Fall 2009: Jake and Nancy learned that Nancy's breast cancer was stage four. Winter 2013: They are still fighting. This is a gathering place to follow their story, offer support, love and prayers... to be by their side.



Friday, August 22, 2014

Chemo update

Hey everyone, thanks again for continuing to check in.  My latest chemo has been rough with terrible side effects, mostly tummy issues, but I've also had a lot of trouble with headaches.  I had to miss a treatment and my dose has been reduced to 60%, this is by far the hardest chemo I've ever had.  Side effects aside, the good news is it seems to be working as my tumor marker fell a couple points last week.  Hopefully we can figure out the right mix of dose/schedule and meds to counter the side effects and I'll get some mileage out of this drug.

I realized I didn't give an update on my last brain scan, which is basically fine, though one of the previously radiated lesions was a little bigger (could be scar tissue).  Since I have been having so much trouble with headaches, they decided to give me another scan yesterday and it looked stable, so that's good news.

Friday, July 18, 2014

New chemo starts today

Dear family and friends,
I finished my half marathon on Sunday and it was great!  Here's me with Coach Kit from Team Survivor near the finish line.

The race was just in time as I'm starting a new chemo today that probably won't be too compatible with running.  The new drug is called irinotecan (patients pronounce it "I-run-to-the-can", hahaha)...hopefully the side effects won't be too bad, but potentially this is a rough one.  As long as it is worse on the cancer than it is on me, we'll take it.
Next week I have a follow up brain scan, so I'll report back on that front.  Fingers crossed it will be okay. 


Saturday, June 28, 2014

Updates

Dear family and friends,
I had a scan a few weeks ago and the results were mixed, some of the tumors were shrinking, but others were larger and there was a new one as well.  Dr. Rinn, as always, had a few tricks up her sleeve and a plan.  She suggested getting tissue samples from the new tumor and one of the shrinking tumors to see if there was a pathological difference between the two that might be clinically relevant. Last Friday I had a liver biopsy and got the preliminary results this week and it turns out there IS a difference.  The new tumor is HER2 positive, which means I'm eligible for additional treatments like Herceptin.

In addition to the standard pathology tests, she also ordered genomic tests on the tissue.  It will take a couple weeks to get results, but potentially, the results might indicate whether I would be a candidate for certain experimental drugs available in clinical trails or through the compassionate use clause in the FDA.  More info to come, but that's the update for now.

In other news, Kate posted about my half-marathon training, which is coming along, though last week's liver biopsy slowed me down.  I'm scheduled to run 13 miles tomorrow and the race is July 13th.

Friday, June 13, 2014

Inspiring

Per usual, Thursday was a chemo day. Nancy headed downtown after lunch and was probably joined by Wendy who just sat with her. The exception to this particular Thursday, however, was that prior to getting chemo, Nancy had just finished her 10 mile training run.

Every now and then we hear one of those stories that moves and effects us in some deep, meaningful way. And every now and then, we get the privilege to be a part of that story or run alongside the main character. And we feel inspired. This story is about overcoming circumstances and doing something big. And it's about Nancy. A month from today, despite the need to start a new attack on her cancer which is constantly on the move, Nancy is running in the See Jane Run half marathon. Now the 5k would be a pretty big deal… but no, Nancy is running the 13.1 miles!!

If you're a runner, you understand that it's not just about the race. It's about the daily focus… pressing yourself and persevering the uncomfortable. Logging a lot of miles before the race. When the weather is bad, we still lace up our shoes. When we're tired or sore, we still head out the door, --because that finish line is in sight. But what all of us can only imagine, is what it's like to have the added burden of running each training mile, and running that race, with 4th stage cancer.

Although I can't physically be in Seattle to run alongside Nancy on July 13th, my heart is there with her. Thank you for inspiring me, Nancy.

-Kate


Friday, May 2, 2014

Amazing day - vow renewal



Dear family and friends,
My sis-in-law, Molly, submitted our story to a cancer charity that grants "wishes" and we were selected to have our dream of a vow renewal ceremony.  We were limited to 50 people, so it was a small gathering, but wildly exceeded our expectations!!

A sample of photos can be viewed at this link.

The video of the big day can be viewed here.

There was even a local news station that did a story on the event, seen here.




Monday, March 31, 2014

Overdue update

Dear Family and Friends,
Sorry it has been so long since I've posted anything, all is well.

