I love blogspot, but I work in a political environment and prefer to keep the details of my treatment a little less public. But we do actually keep a blog of our experiences, and I update it several times a week. You can find our blog on www.carepages.com. You'll have to sign in, in order to read it. You'll also be asked to enter the name of the carepage. The name of ours is:
LauraKukucka
It's all one word, and it's case-sensitive. The blog chronicles my GastroIntestinal Stromal Tumor (GIST), as well as my husband's Castleman's Disease and now, possibly, Lymphoma. (Yeah, you read that right - we both have the "big C"!! Even more than that, we both have chronic cancers...what are the odds?) But we're very lucky in that we're both in relatively good health overall...it could be a whole lot worse.
So anyway, stop by carepages & check us out!
LK
Friday, December 7, 2007
Wednesday, December 5, 2007
Looking for other Castleman's Disease patients
Hello out there...
My husband, age 34, was dx with Castleman's Disease (hyaline-vascular) in 2003, right after his 30th birthday. He had a single 6 cm pelvic tumor, which was surgically removed. Under some poor medical advice, he did not have a follow-up CT until a year later, and it showed that the tumor had returned, and was about 3cm. He saw Dr VanRhee at UAMS, who suggested Rituxan treatment. He went through 4 cycles, and the tumor didn't budge. So they couldn't figure out WHAT to do next - some said surgery, some said radiation, some just plain didn't know. So they took the "watch and wait" approach.
Now his CT & PET scans are showing enlarged lymph nodes & increased PET activity in the chest and lower abdomen. His oncologist here in Columbus does not yet know whether this is the Castleman's proliferating, or if it's a form of Lymphoma (most likely Follicular Lymphoma).
I am disappointed at the lack of information out there about this disease, and I'm hoping to find other people whose lives have been touched by it. I have a rare form of cancer called GastroIntestinal Stromal Tumor (GIST), and I'm lucky enough to have access to a wonderful online support community where we share information, compare stories, and just vent. I'd love to see something like that take form for Castlemans as well. So if this disease has touched your life, PLEASE contact me through this blog & share your story.
Thanks!
My husband, age 34, was dx with Castleman's Disease (hyaline-vascular) in 2003, right after his 30th birthday. He had a single 6 cm pelvic tumor, which was surgically removed. Under some poor medical advice, he did not have a follow-up CT until a year later, and it showed that the tumor had returned, and was about 3cm. He saw Dr VanRhee at UAMS, who suggested Rituxan treatment. He went through 4 cycles, and the tumor didn't budge. So they couldn't figure out WHAT to do next - some said surgery, some said radiation, some just plain didn't know. So they took the "watch and wait" approach.
Now his CT & PET scans are showing enlarged lymph nodes & increased PET activity in the chest and lower abdomen. His oncologist here in Columbus does not yet know whether this is the Castleman's proliferating, or if it's a form of Lymphoma (most likely Follicular Lymphoma).
I am disappointed at the lack of information out there about this disease, and I'm hoping to find other people whose lives have been touched by it. I have a rare form of cancer called GastroIntestinal Stromal Tumor (GIST), and I'm lucky enough to have access to a wonderful online support community where we share information, compare stories, and just vent. I'd love to see something like that take form for Castlemans as well. So if this disease has touched your life, PLEASE contact me through this blog & share your story.
Thanks!
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