Saturday, December 3, 2011

12/2/2011 Novalis radiosurgery

After the aborted plan for Gamma Knife radiosurgery yesterday, I went in today for a different procedure - Novalis radiosurgery. The procedure started mid-morning with them making a mask to hold my head in place - similar to the mask I had for full-brain radiation. Next, was a head CT with the mask in place. The doctors took that CT and the MRI from yesterday to plan the procedure. Jill and I were able to go to lunch during the planning. Rather than 201 radiation beams aimed at the lesions with my head in a frame, this procedure is a single radiation beam, my head is held steady by the mask and the machine moves (arcs) around my head. As it moves, the beam is focused on the lesion per the computer settings planned by the doctors. The procedure was around 20 minutes. Normal potential side effects from radiation - most of which I have only experienced over time. I would anticipate some fatigue. But, I don't anticipate many of the other side effects which I experienced from the full-brain radiation...we'll see what happens. I am instructed not to drive for 2 days, get plenty of rest, don't lower my head, watch for dizziness, etc. I go back to see Dr Henderson on Feb 2 for a follow up.

Thursday, December 1, 2011

12/1 darn - on to next procedure

Got an early call at 7:30 for an immediate Gamma Knife radiosurgery, went to IU, got prepped (IV, frame screwed onto my head, IV contrast, MRI), waited for doctors to plan, they came out to tell me they can't do the procedure. Apparently, the lesion location is outside the area where the radiation beams can be focused. But...I still have the frame attachment sores and I am dozy from the sedation. Gave me options - scheduled a different procedure (Novalis radiosurgery). I go in tomorrow, Friday, at 9am.

Tuesday, November 29, 2011

11/29 MRI follow up

Mostly good news today from the radiation oncologist. The 13 brain lesions treated in the Gamma Knife radiosurgery on 8/31 are all stable. That was the primary goal of the procedure. And, I have no significant bad side effects. But...there is a lesion that has grown a little. It was not initially treated because the doctors thought is was already stable. Will now have Gamma Knife procedure for that lesion asap. At least the procedure will be shorter since they will only treat the one lesion rather than 13. Waiting for the procedure to be scheduled.  Since I've been through it once, this time will take time; but, I won't have any anxiety about what is to happen.

Monday, November 28, 2011

11/28 chest/abdomen CT

Good news from my CT and visit w/ Dr E today. Lung cancer is reduced & stable enough that he reduced my visits w/ him from every 3 weeks to 4 weeks. Reduced CTs from every 6 wks to 2X per year w/ interim chest xrays. Also had a brain MRI and will see Dr H tomorrow.

Friday, November 18, 2011

Primary Care Dr f/u 11/18/11

Dr F was pleased with my bloodpressure and pulse today-hurray! She was also happy with the bloodwork from last week. Cholesterol now good at 148 vs previous 88. Apparently, blood counts are better-she asked if I've been eating more meat! Liver & kidney function #,s are good. Life is good.

Friday, November 11, 2011


11/11/11 is one year since I started on study drug treatment for lung cancer - crizotinib. Still doing well. Lung cancer mass still at 70%+ reduction. Each CT Dr E tells me that it has reduced "a little more". The drug is now FDA approved and called Xalkori. I will continue to take it as long as it works and I don't experience significant side effects.

Thursday, November 10, 2011

11/9 checkup

Saw Dr E (oncologist) yesterday. Bloodwork looks good. Cholesterol at 148 :-).  Dr F (primary care) had been very concerned about my cholesterol being "way too low" at just 88.  Pulse is 60 :-)  Dr F had been very concerned about a pulse at 40-45.  Dr F and Dr C (cardiologist) should now be happy. And...I am happy to be off two daily bills - one for cholesterol and one for high BP. 

Monday, November 7, 2011

November - National Lung Cancer Awareness Month

I share the frustration of Kathryn Joosten. After the sea of pink in October, how many even know that November is National Cancer Awareness Month? More people die from Lung Cancer each year than the next three types of cancer combined.,0,6810017.story

Wednesday, October 19, 2011

10/19 follow up

CT and bloodwork today.  Dr E said my lungs continue to responding to the Xalkori (crizontinib).  Continue with the Xalkori and "keep enjoying yourself."

Tuesday, October 4, 2011

Heart - pulse rate

Saw the cardiologist regarding all the tests they did a few weeks ago. My ticker is working just fine. He said I have a strong heart that is just beating slowly. After a few weeks off one of the blood pressure meds, my BP is good and pulse is up a little - 55ish now vs 45ish before. He doesn't see any need to do anything at this time. Next appt in 6 months.

