Cure Alveolar Soft Part Sarcoma International (iCureASPS)

The clinical trial started in January 2006 and is still going on. So far 11 patients were selected to participate in the trial. Eight of those patients have the diagnosis of ASPS. One patient of the eight has completed the study. Two of the eight patients have been withdrawn from the trial secondary to progressive disease. The remaining five of eight are still on the study. There have been no serious toxicities associated with the vaccine and it has been tolerated extremely well. It is too early in the study to make any clinical interpretations and the laboratory studies are on - going as well. Everything is progressing according to the plan. Recruitment and selection of patients to participate in the trial continue (June 14 2006).

Adam's last ct and mri showed minimal and probably no growth of the mets in his lungs. The mets in the liver are stable. The brain met (which was treated with Gamma Knife radiaiton at Harborview Medical Center in Seattle), appears to be necrotic.
In spite of the liver tumors remaining stable, Adam is exploring having RFA on the liver tumors within the next few months.

Thank you for your update on Adam's post Immunotherapy Vaccine scans Eva. We are so happy and relieved that Adam appears to have stabilization of the disease with no new mets, no increased growth of his liver mets, and very little if any increased growth of his lung mets. Having no new tumors and very little to none increase in the size of the existing tumors is similar to those results experienced by both Brittany and Anthony, which increases the Hope that the Vaccine is helping to stabilize the progression of the disease. Only time and more followup scans will tell if the Vaccine is working, but for now we can be grateful that at least three of the Clinical Trial patients developed no new tumors during the past eight months. Unfortunately, at this point we don't know about the results of any of the other ASPS patients who were involved in the Clinical Trial because disappointingly they have not shared their information. Despite the fact that Adam had no increase in the size of his liver mets, I very much agree with his decision to go forward with RFA treatment to destroy them since ASPS liver mets typically grow much more rapidly than ASPS lung mets, and as with all mets, it is best to treat them when they are as small as possible to assure the best chance for a successful outcome. Our best wishes will be with Adam for a successful RFA procedure, a speedy recovery, and continued stabilization of his disease. Please keep all of us updated on the Web site as you are able.
With special caring thoughts and continued Hope,
Bonni

October 11, 2006

The clinical trial "GVAX Cancer Vaccine" started in January 2006 and enrollment is still open to new patients. So far 11 patients were selected to participate in the trial. Eight of those patients have the diagnosis of Alveolar Soft Part Sarcoma (ASPS). All the eight ASPS patients have completed the study. There have been no serious toxicities associated with the GVAX cancer vaccine and it has been tolerated extremely well.

Encouraging evidence of biological activity was observed in skin biopsies from sites that were injected with killed tumor samples, after patients had received the vaccine. In one case, biological activity was noted in a tumor that was resected from a patient at the end of the vaccination period.

Patients who participated in the Cancer Vaccine GVAX trial have now the option to join, within 4 months following the end of their last injection, to an additional clinical trial that uses injections of gamma interferon and GMCSF. Co-injections of gamma interferon and GMCSF aim to maintain and /or increase the body's immune response to alveolar soft part sarcoma cancer cells.

It is too early in the study to make any clinical interpretations and some laboratory studies are still on - going as well.

Thank you so much for sharing this awesome report on the Cure ASPS website.
Elaine

Dear ASPS Community members,
It is with a very heavy heart that we recently learned about the devastating loss of another ASPS patient who participated in the GVAX Clinical Trial. Because we are restricted from obtaining patient Trial data due to HIPA privacy rules, and overall Trial data and results will not be available until the Clinical Trial is concluded or discontinued, our only source of information regarding patients' Vaccine experience and outcome is from those who communicate with us and share their information. This is critically important information for everyone who participated in the Trial, as well as for all of those in the ASPS Community who are closely following the outcome of the Trial. I would like to once again strongly urge all of the GVAX Vaccine Trial patients or their family members to PLEASE write to update their information. We all need this shared anecdotal information in order to have a basis on which to try to draw a conclusion about the success or failure of this Vaccine.
With deepest sorrow for the tragic loss of another ASPS patient,
Bonni Hess

Dear ASPS Community Members,
It is with the deepest sorrow and profound grief that we have once again learned about the tragic loss of yet another ASPS patient who participated in the GVAX Clinical Trial. I won't reveal the name of the patient on this Forum as I feel that will be done by the patient's family if they choose to do so. To our knowledge, within the past six months there have been three ASPS patients who participated in the Trial in the winter and spring of 2006 who suffered continued/increased disease progression and have now devastatingly lost their courageous battles. Once again, because of HIPA privacy rules and the Clinical Trial protocol which restricts the release of patient Trial data and results until the Clinical Trial is concluded, we have no way of knowing the post Trial outcome of the other ASPS patients who have participated in the Trial thus far. I urge any other GVAX Trial participants or their family members who are reading this to PLEASE update the vitally important information regarding the patient's Vaccine experience, outcome, and current health status. We all MUST communicate, network, and share information with each other because this extremely challenging battle with this very rare disease can't be won alone!
With a heart heavy with deepest sorrow for the devastating loss of another precious young Life, but still holding tight to continued Hope,
Bonni Hess