On the Radiation Home Stretch

I haven't blogged for a week simply because there hasn't been anything new to report.  My brain radiation treatments have been going along just fine with minimal side effects.  I've been able to go about the regular routine of my days without any real adjustments.  I only have two more radiation treatments left, so I am hopeful that I will continue to manage my normal activities without difficulty.  I am still running, walking the dogs and riding the recumbent bike so my physical activity has been good and I think it helps me maintain my energy throughout the day. 

Today, I brought the radiation technicians a bag of microwave popcorn so they could make a snack while doing giving me my treatment.  They got a kick out of that!  :)

My right hand is still pretty shaky, even with having increased the steroid dosage again, but last night I started to see a slight improvement so hopefully that will continue.  In the meantime, I am getting better and better at writing left handed more legibly and quickly.  Dr. Bloomer saw me today and said I should stay at the current steroid dosage and he'll let Dr. Bonomi know my progress and condition to make further decisions from here.  I''ll see him on October 5 to get baseline bloodwork and begin our Tarceva regimen.

I also saw my dermatologist, Dr. Julie Goldberg, today for the first time since 2007.  I wanted to get her on board in advance with a plan for treating the acne rash I'm likely to get from the Tarceva.  She seemed pretty confident that we will be able to treat it topically with medications that won't interfere with any of the drugs I am taking.

Over the past weekend, Doug and I took a little holiday in Union Pier, Michigan with the dogs and supported our friends as they rode in the Three Oaks, Michigan Apple Cider Century bike ride (great job Ron - 100 miles and Maddie - 50 miles!).  We also enjoyed the company of my sister Susan and her boyfriend Scott who came from Saugatuck to stay overnight with us on Saturday.  Doug and I have been bicycling in this ride for the past several years but we really enjoyed just chilling out and enjoying everyone's company this year.  Next year, we'll be back on the bikes, though!

13 Down, Minor Side Effects and Bald

Today was the 13th brain radiation treatment.  My energy is still good.  I still get spacey, but nothing too bad.  My latest weird side effect is hearing a slight metallic resonance to certain mid- and high-range sounds when people talk or I hear music.  I told the doctor about this today and he looked at me like I had two heads.  I guess that isn't a common side effect.  Maybe my musical training makes me extra sensitive - who knows. 

My right hand is almost constantly shaky now and I can't write much of anything.  (I'm going to start practicing writing left-handed.)  Dr. Bloomer decided to go back to a higher dosage of the steroids to see if that will help alleviate the shaking.  It may be getting worse as a result of swelling around the lesions from the radiation treatment and the steroids are meant to counteract that swelling.  So we'll see what that does.

Last Thursday night, Doug shaved what was left of the hair on my head so I am now officially bald.  Given all the times I have banged my head over the years, I was amazed to discover there are no dents or craters on my scalp.  I actually have a pretty well-formed melon! 

I got a beautiful wig on Friday that looks very natural and gives me the hairstyle I could never manage to get with my own hair because it was too fine and had too many cowlicks.  So now when I decide to have hair, it is FABULOUS!  (If anyone ever needs a wig for cancer treatment, I highly recommend Lori Irsay at Look Alike Solutions.  She is absolutely amazing and an advocate for me in every way.)  Then on Saturday, I got eyelash extensions that give my lashes extra length and curl and last 6-8 weeks - these give my eyes a little more pop without any extra effort.  I love the results! 

I'm not going to lie and say it was easy to lose the hair - it was anything but.  It is much harder to pretend that everything is normal when either I see myself or others see me without hair.  But when I wear the wig I do look normal - maybe better than normal.  And the rest of the time - well, it is what it is.  At least I like wearing hats.

Midway Through Radiation and Can Drive Again

Today marked the half-way point for my full brain radiation treatments - 10 down, 10 to go.  I'm still feeling okay for the most part, just get a little spacey from time to time.

I also learned today that I am once again cleared to drive!  Yeah!  The results of my EEG, although still showing some slower than normal activity, do not indicate any epileptic activity and the bloodwork showed I was in an acceptable level for the anti-seizure medications to be effective (although the neurologist still wants to increase the dosage a bit).  It will be good to have my independence back.  Thanks to all who have been driving me around for the past four weeks - you have been wonderful!

On the downside, my hair is coming out in brushfuls so I think I only have a day or two before I lose it all.  Otherwise, I am doing well.  I ran 5 miles with the dogs this morning and felt great.

