Happy Holidaze

All is well and Sundance and I are both doing fine.

I just wanted all of you - my army of supporters - to know how much it has meant to me to have your support during the past four months since my cancer diagnosis.  Thank you from the bottom of my heart (and Doug's too) - you cannot imagine how much of a difference you have made and how much you have helped to keep our spirits up.

Enjoy your holidays however you celebrate them.  But celebrate - don't forget to find some joy in this hectic holiday season.  I can personally attest to the fact that looking for good things never fails to deliver and that it provides the fuel to keep pressing forward. 

I am very grateful for the many good things in my life - many of them are the people reading this blog.   You bring me joy.

And finally, best wishes to all of you for a happy and healthy new year!

Quick Update on Sundance

Since I mentioned Sundance's illness, I should also provide an update on her condition.  She is now responding well to the medication to treat her Addison's disease and has returned to her normal state of high energy, activity and entertainment for her loving owners.

I think our household is finding its way back to something we can call a normal state of being.  Whew!

Mammogram and Ultrasound

I had a mammogram at Highland Park hospital today since the technicians at Rush saw some density in my left breast during the check CT last week and they wanted it checked out.  I should state up front that nobody was overly concerned about this density, they just want to be thorough and make sure they don't miss anything.

When I was all gowned up and ready to be smooshed, the technician at HP said she couldn't do the mammogram without the films from the CT so that they could see what they were looking for.  This was the first I heard of needing those films for this appointment, but I had them at home.  I convinced the tech to go ahead with the mammogram and I would bring the films and hang around until they looked at them in case they needed to take more images.

Well, I brought the films on a CD as well as the technician's written report from last weeks chest CT and I waited.... and waited... and waited...  Once the doctor who looks at the scans was available, he couldn't get the computer to read the CD so they had to bring it to another department.  About an hour and half later they said they wanted to do an ultrasound to be sure there was nothing amiss.  So I gowned up again and had the ultrasound of my left breast. 

No surprise to me, they didn't find anything so all looks well.  They even mentioned to me that they could see the same density in the chest CT scan that Highland Park hospital performed in August and in my prior mammograms.  This whole thing felt like a big waste of time to me.  But I guess it is good that they are being so cautious and thorough.

The Long-Awaited Scan Results

The Results

Today I finally had the MRI scan of my brain and the CAT scan of my lung to see what kind of progress has been made.  The news is pretty good.  There has definitely been no spread or growth on any of the tumors in either region.  Dr. Bonomi said the lung mass looks less dense and slightly smaller.  He was having some trouble with comparing the films for the brain MRI baseline from Highland Park Hospital with the MRI from Rush taken today to determine what difference there is.  He could only see 4 lesions from today's films and HPh had reported 5, although two seemed very close together in that initial report.  Bonomi said it looks like that there may have been some slight reduction in the size of some of the brain lesions too.  He was pretty satisfied with these outcomes and considers this a positive report.  I think I was hoping for some more significant improvements, but that doesn't seem to be the nature of how this treatment progresses.

The radiation technician also saw some density in the left breast that they want to investigate further, so they want me to have a mammogram and also provide films from mammograms from the prior couple of years.  Although this is a hassle, I am not concerned as the very first mammogram I ever had showed density in the breasts and required a follow-up ultrasound.  Nothing came of that and I don't expect that anything will come of this either.

What's Next

I will have a regular check up with blood work in another month and in two months, we will repeat the MRI and CAT scans.  There is a possibility that in about 6 months, if we don't see significantly more shrinkage, we may do focused radiation (gamma knife or cyber knife) on the remaining lesions in the brain and the lung mass.

The Lead Up to Today

The past few weeks have been very difficult to say the least.  I have not felt well and our beloved dog, Sundance, has been gravely ill.  The Sunday before Thanksgiving, we thought we were going to lose her and it was more than we could bear.  The good news is she will live.  The bad news is she has Addison's disease, which is a malfunction of the adrenal glands that can be managed with medication throughout a normal dog lifetime.  She still isn't well and we are still trying to figure out why the medication to treat her illness isn't having more effect, so tomorrow I take her in for an ultrasound.  This has obviously been an added stress in an already stressful time.  During this same time, I caught some kind of cold or flu and became nauseous, lost my appetite, got chills, was very fatigued and had little energy.  I was either riding the couch, going to the vet, or preparing special food and force-feeding it to Sundance with Doug.  By the time these tests came around today, I was so drained of emotion that I didn't even care what the outcome might be.

