Re: katrina on cediranib from U.K
Posted: Thu Aug 29, 2013 10:27 pm
Dear ASPS Community Friends,
Although Katrina has been out of contact with the Board for awhile due to problems with logging on to the Web site, I have continued to follow her on a personal Facebook blog. Katrina has now asked me to update the Board for her until her time and situation allow her to post an update herself.
Heartbreakingly, after almost two years of lung met stability on the Cediranib Trial in England, Katrina has now been diagnosed with a brain met and a large 6 cm liver met and has therefore been immediately taken off of the Trial. Inexcusably, despite Katrina's repeated requests to her oncologist for a brain MRI, the brain met went undiagnosed until it became symptomatic with severe headache pain and blurred vision. Additionally and equally inexcusably, the oncologist admitted that he saw the liver met on the CT scan in May when it was three Cm., but didn't tell Katrina about it because he "didn't want to jeopardize her participation in the Clinical Trial".... It is extremely difficult to understand this kind of irresponsible medical treatment, and my heart breaks for the difficult situation that Katrina now faces as a result of her oncologist's negligent "care". She is being offered very few treatment options, but is Hoping that some treatment will be found to treat not only her brain met and her liver met, but also her multiple lung mets which include a very large 10 Cm. met located close to her heart. Since Katrina knows how radioresistant ASPS is and how unsuccessful Whole Brain Radiation (WBR) has been for ASPS brain mets, she has wisely refused the WBR radiotherapy which was recommended and offered by her oncologist. Therefore, one of the alternative treatment options being considered for Katrina's brain met is stereotactic radiosurgery depending on the radiologist's assessment of her eligibility for the treatment based on the size and location of the met. Additionally, systemic treatment with Cabozantinib (Cometriq) may be a possible option that will be explored. Hopefully Katrina will be able to receive treatment for her brain, liver, and lung mets very soon. In the meantime, I know that she would deeply appreciate any messages of support and encouragement and any information or advice which anyone on this Board may have to share which may be helpful to her in her search for viable treatment options. If you would like to post a message for her I will share it with her as she truly needs everyone's help and support right now. I will keep the Board updated when there is more information to share, and until Katrina is able to personally post an update.
With special caring thoughts, concern, and healing wishes for Katrina, and continued Hope,
Bonni
Although Katrina has been out of contact with the Board for awhile due to problems with logging on to the Web site, I have continued to follow her on a personal Facebook blog. Katrina has now asked me to update the Board for her until her time and situation allow her to post an update herself.
Heartbreakingly, after almost two years of lung met stability on the Cediranib Trial in England, Katrina has now been diagnosed with a brain met and a large 6 cm liver met and has therefore been immediately taken off of the Trial. Inexcusably, despite Katrina's repeated requests to her oncologist for a brain MRI, the brain met went undiagnosed until it became symptomatic with severe headache pain and blurred vision. Additionally and equally inexcusably, the oncologist admitted that he saw the liver met on the CT scan in May when it was three Cm., but didn't tell Katrina about it because he "didn't want to jeopardize her participation in the Clinical Trial".... It is extremely difficult to understand this kind of irresponsible medical treatment, and my heart breaks for the difficult situation that Katrina now faces as a result of her oncologist's negligent "care". She is being offered very few treatment options, but is Hoping that some treatment will be found to treat not only her brain met and her liver met, but also her multiple lung mets which include a very large 10 Cm. met located close to her heart. Since Katrina knows how radioresistant ASPS is and how unsuccessful Whole Brain Radiation (WBR) has been for ASPS brain mets, she has wisely refused the WBR radiotherapy which was recommended and offered by her oncologist. Therefore, one of the alternative treatment options being considered for Katrina's brain met is stereotactic radiosurgery depending on the radiologist's assessment of her eligibility for the treatment based on the size and location of the met. Additionally, systemic treatment with Cabozantinib (Cometriq) may be a possible option that will be explored. Hopefully Katrina will be able to receive treatment for her brain, liver, and lung mets very soon. In the meantime, I know that she would deeply appreciate any messages of support and encouragement and any information or advice which anyone on this Board may have to share which may be helpful to her in her search for viable treatment options. If you would like to post a message for her I will share it with her as she truly needs everyone's help and support right now. I will keep the Board updated when there is more information to share, and until Katrina is able to personally post an update.
With special caring thoughts, concern, and healing wishes for Katrina, and continued Hope,
Bonni