Friday, September 30, 2011

When we graduated in 1974...

Had time to think during our recent vacation. I thought about what it was like when Jill and I graduated and married in 1974. I don't know the unemployment rate at the time. But, I know that she got a teaching job and we planned on living in the city where we grew up. So...I needed to find a job in Joliet. Every day I went through the job ads. I had a degree with a major in sociology/psychology with a GPA around 3.3/4.0 and I had difficulty finding something.  Finally, I found a job as a quality control inspector at a plastic bottle manufacturing plant. It certainly wasn't what I had planned on doing; but, I got a paycheck- $600 per month. Not a lot; but, it was something. I was eventually promoted to a production foreman on the midnight shift - midnight to 8AM. I could still tell you all about the process of making plastic bottles using blowmolding and injection molding for milk, bleach, shampoo, etc.

Next, I was a foreman at a plant that assembled wallpaper sample books. We assembled the swatches of wallpaper and fabrics into the sample books that you would see in a decor store. Then, I worked as a recruiter for what we called data processing people - data entry clerks, programmers, system analysts, etc. No personal computers at the time.  I didn't know a thing about computers; but, I learned the jargon and was creative when it came to finding and placing people in jobs. Basically, I would convince a company to pay me a commission if they hired a candidate that I found (or lured from another company). This job was commission-only with a very small draw that was subtracted from my earned commissions. I was actually quite good at it. Very briefly, I was a recruiter in Joliet.

After about four years of saving up everything we could and before I left recruiting, we scraped together enough to buy our first house. Shortly after we bought the house, I went to work for Hallmark - first, managing the installation of new stores and remodels. We took a blank space and installed/opened a new store in four day. Then, I went into sales. I was still not doing what I had thought I would be doing when I went to college. By now I realized that in college I wasn't really sure what I would be doing after graduation. I never expected to be in "sales"; but, I guess I was good at it and I ended up being a sales trainer for Hallmark and a district sales manager for Drawing Board Greeting Cards.

I had many misc jobs before all this - these include concession worker/popcorn maker at a drive-in theater, summer jobs as a steelworker and a painter/misc labor at a college near Joliet, cook's asst in the dorm kitchen at ISU, Student Asst at the dorms in college and a math tutor during High School. Basically, I did whatever I could to get paid.

I bought my first car with my own money while in college in 1972 - 1972 red Chevy Vega. Beginning as a freshman in college through about 1978 when I joined Hallmark, I had a relatively steady paycheck (of some kind). I think I was unemployed perhaps 2 or 3 weeks during that time. Combining a scholarship, work at the college, summer jobs and loans, I managed to pay for my education without parental assistance. It took 10 years of monthly payments to pay off my college loans and I can still remember making that final payment.

Some might say that I didn't have goals and that I've floated aimlessly through life. Maybe so. But, in the end, I've become a very successful businessperson and have created a business legacy of which I am proud. The group I manage does business with more than 14,000 small businesses each year and those businesses employ more than 56,000 employees - counting themselves. Thousands of small entrepreneurs are able to create their own small retail business. I am very happy with my national reputation in the mall industry.

As this blog outlines, I am now a 4 1/2 year survivor of stage IV lung cancer that has metasticized to my brain and gallbladder. This past year I have been taking a study drug for lung cancer, had my gallbladder removed and had Gamma Knife radiosurgery on my brain lesions. Even so, we have completed two cruises and traveled to Punta Cana , DR for a nephew's wedding. Throughout this time, I have continued to work mostly full-time. We will continue to travel throughout the world - cruising. I have endured through all that you can read in this blog. And, I have continued to make the most of my life by living each day - one day at a time.

I wanted to take a little time to outline my life so that others can know more about me than just "I have cancer, this is how I've been treated and it's a wonder that I am alive". Yes, I do have cancer. Yes, it will probably kill me some day. But, I am much more than the cancer that is taking me. In the future, perhaps I will write about the 25+ years since I left the greeting card industry.

Thursday, September 29, 2011

Pictures from PEI, Portland and Quebec City

Anne of Green Gables House

"Bug Light" lighthouse in Portland Maine

Carriage at Anne of Green Gables House

Chateau Frontenac - Quebec City

street performers - Quebec City

At sea 9/23-24

The last two days have been very relaxing days at sea. Breakfast in the cabin, trivia, lunch, trivia, trivia, nap, trivia, relax in cabin, trivia, tea in cabin, listen to live music before dinner, dinner, ship's performers or movie, day is over.

