GREAT NEWS!!!!!

Got the results of Tuesday's scans today.  [Insert drum roll here.]

There is NO EVIDENCE of brain lesions anywhere in the brain.

The lung tumor is stable and INACTIVE.

We are stunned and delighted.  Even the doctors were a bit surprised by this great outcome. 

YIPPEE!!  HOORAY!! WHOOPY!  HAZZAH!

We are still going to pursue some focused radiation on the lung to zap any microscopic cancer that may still be there but not showing up on the PET scan.  The focused radiation has a 90% success rate.  I will also continue on the Tarceva as long as it seems to be working.

Although I'll never be able to say I am cured and the cancer can come back at any time, this is as close to being free of cancer as I can ever hope to come.  I'll take it!

Please feel free to pour yourself your favorite alcoholic beverage and raise your glass in virtual celebration with Doug and me - you all get part of the credit for this wonderful news.  I know the tremendous support I've received throughout this whole ordeal has a lot to do with this success.  Thank you.

Scans Today, Results & Options Discussed Thursday

This is just a quick update.  I had the PET scan this morning and the Brain MRI this afternoon at Rush.  Everything went smoothly, but it was a long day with a lot of waiting in between the procedures and no food since 7:00 this morning so I am wiped out.  As I expected, no results were provided today but these will be provided and options for next steps discussed with Dr. Bonomi and one or two of their radiation oncologists this Thursday afternoon.  My brother Rick will be joining Doug and me for this meeting.  Rick, my sister Susan, Doug and I have all been doing some research to educate ourselves and we've been preparing questions to ask at that meeting.  Thanks to those who offered suggested resources - I checked out everything suggested by everyone.

Meanwhile, I have about a 1/2 inch of hair growth on my head but still have that sparser area in the front and center.  I've started to venture out occasionally without covering my head, but I still get cold a lot and wearing the hat makes a difference in maintaining warmth.

I will post again on Thursday evening, of if I'm too tired, Friday with the results and outcomes from the doctors' meeting.  Stay tuned!

Today's Doctor's Visit and Researching Focused Radiation Options

Today I had my monthly check up and bloodwork with Dr. Bonomi and everything looked great.  All my vitals and bloodwork were normal and he said I looked great.  He was pleased with my weight as well (I’ve maintained same level as last visit).

On Tuesday, April 5 I will have a brain MRI and PET scan and on Thursday, April 7 we will meet with Bonomi and two radiation oncologists from Rush to review the results and discuss next steps relating to radiosurgery.  Of course, if they think I should have focused radiation on either the lung or brain or both, they will recommend their approach. 

I've been trying to find some comparative data for the different types of focused radiation and have not had much luck.  If any of you have some good information on the pros and cons of the various options - gamma knife, cyber knife, Novalis, tomotherapy, proton therapy are just some of them - please let me know.  Here is a link on what Rush offers, for what it's worth:  http://www.rush.edu/rumc/page-R11689.html.  This is one of the more challenging aspects of this whole cancer process is learning ALL of your options and then determining which path to take.  Thanks in advance to anyone who has suggestions or information to share! 

Friday's Neurologist Visit

Last Friday, I had my appointment with Dr. Angelopoulos.  She was pleased to see that the lesions in my brain have shown some shrinkage from the scan reports.  I got her to agree to cut the dosage on the anti-seizure medication, but she isn't optimistic that it will improve my appetite.  I figure it can't hurt, and I am always trying to reduce the amount of medication I am taking anyway!

My next appointment with her isn't for three months, so at least I won't have to worry about that for awhile!

...And the Results Are In

I had the Brain MRI and CAT scan along with the usual bloodwork at Rush today.  It's all good news.  The CAT scan showed no change in the lung tumor and the MRI showed a bit more shrinkage in the lesions in the brain.  All the bloodwork came back normal.  I couldn't really ask for more.

So we will continue on this course - Tarceva every other day.  I'm still working on eating more (I never in my life thought I'd have to write those words!) and doc seems to think that if my appetite hasn't come back by now, it probably won't.  I'm going to talk to Dr. Angelopolous, my neurologist, at our appointment Friday about cutting back on the anti-seizure meds to see if that might help the appetite (plus I've been on them over 6 months and haven't had a seizure since the original one in early July).  There are also some drugs that Dr. B can prescribe to stimulate appetite but I'd really like to find a different way.  The wine before dinner seems to be helping.

In a couple months, Dr. B wants me to have a PET scan along with the brain MRI to make sure the cancer has stayed contained and consult with Dr. Diaz, a radiation oncologist, to evaluate if we should use focused radiation on either the brain, lung or both.  Once we get to that place, we'll have to do more research on the best focused radiation approach to use.  Rush uses one form of stereotactic radiation, but there are several forms, each with different pros and cons we will want to look into - but we'll cross that bridge when we come to it.  I asked Dr. B why we would want to do focused radiation if we are still seeing progress with the Tarceva alone.  He said that typically the cancer cells eventually develop a resistance to the treatment (usually around 12 months into the treatment) and we want to get ahead of it and see if we can eliminate the tumors.  I'm all for that, as long as the risks and possible side effects are minimal. 

Regarding my hair, I now have a reverse mohawk with dark baby-down hair everywhere except right down the middle, where there is an inch-wide stripe that is shorter and more like stubble.  But we are making progress, which seems to be the theme of this blog.  And progress is good!

Tomorrow's scans postponed 1 week

Due to some nasty weather forecast for the next couple days here in the Chicago area, my doctor's appointment and scans that were scheduled for tomorrow have been postponed until next Tuesday, February 8 in the morning.

Florida Getaway

Doug and I just returned Saturday night from a six-day vacation with my sister Deborah where we visited her dear friend Maureen in Sanibel Island, Florida.  It was restorative and relaxing and wonderful.  The weather was even warmer than it had been (low- to mid-70's during the day) so Doug and I were able to run outside on four of our six days there.  There was still some humidity that adds a little challenge to the runs, but it felt so good to be outside without layers of clothing!

I think the trip was good for my hair as well because all four of us are certain that it grew while we were there.  I now have dark peach fuzz over all but the very top of my cranium, which is still a bit stubbly.  I am happy to finally see some progress!

Unfortunately, my appetite didn't improve significantly and I had three mother hens watching my every mouthful for signs of progress.  Though I didn't gain any weight during the trip, I didn't lose anymore either.  Maureen was a great host in making sure there were plenty of tasty and tempting items available for meals and snacks.

It was such a pleasure to just relax and not worry about schedules or plans.  We just hung out and did whatever we felt like doing when we wanted to do it.  And saw lots of great sunsets on the water.  I hated to come back to the cold.

A week from today is the next set of scans.  And then Wednesday will be an appointment with the neurologist.  I haven't had any seizures since that first one in July and the levels of the drug in my bloodstream are good so I am hoping to get her to consider reducing the anti-seizure medication since I think that perhaps it might be contributing to the reduced appetite.  We'll see.