I am feeling better now.  I am no longer nauseous but still have very little appetite.  Dr. Bonomi is putting me back on the steroids for a few weeks in hopes of stimulating my appetite.  He is also having me take the Tarceva every other day instead of every day.

So, we got a decent report, we have a plan to go forward and now we just got to get Sundance and me back to our normal selves.

Thanks to all who have been sending such supportive and caring emails, voice mails and texts and for thinking and praying for me as we waited for the results of this day.  It means so much to have such incredible support!

My Family "Wigged Out"

This posting is for fun.  There has always been a strong family resemblence among my siblings, but when we all have the same hairstyle, you really notice it.  Some other relatives who may not have a strong resemblence joined in for fun. 

If you click on the link below, you will see me and then each of my family members wearing my wig.  http://donnaleespix.shutterfly.com/461

From left to right, the pictures are me, my sister Deborah, my sister Susan, my brother Rick, my mom, my dad, Doug, my sister-in-law Jennifer and my nephew Charlie.

Good Results from Doctor's Visits

I saw my oncologist, Dr. Bonomi yesterday and my neurologist, Dr. Angelopolous today and all the signs are positive and everything is looking good.  My blood work was all in the normal range.  They both thought I looked very well. 

The Tarceva rash has so far been very mild.  This may be due to the pre-emptive anti-biotics I have been taking, but whatever the reason, it's good by me.  Bonomi is not too concerned about the rash correllating to the efficacy of the Tarceva as he was part of the study that tried to establish that correlation and they were unsuccessful.

I will have a MRI for the brain and a CT for the chest/lung on November 30^th so that is when we’ll find out what kind of progress we’ve made. 

I've added a "subscription" gadget to the left column of this blog that should allow you to subscribe to the blog so you can be notified, or even read a new posting, directly through your email rather than having to check for a new post by coming to the blog site.  I am new to all of this  blog technology, so I am not certain how this will work, but it is worth a try.  Since my postings are becoming less frequent now that things are settling down a bit, this will be a less cumbersome way to keep track of my progress for the readers, if it works.

All is Well

I know it has been over a week since I last posted to this blog, but there hasn't been any real new developments and I have had a lot of out-of-town company visiting that has been keeping me busy.   I am completely out of the radiation fog now so no longer spacey and feeling like my old self.  My energy is pretty good, although I am pretty tired by the end of the day.  I am sleeping through the night almost every night now.  The radiation burn at the base of my neck is almost gone - just a thin red line remains and it doesn't bother me at all.  The rash from the Tarceva is minimal and not causing me any real problems.  And finally, my right hand is getting better all the time and I can now write a paragraph or more at a time with my right hand. 

I will see Dr. Bonomi this Tuesday but don't expect to get any news.  I think he will just be checking for how I am reacting to the Tarceva.  We will no more about the progress of the cancer treatments after Thanksgiving when we do the CAT scan and brain MRI.  On Wednesday, I will see my neurologist, Dr. Angelopoulos for a check-in.  I probably won't post again until after these two appointments unless there are new developments in the meantime.

Thanks for checking on my progress here and for all of the concern and support you all continue to show me.  It makes all the difference!

Positive Signs

It's been almost two weeks on Tarceva and so far, no major problems.  I may be seeing signs of a slight rash near my neckline by the bottom of my ears, but it isn't causing me any discomfort and doesn't look too bad.  The radiation burn on my neck is much better - only about an inch of redness and much less angry than before.  I've been off the steroids since last Thursday and have slept through the night ever since.  I am feeling more and more like my old self and less spacey with each passing day.  And finally, my right hand seems to be improving.  I can sign my name when needed now and yesteday, I was able to write continuously with my right hand for about four or five sentences before the shakes got too bad. 

