Saturday, April 12, 2014

Lots more info .... no decision yet

We had a change in plans this week and got a call late on Thursday from my doctor's office saying they wanted me to go up to Columbus to OSU to meet with the hairy cell leukemia specialist. We literally spent all day yesterday there, and came back wiped out, but with a better understanding of the treatment options.

The doctor in Columbus is a sage, older doctor who has studied hairy cell leukemia (HCL) for most of his career. Given how rare this type of leukemia is he is one of 3-4 doctors who have seen lots of cases. He is very well networked too with the other top doctors. We determined yesterday that given how short my remission was following my first treatment (which is also rare) I qualify for most of the clinical trials out there.

One drug in trial  is more of an experimental drug that has a side effect of skin cancer so that one is at the bottom of our list, but there are a couple others that are interesting. We are leaning towards the other traditional chemo treatment, pentostatin, to start with for 3-6 months followed by a target treatment drug, rituximab, to give the HCL the old one, two punch. There is a trial with these 2 drugs related to the sequencing of them that I may do, or may just follow the protocol. This type of treatment would be outpatient here in Cincinnati (unless I get a bad infection or get a fever then I am back in the hospital) once every 2 weeks for 3-6 months. It comes with many of the lovely standard chemo side effects (nausea, hair thinning/loss, extreme fatigue). On the hair thing, I wish I knew if it would fall out now and then I'd just go get a sassy short cut to start from ... so am debating this and may be rocking a new "do" next time you see me!

The other drug in trial, Moxetumomab Pasudotox, is like a stealth bomber and targets a protein in HCL and goes after it and kills it.  It does not have the side effects of chemo (hair loss, sever immune suppression) but it has other side effects and (I think) would require me to get treated out of NIH in Bethesda.

We meet with my doctor Monday morning to talk options and make a decision. The doctor at OSU said I did not need to start chemo this weekend but he would not wait and would start this week or next. So no decision on the course of treatment yet but should hopefully know the plan on Monday and when the "fun" will begin.

Thanks to everyone for all of your support and offers for help!! We will keep you posted.

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