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.  So...it 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.

Waiting

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.

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.

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.

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. 

hurray

Well...FB friends know that yesterday was my 36th Wedding Anniversary.  Jill and I have had a great life.  We knew each other in high school and went to the same college - where we became good friends.  It's a great thing to be married to your best friend.

She has had her own serious health issues.  We have been lucky that we have taken turns being in tough shape.  I was scheduled to see Dr E (my oncologist) today and she told me to tell him that it isn't "my turn" right now.  I did tell him that and he delivered great news.  I continue to be in remission!! 

He feels that I might expect to have a good run of time coming.  Whenever my current remission ends (hopefully, quite a while from now), I will go on the NIH test chemo which is a "specialty" chemo specifically targeted for a somewhat rare gene which I have.  He said that the NIH has had extremely good success with this drug; and, it apparently hasn't been causing side effects.  He thinks it is possible that I may have a couple years before it will be necessary to figure out a next treatment.

Nothing is ever guaranteed when it comes to cancer.  But, it sure is good to think that I may be feeling OK for a while. 

Annual physical

Saw Dr F today for my annual physical. BP (108/70) and Pulse (60) - very good. Cholesterol (total 127) - excellent. Kidney & liver functions - normal. No diabetes. Prostate - good. Basically, I am in excellent health other than cancer. How lucky is that?

Fruit

I love when lots of fruits are in season.  Have been getting blueberries every Saturday at the Farmer's Market.  Blueberries every morning in my Cheerios - until they run out on Wedn or Thurs.  I bought an extra pint this week.  Also, buying lots of grapes and cherries.  The cherries travel well in a ziplock so I can have some at work.

But, there are only a few things as good as fresh strawberries at this time of the year.  Oh my gosh!!  I have been buying 2 lb containers.  Last week they last about 2 days.  Today, I just ate about a lb in one sitting.

MRI and eyes

Today, I had a head MRI, saw my radiation oncologist and saw a retina specialist.

Dr Henderson informed me that my brain lesions continue to be stable.  That's a very good thing and I am not experiencing any new neurological symptoms.  I will go back in October for another MRI.  Dr H wants to be aware of changes in the lesions rather than wait for new symptoms.

This afternoon, I visited Dr Phan - a retina specialist.  Dr Zlioba had recommended that I see a retina specialist to evaluate what he called floaters.  She confirmed the floaters in both eye and did a pretty complete physical evaluation of my eyes.  She indicated that the current floaters are not causing any issues with my retinas.  I will also go back to see her in October for a re-check.

Back in Indy

Getting to work was tough on Tuesday after getting home so late from the trip and getting into bed a 2:30AM.  But, I made it in a little later than usual. Caught up on things before a couple days of medical stuff.

On Wednesday, went into the IU Simon Cancer Center for a chest Xray and appointment with Dr E. Drove to Joliet right after finishing with Dr E.  Appointment with Dr Z on Thursday to do a final check on my cataract surgery. All went well at both appointments. 

Back to work Friday after driving back to Indy on Thursday evening. Since I had mostly caught up on Tuesday, I spent the day doing normal things. Got a referral to a retina specialist at IU per Dr Z's suggestion. Apparently, I have "floaters" and he wants me to have them checked out by a retina specialist. Was able to get an appointment to follow my brain MRI and appointment with Dr H next Tuesday. So, I will spend most of the day on Tuesday at IU Hospital.

With Alaska behind us and no new trip scheduled yet, will be doing typical stuff for a while. Which means, work and medical stuff for both Jill and me.  And, we are looking forward to a short visit from Julie next week.

Reflection on Alaska

Now that we've been home a couple days, I can reflect on the Alaska trip. As cruises go, it was a very good vacation. Alaska remains our favorite cruise destination.

The wildlife viewing was exceptional as always. Kodiak was a little disappointing - or we had overly high expectations. Seeing the pod of killer whales at Juneau so close to the excursion boat for about 20 minutes was outstanding and was a cruising highlight. I think I got my best-ever whale tail picture.