Saturday's Soggy Superstar Supporters

Doug and Me at the Lung Run

In spite of the constant rain and light wind, 19 people showed up as promised to walk or run with me in the Lung Run to support education and research for lung cancer this morning.  I am so touched and impressed by this show of dedication and support.  Thank you from the bottom of my heart to each and every one of you.

Additionally, due to the generosity of friends and family, I reached my financial goal of $1000 in donations to the Respiratory Health Association of Metropolitan Chicago and Uniting Against Lung Cancer.  All of this achieved in less than a week.  My army of supporters continue to amaze me.  Thank you, thank you, thank you.

I even saw Dr. Bonomi and his nurse, Irene, at the event.  Nice to see they are such active supporters for the cause.  This further reinforces my choice to work with Rush Medical Center for my treatment.

I've completed 7 of the 20 brain radiation treatments at this point.  So far, the only side effects are some occasional spaciness after the treatment occurs and a little extra sensitivity in my gums.  My energy is still good and I am able to go about my normal day pretty well.  I have started with the preparations for my upcoming hair loss (I figure sometime in the middle of this coming week it will start to fall out) by having a wig being prepared (thanks much to Cheryl Hill for helping me along that adventure!) as well as purchasing some cute hats and scarves.

Thanks again to all who have been sending good wishes, cards, prayers, masses, resources and referrals.  And thank you to my friends and neighbors who are spoiling me rotten with better home-cooked meals than I've ever made for myself, rides anywhere I need to go, and all sorts of special pampering treatment.  I feel truly blessed to have so many wonderful people in my life!

Plans for the Lung Mass

I spoke to Dr. Bonomi's nurse this morning and the plan is to meet with Dr. Bonomi the week after brain radiation treatments are done (October 5) and begin the Tarceva oral medication.  We will have monthly check ups for progress and a CAT scan every 8 weeks to see how the tumors are responding - the first one being some time in November.  So now we officially have our plan!

Also met with Dr. Angelopolous, the neurologist today, for follow up on the brain seizures.  She wants me to have more blood work and have another EEG to see if the anti-seizure medication is working at the appropriate therapeutic level.  I will set up these tests and then check in with her by phone to get the results a week later.  If she is satisfied with the levels, I might get permission to start driving again sometime soon.

(For those of you who are interested in the greater details of my initial consultation with Dr. Bonomi and his staff last Thursday, I have now added "The Longer Story" to the blog post for Thursday, September 2.)

A Plug for a Good Cause

Some friends will be joining me this Saturday, September 11 for a 1K Walk to support the Chicago Lung Run and Walk at Montrose Harbor.  The Chicago Lung Run is held each year in support of lung cancer survivors and their families, and in memory of those who have lost their lives to lung cancer, the leading cancer killer in America. The mission of the Chicago Lung Run is to raise awareness of lung cancer and to raise much-needed funds for lung cancer research.

The 2010 Chicago Lung Run will benefit cutting-edge lung cancer research through:

• RHAMC - The mission of Respiratory Health Association of Metropolitan Chicago is to promote healthy lungs and fight lung disease through research, education and advocacy. RHAMC has been a leading lung health advocate since 1906. From its crusade against TB in the early 1900's to today's groundbreaking programs in women's lung health, asthma, COPD and lung cancer, RHAMC has been in the forefront of Chicago's fight against lung disease. Enlisting the finest educational tools from across the nation, RHAMC offers tobacco cessation and asthma education programs targeting adults, caregivers and children. A strong local advocacy effort culminated in the passage of smoke-free legislation in Chicago and Illinois, and limitations on power plant emissions. Respiratory Health Association has been a local leader in securing funding for important lung health research projects at Chicago area universities and serves as host to Chicago Thoracic Society, the local presence of American Thoracic Society in metropolitan Chicago. Funds raised through the 2008 Lung Run will support important lung cancer research projects through RHAMC.

• Uniting Against Lung Cancer- Uniting Against Lung Cancer is a nonprofit 501 (c) (3) organization committed to fight lung cancer by funding innovative research into the diagnosis and treatment of the disease, including those who never smoked. Since 2003 over $6 Million has been awarded through 60 research grants to individual researchers at top cancer centers in 21 states.

