definetly showed Cancer growths. He Had Radiation and Chemo Thearpy of Doxarubcin and Ifoximide ( Not sure of spelling ) ..,Now hes being told that he cannot go back on the Doxirubicin which helped, because of the damage which it may cause to his heart and the fact that the cancer has seen it already, may not get the same result. We are now looking at a number of Clinical Trials at CHOP ( Childrens Hospital Of Philadelphia ) and any other place..Can anyone out there suggest any succefull trials that may help ?....Any Responses would be appreciated...Thank You Frank
I am a SS survivor with mets for 2 years. My success has been with Ifosimide 21 day cycle. This was better then the Dox i had before my primary surgery. Ifos is first line treatment and has a better success record than a clinical trial.
Side effects were not as bad for me as the Dox. Ifos. does not have a life time max dosage like Dox too. I am being treated at the Hillman Center in Pittsburgh. They have a Sarcoma treatment center and have been keeping me alive.
It is important to start treatment on nodules before the start progressing and creating lung problems. I had two collapse lungs earlier this year but are stable at this time.
My daughter had proton radiation for her ss in the lung after they removed two thirds i will add your grandson to my prayers
My daughter is currently in a trial at St. Jude in Memphis. We travel every 21 days there. She is in a trial called Angio 1, she takes 2 chemo meds and gets another through her port. This is working great for her. The doctors in Hershey gave up and didn't know of any other chemo that would work. she has a tumor near her espophogus and is shrinking rapidly. You can call and ask for Dr. Navid 901-■■■■■■■■. I hope this helps. Marsha
the chemo that she is on is: sorafanib, cyclophosfomide, and bevacesamab (spelling is probably wrong)
sashaminpin said:
My daughter is currently in a trial at St. Jude in Memphis. We travel every 21 days there. She is in a trial called Angio 1, she takes 2 chemo meds and gets another through her port. This is working great for her. The doctors in Hershey gave up and didn't know of any other chemo that would work. she has a tumor near her espophogus and is shrinking rapidly. You can call and ask for Dr. Navid 901-565-3300 . I hope this helps. Marsha
I have had more success with Ifosfamide than any trial that I have taken so far as well. SS seems to be the most responsive of all Sarcoma types to this drug as well.
There is a stage 3 trail called Picasso3 (http://www.picasso3trial.com) for a drug named Palifosfamide. Sadly the drug is being taken with Doxorubicin so it can't be taken through trial. If you go to a center where it is being offered you may be able to take it through compassionate use though.
While Ifosfamide is a pro-drug (needs to be activated in the body). Palifosfamide is the active metabolite of IFOS, and therefore does not have the toxicities associated with the none-active metabolites in IFOS. The patient gets a greater dose of the active ingredient, and does not have to take it over an extended period with Mesna and fluids. Patients who's SS did not respond (or stopped responding) to IFOS have had response to this drug so I think is very promising. Here is an interesting article about it (http://sarcomahelp.org/learning_center/palifosfamide.html
Here is a link to the trial. If you scroll to the bottom you can see the places it is being offered. I believe that 4 are in Pennsylvania and one is in Philadelphia. http://clinicaltrials.gov/ct2/show/study/NCT01168791?term=palifosfamide&rank=6&show_locs=Y#locn
Hello Drake,
I am new to this blog and your information is valuable!
If my health and traveling will allow, i plan on attending the SFA Sarcoma conference on April 29 in New your city. I want to check on this treatment option.
I was in the hospital for the last two days for a side effect of extreme leg pain. Not the return of the primary tumor, or a clot. I get mass fluids build up for 3 days after Hi Dose on my thigh that has atrify from the primary tumor removal leg.
Take Care,
Carl
Frank,
My husband is currently on isosimide and doxarubcin and has almost reached his lifetime limit....again due to cardiac complications. Has he had any surgeries and/or are there any they are considering? We do not have any first hand experience with proton therapy, but I have heard many great things about it. Your family is in my prayers!
Hello Carl,
How are you doing? Sorry that I didn't respond until now. I certainly think that taking Palifosfamide through compassionate use is worth pursuing. I will be trying to take this myself should the Gemzar/Taxitore I am taking now not work. Will you be able to attend the conference on the 29th? Some of the Doctors at the event will likely know a lot about Palifosfamide.
Best wishes,
Michael Drake
carl firetto said:
Hello Drake,
I am new to this blog and your information is valuable!
If my health and traveling will allow, i plan on attending the SFA Sarcoma conference on April 29 in New your city. I want to check on this treatment option.
I was in the hospital for the last two days for a side effect of extreme leg pain. Not the return of the primary tumor, or a clot. I get mass fluids build up for 3 days after Hi Dose on my thigh that has atrify from the primary tumor removal leg.