I had a follow up brain scan today and, thankfully, it was clear.  We expected it to be fine as I haven't had any symptoms, but still it was comforting to get those results.  Chemo continues to go very well, seems like we've hit the jackpot with this one.  My tumor markers are nearly back to normal and the side effects are very doable, at times I almost forget I'm on chemo.

In other news, I am officially retiring from work.  I'm taking a medical retirement, something I probably should have done long ago, but I have been so fortunate to have a job that I truly love, it has been difficult to let go.  I will miss the people so much...UW Medicine has been incredibly gracious to both Jake and I with our need to take time off work.  One of the most extraordinary things is that my coworkers donated sick leave to me, which is humbling beyond words.  Jake and I went to a work-related dinner the other night (he was celebrating his 10-year anniversary with UW Medicine and I was celebrating my 5 year) and it struck us both about how lucky we are that our employer feels like family.

Lots of people have asked what I'll do now that I'm retired.  Mostly, I'm focused on my health (chemo and all that goes along with it is a lot of work), but hopefully I'll continue to feel well enough to pursue some additional interests like volunteering.  I'd like to do a little gardening this summer and, of course, the bulldogs are always game for attention.  Mostly I just want to spend quality time with Jake, friends and family.  I feel very lucky to be feeling so well after 2013 was such a bumpy year.

Final bit of good news.  My sis-in-law, Molly, submitted our story to a foundation that grants "wishes" to cancer patients and we were fortunate enough to be selected.  The organization is granting us a vow renewal ceremony, something Jake and I always dreamed about doing.  It will be a small gathering, but we are beyond excited about it.

Wednesday, December 4, 2013

Tumor markers falling

Dear family and friends, hope you all had a wonderful Thanksgiving.  We are celebrating with great news as my latest tumor markers are down 50 points versus a month ago.  Looks like Halaven is working!

Thursday, October 24, 2013

Clear brain scan, new chemo underway

Good news, my brain scan yesterday was clear.

I started my new chemo, Halaven, today and so far, so good.  Fingers crossed it will be effective.  Halaven is a fairly new drug (FDA approved 3 years ago), so there isn't a ton of data on it.  We're a little jaded because Afinitor, the last drug I was on, was touted as a big breakthrough in metastatic breast cancer, but didn't do much to slow my cancer.  Halaven doesn't have quite the hype that Afinitor has, but hopefully will work.  It seems like I tend to get more mileage out of the chemotherapies versus the hormone therapies, so hopefully that will be the case.

Sunday, October 20, 2013

Scan results - time to switch treatments again

Dear family and friends, Nancy here again.  I always feel a little funny writing posts on a blog about myself, but here goes...

My latest scan results are in and the cancer in my liver and bones is worse, so I'll be starting a new chemo this week.  The new chemo is called Halaven (aka eribulin) and word on the internet is it is not too awful in terms of side effects.  I have a brain scan this week to make sure the cyberknife was successful.  My memory is terrible, worse than usual, which is saying something for those that know me (!) and I'm having some pressure in my head, but no headaches, thank goodness.

THANK YOU for keeping up with all the ups and downs, everyone.   I'll post more when I get the results later this week.

Tuesday, October 1, 2013

The latest

Dear family and friends, Nancy here again, thanks for continuing to check in.  As Jake posted on the last update, I finished cyberknife and am glad to have it in the rearview mirror.  I'll have a follow up brain scan in about 5 weeks to make sure all is well.  I also meet with Dr. Rinn this Friday to talk about my systemic therapy of Aromasin/Afinitor.  I'm sorta' anxious to have a scan to know if it is working, but will defer to her expert judgement.  I feel okay, mostly just tired.  I've had a little trouble with mouth sores, but they are getting better.  I've had a few mild headaches too, but nothing like the terrible headaches of the past few months.

We had a nice visit with my Aunt Nancy and Uncle Rich this past weekend (I completely forgot to take pictures), but it was great to see them.  My mom, who also has stage 4 breast cancer, goes for surgery on her ankle next week, so I'll be taking care of her for a change.  Fingers and toes crossed the surgery will go smoothly and she'll literally be back on her feet soon.

Monday, September 23, 2013

CONGRATULATIONS GRADUATE!

Last week was a big week.