I think that given my re-emergence toward normalcy, it is probably time to stop taking advantage of the generosity of my friends and neighbors and start cooking for ourselves again after this week.  To everyone who has supplied a meal to us, we are so very, very grateful and I'll have you all know I actually gained weight over the past two months because of it!  The food has been delicious and we have been spoiled more than we deserve.  Thank you all so very much.  If things take a turn at some other juncture, I promise I'll let you know if we need to start up the gravy train again!

Keep on keeping on...

This post is in memory of Bob Harmon who died yesterday. Bob was our friend Matt's father who was diagnosed with lung cancer many years ago and has battled multiple rounds of the cancer's recurrence throughout the years to live well beyond his initial prognosis, all the while surviving his wife's own battle with cancer after she finally succumbed to it after defying the odds as well. Although I didn't know Bob personally, he was kind enough to reach out to me when Matt told him I was diagnosed with lung cancer and share his and his wife's experiences as a source of comfort, knowledge and inspiration to fight. I will forever be grateful. Rest in peace, Bob and my heartfelt condolences to Matt, Becky and the rest of the Harmon family.

I think the fog of the radiation is starting to gradually clear. Although I still feel spacey a lot of the time, I've been able to concentrate on things long enough to get some work and volunteer project tasks done each day. Yesterday was especially productive so I am encouraged that I am getting closer to normalizing. It has been two weeks since I completed the radiation and I recall the doctors saying the side effects last about two weeks. I am still pretty fatigued by the end of each night right now though. The radiation burn on my neck is healing, although I still have about a 2 inch scab there. The burn on the forehead is fully healed. I have just 2 more days left to finish off the steroids and in spite of the fact that I am up at 4 a.m. right now, overall I have been sleeping better. My right hand is still very shaky but I can write about a sentence at a time with it so there is improvement there as well.  I've been on Tarceva for one week with no ill effects so far and hoping that lasts as long as possible.  So all in all, things are going well.

Yesterday's Doctor's Visit - What's Next and What to Expect

I have been having some challenges with Google lately where I haven't been able to get into my blog to enter new posts, so this is part of the reason for the delay in getting this posting out today.

The Short Version

Yesterday's appointment with Dr. Bonomi was very positive.  Basically, the Tarceva has a 70-80% chance of successfully containing and/or shrinking and/or eliminating the cancer cells in both my lung and brain and with relatively minor side effects of a rash on my face/scalp/chest/neck; diarrhea; dry skin and some mild fatigue.  When my hair does grow back, it will likely be wavy or curly and thinner by the temples.   It will take a long time to see progress but slow and steady wins the race.  When I see Dr. Bonomi again on November 2, we will do some blood work to make sure things are holding steady, but won't really have any tests that show us what progress we are making.  Those will occur in the appointment I will have with him after Thanksgiving, where we will do an MRI and CAT scan to see the number and size of tumors and lesions at that point.  So it's really a waiting game until that point.  In the meantime, we just find the best way to treat and minimize the side effects.  The other thing that came out of the appointment is we've decided to wean me off the steroids since they don't seem to be doing much at this point anyway.  My hand is still very shaky.  So over the course of the next 9 days I will ramp down the dosage and then be done with the steroids.  Yeah!

The Longer Story

My visit started with getting some baseline blood work to look for any tumor markers in the blood and make sure my liver and liver enzymes were at healthy levels.  Some tumors shed proteins which show up in the blood and this can be used to track the tumors' activity over time, with a reduced rate of these proteins indicating the tumors are shrinking.  The results of my blood work did not show any elevated proteins from the tumor activity, so this probably won't be a good source of information for my progress going forward.  The reason for the liver testing is that Tarceva is metabolized through the liver and they monitor the liver function to make sure there are no problems.  This will be a regular part of my blood work tests for each visit. 

I also agreed to submit a sample of blood for a study the hospital is doing to identify a set of tumor markers released in the blood to help determine which treatment strategy is best for individuals.  The markers may also be used to diagnose lung cancer at an earlier stage.  Although this won't affect my treatment at all, anything I can do to advance the cause of diagnosing, treating and ultimately eradicating this disease is a worthwhile investment in my book.

