Milestones in my cancer

This week, April 26 is the fourth anniversary of my actual lung cancer diagnoses.  Next week, May 4, is the aniversary of my first chemotherapy treatment. I feel very lucky to still be around to fight the battle with cancer.

CT & tests April 27

CT and bloodwork yesterday.  Saw Dr Einhorn.  He indicated that my lung cancer is stable.  I received the following from the Research RN today.  "Followup that radiology agreed with Dr E – there has been further shrinkage of abdominal fluid/omental disease.  Labs were stable…." and "The lung ct was spot on stable…the omentum was ½ cm smaller…the fluid was eyeballed smaller (difficult to measure)"  Apparently, the omentum is the area in my abdomen where they have previously spotted an unidentified mass that has reduced during the crizotinib treatment.  So...test appear to be good news.

April 6 - on since Nov 11

5 three week cycles so far,  Even cycles I get scans, bloodtests,exam.  Odd cycles I get bloodtests and exam. Discussions about breathing, coughing, pain, appetite, visual trails in my sight, and any oddities I have been feeling.  This week nothing really new. Dr E is happy that I have managed to keep some of the weight that I gained on the cruise.  My appetite has been good. He is also happy that my liver function has improved.  It had been getting slightly worse during recent weeks. With improvement this week, no need to consider adjusting the criotinib dosage.

My physical condition puts some limits on what we can handle. But we are making the most of what we can.  During upcoming weeks/months, we will visit our son and his wife to see their new home, we will make a trip to Joliet to see family, we'll try to get over to see Julie, we will attend a family wedding on Dominica and we will visit NY and do a cruise of New England and Canada.

Our challenge is to keep ourselves well enough to handle all the travel. Good Luck to us.

March 16 CT

Got my regular CT yesterday - along with bloodtests and saw Dr E. He indicated that lung tumor reduction has continued - I hope to get details next week from Debb. No new side effects. Apparently, the crizotinib is effecting my liver slightly; but, Dr E said he will just watch it for now. If necessary, in the future, he will adjust the crizotinib dosage. He examined my right side since I have been having a dull pain; but, it is probably still from the pleurodisis a while back. Nothing on the CT and Dr E's exam doesn't show anything. He commented that "the cruise ship food must have agreed with me" and indicated that I had gained 7 lbs. Clearly, the crizotinib has not reduced my appetite. I'm betting that will go away now that I am back eating my normal diet at home.

ENT Feb 25

Saw ENT (ear, nose, throat doc) today. He checked ear tubes. Rt was plugged & he removed it. I had been having fluid in the rt ear. He recommended I use "ear planes" (special plugs) when I fly tomorrow to help level out pressure. Hope it works. If no issues, I go back in 6 months.

Feb 23 - mid-cycle

Saw Dr E for my mid-cycle review. All is well.  I have lost 3-4 lbs in the past few wks; but I changed diet to more high fiber food. He is OK with it. Bloodwork is good. No new side effects. Next CT in 3 wks.

Brain - Feb 17

Saw my radiation oncologist Thursday. He reviewed my latest MRI. Said that all lesions are stable. The lesions in my brain have been stable for 2 years. He did all the usual checks for neurological side effects. Nothing new. I see an ENT next week to evaluate fluid that I have had recently in my right ear.

Results from Feb 3 tests

Great news from the tests last week. Reduction of lung cancer now a total 68%. Feeling pretty good. Blood pressure is still running low - but getting better. Pulse is 45 and blood oxygen level is 91%.

Early Feb 2011

Despite the horrible weather, managed to get tests and see Dr E this week. Lung CT is stable with a small additional shrinkage. Debb will get back with comp info. No new side effects from the Crizotinib. MRI appears stable; but, I see Dr H later in Feb for interpretation of MRI. Not experiencing neurological side effects. Bloodwork is all normal except for a slight issue with liver function. Will simply monitor for now. Blood pressure is running low (95/52) and has trended down at recent visits. Dr E asked me to cut dosage of BP med and monitor BP regularly. Last couple days in 118/60 range with pulse 46-49. Not experiencing side effects from the BP at this time.

documented response

I keep re-reading the email from Debb (RN).  "The documented response to therapy is 58% reduction. This is a low ball as there were some shrinkage/disappearance of lesions that couldn't be used for documentation..."  This would certainly seem to indicate the the crizotinib is doing a lot of good. I hadn't even thought about such a high level of reduction.

Amazing CT

I had great news from the CT (chest & abdomen) today. Significant tumor reduction. Two undefined spots that were found in my abdomen during pre-crisotinib testing are no longer visible. Dr E said that about 75% of the tumors were reduced. Apparently, I will get more detailed comparisons next week where they will compare various tumor sizes pre and post crisotinib. Treatment with crizotinib continues.

Waiting

Well...still waiting for 12/22 when I get a chest CT to determine if the crizotinib is helping. I still sense that it is working due to the real reduction in my coughing. But, I don't have any other gauge. Certainly, I have been a little fatigued, I have been having a little bit of edema (swelling) in my ankles, and I experience the vision effects (mostly trails). But, those don't really indicate much. Appetite has been pretty good and I have put on a couple pounds in the last few weeks. Happy that I haven't really had any significant side effects from the crizotinib. Will be very happy if it stays that way.

Status quo

About half-way through the second cycle of crizotinib. Pretty much just status quo. No new side effects. Nothing new to measure progress. A little more than a week until I get a CT and will have more definitive information regarding the progress of the test/study drug.

End of 1st cycle

Apparently, crizotinib is given in 21-day cycles and I have just finished the 1st cycle. So...I went in today for blood draw and an EKG first thing this morning. Then, saw Dr Einhorn. We discussed my status and side effects so far - basically, very minor stuff. Dr E signed off on the paperwork for me to start the 2nd cycle - which I started today. After that, I had lunch at the Bistro and had to wait 2 hours from the time I took the pills for another EKG and blood draw. At this time, everything looks good. Won't really know anything until 12/22 when I go back for the tests and get a CT.

It is different being in a study because I don't just keep taking the pills. I had to turn in the Rx bottles and remaining pills (along with my medication diary) and got new Rx bottles/pills for the next cycle. I guess they do that as a double-check to confirm the number of pills vs what I put on the diary. I did forget one evening dose so they would be able to see that when they count the remaining pills.