my dad was diagnosed with HCL in 2007. He has had his spleen removed, been through Chemo 3x and the longest time in remission was 9 months. today the dr.'s said that it is back and his pancreas and kidneys have a mass on them. more tests to come tomorrow and friday - just wondering if there is anyone out there that has had the same process of events - i.e. minimal remission times, spleen removal... since HCL is so rare there is not a lot of info out there. my dad is being treated at the mayo clinic so he does have decent doctors, but they say that his is agressive and they do not have a lot of info regarding the prognosis....help?
I am sorry to hear that your father has had such an unusually difficult time of things with his HCL. Does he have the variant form of HCL?
I have been in remission from HCL since 2007 when I was first diagnosed and treated with Cladribine. Has he tried to get into any clinical trials? Does the oncologist at the Mayo Clinic who treated him have experience treating HCL in other patients? When was his spleen removed? Has he contacted any of the experts in the field of treating HCL such as Dr. Kreitman at the NIH, or Dr. Saven at Scripps in San Diego? What type of chemotherapy has he had? Have they determined what the mass on his kidneys and Pancreas are? How old is your father?
Vince
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thanks so much for the info i answered your questions below...
Quote:
Originally Posted by HaleandHearty
Hi Jen,
I am sorry to hear that your father has had such an unusually difficult time of things with his HCL. Does he have the variant form of HCL?
I have been in remission from HCL since 2007 when I was first diagnosed and treated with Cladribine. M dad was treated with the same on the first go round. Has he tried to get into any clinical trials?no, how would we go about that? Does the oncologist at the Mayo Clinic who treated him have experience treating HCL in other patients?not that i am aware of. When was his spleen removed?2008 Has he contacted any of the experts in the field of treating HCL such as Dr. Kreitman at the NIH, or Dr. Saven at Scripps in San Diego?no, how would i go about getting in touch with those dr.'s if we live in mn.? What type of chemotherapy has he had?not entirely sure, but this go round which starts in may will be a 4 month cycle with three different drugs. last time it was two drugs. i will find out exactly which ones. Have they determined what the mass on his kidneys and Pancreas are?they said the pancreas is hc and he just had his appointment today regarding the kidney. they do not think it has anything to do with the hcl, but not sure exactly what it is. How old is your father?he will be 70 in july
my dad was diagnosed with hcl in april 2007. he was treated with Cladribine at that time. he was in remission until march 2008, at that time he had his spleen removed. at the time of removal it was 7 pounds and full of hc. he was treated with pentostatin and rituxin after the removal. in july 2008 he got a huge buldge on his jaw/neck area. dr.'s removed lymph nodes at the site as well as down his neck. again treated with pentostatin/rituxin. in remission until march of 2011. hcl back as of today. there is now a mass/tumor on his kindey. dr. is going to do tests on that next week to see if they can see if it is hc or something different. bmb says as of last week, hcl in bone marrow is 90%. going to start chemo of pentostatin, rituxin and cyclophosphamide. he will be 70 in july, has had cancers (prostate, skin) in the past and is being treated at the mayo clinc. i am scared for him as i cannot find a lot of info on hcl, the prognosis and his level of the disease.