Most of my visit at Rush was with Dr. Bonomi's nurse, Irene, who is very patient, thorough and detailed with covering all the important information I needed to know about my treatment.  We first talked about the side effects and when they would likely occur.  I will probably start to see the rash in about a week.  It should peak in severity in 4-6 weeks and then subside in about two months.  I will work with my dermatologist to try to mediate the effects of the rash, but Irene already offered some suggestions for some topical antibiotics.  Ideally, I would also take an oral antibiotic but I have allergies to the most common ones - penicillin and sulfa antibiotics, so this will pose a challenge.

The dry skin will be a constant.  There are likely to be some changes in my nails - making them weaker.  And the hair, when it grows back, will likely be curly or wavy as long as I am on the Tarceva.  There is also a possibility of some "peach fuzz" light facial hair.  The diarrhea has more than a 50% likelihood of occurence, but should not be severe and nothing that Immodium can't treat.  Ironically, a healthier diet makes it worse!  The fatigue should be minimal - definitely less than I am having now as a result of the radiation treatment.

Unlike chemo, Tarceva will not lower my immune system so there is not an increased chance of infections.  They felt it was still a very good idea to get a flu shot, so I did this while I was at the doctor's office yesterday.  I do need to be careful to wear sunscreen as I will be more sensitive to the sun.

I asked about how the Tarceva works on the cancer cells.  Essentially, it stops the growth of the cancer cells.  Over time, as the cells can no longer divide to grow, they die.  So although Tarceva does not work as aggressively at killing cancer cells as chemotherapy does (which just kills everything - good, bad and ugly), it does ultimately shrink and kill the cancer cells.  Because I have the EGFR mutation, I have a 70-80% likelihood of success with the Tarceva therapy.

In terms of our process going forward, I will see Dr. Bonomi once a month.  On the first month, like on my November 2 visit, it will be just a check in on how I am doing and getting some blood work.  Every two months, starting the first visit I have after Thanksgiving, we will do a CAT scan to see how the cancer mass in my lung is doing and make sure it hasn't spread elsewhere.  We will also do an MRI to check on the brain lesions at that time, but we may not do an MRI every time we do a CAT scan.  As long as they do not see tumor growth, I will likely stay on the Tarceva.

After Dr. Bonomi, Irene and I discussed the fact that my right hand is still very shaky and the steroids don't seem to be helping this, we agreed I should start weaning off of them, cutting the dosage by 2 mg every 3 days until I stop completely after 9 days.  Hopefully, after the inflamation from the radiation has subsided, my right hand will become more steady.  Again, we have to just wait and see.

A Poem from my Brother-in-Law, Jim Tilley

My sister Deborah and her husband Jim were in town this weekend visiting.  Jim is an accomplished and award-winning poet and as we were talking about how I am teaching myself to write left-handed, he found inspiration for a poem that captures my cancer battle.  I think this is just lovely and thought it was worth sharing with those of you following this blog.  Enjoy.

Learning to Write

by Jim Tilley

—for DonnaLee

Her left hand grasps the fat, soft-leaded pencil

and makes broad strokes between the wide-ruled lines

that the tops and bottoms of characters

must barely touch, smooth cursive strokes,

straight and curved, double-size for capitals,

letter by letter through the alphabet,

a lifetime of experience telling her she has choices—

the modern-style, lower-case r she learned

in grade school or the old-fashioned one

with a serif on the leading edge and a gentle cusp

on the way down, the style to which she switched

in high school after reading a packet

of her grandmother’s letters.  And the letter p

she could leave open at its base the way the Sisters

taught her, but now feels a need to close,

though doing so makes getting to the next letter

more difficult, having to retrace her path

before going on, taking steps backward more often

than she’d like.  She’s as slow and awkward now

as she was then with everyone grading her progress.

Her script isn’t beautiful yet, not like the calligraphy

her right hand could form before the tremors.

But she discovered how beautiful she is

when her husband shaved her head after whole-brain

radiation took away her shoulder-length red hair.

She can see the smooth curves of her ears

and the diamond studs he gave her last birthday.

And now there’s a new slant to all her thank-you notes.

The Afterglow...

