Thursday, November 25, 2010


Turkey, dressing, ham, Jill's potatoes, green beans, sweet potato souffle, corn souffle, cranberry sauce, Connie's pumpkin pie - great meal. Follow that up with a little football and a nice nap.  Great Thanksgiving.

Monday, November 22, 2010

Crizotinib - day 12

So far I have not had any significant negative side effects from the Crizotinib - 12 days so far. I am still getting brief, minor trails in my vision - very insignificant. On the good side, my dry cough from the cancer has reduced quite a bit. The cough had become very frequent during the last few weeks before the new med. Now, it is mostly limited to right after I eat/drink and just a few other minor occasions. I will take that as a sign that the Crizotinib is doing something good. I see Debb (Research RN) in two days. I assume she will do blood work and other test. Not sure that she will be able to determine the impact of the Crizotinib yet.

Sunday, November 14, 2010

Visual side effects

This morning I experienced a brief episode of visual side effects. When I woke up and sat up in bed, I experienced trails in my vision and ghosts in my peripheral vision. The trails are, basically, multiple repetitions.  The ghost was like if you filmed a flashlight in the dark with a camera using the bulb setting - meaning that you get this random etch-a-sketch in light. These are one type of side effect that is possible from the crizotinib. It was a very brief episode - gone in just a few seconds.

Friday, November 12, 2010

Crizotinib - start 11/11/10

Yesterday, I started the journey on crizotinib - the study drug that is very new. The routine is 250 mg in the AM and 250 mg in the PM.  This amounts to 2 large 100 mg pills and 1 50 mg pill twice each day.  The next time that I will really know about progress will be around 12/22 when I will have a CT.  I have a couple of appointments before then for labs, tests and to see Dr E.  But, the CT will be the real test of the benefit of the crizotinib.  Until then, my job is to take the drugs and watch for side effects.  I have anti-nausea meds in case I get nauseous.  Other than that, will have to deal with any other side effects as they come.  Dr E says that the typical side effects of crizotinib are normally less severe than I have dealt with from other chemos.  

Thursday, November 11, 2010

protocol of one

So it appears that I will not be the patient 83 in the study protocol as originally planned. Rather, I will be on a new study protocol and that protocol will have one patient - me.  Apparently, there is more than one way to skin a cat; and, Dr E found a different way. They went to Pfizer, the FDA and the IU Internal Review Board with this new protocal with one patient.  And, it was approved.  This process is why the final approval took so long.  So, I have my first dose tomorrow.  I had to get blood tests and a CT today.  I will get an EKG before taking the dose. Then I will get another EKG two hours after the dose. Debb the RN will also give me a schedule of visits, tests, doses and apparently diary-like entries that I must do to follow the protocol. As long as I have instructions, I can follow those instructions. So...I will embark on this journey of testing a new cutting edge lung cancer drug. 

Tuesday, November 9, 2010

Great News!!

I was notified today that I have finally been approved to start the study/test drug for my lung cancer.  This was a great finish to about 3 weeks of frustration just waiting for final approval. 

Apparently, some of the tests done previously are now "out of the window" - meaning that I need to have the tests again.  So...tomorrow I go in for blood and other tests and a new chest CT.  Per Debb (RN), they are trying to get me going on the drug on Thursday.  We'll see...  I have waited so long that I won't be surprised if they can't get me going until Friday or even Monday.

Most importantly, I am pretty sure that they now have all the necessary approvals. we go...