If you'd like to join the team Friends of DonnaLee for a 1 mile walk (or you may also choose to do the 5k or 10k run), you can sign up at Link to Lung Run: http://www.lungrun.org/raceinfo.shtml and link to Join the Team at http://www.active.com/register/index.cfm?CHECKSSO=0&EVENT_ID=1845162.

If you can't make it then you may be a supporter by donating online to the team.  The link to donate is on the Team Pledge Page is http://www.active.com/donate/2010LungRun/DCaring3.

RACE INFO

Join us on September 11, 2010, for the 6th Annual Chicago Lung Run, a 10K/5K run, walk, and rally on the city's beautiful lakefront at Montrose Harbor! The Chicago Lung Run is one of the largest running events in the city, with more than 2,000 runners, lung cancer survivors, and representatives of leading Chicago hospitals expected this year.

Registration is now open! Register online now! View complete registration details on the http://www.lungrun.org/raceinfo.shtml

Date & Time

Saturday, September 11, 2010
8:30 a.m.: 10K race
9:00 a.m.: 5K race and 1 mile walk
Montrose Harbor: 4400 N Lake Shore Drive
Chicago, IL 60640

Shirt & Goody Bag

The first 500 registrants will receive a tech shirt! All other registrants will receive a cotton t-shirt. All registrants will receive a goody bag. Race shirts are short-sleeve, unisex-sized, and available in XS - XL. Please select carefully as shirt sizes and quantities are fixed and we are unable to exchange shirt sizes.

Transportation & Parking

To determine the best route to travel via public transportation, please visit the CTA's trip planner

Limited parking is available in the Montrose Harbor Parking Lot, Wilson and Lawrence Parking Lots and on Simonds Drive. Standard meter parking rates apply. Exit Lake Shore Drive at Wilson Avenue, Lawrence Avenue, or Foster Avenue.

For those who decide to come, we will try to coordinate through an email a place for us all together before the walk so we can all stay together on the course.
 
Thanks for your support!

Glad to be a Mutant!

I got some very exciting news this evening.  Dr. Law left a message on my voice mail that I do indeed have the genetic marker for the EGFR (epidermal growth factor receptor) mutation and am therefore a good candidate for the Tarceva drug treatment.  This is the news I'd been hoping for.

Here is an explanation from Wikipedia: 

Mutations involving EGFR could lead to its constant activation which could result in uncontrolled cell division – a predisposition for cancer.  Consequently, mutations of EGFR have been identified in several types of cancer, and it is the target of an expanding class of anticancer therapies. Tarceva has been having success in directly targeting EGFR.   EGFR positive patients have shown an impressive 60% response rate which exceeds the response rate for conventional chemotherapy. 

Additionally, according to Dr. Bonomi, Tarceva has had success in treating both lung and brain tumors, something that traditional chemo doesn't do too well because of the blood/brain barrier in our bodies.  Dr. Bonomi also told me that having this marker improves the chances of success if I have to use some other chemo treatments down the line as well.  

An Encouraging Second Opinion

The Short Version

The meeting with Dr. Bonomi today went very well.  There are some very encouraging options and treatments with minimal side effects that could potentially preserve me well for quite some time.  The Tarceva drug continues to be a strong candidate if I have the right genetic markers - hope to find out very soon the results of that test.  But even if that doesn't work out, there are some chemo drugs that also hold promise and it sounds like they won't dramatically limit my current way of living.

There is a lot to process from our time at Rush with Dr. Bonomi and his team and I am going to take some time to sift through all the information, so for right now I will just leave this short version and get to the longer story at a later time.

The Longer Story

Doug, my brother Rick and I had the second opinion consultation with Dr. Bonomi and other members of the Rush Medical Center staff on Thursday afternoon at 3:00.  The consultation at Dr. Bonomi's office lasted over three hours.  The first hour was a lot of registration and verification of background and insurance.  Then we met with Dr. Bonomi's resident, Rheem Karmali, for quite some time as she provided a lot of the information about our options for treatment.  Next was an introduction to Alison Grupski, a psychologist who wanted to know how each of us was managing through this challenging time and who also spent time explaining all of the integrative therapies and supportive programs available as part of cancer treatment at Rush.  These include access to a dietitian, pain management, yoga, herbal and acupuncture therapy as well as counseling for the patient and all family members.    After that, the meeting with Dr. Bonomi himself and then a larger group meeting with him, his resident, his student and Dr. Krystyna Kiel, one of their radiation oncologists.