Well, it is nice to have the radiation treatments over with and no longer have to run to the hospital every day.  However, I think they must have given me a supercharge on the last day because the past couple days have left me feeling a bit more loopy than usual where I have to really concentrate my focus more than I had before.  It hasn't stopped me from doing anything, but it takes a bit more effort to stay in tune with my environment.  They said the effects of the radiation were cumulative and so I could be feeling a little off for another couple of weeks.  I'm hoping it won't last that long.

I also just developed a bit of a burn along my forehead and the base of my skull from the radiation.  They said this was a possibility. It is very similar to a sunburn, red in color and sensitive to the touch. My wig specialist, Lori, recommended neosporin with pain reliever and that seems to alleviate any discomfort pretty well.

My right hand is still really shaky so I'm still at the higher dosage of steroids.  The doctors are hoping once the inflammation from the radiation subsides so will that shaking.  (I'm crossing my shaky fingers that is the case!)  In the meantime, the steroids tend to make me wake up for at least an hour or so in the middle of the night.  I'll be glad when I can cut back on them.

I was still at the hospital anyway yesterday to get about 10 small vials of blood drawn.  Since I am willing to attack this cancer on a variety of fronts, a naturopathic doctor named Dr. Rubin from Arizona is working with me and wanted to get about eight different tests done on my blood to identify why my body's immune system didn't fight off this cancer.  A lot of these tests are not well known so my primary doctor, who had to order the tests, had to do quite a bit of research before she could even get the tests ordered.  It will probably take a week to ten days to get the results back since a lot of analysis is being done in places like Mayo Clinic.  Dr. Rubin also has me keeping a food journal for about 5 days and once we have all this information collected, will have some ideas to share about what I can do on the nutrition front to beat the cancer.

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.

A Slight Delay in Treatment

We had a mini-crisis overnight and this morning where there was some questioning amongst family members as to whether total brain radiation was indeed the best initial course of action.  After a lot of research and phone consultations with doctors today, we are back on track and confident that for my particular situation, total brain radiation is indeed the way to go.  So now I feel more confident going forward than I had before, which is important.

In the process of questioning the approach however, I had another phone conversation today with my radiation oncologist, Dr. L, that did not leave me feeling very warm and fuzzy.  Quite frankly, I was completely turned off with his defensiveness and tone-deaf responses to my concerns and questions.  We had similar problems during our long consultation last Friday and so, after today's phone call, I made a request to change radiation oncology doctors in order to have more confidence in this relationship as I go forward into treatment.  As a result, my treatment will now start on this Wednesday, September 1 at 2:00 and I will be working with Dr. William Bloomer at Highland Park.  He is the senior radiation oncologist there and hopefully will prove to be a better partner for my style and approach to cancer management.

Full Brain Radiation and Second Opinion

Today was an action planning day.  The two doctors I spoke to regarding a second opinion both felt I should start full brain radiation immediately and their opinions would really be more focused on the treatment of the lung mass after the brain radiation.  So the first day of full brain radiation is scheduled for Tuesday, August 31 at Highland Park Hospital.

I have an appointment scheduled with Dr. Philip Bonomi, a lung specialist at Rush Presbyterian Hospital highly recommended by three different people, for a second opinion next Thursday, Sept. 2 in the afternoon. 

So the rest of the weekend should be time for rest, reflection of all that's gone on, preparation, and enjoyment of friends and family. 

Thanks to you all for the constant thoughts, support, emails, calls and love - it has been so enriching and comforting.

PET Scan and Radiation Oncology Consultation

The Short Version

The PET scan today revealed no additional cancer in my body - very good news!  At the consultation with the radiation oncologist, Dr. L at Highland Park Hospital, the recommended course of action was 13 treatments of full-brain low-dose radiation over 3 weeks followed by chemotherapy to address the cancer in the lung and other microscopic cells that may be stealthily carrying cancer in my body.

Based on the fact that I have no detectable cancer in other sites, am asymptomatic for the lung cancer, young, otherwise healthy and have small mass and lesions; the doctor believes I have a good chance of being one of the 20% of outliers exceeding the 2 year life span. 

Next step is to get a second opinion ASAP and we are going after two local well-reputed doctors for this.  Our hope is to have the second opinion by next week so treatment can commence by a week from Monday at the latest.