We continue to win many trivias. We have had a very good couple as partners. Jill prodded me to play a new Game Mania which turned out to be similar to a 4-person Jeopardy. The ship even has podiums with buttons to buzz in to answer. I won.

Celebrity, the ship (the Summit), the staff taking care of us and this cruise itinerary have all been great. We only had 3 excursions; but, we explored a few other towns.

We are anxious to look into our next cruise. We will definitely look into other intineraries with Celebrity.

Today was the activity we really hate - packing. Tomorrow will be a day of travel to get home. At least we don't need to connect. Even though it is a smaller 50-passenger plane, at least it is non-stop.

Can't wait to plan our next cruise.

Charlottetown PEI 9/21

We started very early this morning for an island drive. Had a couple stops at scenic locations in a couple national parks and a preserves shop - Prince Edward Island Preserve Co. Then, we visited the house that inspired Anne of Green Gables. We also viewed a Lucy Maud Montgomery bio video and saw her grave site - very near the house.

This is mostly a farming community. Close to 2000 farms on the island - primary crop is potatoes but they also grow onions, carrots, broccoli, strawberries and other vegetables/fruits. Much of these are exported. 250 dairy farms producing milk, cream, butter and cheese. They also fish for lobster, mussels and oysters.

PEI is the smallest Canadian province. It lies between New Brunswick and Nova Scotia.

Trivia so far today 2-W 1-L.
One more today.

Quebec City & at sea 9/18-19

Second day in Quebec City. Didn't go off ship since Sunday had tired us out. Lots of trivia 4 wins 1 loss. Jill read on her iPad. Casino closed since we were in port. And, Jill thinks she might be done because they usually seem to tighten up the payouts at the end of a cruise. I relaxed - or, basically, did nothing ;-)

Normal meals - we're in a bit of a rut. But, the food is very good.

Brand new show by the ship's cast. We saw their 1st time performing the new show. It was quite good even though it started a bit slow. Got more interesting after the first couple songs.

Day sea today. Expect lots of relaxing.

Quebec City 9/18

After a relaxing day at sea, we arrived this afternoon at Quebec City. The weather was sunny and mid-to-high 60's. Seemed warmer in the sun.

Upon docking, we walked around the Old Town and did a little shopping. It is a very European city. A bit challenging for us with many up/down slopes. But, we made it through the lower portion of the city. We will be here overnight. So...we'll decide what to do tomorrow.

On ship, we won both trivias that we played. Jill had a so-so morning at the slots. Ric Steel did a great headliner show. We watched the jazz group for a while. Oh...we ate a lot.

At sea 9/17

Nice lazy day at sea today. Breakfast in our cabin. AM trivia - we lost ;-( PM trivia - we won ;-) apparently we crushed all other teams and there was a comment "that team knows too much" - well, yeah. We know lots of answers and you don't

Obviously, we had lunch, dinner & snacks. Jill played slots and still running hot. Up another $150+ for the day. I've been focussing on watching entertainment - Ric Steele has been great - string trio is interesting, accapella quartet is solid.

Staff for our cabin is great. Butler delivers our breakfast everyday and brings afternoon tea/snacks to our cabin. He takes our laundry and would probably do whatever we want - if it's legal. State room and asst state room attendants are very efficient. Not sure which ensures that I have grapes and other fruits each day.

With so many people wanting to care for your needs, it is easy to relax.

I expect tomorrow to be busier. We don't have an excursion; but, will just go into Quebec City to see sites and maybe look for gifts. Will be a lot of walking. At least we'll have 2 days before departing.

Halifax 9/16

We shipped everything; so, we didn't have to pay sales taxes. That saved almost $50. They also had a location in the market at the dock; but, we took a cab to the store for $10 each way and most of the items Jill bought were $30-40 cheaper. We feel like very frugal shoppers today - forget about what we actually spent!!

Back onboard, we resumed normal afternoon activities - eating and trivia. We won 4 of the last 5 trivias. We've often teamed with another frequent cruising couple. In fact, we have cruised with them in the past and recognized each other on the first day.

We continue to enjoy the afternoon tea served each day by our butler. Many choices of pastries, mini desserts, mini sandwiches and a selection of teas.

The weather is quite a bit cooler here - more like we had expected. 57 F now. Probably around 50 F when we went off ship this morning.

The population in Halifax is 360,000. That is 40% of the total population of the province of Nova Scotia.

For Jill's friends, she won a little bit on the slots last night. She is up a little - around $220 for the cruise so far.

