The Cancer Survivors Network (CSN) is a peer support community for cancer patients, survivors, caregivers, families, and friends! CSN is a safe place to connect with others who share your interests and experiences.

Thank you for being a part of the Cancer Survivor Network community. Survivors and caregivers like you have played a unique role in fostering an online environment that encourages connection among those needing support, community, and education. On May 28, the Network will be discontinued. More details are available here . If you have any questions, contact CSNSupportTeam@cancer.org. Thanks again for the support you’ve provided each other over the years. We remain committed to supporting you in other ways throughout your cancer journey.

Chloroma aka Extramedullary Leukemia aka Granulocytic Sarcoma

susancm
susancm CSN Member Posts: 3
in Leukemia #1

Wondering if anyone else has had experience with these? My mom currently has disease free marrow after a stem cell transplant for blast crisis CML in 2006, but has intractable chloromas that have taken over her right torso, and eroded through the skin. We have tried all kinds of treatment (local radiation, with and without hyperfractionation, Ara-C, G-CLAM = gscf + cladribine + ara-c + mitoxantrone), and for some reason, surgery was never presented as an option while the tumor was small and just in one rib. Now it's huge and invading ribs, lung, breast, shoulder... It's really frightening, and they are totally treatment resistant and inoperable. In my mom's case, these tumors also smell pretty bad and require a lot of care as the tumor has this open ulcer with lots of necrosis, oozing, and bleeding (with all the leaky blood vessels tumors make).

We have no idea what to expect as this progresses and it would be great to have some others to talk to about this. It is rare for chloromas to do this and is maybe more common in breast cancer? I seriously didn't know solid tumors could do this, let alone a leukemic tumor. :\ 

Like Care

Discussion Boards