Take Care,
Carl
My Grandson is starting in a trial at Childrens Hospital Of Philadelphia on Monday April 30th. It is a Phase 1 Study Tltled ADVL 1115 and Is Phase 1 AMG 386 which is a Angiopoietin Neutalizing Peptibody. Amgen 386 has shown good results in Adult Women with Ovarian Cancer....Here is a link..... http://wwwext.amgen.com/media/media_pr_detail.jsp?year=2010&releaseID=1434921 Thanks to everyone who is keeping Billy in their Prayers.
Dominique Bigler said:
Phase ones do not help, they just use you as a guinea pig to see how much chemo is safe to take. Your grandson is not an adult woman with ovarian cancer, so why do they think it would help him?
Dominique Bigler ...Your sarcasim is not appreciated...You are referring to a 17 year old boy who has Synovial Sarcoma...and you are wrong Phase 1 Trials do help..If You did any research on Amgen 386 You would see that it had significant success in shrinking Tumors...Please do not respond with idiotic answers Like "he is not a woman " or "Phase i is for Guinea Pigs"..Kepp you negative , sarcastic responses to yourself...They are not welcomed...
Marsha....What is the trial number so I can see if My Grandson would be eligible..Thanks Frank
sashaminpin said:
sashaminpin said:My daughter is currently in a trial at St. Jude in Memphis. We travel every 21 days there. She is in a trial called Angio 1, she takes 2 chemo meds and gets another through her port. This is working great for her. The doctors in Hershey gave up and didn't know of any other chemo that would work. she has a tumor near her espophogus and is shrinking rapidly. You can call and ask for Dr. Navid 901-565-3300 . I hope this helps. Marsha
It saddens me to see conflict on this site. Having synovial sarcoma is terrible and very stressful... and we are all in this together. I think it is best to always try and reach out in a positive way and be helpful whenever possible.
Domonique, I am a bit confused as I thought that you have had success with a phase 1 trial. http://clinicaltrials.gov/ct2/show/NCT00665990. Are you upset because it stopped working? If so, I am very sorry to hear that.
Dominique, are you being frustrated because they didn't offer him the angio1 trial while it is working for you?
Tradernj, the trial Sashaminpin was referring to is the one Drake is mentioning above...
And here is the link to the trial being considered for future reference:
the trial I am talking about is with the drungs: sorafenib, cyclophosphamide, and bevacesamab. It is working for my daughter, and every person is different, so I would hope it would work for your grandson Frank.
My daughter is Dominique, and I would appreciate it if you would talk to her a little nicer, She is only 17 and has been going through this for almost 4 years. She is only saying what her doctor told her. Phase 1 trials can help someone but are designed to help the doctors see how much the patient can tolerate. As far as medicine levels. We don't know about the trial that you all are discussing, but we do hope that it works for your grandson.
Tradernj,
My daughter is 17 too, and she is only trying to help. You are being a bit sarcastic, talking to her like that. Her doctor has told us alot about trials and she is just being truthful. We are in favor of trials and hope that everyone here can get help from one. we know that every person is different and what will work for one may not work for the other. You just have to keep a positive outlook. Just please don't respond to Dominique like this, she is going through alot too.
we are all going through this terrible disease, let's keep your negative opinions to yourselves.
Tradernj said:
Dominique Bigler ...Your sarcasim is not appreciated...You are referring to a 17 year old boy who has Synovial Sarcoma...and you are wrong Phase 1 Trials do help..If You did any research on Amgen 386 You would see that it had significant success in shrinking Tumors...Please do not respond with idiotic answers Like "he is not a woman " or "Phase i is for Guinea Pigs"..Kepp you negative , sarcastic responses to yourself...They are not welcomed...
All right everybody, let's not get overexcited over this little incident! Billy and Dominique are facing the same difficult situation so let's support each others rather than fight about semantics. Anyway, we are all guinea pigs the minute we enter the doctor's office. We all have to make difficult choices about treatment plan and there is probably not such a thing as a good or bad decision. But there can be plenty of different opinions about what is a good choice and what is a bad one. The art of medicine is still in its infancy and technology is not there yet to be a good predictor of outcome or a good help for the decision makers. One drug may work wonders for one person and do very poorly for another. One drug may have a poor background to support its use and yet work fantastic on an individual for unknown reasons. We all have to play roulette against our will :-( Let's take it one try at a time and hope for the best!
I agree with Elodie. It's so incredibly tough what Billy & Dominique are going through. Let's focus on them and not on a comment made in frustration. This network works because of the mutual respect and tolerance. It's a magical place.