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Visit the HCL Forum to connect with other people who have been affected by Hairy Cell Leukemia. This is a place to share stories and meet other people facing similar challenges related to Hairy Cell Leukemia.
December 2011
Welcome to the December 2011 HCL Mailbag. Take a look below at the questions answered by some of our Hairy Cell Leukemia experts from around the world, and be sure to submit your question(s) to be answered by our HCL experts as well!
My nephew was recently diagnosed with HCL. He is in his early 20's and everything I've read so far talks about a 10 year remission. What happens after the 10 years? Does it come back and have to be treated again? Does that buy him another 10 years?
Currently the longest data for patients treated initially with Cladribine shows that after 15 years 75 percent of individuals are still remaining in their initial remission. We do not know how long these initial remissions may last beyond that.
If there is a recurrence, we often see another remission, but often that remission may not last as long. However, there are a number of new drugs and combinations of drugs that are showing promise in the treatment of relapsed patients as well. Therefore we are hopeful that your nephew will do well.
I have just been diagnosed with Sweet's Syndrome with a fever for 18 days. I am on Prednisone, but the fevers have not gone away. Has anyone ever had this combination?
I have been treated twice for HCL, but this complicates further treatment. Cladribine is out for me because I had a life threatening reaction. The plan is to be treated with Pentostatin next. Any information would be appreciated, thanks.
Sweet's Syndrome does happen in association with cancer, although the majority of cases are without any underlying malignancy. Usually a biopsy of the skin confirms the diagnosis. In Sweet's, the skin lesions are infiltrated with neutrophils.
In most cases the disease can last for months, but it eventually goes away on its own. Prednisone can sometimes help. If there is a known underlying malignancy, then treating that underlying malignancy may control the symptoms of Sweet's.
We cannot give any specific recommendation regarding what should be done with your particular case. Your hematologist/oncologist is most prepared to make that decision since he/she has more specifics regarding your situation and has been involved with the treatment of your HCL.
I was treated with Cladribine from November 2-9, 2011. I have been fighting a rash for about 10 days now. My doctors do not believe it is related to my treatment due to the timing.
Considering your expertise, do you feel I should see an allergist and assume this is unrelated to my treatment?
This is a difficult question to answer without access to further information. The rash could well be due to other drugs you may be taking. Occasionally, the rashes from Cladribine can be delayed.
If you have no past history of rashes or allergies then we would be hesitant to assume that it has nothing to do with your treatment, especially when it seems that the rash appeared only about 3 weeks after your treatment. We recommend that you consult further with your doctor who will know your current situation best.
If your doctor would like to consult with someone further, have him/her contact one of our experts mentioned in our Centers of Excellence section on this website.
My 65 year old husband was diagnosed with HCL seven years ago. He received a seven day treatment of Cladribine and appeared to be in remission up to about a year ago.
His white blood cell count has been steadily dropping since then and is now at 2.1. His red blood cell count is also slightly lower. At what point should we consider having him treated again?
Treatment at relapse is generally given for an absolute neutrophil count less than 1,000, a hemoglobin less than 10, or platelets that are less than 100,000.