The Longer Story

I had the PET scan this morning.  They inject a radioactive glucose compound into your system and let it settle in for 40 minutes or so before then using a proton emitting scanner to search for other cancer sites (it strikes me as very strange that to help me, they are mainlining me with radioactive substances). The actual PET scan consistes of me laying completely still on a board that moves back and forth under the scanner for about 20 or 25 minutes to complete the scan.    

We got good news this afternoon that the results of the PET scan showed the cancer has not progressed to any other sites beside the primary lung mass and the brain lesions - it is not in the glands or lymph nodes or anywhere else.  This is very positive news!

The consultation was probably one of the longest one poor Dr. L has ever had.  Doug, my sister Susan and I grilled him mercilessly to get a complete understanding of the approach he wants to take, the reasons for it, alternatives, risks and benefits.  We were there for over two and a half hours.  In a nutshell, Dr. L believes the best course of action for my condition is likely to meet a pretty significant general consensus, but we still intend to get at least a second, and possibly a third opinion to verify.  The plan as he explains it is to do 13 treatments (once a day, 5 days a week for about 5-7 minutes total, including prep, each time) of low dose total brain radiation.  The reasoning behind this is that there are likely microscopic cancel cells that don't appear in the MRI that we need to get ahead of before they bloom into lesions that can cause more problems.  The other option of using higher focused radiation on the 5 identified sites would actually lead to a higher overall dose of radiation and could miss those microscopic cancer cells.  I would have some fatigue, lose my hair and may have a loss of appetite.  There is also a risk of some short-term memory loss but that wouldn't become apparent for a long time after the treatment is complete.  The radiation causes more inflammation in the brain, which is treated with oral sterioids, which carry their own side-effects but seem relatively manageable.  After the 13 treatments, they wait 3-4 weeks before doing another MRI to allow the inflammation in the brain to subside and then see how the lesions reacted.  If there are still lesions present, they are then evaluated, monitored and may be treated with a more focused form of radiation or other therapy for removal or reduction.   MRIs would continue to be taken every 2-3 months or so for the rest of my life to watch for lesions.

After the initial radiation therapy, we would then look at chemotherapy to address the cancer from the lung mass.  It seems like the damage from the lung cancer has already been done since the cancer got into the blood stream and found its way to my brain.  The lung mass itself does not seem like it will be any more of a threat than it already has been.  However, there again are likely to be microscopic cancer cells in my body that have traveled from that lung mass and the chemo would be used to destroy these.  The behavior of the lung mass throughout the course of chemotherapy would be an indicator of our success with the microscopic cancer cells we can't actually see.  The chemo would commence somewhere between one day and four weeks after the full brain radiation treatment is finished.  There are many courses of chemotherapy available and we don't know yet which course would be the one to apply.  There is also flexibility in changing the chemotherapy course midstream if it is not working or is causing other problems.  Each different type of chemotherapy comes with its own set of side effects and issues. I guess we cross that bridge when we come to it.  We are still waiting for the results of the additional biopsy tests to see if I have the epidermal growth factor receptor (EGFR) genetic marker that would indicate I am a good candidate for the Tarceva drug therapy that has been having some success.  This information should be available in the next few days.  To the best of my understanding, this drug exploits specific proton functions in a cell so that it inhibits the cancer from spreading.  I will have to continue to have CAT scans every 3 months to monitor the cancer in my blood stream for the rest of my life as well.

Because of the fact that the cancer has not spread beyond the lung and brain; that I do not have any symptoms that are caused by the lung mass; that the mass and lesions are small; and that I am overall healthy and young; Dr. L seems to believe I am a good candidate for exceeding the typical lifetime of a lung cancer patient.  He says that 20% live beyond 2 years and I could very likely be in that 20%.  And "beyond" is wide open to interpretation.

Our next steps are to quickly get that second opinion.  With help from family and friends, we have honed down the prospects to a doctor at University of Chicago and one at Rush-Presbyterian, both highly recommended and with excellent reputations.  I will be calling them tomorrow to try to set up appointments ASAP.  We hope to have our second opinion completed by next week so I can begin treatment no later than a week from Monday.  Time is of the essence to avoid a brain lesion causing irreversible damage, so no messing around here.