Bar Harbor 9/15

Very foggy most of the morning. It's a little cooler today. Had a big breakfast and were ready to go when we rec'd the notice that the whale watching tour was cancelled due to the weather. Only a short while earlier Jill had commented that we wouldn't be able to see anything.

So...we played trivia twice so far today. Won one & lost one. One more to go before dinner.

Last night Jill broke even at the slots. We were out late again enjoying Rick Steele. The ship moved him to a larger venue and the dance floor was packed. We even danced a couple songs.

It has been a relaxing day. We cruise to Halifax, Nova Scotia, tonight. No planned excursion tomorrow. We will find a shuttle or cab to the shopping area since Jill wants to look for Irish wool sweaters.

Portland Maine

Almost done with our day in Portland, ME. Breakfast in our cabin has been our habit. Only the day after departing NY was nice enough to have breakfast on the verandah. But, we have a nice dining table in the suite.

A city tour and lighthouses for an excursion today. Saw Bug Light, Spring Point Head Light and Portland Head Light-this is the lighthouse picture framed in my office from a previous visit.

It has been much warmer than expected throughout the trip so far. We definitely did not bring the right clothes; but, we have managed to get by.

Filling in from earlier when I didn't have service, we had a great meal at Bice in NY - an Italian restr at 54th & Madison. The Waldorf was impeccable. Cafe Metro was great for chocolate chip cookies & milk. Smith & Wilensky was great. The show, Jersey Boys, was wonderful and very entertaining.

NY traffic was outrageous due to 9/11 events. But, our driver got us to the port faster than we had expected.

Our suite on the ship is very nice. Two separate rooms plus a dining area. Quite comfortable. Our butler, Keith, has been taking good care of us.

The entertainment onboard has been excellent. It is nice to be back with live singers, a live band, an a capella quartet and a singer/guitarist named Rick Steele - we have been up late (for us) the past two nights as he has continued singing beyond his scheduled time. Hard to believe we were out until midnight last night!

We have two nice couples as tablemates. A diverse group and we have enjoyed good conversations. On the first night, we rec'd a complimentary dinner at the Normandie specialty restaurant. I had the best rack of lamb. Jill's steak was delicious.

The ship has had 5 (yes, five) trivia games every day. We love it. Haven't been able to get to them all; but, we go to every one we can.

That's all for now. Gotta get ready for dinner.

Update 9/13

No service for a couple days until we got to Boston. Went out to shop at Quincy Market. Have mostly been playing trivia and watching the entertainment.

Celebrity gets an A+ for the actual live performances and a live band vs a lot of lip-synced recorded stuff on Holland. Jill has won at the slots - of course.

I'll try to write a more complete update later if my Blackberry works. Couldn't even use it to write for a couple days.
We are fine. All is well.

NY 9/10

Well...the 2 1/2 tour yesterday took 5 hours with all the added security stops and truck inspections. Happy they are being so diligent looking for screw balls. It was a nice tour - but very long for us. Last night the Jersey Boys show was fabulous.

Don't know what we'll do today. We had a nice breakfast and are pondering options. I picked up a banana, cookies, choc milk and Gatorade-tyoe drink. Not sure if we want to deal with the heavier than normal traffic since it might be even more intense today and 9/11 celebrations are tomorrow. And, Jill is a bit tired. We'll just wait to see what the day brings. Maybe we will just relax and go out somewhere for lunch.

We've had access to a restricted lounge for a nice continental breakfast and afternoon snacks. We've used it for both breakfasts and for snacks the day we arrived. Couldn't get to it yesterday afternoon because our tour ran so long.

Travel & NY 9/8-9

Our morning travel yesterday was pretty uneventful. Left Indy on time-small commuter plane-arrived on time-minor glitch with car was quickly resolved-drive to hotel was OK. When we checked onto the Waldorf Towers (attached to the Waldorf Astoria) we were treated very well. Our suite is quite grand. Jill says it is as big as our small house in Iowa.

For late lunch, we walk a few blocks and ended up at Smith & Wilensky Grill (next to S&W Steak & Chops). Picked up choc chip cookies and choc milk for later.