The doctors seem to be in agreement that the correct course of action is to have the full brain radiation done first and foremost before anything else.  They are on board with the treatment I am having at Highland Park, although the radiation oncologist thinks it may not fully eliminate the lesions, but just control them.  They would watch the progress of the brain lesions through MRIs several weeks after the radiation is completed and may opt to perform some more focused radiation on the brain for any remaining lesions later, after they have made headway with the lung mass. 

As for the lung mass, if I have the genetic markers for Tarceva, then that clearly seems the way to go.  It is not a chemo drug but works more specifically on certain biological aspects of a genetic mutation that is causing overgrowth of cells and has been found to work on both the lung and brain tumors.  Tarceva is an oral pill taken once a day.  It has had a 60% success response rate and has been used for months and years for some patients.  If over time the response should subside, there is a booster drug called Belvacizumab that can be taken in conjuction with Tarceva to try to keep the response up.  And if that too should become ineffective, then we would move on to some form of chemo or other drugs similar to Tarceva.  (Having the genetic markers for EGFR also improve the effectiveness of chemo drugs for treatment.)  The side effects of Tarceva are much less than with chemo.  Some fatigue, an acne rash that can appear on the scalp, face and upper chest (75% chance of getting that), and possibly diarrhea (50% chance).  There is also a slight chance of appetite loss and thinning of hair.  I'm a pretty likely candidate for the acne rash since I already have a prior history of both adolescent and adult acne, but I can live with this. 

The alternative to Tarceva, if I don't have the necessary genetic markers, is a combination of three chemotherapy drugs - Cisplatin, Carboplation and Alitma.  Using Alimta in this combination instead of Taxol is a newer therapy that is clinical studies right now, but they are finding milder side effects with at least the same level of effectiveness.  The side effects of the chemo would definitely be more substantial than with Tarceva, but since I am young and otherwise pretty healthy, the doctors seem to think I would manage through them without much trouble.  Some possible effects are fatigue, which is cumulative over the length of the treatments, nausea (usually controlled by medication), and potentially a drop in blood counts that would mean I'd have to be careful to avoid infection (3% risk), may get anemic, and/or bruise and bleed easily and maybe be susceptible to nose bleeds.  Alimta can also cause some mouth soreness that they typically treat with folic acid.  The chemo treatment would be an intravenous drip administered once every 3 weeks for four cycles.  After that, I would go on "maintenance" with just the Alimta every four to six weeks.

With both the Tarceva and the chemo options, I would receive CAT scans every three months to see how the therapy is working and whether the tumors are shrinking, growing, spreading or staying the same.  Any time that it would appear that a treatment isn't working, we would evaluate other options.  And it appears there are other chemo combinations available to use if necessary.

There is also the possibility of doing radioscopic surgery on the lung mass to shrink or eliminate it to get it 90% controlled, depending on how it responds to the Tarceva or chemo.  This would involve one to four radiation treatments.  There would be no real side effects to this surgery other than some short-term respiratory symptoms as the tissue heals.

Treatment on the lung mass with Tarceva or chemo would begin 1-2 weeks after the completion of the brain radiation treatements.

There is absolutely a possibility that I could achieve total remission.

Radiation Treatment Begins...

I met with Dr. Bloomer today at 2:00 and had my first full brain radiation treatment at 2:30. 

Dr. Bloomer has decided to increase the number of full brain raditation treatments to 20 from the original 13.  He says this will reduce the risks of long term side effects - I'm all for that, so no argument here.  My treatments will be at 10:45 every week day and only take a few minutes each time. 

Dr. Bloomer is also cutting back the dosage for my steroids, which should actually reduce my current fatigue (the steroids contribute to sleeplessness at night, and actually increase anxiety as well), so it might get better for me (at least in the short term) rather than worse!  Cognitive issues like "where did I put my keys?" are part and parcel of both radiation and chemotherapy but Dr. Bloomer doesn't think it should show up in any more dramatic fashion than what most 40+ people encounter in their daily routine.

They will wait about four weeks after my final radiation treatment to re-scan the brain to see what we accomplished.  They have to wait that long to allow the swelling and scarring to subside.  They expect that the lesions will shrink and/or disappear.  For future lesions, or those stubborn lesions that just won't shrink, they would use a focused radiation therapy treatment targeted at the particular lesions.