Biopsy Official Results

The Short Version

The official diagnosis from the biopsy is non-small cell adenocarcinoma. Non-small cell is good – less aggressive than small cell lung cancer. Sub-type adenocarcinoma may potentially make me a good candidate for a drug called Tarceva, which is getting some encouraging results.  I will be having the PET scan tomorrow to look for any other potential cancer sites and will also meet with one of the radiation oncologists at Highland Park Hospital for a consultation on their recommended approach to treatment. They have already indicated they want to do full brain radiation to reduce the lesions in the brain as the first course of action.  After these sessions tomorrow, we should have enough information to begin making decisions about where to go for second opinions and to get the best treatment.

The Longer Story

I received a call from the oncologist, Dr. Law, this evening.  The official diagnosis from the biopsy is non-small cell adenocarcinoma.  Non-small cell is good – less aggressive than small cell lung cancer. The fact that it is sub-type adenocarcinoma may potentially make me a good candidate for a drug called Tarceva, which is getting some encouraging results. This type of drug more specifically targets cancer cells and does less damage to normal cells. It targets a protein called the epidermal growth factor receptor (EGFR). EGFR, which helps cells to divide, is found at abnormally high levels on the surface of many types of cancer cells, including many cases of non-small cell lung cancer. Researchers think that by interfering with EGFR, Tarcera may keep tumors from growing.  They will have to do additional analysis of my biopsy sample to see if I have the right markers in my cancer for this paticular treatment.

In the meantime, I will be having the PET scan tomorrow at 7:30 a.m. to look for any other potential cancer sites.  This is done by injecting a glucose compound into the body which is drawn to areas of malignancy and inflammation, then scanning the body for the glucose accumulations. 

At 1:30, I am scheduled to meet with Dr. Michael Lacombe, one of the radiation oncologists at Highland Park Hospital for a consultation on their recommended approach.  They have already indicated they want to do full brain radiation first to reduce the lesions in the brain.  The lung mass is of secondary concern at this point.  I probably won't find out if I have the markers for the Tarcera treatment tomorrow (this would be for the lung mass anyway).  I may get preliminary results from the PET scan by the 1:30 meeting though.

Once we have the information from tomorrow's sessions, my family and I will begin the work of determining where the best doctors and treatment centers are for my particular cancer type and decide where to get a second opinion (or even a third, if necessary). 

The Lung Biopsy

On Monday, August 23, I had a CT-guided lung biopsy performed by inserting a needle through my back and into my lung to pull out 4 or 5 tissue samples while they moved me back and forth into the CT scanner to make sure they steered the needle into the correct site - this was a somewhat difficult procedure since the mass is near my aorta.  The procedure lasted about an hour and 15 minutes under pain medication and very light sedation - I had to be alert to breathe in and out when requested.  As they take the samples, a technician evaluates them to see if they are good.  At the end of the procedure they will be submitted for further staining and analysis.  But after they finished the procedure, the doctor said that it looked pretty likely that the mass was lung cancer.

I will have the official report of the findings, including just what type of lung cancer it is, in about 3 days.  There is a chance that my oncologist, Dr. Law, may be able to get an oral report sooner - perhaps on Wednesday.  So now we wait.

Background: How we got here...

The Short Version

Based on some tremors I was experiencing in my right hand starting June 8 and a single odd episode of speech disturbance on July 3, I saw my primary doctor and then was referred to a neurologist who suspected I was having partial seizures.  After an EEG and MRI test were performed, they found several small lesions in my brain.  An MRA (magnetic resonance angiogram of the blood vessels to the brain) and CAT scans followed, which revealed a small mass in my upper left lung.  The doctors suspected lung cancer that had spread to the brain.

The Longer Story

The first sign of something amiss occurred on June 8, 2010 when I was taking notes for several hours for a training session.  My right hand suddenly spasmed and jerked while I was writing.  This happened several times that afternoon.  Since that day, I have continued to have difficulty writing fluidly and have to concentrate on relaxing my arm and slowing down to keep my writing more legible.  I initially attributed this problem to fine motor muscle fatigue, but as I said it continues to occur and it also became more frequent and now includes trembling at times when holding a glass or even a fork full of food.