Friday late AM we boarded a double-decker tour bus for the downtown tour. He was a hop-off-hop-on tour. We just stayed on. Quite a bit of extra time to go through frequent police security stops initiated within the couple days. Every small truck was pulled over and police inspected the cargo compartment. While inconvenient, we were happy to see them aggressively doing security checks.
The nature of the tour was that we saw the sights and passengers could hop off at various stops to explore and hop on a later bus. We didn't do that - we just went for the ride. We spotted the usual sights of lower Manhattan - Rockefeller Center, Empire State Bldg, Chrysler Bldg, Chinatown, Wall St, World Trade Center site, the under-construction Memorial Tower, Battery Park, South Street Seaport, Brooklyn Bridge, Flat Iron Bldg, Greenwich Vlg, Soho, Madison Sq Garden, United Nations, Times Sq, 2 million sq ft NY Macy's, Central Park, and many Broadway Marquees. I'm sure I have missed something; but, we probably drove past it.
We were out for about 5 hours - very long for us. We went straight to Metro Cafe, ate lunch, bought choc chip cookies and chocolate milk for later and headed to our room to prepare for Jersey Boys tonight.

Travel & Cruise

I am going to give a shot at posting the travel updates for our cruise.  For those who already got these updates as we traveled, sorry.  You can obviously ignore this repeated info.

Thursday, September 1, 2011

Lung cancer checkup

New lung and abdomen CT this morning. Saw Dr E. The fluid in the abdomen is pretty much gone and the lung cancer mass continues to reduce a little more each new CT. No need to change treatment - will continue on the crizotinib (now called Xalkori after FDA approval).

Also heard today from the RN for the Gamma Knife radiosurgery. Just checking in. No bleeding. No headaches. Can remove all band aids. Can return to normal activities. Will be going into the office tomorrow.

so far so good

Jill helped me to remove the turban and band aids last night. She put neosporin on each sore and put band aids on three. No pain. No headache. No nausea. No diarrhea. All is good. This morning Jill will drive me down to the IUSCC for an MRI and appointment afterward with Dr Einhorn. He will provide me with news about my lung cancer and continued use of crizotinib (now Xalkori after approval by the FDA).

Wednesday, August 31, 2011

8/30 Gamma Knife Radiosurgery

All went well yesterday; but, it was an incredibly long day. Registered at the outpatient desk at 7:45AM and left the hospital at 8:30PM. Am doing fine. Not quite as handsome as Capt Jean-Luc Picard as BORG on Star - The Next Generation; but that is quite a frame. It was attached using four sharp pins after I got four shots to numb the areas. Each brace in the picture is held at the top by a pin that attaches to my skin but doesn't attach to the skull. The pins are a bit tight. The numbing shots even numbed my lower left lip. These numbing shots are, apparently, the most painful step for many; but, they weren't really too bad for me.

After installing the frame, I was taken for an MRI. They also temporarily attached a large hard plastic bubble with labeled holes and stuck measuring pins to determine "air space" - I assume between the Gamma Knife and my scalp. Two doctors repeated the measurements for accuracy. The MRI and air space measurements would be used to target the lesion locations and compute the Gamma Knife settings. Four doctors (radiation oncology, neurology, neurosurgeon and a physicist) spent around 2 1/2 hours with the MRI data planning the procedure. The best news was that they had decided that they could treat all 13 lesions this time and I will not need to have a second treatment in 3 - 4 weeks.

When they finally finished, I was moved into the Gamma Knife room. The table was similar to an MRI table; but, it had a frame on which my head frame was attached. It felt like two pins on my frame that slid into two slots on the machine frame. All four doctors remained present for the entire treatment. The process of approximately 25 procedures started. The doctors measured the various angles for adjustments. Two doctors set and double-checked each setting - one would use a tool to set the X axis, one would check that setting and both would say it for an RN to confirm what was on the computer list for each procedure.  This was repeated for the Y and Z axis.

The table was then moved into the Gamma Knife. It is similar to going into an MRI tube. It was very quiet until the 2nd or 3rd procedure when the RN had music set up for me to listen to. I could move my feet, hands and I could talk. So...I proceeded to engage in music trivia with the RN. Those who know me know that I was pretty good - particularly on the 70's mix and the James Taylor. This was helpful throughout the process until the last three or four procedures. It had become pretty grueling by that time.

After each procedure, the table was moved back out and the doctors went through the reset process for each new procedure-X, Y, Z, check, double-check. For some, I had to have my chin almost touching my chest. For others, my head was about as far back as possible.  Others were various head positions. My head was moved since the multi-ton machine with 201 beams from cobalt-60 sources doesn't move. The circle of 201 beams are aimed at a very specific target - a lesion or tumor as identified on the MRI. The 201 beams converge to a very small point. Each beam is very low radiation; but, the radiation is stronger treatment level at the targeted location due to all converging at that point.

Some of the procedures were only a few minutes.  Others were 15+ minutes. In total, I received about 3 1/2 hours of this process. Jill went with me and toughed out the entire 13+ hours. It was required that someone drive me home and she drew the short straw. We had left home at 6:45AM and got home a little after 9:30PM. I had one fall at home before I went to bed but didn't hit my head - just landed on my butt! 

