May 18

Saw Dr E today. No CT this visit. Everything looks fine. No new side effects.

Started eye drops in right eye today. I expect it will be at least a few days before I see any change.

Eyes

Turns out the retinal hemorrhages are late effects from the full head brain radiation 2 years ago. Dr Phan said this is common. Lots of funky pictures of the retina + with a dye. Apparently, these normally clear up on their own. But she will watch them frequently. She will call me after she studies the pictures closely. In any case, we're headed to NC to see the kids.

Talked to Dr Phan while in NC. She is sending eye drops to help the right eye.

Right eye issue

For a couple weeks have had distorted vision in my right eye. Eye doc told me today that I have a small hemorrhage on the retina. See a retina specialist next week.

4 year survivor

Hurray!! It has now been 4 years since my first chemo treatment for lung cancer on May 4, 2007. I remember that we were nervous and apprehensive when I was diagnosed on April 26, 2007. But, we faced it and battled as we always have. I've had obvious ups and downs. Some pretty significant side effects from 7 different kinds of chemo and high levels of radiation on my brain.

Loss of energy, significant fatigue. I've been pitiful at times. Complete loss of appetite - it really sucked to have no appetite. Food had no taste. At one time, I lost 75 lbs in about a year. I was already balding; but, with chemo and radiation, I lost what little hair I still had. It is now just a little bit of baby fuzz. Several multi-day hospital stays - including one when they did a procedure to remove fluid build-up in my lungs - they removed a total of 1 1/2 gallons. Experienced a pulmonary embolism (blood clot in the lung) in the middle of all this. Radiation caused cataracts and needed surgery in both eyes. Tethered to oxygen for months. Giving myself shots to thin my blood.

Per the American Cancer Society, 75% of those diagnosed with Stage IV Lung Cancer die within 2 years. But, I am still here! I have had a couple periods of remission - one 18 months and one 9 months. Despite the challenges of the past 4 years, I look forward to being around for quite a bit more time.

We have continued find ways to cruise to many parts of the world. We have been to so many places in the last 4 years - Denmark, Iceland, Norway, Greenland, the Caribbean, Alaska, Hawaii, Spain, Italy, Greece, Turkey, Galapogas, Ecuador, Columbia, Costa Rica, Panama, Belize, Morocco, Monaco, France, Portugal, Croatia, Butchart Gardens in British Columbia - Canada, and so many other places. Sometimes I had to drag around a heavy oxygen machine; but, we managed anyway.

Currently, I am on a study/test drug that has been a miracle. In about 6 months, my lung tumor mass has reduced almost 70% and I have not experienced any significant negative side effects from the crizotinib.

As I reflect on the past 4 years, I have been a very lucky person.

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.