Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I have 3 mets which where streated sterotactically in January. My last MRI July 4 shows 2 new mets. I got a second opinion and the othere radiation doc said only 1 new met. If the spots are not mets are the abcesses? How do you tell the difference. How do I know which Doc is right?

Here is an article from PubMEd comparing WBR to radiosurgery

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

They both want me to do WBR. I would like to hear some feedback from others who have had experience with WBR

Charity - why wouldn't they do a radiosurgery again on this 2 new mets? What size they are?

Latest studies have shown that WBR and RS are supposed to work together. The reasoning with proceeding with WBR is that I have to kill the ones we don't see. I was just meeting with my Aunt who is a neurosurgeon. She reveiwed my images and sees micromets which are not reported on my MRI. So radiologists here don't identify everything.I have 2 new mets. One of the new ones is located on my occipitel lobe which has really weakened the vision in my left eye and makes my eyelid twitch all the time now and its only 4mm. I have to do what I can to stop the growth of any new mets in the brain since we are so limited with the kind of treatments we can use when the mets are not resectable. I have seen a neurologist and a neurosurgeon regarding my brain mets. They both stress the impotance of controlling the growth and attacking the occipitel, so I have decided to use both methods starting with WBR.

Brain Mets are scary. You are so limited in the treatments. My new occipital met has caused reduced vision in my left eye and its only 4mm. I also experiencing numbness in the left arm and leg when I am sitting down. I dont get it when I am lying down or standing. I will be going to have 10 radiation treatments starting Sept 18th. I know WBR is not a favoured treatment, however I have 5 visible brain mets I cannot afford to have anymore.

Charity, my son had 3 weeks of whole brain radiation in July. From his Jan. to his May scans, 4 new brain mets presented. His history with brain mets includes a right parietal craniotomy (resection) in July 2004 when the first brain met presented. It appears that it never came back. In Oct. 2005 he had cyberknife surgery (targeted radiation) to a second brain met. That one seems to have remained unchanged over time. Then, in his Sept. follow-up mri, a parietal mass that measured 8 mm in the June mri now measured 12 mm. His radiation oncologist noted that there was one month following the June mri before the whole brain radiation began, so it is not possible to assume that the whole brain radiation had no effect. His oncologist said that it was too soon to know if the Temodar has had any effect. The good news was that no new mets had appeared, which is the idea behind the whole brain approach. We met with his radiation oncologist last week, he then consulted with my son's neurosurgeon, and so tomorrow we will meet with the neurosurgeon to discuss possible resection. I assume the plan would be resection of the 12 mm mass and then cyberknife the area and the other remaining (smaller) tumors seen at treatment. My son began a regimen of Temodar and Interferon on Aug. 8 (see PMID 16639739 -- i.e., just plug that number in the search box in PubMed http://www.ncbi.nlm.nih.gov/entrez/quer ... l=umdcplib -- this abstract appears to be what my son's regimen is). Of course if he is to have surgery his chemo will be interrupted. You are not alone, Charity. One of my old friends from the ACOR Sarcoma list serve, Orland Hetherington, may he rest in peace, had a wonderful motto "HOPES AND DREAMS REIGN WHERE CANCER CANNOT GO"

Thanks Beth. I am hoing my WBR stops the growth of any new tumors. Then I would consider it a success. So far I am still on 1 mg of dex every other day. Perhaps I will increase after treatment but I will take it one day at a time.I will look up that link as well because I am looking for some sort of systematic treatment. I hope for the best for your son.