Critical importance of having COMPLETE scans

[Bonni Hess]

Dear ASPS Pazopanib patients and others,
I am re-posting this re-vised important message from the Guestbook topic in case it has not been read by you there.

Dear ASPS Community Friends,
I follow a young woman with ASPS through her Facebook and Caring Bridge site who unfortunately does not participate on this Board. She has been participating in a Pazopanib/Verinostat Clinical Trial at MD Anderson since October 2011 which has provided her with disease stability and some tumor shrinkage for the past 20 months. However, according to her recent May 14th Caring Bridge update, she has heartbreakingly now been diagnosed with four one centimeter brain mets after experiencing headaches for a week. She was scheduled to undergo targeted radiation (it was not specified in the update whether it was Gamma Knife or some other type of radiosurgery) for the brain mets last week, but there have not been any further updates thus far regarding the situation. It is very concerning and upsetting to me that, despite monthly trips to MD Anderson for Clinical Trial monitoring, her brain mets were not diagnosed until they became symptomatic, and sadly possibly too large to have a successful response to Gamma Knife since, based on our personal experience and knowledge, one centimeter is at the top of the size limit for Gamma Knife to be successful in destroying ASPS brain mets.This unfortunate situation illustrates the critical importance of all ASPS patients periodically having COMPLETE scans including chest/abdominal/pelvic CT scans at least every six months, and brain and spinal MRI's and full body bone scans at least once a year. Clinical Trial monitoring usually only includes scans of the targeted lesions so other areas of the body are not scanned and followed through the Clinical Trial. This was the case with Brittany so, because of her history of brain and bone mets, and due to our knowledge that ASPS mets can and often do show up in other areas of the body even if the chest CT's or chest/abdominal/pelvic CT's show no new tumors or growth, we schedule her for brain and spinal MRI's in Seattle every three months and annual bone scans. Inexplicably, and I feel, inexcusably many oncologists erroneously only monitor this disease through chest CT scans unless/until the lung mets increase in size and/or number, or the patient becomes symptomatic which is sadly then sometimes too late for resection, ablation, or successful radiosurgery treatment of the tumor. If you are participating in a Clinical Trial or taking a drug where only targeted lesions are being scanned and followed, I urge you to also schedule regular monitoring scans with your personal oncologist of the other areas of your body to ensure that mets don't go undiagnosed until they become symptomatic as has now heartbreakingly occurred with the Pazopanib/Verinostat Clinical Trial patient discussed in this entry. This unpredictable disease requires vigilant monitoring and a very proactive approach by patients, their family members, and the doctors. Please don't naiively assume that this disease won't metastasize to other areas just because it appears stable in the lungs, and don't assume that the doctors will order adequate scans. Unfortunately, neither of these things are always the case, and as a result new mets too often needlessly go undiagnosed and untreated until it is too late.
With special caring thoughts and continued Hope,
Bonni
Senior Member

Posts: 772
Joined: Tue Aug 15, 2006 6:32 am
Location: Sammamish, WA USA
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