Normal and Unremarkable

I have never been so happy to hear that I am “normal and unremarkable;” in fact, I have never been called “normal and unremarkable” in my lifetime! LOL.

I feel a little banged up from being poked and prodded at the National Institutes of Health (NIH) in Bethesda, Maryland, but I am fine. My marathon medical tests for chronic lymphocytic leukemia (CLL) began at 7:30 am EST. My husband Carl was a little concerned because my blood tests (17 test tubes) seemed to take more than twice as long as the other patients. He had one of those worried faces in the lobby, but was relieved when I told him the phlebotomist and I were having an animated conversation about the USA Women's Soccer Team.

The results of my blood work were “normal.” My white blood count is 7.51k, and the normal range is 3.98-10.04k. My absolute lymphocyte count is 1.54k. The normal range is 1.18-3.74k. My platelets were a little low (154), but the doctor said that as long as it is over 100 there is no concern. The normal range is 173-369.

Then on to the CT scan. I unfortunately have crooked veins and am a hard stick. I am a little black and blue from multiple sticks, but managed to get through the scan easily. Last time one of the women in the front desk added Chrystal grape flavor to the liquid concoction and it was easier to drink. This time it tasted like burping up old sausages to me.

I have a few lymph nodes in my underarm that are small and not concerning. All my organs of my body are “unremarkable,” which is very good news. No evidence of developing soft tissue mass, organometallic or adenopathy.

Then off to the bone marrow biopsy. I was trying to remember how many I have had. I think this is my ninth one. The sting of the initial local anesthetic (Linocane) is usually the only discomfort I feel; that is, if you have an experienced person doing the biopsy.

I had one bad experience at another medical facility. Before the nurse went in for a third time, I told her that if she was going in one more time that she needed to make herself useful and suck up some of my fat while she was at it. It took her a while to compose herself.

The anxiety of the biopsy is usually the biggest issue with most patients. Some of my blood brothers and sisters have requested Vicodin or a comparable pain reliever before the procedure to take the edge off. I requested a glass of red wine and some dark chocolate. NIH did not accommodate. They said this was a government agency and no alcohol allowed on the premises. LOL.

Most bone marrow biopsies take 15 minutes. This time mine took one hour; apparently, the needle kept slipping on my left hip bone. The procedure is similar to drilling a screw in the wall through a stud. You make a small hole with a nail first. Then you use that hole to screw in the screw. It took several tries to drill a hole that the "screw" could find. The attending nurse was trying to converse with me to distract me. I told her that I just wanted to take a nap, so I did my Lamaze breathing and tried to sleep through it. I was the sixth BMB for the PA that day. I was a little sore afterwards, but it doesn't last long. Carl brought me red wine and chocolate back at the hotel. That was something I really appreciated. He even brought me an Italian dinner that evening.

Ibrutinib (IMBRUVICA) seems to be working well for me. The results of my bone marrow will come in about three weeks. The medical team is optimistic that test result should verify my continued clinical complete remission.

We talked to the medical team about several upcoming clinical trials. A combination of ACP-196 (a kinase inhibitor) and a monoclonal antibody checkpoint inhibitor is being tested. Nivolumab, a monoclonal antibody (just FDA approved for melanoma), is being tested on CLL/SLL. Dr. Mohammed Farooqui said that chimeric antigen receptors (CAR-T) trials have shown more success with ALL than CLL/SLL.¹ I was hoping that would be my cure.

Of the 32 patients in the arm of the trial with 17p deletion (the arm I am a participant in), only two have progressed with the cancer and taken off the drug. The longest patient in the NIH trial on ibrutinib has been on it 3 1/2 years. I have been on the drug for three years.

No one knows how long ibrutinib (trade name IMBRUVICA®) will keep me in complete remission. It is working well for me now, and I am grateful for that. But it is not intended to be a cure. At some point I will relapse, so I need a Plan B. FDA has approved of a combo of rituximab (trade name RITUXAN®) and idelalisib (trade name Zydelig®). This can be administered by my local oncologist and will act as a bridge until the medical team at NIH can find another clinical trial for me in the United States, if there is not one at NIH in which I qualify. NIH has working relationships with a number of places in the United States that have clinical trials.

So until then I will live each day and surround myself with the people who make my life beautiful.

1 http://www.uphs.upenn.edu/news/News_Releases/2014/10/ctl019/