Today and tomorrow I have a classy white gauze turban covering four band-aids. I can remove the turban and three of the band-aids tonight. The 4th spot (left front) will heal last because that pin actually penetrated muscle. I will probably need to wear that band-aid for a few extra days.

Can return to minimal activity at home today-depending upon side effects. Thurs Jill will me drive for a CT and to see Dr Einhorn since I must wait 48 hrs before returning to some normal activities. Driving depends if I need to take pain meds.
I return to see Dr Henderson in three months. He will schedule an MRI and determine the status of the lesions. Hopefully, all will be gone or static at that time.

Friday, August 26, 2011

FDA approves crizotinib (now Xalkori)

This is the test drug I have been taking since November, 2010

Non-Small Cell Lung Cancer Drug Gets FDA Nod
By Emily P. Walker, Washington Correspondent, MedPage Today
Reviewed by
August 26, 2011
WASHINGTON -- The FDA has approved crizotinib (Xalkori), a novel targeted therapy
for late-stage non-small cell lung cancer.
The Pfizer drug, an inhibitor of anaplastic lymphoma kinase, is a twice-daily pill
intended for a select group of patients who express the abnormal anaplastic
lymphoma kinase (ALK) gene, which causes cancer development and growth.
The FDA also approved a companion diagnostic called the Vysis ALK Break Apart
FISH Probe Kid, made by Abbott Molecular, to help determine if a patient has the
abnormal ALK gene.
"The approval of Xalkori with a specific test allows the selection of patients who are
more likely to respond to the drug," Richard Pazdur, MD, director of the Office of
Oncology Drug Products in the FDA's Center for Drug Evaluation and Research said
in a press release. "Targeted therapies such as Xalkori are important options for
treating patients with this disease and may ultimately result in fewer side effects."
Crizotinib's safety and effectiveness were established in two single-arm studies
enrolling a total of 255 patients with late-stage ALK-positive non-small cell lung
cancer. One of those studies, published in the New England Journal of Medicine last
year, found that crizotinib shrank or eliminated 57% of ALK-positive non-small cell
lung tumors.
The most common side effects reported in patients receiving crizotinib included vision
disorders, nausea, diarrhea, vomiting, edema, and constipation.
Crizotinib was approved under the FDA's priority review program, which provides for
an expedited six-month review of drugs that may offer major advances in treatment or
that provide a treatment when no adequate therapy exists.
Since publication of trial results last October, crizotinib has generated much
excitement among oncologists who said genetically-targeted treatments like crizotinib
have the potential to change how cancer is treated.
Although no more than 7% of non-small cell lung cancers are driven by the ALK
genes targeted by crizotinib, the drug would still benefit as many as 10,000 patients
with non-small cell lung cancer in the U.S. alone, Gregory Kalemkerian, MD,
co-director of thoracic oncology at the University of Michigan in Ann Arbor, told
Medpage Today last year.
The information presented in this activity is that of the authors and does not
necessarily represent the views of the University of Pennsylvania School of Medicine,
MedPage Today, and the commercial supporter. Specific medicines discussed in this
activity may not yet be approved by the FDA for the use as indicated by the writer or
reviewer. Before prescribing any medication, we advise you to review the complete
prescribing information, including indications, contraindications, warnings,
precautions, and adverse effects. Specific patient care decisions are the responsibility
of the healthcare professional caring for the patient. Please review our Terms of Use.
© 2004-2011 MedPage Today, LLC. All Rights Reserved.

Wednesday, August 17, 2011

Gamma Knife radiation surgery

Met neurosurgeon yesterday. Looks like Gamma Knife radiation surgery very soon. Apparently, with the number of lesions and the scatter throughout my brain, he says I will need 2 surgeries. 2nd will be 3-4 weeks after the first. That means one before my trip and one after. They have agreed to try to schedule around my trip ;-)

He went through the risks involved - some of which could be significant - but, have a 3% to 5 % (or less) risk. He also went through the process for the day - a very long day. I should hear about the schedule in the next couple days. Next, I will view a CD about the procedure.

Tuesday, August 16, 2011

stress test / neurosurgeon

Spoke yesterday with the RN from the cardiologist's office.  She is waiting for the cardiologist to review the full data from the portable monitor, the stress echo and the ultrasound.  However, she didn't seem to think that there is anything significant.  Apparently, my pulse was low - at 39 when I slept wearing the monitor.  Since the Dr had just taken me off metoprolol, she suggested continuing to monitor BP and pulse.  Last night, BP was 144/67 and pulse was 58.  She said that the cardiologist would contact me if he wants to change anything.

