Re: Jen from California (Dx 2009)
Posted: Sat Apr 25, 2015 11:26 am
Dear Jen,
It was so good to hear from you again. All of us on this Board share your deep sorrow for dear Amanda's devastating loss and she is deeply missed. She truly cared about everyone in the ASPS Community and was a source of great support, encouragement, and inspiration for everyone who shares this difficult battle with this insidious disease which has now tragically taken her precious Life. Her bright, positive, invincible, and courageous spirit will continue to lead us.
I am so grateful that your November brain MRI was clear especially since you were having concerning headaches. Hopefully those headaches have now dissipated and resolved. I am sorry for the increase in the size of your lung mets, but am grateful that it was only a slight amount of growth with at least reportedly no new mets. You mentioned that the increase was seen on your March chest CT scan, and I am wondering if you only had a chest CT, or if it was a chest/abdominal/pelvic CT which should be done to monitor all of those areas for possible mets. If it was not a chest/abdominal/pelvic CT, I urge you to schedule an abdominal/pelvic CT or MRI prior to your June CT to ensure that there are no abdominal/pelvic mets because often if there is growth in the lung mets there may also be disease progression in other areas, and even if there is no lung met growth, mets can develop in other areas which thus necessitates adequate, regular, and vigilant scanning of all areas of the body, and not just the chest.
Regarding your question about PDL-1, I am personally aware of one ASPS patient, 15 year old Nathalie who is being treated with it. Because of Nathalie's age she was inelgible for the PDL-1 Trial, but her family launched a massive national media campaign to appeal to the pharmaceutical company for a pediatric exception for Nathalie to participate in the PDL-1 Trial which was finally granted, so you may be able to request a Compassionate Use Exception to be accepted into the Pittsburgh Trial if ASPS is not included in the disease enrollment protocol. I was in personal contact with Nathalie's father Nathan and have repeatedly urged him to post and participate on the CureASPS Board to share information about Nathalie and her PDL-1 treatment experience, but unfortunately and inexplicably he has not done so. He and Nathalie both have Facebook sites and you could possibly try to contact Nathan or Nathalie through Facebook with a private message to try to find out the results of Nathalie's PDL-1 treatment thus far. Hopefully you will have more success in receiving a response than I have! In the meantime, I Hope that you are feeling good and enjoying a beautiful California Springtime. Take care Jen and keep in touch as you are able.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
It was so good to hear from you again. All of us on this Board share your deep sorrow for dear Amanda's devastating loss and she is deeply missed. She truly cared about everyone in the ASPS Community and was a source of great support, encouragement, and inspiration for everyone who shares this difficult battle with this insidious disease which has now tragically taken her precious Life. Her bright, positive, invincible, and courageous spirit will continue to lead us.
I am so grateful that your November brain MRI was clear especially since you were having concerning headaches. Hopefully those headaches have now dissipated and resolved. I am sorry for the increase in the size of your lung mets, but am grateful that it was only a slight amount of growth with at least reportedly no new mets. You mentioned that the increase was seen on your March chest CT scan, and I am wondering if you only had a chest CT, or if it was a chest/abdominal/pelvic CT which should be done to monitor all of those areas for possible mets. If it was not a chest/abdominal/pelvic CT, I urge you to schedule an abdominal/pelvic CT or MRI prior to your June CT to ensure that there are no abdominal/pelvic mets because often if there is growth in the lung mets there may also be disease progression in other areas, and even if there is no lung met growth, mets can develop in other areas which thus necessitates adequate, regular, and vigilant scanning of all areas of the body, and not just the chest.
Regarding your question about PDL-1, I am personally aware of one ASPS patient, 15 year old Nathalie who is being treated with it. Because of Nathalie's age she was inelgible for the PDL-1 Trial, but her family launched a massive national media campaign to appeal to the pharmaceutical company for a pediatric exception for Nathalie to participate in the PDL-1 Trial which was finally granted, so you may be able to request a Compassionate Use Exception to be accepted into the Pittsburgh Trial if ASPS is not included in the disease enrollment protocol. I was in personal contact with Nathalie's father Nathan and have repeatedly urged him to post and participate on the CureASPS Board to share information about Nathalie and her PDL-1 treatment experience, but unfortunately and inexplicably he has not done so. He and Nathalie both have Facebook sites and you could possibly try to contact Nathan or Nathalie through Facebook with a private message to try to find out the results of Nathalie's PDL-1 treatment thus far. Hopefully you will have more success in receiving a response than I have! In the meantime, I Hope that you are feeling good and enjoying a beautiful California Springtime. Take care Jen and keep in touch as you are able.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni
The side effects is much less than Chemo and some TKI, the response rate looks promising...