Sunday, October 31, 2010

still waiting

Getting final approval for the study is taking longer than I would like. Dr E referred to it as "bureaucracy". They have completed an Emergency Investigational New Drug application. Now waiting for review by the IRB - I assume that is an internal review board. Apparently, this IRB meets Nov 9. looks like we will have an answer then. The drug has been in the news and seems to now have a name - crizotinib.  I don't wait well.  But...that's my only option.

Friday, October 22, 2010


Well...the lab came back with an ALK mutation negative - which would mean that I wouldn't qualify for the study.  However, we have previously had a test that showed positive.  So...DE is asking them to retest in light of the fact that we had a previous positive test.  All I can do now is wait.

Tuesday, October 19, 2010

Long day of tests

Today was a long day of tests to confirm qualification for the study of a new lung cancer drug being tested.  I have been previously approved by IU and the NIH.  However, now the drug maker, Pfizer, must agree.  I already had a chest CT last week (which indicated that my lung cancer is active again) and a brain MRI (which confirmed that I have no new brain lesions and no existing lesion growth).  Today, I had an abdomen/pelvis CT, a bone scan, an eye exam, blood tests, and an EKG.  I also met with the Research Nurse to discuss consent and process for the study.  If all tests are OK, I may be able to start taking the drug Thursday or Friday.  The ophthalmologist also determined that I have some type of irritation in my right eye that has caused a little edema (swelling) of the retina - which explains the red I have had in the right eye occasionally.  She will treat it with some prescription drops.

Thursday, October 14, 2010

Life is odd

This week has been filled with fabulous Fall days.  Temps in the 60s and low 70s.  The leaves are turning beautiful colors - red, yellow, brown, a Fall rainbow of colors.  It has been an awesome drive to the office and the hospital.  And, there's the rub.  Lots of days at the hospital.  Days for Jill to go to her kidney transplant clinics.  (By the way, she is doing well.  She is planning to drive herself to her clinic tomorrow.)  Days for me to get a CT and and MRI.  One day, Tuesday, October 13, to learn that my lung cancer has once again become active.  Life can be such a contradiction.  Beautiful and harsh at the same time. 

Next week I go through a batch of tests to confirm that I qualify for this special no-name drug that will battle with my lung cancer.  Chest CT, Brain MRI, radioactive stuff injected to do a bone scan, CT on abdomen and hips, blood tests, EKG, eye exam and who knows what else. I will be glowing by Wednesday. But, hopefully, they will determine that I can start in the study of PF-02341066. 

I admit that I am a bit apprehensive.  I had hoped that this remission would continue for a few more months and would get us past the holidays.  That was not to be.  I am anxious to get going with this new drug.  I want to see if it lives up to its supposed success.  I'm the kind of person who likes to just jump into something, getting going, find out the side effects / deal with them.  I think that is the only way to really make the most of this kind of new drug.  So, PF-02341066 - let's get going.

Wednesday, October 13, 2010

10/13 - on to the next treatment

A CT scan this morning confirmed that my lung cancer has become active once again. So...I got 10 months from this last remission.  After discussing this with Dr E, I met with a Research Nurse to go over what needs to be done to start me on the new test chemo.  Apparently, the drug is made by Pfizer and they need to also confirm my qualification for the drug - PF-02341066.  I guess it doesn't even have a name yet.  They now have 83 patients in the study.  Next Tuesday, I will have a long day full of various tests and exams.  DE (the Research Nurse) will contact me with the schedule for the day.

I've been reading lots of paperwork about the study - various "informed consent" and disclaimer type stuff.  It also includes some details about things I will need to do - follow up tests, etc.

I am sure glad that Jill got through her kidney transplant and is well on her recovery.  It could have been pretty complicated otherwise.  We will still need to coordinate her follow ups with what I need to do. So...I guess we move on to the next adventure.