Yesterday, I had a brain MRI.  Today, I see Dr H (radiation oncologist) and meet with Dr W (neurosurgeon) who would do the Gamma Knife radiation surgery if they decide to go that direction.

Saturday, July 30, 2011

portable monitor

I was able to remove the portable heart monitor today at 5pm. What a relief! I sure hope that it recorded some worthwhile information.

Friday, July 29, 2011

BP and cholesterol

Have you ever heard that your cholesterol was "way too low"? I imagine few people have. Well...apparently, mine is way too low. I stop taking my vytorin and go back for a checkup in a few weeks.

Have you been told that your pulse is too low. Yep, that's me too. Referred to a cardiologist today. Took me off a BP med. I am wearing a fashionable 24-hour portable EKG. I go back in a week or so for a stress echo test.

Wednesday, July 20, 2011

July 20 CT

Chest/abdomen CT today. Dr J said all looks OK with the CT and bloodwork.

Tuesday, July 19, 2011


Worked out the schedule re brain lesion treatment. New MRI 8/15. See Dr H and Dr W (radiosurgeon) on 8/16. Hope to do gamma knife radiosurgery the week of 8/22 so that we can, hopefully, be ready for our Sept trip.

Monday, July 18, 2011

spine MRI results

I just rec'd the following information from Dr H - radiation oncologist:

"I was just now able to get a final radiology report signed off.... I had looked at the images last week, seen nothing to give evidence of cancer in the spine, and was only awaiting final confirmation. The official report agrees with my impression (there is no evidence of cancer in the spine). My plan then would be a short interval MRI of your brain, with a tentative plan to use radiosurgery on the one new area and any other metastases that seem to be growing. The short interval scan is because several of the metastases were indeterminate (they looked slightly fuzzier, but not necessarily actually larger, and I want to see if they should be treated or not). Could you please remind me of your vacation plans? I want to schedule the MRI with enough time to do a GK treatment prior to your trip."

So, not evidence of cancer in the spine.  Looks like they will go forward with the Gamma Knife radiosurgery.

Monday, July 11, 2011

another tumor

Well, it appears that things are still evolving. Talked with Dr H today regarding the brain MRI done last Wednesday. He advised me that there appears to be another spot - not actually in my brain - but, in the fluid by my brain stem. They must now wait to decide what to do about the brain lesions until I have a full spine MRI to determine if the cancer has spread down my spine. If there is a spread to the spine, Gamma Knife radiosurgery will not be an option. If there isn't a spread to the spine, they can still consider the Gamma Knife. So...Wednesday I will be spending a long late afternoon getting the spine MRI. They will do the spine scan in 3 sections - each about as long as the brain MRI - about 35 minutes each. I will be given a chance to sit up and stretch between sections.

Over the weekend, Dr E indicated that finding cancer on the gallbladder shouldn't impact my continued participation in the Crizotinib study. We go forward with the regularly scheduled chest and abdomen CT next Wednesday.

Friday, July 8, 2011

7/6 MRI

I spoke with Dr H (radiation oncologist) this morning. Apparently, a few of the brain lesions appear to have possibly grown a little. He said they were "fuzzy". Don't think that is a technical medical term. He is going to review the MRI with a neurologist and get back to me. Options might be another follow-up CT in a couple weeks. Or, they may decide to go forward with radiation gamma knife surgery - which has apparently been the next course of action for the brain lesions that were identified more than 2 years ago.

Also learned today that the cancer on the gallbladder is adenocarcinoma - the same type of cancer that is in my lungs.  The Research RN indicated that this should not impact my continuing on the crizotinib lung cancer study drug.

So...I wait for the feedback from Dr E regarding the gallbladder cancer and from Dr H regarding the brain lesions.

Thursday, July 7, 2011

gallbladder cancer

I got a call today from the surgeon who removed my gallbladder last Friday,  7/1. He had just rec'd the pathology report for the gallbladder. It turns out that the gallbladder had cancer tissue. So...I guess this means that the cancer has spread to at least one additional organ. I don't know exactly what this will mean. Dr M will contact Dr E (my oncologist) to ensure that he sees the pathology report. I guess I wait to hear back. Dr M had indicated to Jill that he had removed a very inflamed gallbladder with lots of stones and stringy stuff attached to it. I suppose that might have been the cancer. He indicated that he had removed it all. Now I wait for direction and for the results of the brain MRI this past week.

