Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Discuss brain radiosurgery here.

Patients with a total treatment volume <7 cc and < 7 metastases (4-6) have a favourable survival after Radiosurgery according to the latest (2007 June) publication from the University of Pittsburgh:
Recursive partitioning analysis of prognostic factors for patients with four or more intracranial metastases treated with radiosurgery.
http://www.ncbi.nlm.nih.gov/sites/entre ... h=17535022

PMID: 17535022
so the early discovery of the brain mets increases the chances to eliminate the brain mets, they have to be small.

After several months of stability, we found out this week that Adam has 5 brain mets. They are small, but the doc has said that they must be treated. Adam is going to have gamma knife radiation on Tuesday at Harborview Hospital in Seattle. He had this on a met about 2 years ago, and it was effective in killing the tumor. With 5 the situaiton is a bit more challenging simply because it is a more complicated day for Adam -- the fame will have to be moved several times. These mets were not present 3 months ago, so please, everyone, keep having those mri's and ct scans regularly.

WBT was presented as one of the 2 options, but was not the recommended treatment at this time.

Eva- this is a very sad news but I hope that Cyber knife will be successful in destroying there new mets. Thank you for the reminding us how important is to keep checking the brain and I have a question reg. what size these new mets are and what scan was used when Adam's new mets were found - CT or MRI. I know that MRI is the best scan for the brain mets detection but it is hard to persuade the oncologist to order the MRI for the asymptomatic patient more often then once a year...

I was saddened to hear about Adam's update. We'll be praying for a complete response to his gamma knife treatment next week.

Dear Eva,
Thank you for your thoughtful update. We are devastated to hear about the diagnosis of dear Adam's five new brain mets and we deeply share your pain and sorrow. Although this is heartbreaking news, we are grateful that the mets are very small and that they can be treated with Gamma Knife. We are holding tight to Hope that the treatment will be successful in destroying all of the tumors, as it was with his previously treated brain met about two years ago. Thank you for your invaluable reminder to everyone about the importance of regular brain scans, even though there are no symptoms as in Adam's case. As you know, and in answer to Olga's question, it is ESSENTIAL that a brain MRI be done rather than a brain CT. We heartbreakingly found this out the hard way with our precious Brittany when a brain CT didn't show any brain mets even though she was having some headaches, and then a year later the brain MRI revealed two brain tumors which had tragically grown so large that they were unresponsive to the Gamma Knife treatment, and consequently required resection five months later. It is critically important that the brain mets be found at the smallest possible size in order to have the best chance for a successful response to the Gamma Knife treatment. Brain mets can grow quite rapidly, and in the tragic case of one of our ASPS Community patients, his brain tumor went from being undiscernible on the scan to being too large to treat during the five months between his brain scans, and he devastatingly lost his courageous battle. As you kindly shared with us that Adam's doctor told you, Gamma Knife can be safely repeated many times to treat new tumors if they show up, but the key is to find them and to have them treated as soon as possible. Please know that we will all be holding dear Adam and all of your family very close in our hearts, our thoughts, and our prayers on Tuesday, and keep this Web site updated when you are able. Take care dear Eva.
With special caring thoughts and continued Hope,
Bonni

Dear ASPS Community Friends,
Heartbreakingly, Brittany's last week's three month brain MRI revealed a new small four mm. brain met, but thankfully, Brittany's radiation oncologist was able to quickly schedule her for Gamma Knife treatment for the new met as well as a smaller two mm. met which was previously thought to be a blood vessel. Yesterday Brittany underwent her third Gamma Knife procedure in the past four years. The frame attachment and the procedure went well, and the doctor thinks that the procedure will be very successful due to the small size of the two tumors. With the exception of the pain of the frame attachment, some pain and intense headache pressure at one of the pin sites, and the rebound headache pain after the frame was removed, Brittany endured the procedure well and has made an incredibly speedy recovery, already back to driving, doing her usual activities, and full of energy today . We were extremely happy and relieved to learn that yesterday's very detailed brain MRI showed that two of the small brain mets which were Gamma Knifed in May 2008 have now completely disappeared, and the other two treated mets appear to be shrinking. Based on this seemingly successful outcome, compared to the devastating failure of Brittany's first Gamma Knife treatment in October 2004, we feel that it is vitally important to be vigilant in having brain MRIs ( brain CTs are NOT adequate!) at least every six months, and every three months if there is a previous history of ASPS brain mets, because we have learned the hard way that the smaller the mets, the better the chance of a successful Gamma Knife response and outcome. Despite our request for a brain MRI in the fall of 2003 due to Brittany having some concerning headache pain, Brittany's then oncologist said that a CT would be adequate. That scan deceptively showed no brain mets, but a year later Brittany was experiencing increasing headaches, and when the brain MRI was done, two brain mets of 1.2 cm. and 1.3 cm. were found. Gamma Knife treatment to these two larger lesions was devastatingly unsuccessful and resection was required five months later. Brittany will have another brain MRI in a month to try to determine if yesterday's procedure is working to shrink and kill the two treated tumors. Hopefully I will be able to update you with good news results at that time. If anyone has any questions about the procedure, please feel free to contact me on this Board or at my e-mail address which is BonniHess@aol.com.
With special caring thoughts and continued Hope,
Bonni

Hi Bonni,

I'm sorry to hear this but I am encouraged by the overall outcome as you described. In my son's latest case in which two new mets were found and cyberknifed, we repeated the mri a month after the treatment in hopes of meeting a clinical trial criterion. my prayers are with Brittany,

Beth

Dear Beth,
Thank you for your very kind words and thoughtful shared information. Brittany is also scheduled for a one month post Gamma Knife brain MRI with the same purpose of Hoping to meet clinical trial criteria of brain met stability. In the meantime, our aggressive search continues for a systemic treatment clinical trial which will provide the best chance of a successful response and positive outcome. My most special thoughts and prayers continue to be with your dear son and your family on this continued very difficult journey which we share.
With special caring thoughts and continued Hope,
Bonni

Joshua SRS


http://www.cureasps.org/forum/viewtopic ... t=90#p7910
Joshuas right side tumors were 3mm and 5mm
Not cm's