Entertainment onboard was just OK. Lorna Luft put on an unexpected, fabulous show - maybe one of the best we have seen on a cruise ship. However, much of the performances by the ship's show group was too obviously pre-recorded and blah.

Food in the dining room was generally good - as was the Lido Cafe. The Pinnacle Grill was outstanding. I admit that I ate a lot and gained 4 lbs. I don't usually have dessert after every lunch and dinner!

We, again, had very enjoyable dinner partners. And, we continue to prefer the "old style" assigned seating for dinner.

Scenery was awesome, as expected, and we confirmed that Hubbard Glacier is "the" glacier to see. Glacier Bay can't compare. Butchart Gardens remains an incomparable place to visit.

Travel to/from Seattle through Atlanta was grueling and we must only do a direct flight (and not so early) next time.

The ship, the HAL Amsterdam, was good. We did have glitches - like the toilet required 4 or 5 plumber visits. But, in general, it continues to be a nice ship after 10 years. The concierge at the Neptune Lounge (for suites only) was very friendly and helpful.

As always, I am very glad that we visited Alaska once again.

Good News

Well...the good news for today is that my lung cancer is still stable/in remission. No treatment needed at this time. Next follow-up in mid-August.

Next, the eye doc tomorrow.

Cruise food

Apparently, I haven't discussed food enough. So...here are some added comments.

Most of the food was what I would call typical cruise ship food. I had a variety - steak, salmon, chicken, and lamb. Desserts were typically very good. If a dessert included chocolate mousse or was souffle, I had it. For some reason, I ate a lot more bread/butter than usual.

Jill ate small portions - usually mainly the protein - beef or chicken.

We ordered breakfast in our cabin almost every day. Went to the dining room once; but, ate the same things. So we figured there was no reason to bother leaving the cabin early. Most lunches were in the Lido Restaurant. Stir-fried rice or noodles with chicken or beef. Bread pudding and chocolate bread pudding most days.

A few times we had to eat on the run due to excursion timing. Missed a couple lunches.

I can't wait to get home on a scale. I think I have actually gained a few pounds. But, I'm sure that Jill probably lost wait since she ate such small amounts at all meals.

So...that's the food update.

Victoria

Yesterday was our day at Buschart Gardens. Always beautiful plants and flowers. We had about 90 minutes on our own. We used about an hour before we were pretty much pooped. Jill did a little shopping and we returned to the bus early.

Getting off the ship was a chore. Crowds crammed into hallways, stairways and elevator lobbies. It was a zoo. On the bus, I commented to someone from the Cruise Directors staff about the people packed like sardines and the safety issue. She told me that, if I was going to just complain, she would change seats on the bus. When Jill and I started to explain how other cruises have controlled such crowds, she blamed the passengers and said this is how they have handled such things for 3 years. It's a irritating story and she was ruder than anyone I have ever encountered on any cruise.

The wind was cold and biting. When we got off the ship, we had about a 100 yard walk to the busses. It was much worse coming back because we had to walk directly into the wind - one of those winds where you must lean into it to walk.

But, at the Gardens, it was quite pleasant. We both had to take off a couple layers. Lots of flowers - I don't know the names. But, very pretty. They have Rose, Japanese, Italian, and Sunken Gardens. We cut a few short because they involved too many steps or long upward slopes.

Didn't get back to the ship until 8pm - too late for our regular dinner. Luckily, we had made reservations in the Pinnacle Grill. We ate in this special restaurant 3 times. The food is as good as any top notch restaurant on land. I had filet mignon twice and lamb chops once. Chocolate souffle and creme brulee were great. Jill had filet mignon, a beef skewer and a chicken/turkey skewer - all were delicious but too much food for her. She went for the souffle all three nights.

It was a very late evening - complicated by the fact that we had to pack for departure today. We are taking advantage of expedited luggage handling. Once we put our luggage out last night, it goes directly to the airline and we don't see it until the Indy airport. Hope it works well.