Wednesday, July 6, 2011

gallbladder & more

Well, I just noticed it has been a while since I posted. Since my last post, we went to Punta Cana, Dominican Republic, for Jill's nephew's wedding. The wedding was beautiful - on the beach, great weather - a little hot, breeze off the ocean. During the trip, I did had another gallbladder attack. This one was a little milder and I was able to handle it with the pain meds I had been prescribed at the ER. After this 2nd attack, I shifted to eating virtually nothing but fruit. And the resort offered lots of pineapple, cantaloupe, watermelon, mango and papaya. So...fruit for breakfast, lunch and dinner. I managed to not have a 3rd attack.

When we arrived home after a grueling travel experience, I was visited by Montezuma's revenge. Over the next week, my bowels were pretty much evacuated. It turns out that around 8 from the wedding were also afflicted.

On July 1, I went for scheduled gallbladder surgery. My gallbladder was removed using laparoscopic surgery. So, I have a small incision in my belly button where they inserted a light and camera and 2 small incisions where they inserted surgical instruments and removed the gallbladder. Apparently, the gallbladder was extremely inflamed, full of gallstones and had lots of "stringy things" on it. He removed it all. Surgery started at 2:00 and I was home by 6:30. I was told that recuperation would be 5 to 10 days. I've been frustrated because I had hoped to be back to normal more quickly. Today is 5 days and I am now starting to feel better.

This morning, I had a trip to the Cancer Center for a brain MRI. This is a regular follow up scan. Jill drove since I am not yet sure that I should. My belly felt every single bump in the road. I didn't take a pillow; so, I held my belly as much as I could. The MRI was on time and the scan went as usual. I have had many brain MRIs; so, it was pretty much as I expected. Head in a cage. Loud BOOM, BANG, BUZZ, HUM, CLANG, etc. After about 45 minutes, we were on our way home. I, again, felt even the most minor bump. I see Dr H regarding the MRI at the end of July.

I was exhausted when we got home. I immediately took a hour and a half nap. I will need to consider whether I am ready to drive to work tomorrow. It's the same route and distance as the Cancer Center. And I probably can't expect to take a 90 minute nap at the office.

Next lung CT is later this month. I expect to hear that all continues to go well with the Crizotinib.

Tuesday, June 14, 2011


Met with a surgeon today to discuss my gallbladder attack. He gave me lots of info re: attacks, causes and treatment. We discussed and scheduled surgery to remove my gallbladder in early July. In the meantime, I need to be careful what I eat to avoid triggering another attack. After the attack on Saturday, no way I want to go through that again. If it does happen again, I will now be able to identify it and I have some strong meds to take to ease the pain.

Sunday, June 12, 2011

gallbladder attack

Experienced a severe gallbladder attack late yesterday. Have never had extended, severe pain like that. Really scary. Went to the emergency room. Several tests and lots of pain med. Apparently, I have gallstones. Feeling better today. Going in to see my doc tomorrow. I imagine the docs will want to remove my gallbladder.

Thursday, June 9, 2011

June 9, 2011 retina follow up

More retina photos and saw Dr Phan. Retinal hemorrhage in right eye is the same as last visit. Continue with Nevanac drops and wait. Apparently, takes time. While there are treatment options, this type of thing typically clears up on its own over time. Next visit in August.

Wednesday, June 8, 2011

June 8, 2011 status

Had a chest and abdomen CT this morning and saw Dr Einhorn afterward. Everything looks good. He indicated that there has been a little reduction in the lung cancer mass and the fluid. Abdomen is clear. Left lung continues to be clear. No new significant side effects. Will continue with the 250 mg 2X per day dose of crizotinib.

Lots of news about crizotinib this week because the American Society of Clinical Oncology had a national conference this weekend in Chicago. Two of the links are copied below.

Sunday, June 5, 2011

New crizotinib news

There are quite a few recent news articles about crizotinib. Apparently, a national conference of oncologists has included presentations about the very positive results from this study drug. I have certainly experienced the kind of results that are being discussed. Below are links to a couple of the articles.

Wednesday, May 18, 2011

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.

Monday, May 16, 2011


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.

Thursday, May 5, 2011

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.

Wednesday, May 4, 2011

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.

Saturday, April 30, 2011

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.

Thursday, April 28, 2011

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.

Thursday, April 7, 2011

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.

Thursday, March 17, 2011

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.

Friday, February 25, 2011

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.

Wednesday, February 23, 2011

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.

Saturday, February 19, 2011

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.

Monday, February 7, 2011

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%.

Saturday, February 5, 2011

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.