Wednesday, May 4, 2016

Bethesda Bound

It has been a long time since I have posted anything on this blog. Over the last year and a half we have moved to a new city. The girls have had a great start-up, and a smooth transition to a new school and have both made great friends. Chad and I have started new jobs, and gotten settled. Unfortunately, in all of this change, I have not been able to shake my cancer.

For those of you who are new to my cancer saga, the cliff notes version is… I was diagnosed in Oct 2012 and my bone marrow was 90% cancerous and I got to spend a month inpatient at University of Cincinnati hospital getting chemo. We thought we had gotten it all (testing showed <1%), but only 18 months later my bone marrow was back to 80% cancerous. In May 2014, round 2 of chemo started with a month of outpatient treatment followed by a week in patient. After that testing showed 0% cancer. Clearly we did not get it all because it is back.

Now I am bound for Bethesda and the National Institute of Health (NIH) to be in a Phase 3 clinical trial for moxetumomab. It is a trial focused on people with chemo-resistant hairy cell leukemia (=me). The results have been very good. It is not a chemo drug, but rather is a monoclonal antibody. This is basically a combination of a poison (have to have that to kill the chemo) and a modified mouse antibody. The antibody is naturally attracted to a protein found on the surface of hairy cell leukemia (HCL) called CD22. So basically the antibody is attracted to the cancer like a magnet and then the poison kills it. It is much more targeted treatment than chemo, which wipes out the good and the bad.

While it completely stinks that my cancer has raged back, the good news is that it looks like I have gotten in this trial where I should have a much better chance of having a more durable remission.
I fly to Bethesda on Sunday. I have to arrive at NIH very early on Monday morning for a full day of poking and prodding. The fun filled lineup includes all the basics someone with HCL expects – lots of blood work, a bone marrow biopsy, a couple CT scans – and some fun extras (e.g., eye exam, non-stress test, etc.). I am sure to be sore and tired on Tuesday. Then assuming nothing comes up in the testing that disqualifies me for the trial, I start treatment inpatient at NIH on Thursday.

I’ll have a PICC line inserted each time treatment starts for the infusions, but the infusions themselves will be shorter than in past regimes with infusions only on Days 1, 3 and 5, versus around the clock. In between, you are flooded with fluids (literally – online people have told me to expect to gain 20 pounds in water weight each cycle!! The men say it comes off quickly, women not so much).
Assuming my kidneys do not give out on me, then I get to look forward to about 10 days in patient at NIH once month for six months. Luckily my parents are close by, as well as many good friends, who have already generously offered to bring me non-hospital food, and come hang out with me.

On the home front, the girls are busy with school and track. I am hoping we can use the next 6 months as an opportunity to shift the seam on laundry and cooking dinner!! We know it is going to be a long 6 months and will get harder the more cycles we go through. Right now though everyone is pretty positive. We know the drill and no one is anxious.

I will keep you posted on how next week goes. Keep your fingers crossed for me that nothing comes up that DQs me from the trial. Doctors are all aligned I need treatment again, and if for some reason I am not a match there is not another good non-chemo alternative out there. All the doctors agree too that 3 rounds of chemo in 4 years is not a good thing either…   

1 comment:

  1. Hi Beth surfing internet and found your blog. How did your trx go and hoping you are in remision!
    I was diagnosed with HCL last year and in remission.