HAPPY DANCE TIME AGAIN

Boy, did I have a wonderful trip to National Institutes of Health in spite of the scare that my flight could have been cancelled because of Hurricane Sandy. George and Matt (my PCI brothers), who began the clinical trial on the same day as me, both made it to NIH, and that made me very happy. I had dinner with my cousin Sammy, who works at NASA, had two non-stop flights, sat in the window seat each flight, read half of my book, slept on the plane on my way home, chatted and laughed with my wonderful OP7 (Outpatient Floor 7) friends, had my Chi Tea latte non-fat vente… Who could ask for anything more?

I delivered a copy of the letter I sent to President Obama about NIH and the request for continued funding to the NIH research staff. This is the way medical care should be done. I am forever grateful and I cannot say it enough.

One issue that needed to be addressed was the Hurricane Sandy and flight cancellation situation. We discussed this with the research nurse and found out that according to the drug company, Ibrutinib cannot be shipped to us, if a disaster happens again. It must be picked up in person. This is not very logical to me. If another disaster happens, it seems like we should be able to get local outpatient blood work that could be expedited and faxed to NIH. Then if our neutrophils are high enough, we should qualify for the next supply of the drug. NIH is talking with the drug company again about this. Sounds like the drug company needs a Plan B.

In a prior post I mentioned that as of October 4, 2012 the clinical trial at National Institutes of Health in Bethesda, Maryland (NCT01500733) has been suspended and is currently under review. I emailed those who asked what this implies. I will repeat it again. What this means is that existing participants are not affected. New participants waiting to start the drug may have a little delay. This is normal procedure in reviewing a clinical trial at NIH.

THE GOOD NEWS!

My white blood cell count has continued to go down from 84,500 to 68,170 (another 16,330). I am now beginning Cycle 5 of Ibrutinib. Everything is headed in the right direction. Everyone I have talked to at the trial is responding well or at least maintaining. We are the happy people sitting in the OP7 lobby.

SIDE EFFECTS FOR CYCLE 4

These are my side effects for Cycle 4, which may or may not have been caused by the drug:

• At the beginning of Cycle 4 (October 7) I returned home from a grueling 7½ hour flight from Baltimore. My left side, my left waist and my left back were so sore it almost took my breath away. It felt like a constant cramp that lasted three days. I had difficulty sleeping for a few nights and started getting concerned that I was bleeding internally or something was wrong with my kidney, and of course, none of that was true. It was my muscles that were hurting – perhaps from my cramped position on the plane ride home. I treated myself to a one-hour massage from an oncology nurse at the hospital. I have been fine since.

• About five days into Cycle 4 I ate a couple tangerines and a tomato (apparently too much acid) and the inside of my mouth paid for it. I got two blisters on the bottom of my tongue and the inside of my entire mouth (including inside lips) is very tender and sensitive. I could hardly brush my teeth without it feeling like my gums were bleeding (which they did not). This lasted about five days.

• Three-fourths of the way through Cycle 4 I noticed a red neck rash. Part of it was shaped like a perfect triangle. I also have Rosacea, so perhaps it was that. It was gone by the second day.

• Had a running nose and sneezing that lasted two days.

• At the end of Cycle 4 after arriving in hotel, I noticed the top of my left hand was covered with little numerous tiny pinhead-sized purple or red spots, which are flush with the surface of the skin. These are called Petechiae and are tiny hemorrhages within the dermal or submucosal layers. They went away after two days.

Believe me, I can live with these minor irritations.

BLOOD WORK

• I am still without monocytes, eosinophils, and basophils, but that seems par for the course.

• My LDH (lactate dehydrogenase) is 250, which is higher than normal, which is (113-226).

HOPE

This miracle drug -- Ibrutinib – has given all of us hope. So much research in targeted therapy is underway. The next step is to get access to the drug after the trial is over.