Treatment Mistake

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I was diagnosed with HCL in June of 1999. I went through the treatment that July. I had the 24 hour pump and the treatment was fairly simple. Three months later my counts were not improving. The Doctor was wondering why I was not responding and in researching my case he found out that I had been underdosed. I was only given 1/7 of my prescribed dose.
To make a long story short, I was very upset. The doctor told me that it was a "nursing error". He then offered to treat me again for free. l left his office that day and did not return.

I wrote to Dr. Golde at Sloan and told him what had happened and he wanted to see me. He had never had someone with HCL underdosed and was interested to see how I would respond to a second treatment after being underdosed. Fortunately, I responded to the correct dose. Interestingly enough, some months after I was treated Dr. Golde had a patient come to him who had undergone treatment and did not respond. Dr. Golde actually told me he thought they were going to lose him. Because Dr Golde had treated me, he decided to check on the dose the patient was given at his hospital down south somewhere. As it turned out this patient was also underdosed and when he was given the correct dose he responded to treatment. I thought I would share this story as it might help someone else in the future. I was told that there is no way to know if my treatment was compromised by the underdosing. Only time will tell.

Thank you for being there for all of us. If I can be of any help or if you would like more details regarding my case please feel free to contact me.