Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Anthony got another CT scan on Monday. No new tumors and no growth. That makes it 26 months with out growth. Which I consider pretty good considering he has hundreds of mets in his lungs, the largest 1cm.

So, I would have to agree with Brittney that the clinical trial appears to be doing something. As the tumors stopped growing at the same time as the start of the clinical trial.

I'm so happy! That is awesome news! We're fighting hard, and WE WILL SURVIVE!!!

It has been approximately 32mnths since Anthony started the clinical trial. He had his latest CT scans and bone scans done on the 15th. The results are stable disease. We were told it looks like some grew a little and some shrunk a little. Which to me means probably no change just how the slices lined up. Bone scans negative.
While I am very happy with Anthony's results, it bums me that the results have not been as positive for others. I truly was hoping this would cure everyone.
Quick recap: Anthony has had surgery to remove primary in calf. GVAX trial and individual trial w/anti-ctl4a compound ipilumiab. Remaining tumors are "imnumerable" in the lungs.
God bless and thank you for your prayers and support.

Dear Scott,
Thank you for your faithful updates and special sharing. We are so happy and encouraged to hear about Anthony's GOOD NEWS! scan results which show continued stabilization of his disease. Did his scans also include pelvic and abdominal CT's and a brain MRI in addition to the lung CT and bone scan? Will he be undergoing any other kind of treatment for his existing multiple lung mets? When will his next scans be done?
It is very difficult to understand why most of the other patients who we know of that participated in the GVAX Clinical Trial have experienced continued/ increased/ aggressive/ and even fatal disease progression. It would be very interesting, and I would think extremely beneficial, to have some follow-up studies done to try to determine what might have contributed to the indidual different responses to the Vaccine, but perplexingly and disappointingly thus far, there has been no post Clinical Trial follow-up done by the Dana Farber GVAX Clinical Trial research team to request scans and radiologist reports or to check on Brittany's status, other than that information which we have intiated sending to them ourselves. Has there been any kind of formal follow-up done by them for Anthony? We Hope that Anthony is feeling good and that he will have continued disease stabilization. Please give him a special hug from us, and know how very much we are sharing the special joy and strengthened Hope of his GOOD NEWS! scan results.
With special caring thoughts and continued Hope,
Bonni

Just the chest CT and bone scan this time. He has had abdominal scans w/in the last year. We have no plans for further treatment. The lung mets are too numerous for surgery/radiation. I am loathe to start something which might damage his immune system or have other known/unknown side effects since the tumors in his lungs may be necrotic. His next scans will be done in Dec.

As far as follow up goes it has been my impression that the doctors communicate regulary among themselves. The general timeframe for analysis is at the five year mark after treatment.

As far as the differences between Anthony and other patients, one theory I have is that since this was Anthony's first clinical trial his immune system had not been damaged by other treatments. Also, from what I have read and the good information 'F' has posted. It seems that ASPS in different locations may have different mutations. If these mutations are significant enough it could cause the immune system to not attack them after the GVAX trial. Thus, one might conclude that the length of time that mets are present and status of immune system all factor into how well this treatment might work. I would like to see more patients get this as a first course of treatment to see if the results are better. Maybe, some of the mutagenic effects of some treatments cause variants. Anyways, this is just my humble thoughts and since I have no medical training that should be considered as well.
Give Brittany a hug from all of us,
Scott

Dear Scott,
Thank you for your thoughtful response, shared information, interesting thoughts and insights, and special hug for Brittany. It is so difficult to know/understand why different patients responded differently to the GVAX Vaccine with most of the participating ASPS patients discouragingly having had an unsuccessful response, and we have done everything we can to try to figure out some kind of conclusive answer. Regarding your theory on there possibly being a better response if the immune system hasn't already been damaged by other treatments, Brittany had not received any other systemic treatment prior to receiving the GVAX Vaccine. and yet she has experienced devastating post GVAX Vaccine disease progression. However, in the 17 months preceding her participation in the Trial, she had undergone Radiofrequency ablation for a liver met, Gamma Knife for two brain mets, five months of long term high dosage Decadron steroid usage to try to reduce/control brain swelling from the failed Gamma Knife treatment, four brain surgeries, Cryoablation for three lung mets, and Radiofrequency ablation for a tibia met. Certainly all of these procedures could have weakened her immune system and contributed to the apparent heartbreaking failure of the GVAX Vaccine for her, although it was our understanding that the goal of the Vaccine was to help strengthen the immune system against the disease. Hopefully the researchers will be able to determine the reason for both the successful and failed responses to the treatment, and based on that knowledge changes can be made to help make the Vaccine effective for everyone. In the meantime, our relentless search continues for an effective treatment and cure for this insidious disease.
With warm hugs and special caring thoughts for Anthony and your family, and continued Hope,
Bonni