The next sign came on July 3 at a barbeque when I had about a 15-minute episode where I could not speak the words for common concepts that I could almost visualize in my brain.  It was very similar to a "tip of the tongue" situation, but I knew it was something different and could tell when it started and when it subsided.  The last minute or so of this episode included some tingling in the tips of my right fingers.  I thought this may have been brought on by dehydration, but checked the symptoms of dehydration on the web and found it was not a match.  My next concern was a TIA, which is a warning mini-stroke.  I sent an email to my doctor describing my symptoms.  As it was a holiday weekend, she was not available, but I received a reply on July 5 from one of the associates at the practice saying I should make an appointment.

I did not rush to make the appointment in part because I didn't want to make this a big deal and in part because I was in the midst of a very busy travel season for work and leisure.  I finally had my appointment with Dr. Caplan on July 23.  She thought the tremors were intentional tremors and the episode was not too serious, but worth looking into further so she had me go to see a neurologist, Dr. Mary Angelopolous.

I had my appointment with Dr. Angelopolous on August 11.  She suspected that the tremors and the episode with the speech problem were related and were possibly due to partial seizures.  She ordered an MRI with and without contrast, and an EEG.  I had the EEG on August 13 and the MRI on August 14.  I was scheduled to have a follow up appointment with Dr. A on August 20, after I returned from another week of business travel.

But instead, on Monday August 16, Dr. A called me at 9:30 in the morning saying she wanted to see me that afternoon at 1:00.  That's when I first knew there was trouble.  I called Doug who came home immediately from work to be there with me at the 1:00 appointment.  At the appointment, Dr. A told me that both the EEG and the MRI came back abnormal.  The EEG showed slowed reactions in both parts of the brain and some sharp waves, indicating that I was having seizures.  On the MRI, there were 4 or 5 small rounded lesions scattered across different parts of the brain.  These were apparent both with and without the contrast, but lit up with the contrast, indicating inflammation.  The possible causes she cited were cancer (most likely a secondary site), a blood clot that spattered in the brain, some kind of infection, or vasculitis (a swelling/inflamation of the blood vessels in the brain, potentially caused by some autoimmune disease).

Dr. A wanted me to cancel my business trip (I was to leave two hours after this meeting) and have more tests done ASAP.  I was very reluctant to cancel my trip, but ultimately decided I should.  So then I had an MRA (magnetic resonance angiogram that looks at the blood vessels in the brain) of the head and neck and a CAT scan of the chest, abdomen and lungs on Wednesday, August 18.  She also put me on anti-seizure medication since the lesions had caused some short circuits in the brain's electrical system that led to the seizure I had on July 3 and could cause other more serious seizures if left untreated. 

I had a follow up meeting scheduled with both Dr. Caplan, as my primary physician orchestrating all of this information, and with Dr. A, for Friday, August 20.

At the 11:30 meeting with Dr. Caplan on August 20, I learned that the CAT scan revealed a 2.5 cm x 1.4 cm mass in the upper left portion of my lung.  The mostly likely prognosis was lung cancer that had already spread to my brain. 

Dr. Caplan arranged for Doug and I to meet Dr. Theresa Law, an oncologist, that afternoon at 3:30.  At that meeting, Dr. Law showed us the film of the CAT scan where the mass appeared and told us it was very likely that it was lung cancer.

She said that due to the fact that it had already spread to the brain, there wasn't much likelihood that surgical removal would be of much benefit.  And because the lesions in the brain were so small and scattered in so many different places, surgery was unlikely for that as well.  She said the likely timeline was six months to two years.

She said the top priority was to reduce and control the brain lesions, which would likely be done with radiation and then possibly followed by chemotherapy, but this was getting ahead of ourselves.  The next step was to do a biopsy of the lung to determine if in fact it was a cancerous mass and if so, what type of lung cancer it is.  The biopsy was scheduled for August 23.  In the meantime, she prescribed a high dosage of steroids to begin to reduce the inflammation of the brain lesions.  The next step would be to do a PET scan to determine if the cancer had spread anywhere else.  This has not been scheduled yet.

We then had the weekend to try and process all of this information and start to share the bad news with family and friends.