Nancy received 5 straight days of radiosurgery (cyberknife) treatment on the area of her brain where she had surgery this summer. As her radiation oncologist explained to us, the reason for the 5 separate procedures of lower radiation instead of a single treatment is like going to Hawaii. When you visit Maui from Seattle in January, you need to adjust to the sun. Spending 8 hours in the sun on your first day will result in a sunburn (this is a concept I have yet to remember when visiting Hawaii in January). However, if you spend an hour in the sun each day, there's a healing cycle in between each exposure. And no burn!

The area being treated was pretty close to the optic nerve, and if treated in a single dose of radiation there's a 10% chance that the optic nerve would be damaged. But with the 5 smaller doses and an opportunity to heal in between, the risk is reduced to less than 1% chance. So a week's worth it was. 

The treatments were fairly quick (20 minutes). She had her choice of musical genres and some quality time in the treatment room alone with the robotic arm and a mask bolting her to the table. Nancy found these treatments among the more anxiety-producing events of her battle to date. At certain points during each treatment, she experienced very unpleasant tastes and odors. And I suppose any experience where everyone else leaves you alone in a room behind a 14-inch metal door can be unnerving.

On the positive side, dear friends Luanne and Jenny each took a shift being with her during treatment and driving her. So it wasn't all bad.

 After the final treatment on Friday, Nancy was presented her diploma!

  by Jake

Tuesday, September 17, 2013

Cyberknife - day 2 of 5 complete

Hello again friends and family, thanks for continuing to check in on my never ending medical updates.  Today was day 2 of 5 days of cyberknife radiosurgery to mop up any microscopic cancer cells that might be left behind after my surgery in July.  It went well (big thanks to Luanne for being with me today and driving me home, prospective thanks to Jenny who will be with me tomorrow).

Cyberknife is a walk in the park compared to some of the medical torture I go through, but to be honest, it freaks me out.  I try to be brave, but once they snap the mask onto the table and close the enormous lead door, I get a mild panic attack and have to psych myself to be calm until it is over.  Today, mid way through the treatment, the computer stopped working and they had to reboot it or something.  The cyberknife robot arm was pointed straight at my right eye when the breakdown occurred, so I had to lie there while the robot eye opened and closed multiple times.  All I could think about was the possibility that they were accidentally nuking my head while the computer came back on line.  The staff were as nice as could be, giving me updates through the intercom, but still it was me versus the high beam radiation robot stare-down (wish I had better writing skills because I'm certain there is a funny story here).  Anyway, I survived and am doing perfectly fine tonight.  Two down, three to go.  Ready for a victory lap this Friday when I'm finished.

Here's a pic of the door (see how thick it is?!).

Thursday, September 12, 2013

Cyberknife scheduled

Hi again, Nancy here with another update.  My cyberknife radiation treatment is all set for next week.  This time it will be Mon - Fri, about an hour each day.   In non-brain-related news, I saw Dr. Rinn and we talked about my rising tumor markers.  She wants to stay the course with Afinitor/Aromasin for now because she doesn't think I've been on it long enough to know if it is effective.  We'll check my labs again in a month and see how things look.  If they are still rising rapidly, we'll do a scan and potentially change to a different chemo.  So far, the A/A combo has been a very easy treatment and it is nice to have be taking oral meds rather than going into the infusion center every week.

I'm still very tired, probably from surgery, maybe also from treatment, but am taking it easy and trying to get lots of rest.  Thanks again for all the support and well wishes.  Jake and I had a lovely anniversary dinner last night, then played cards on the patio while we watched the sunset over the water and mountains...made me think that in spite of having an awful disease, we sure do have a wonderful life!!



Tuesday, September 3, 2013

Labor Day weekend

Hello again family and friends, thanks for continuing to check in and keep us in your thoughts and prayers.  We've had mostly smooth sailing the past couple weeks including a great visit with friends last weekend and a fun weekend in San Francisco over Labor Day.

While it has been mostly smooth, I had another awful headache last week following issues with my right ear and had to go into the hospital for iv fluids, pain meds and anti-nausea drugs.  My medical team wasn't happy with this turn of events, so ordered scans of my head/neck and a lumbar puncture to make sure the cancer hasn't spread to my spinal fluid.  Huge thanks to Jenny and Wendy for transportation and company on short notice during my spinal tap.  The scans and lumbar puncture results were all good, which is great, though we don't have an explanation for why I'm still having headaches.  I had another headache today, but I am starting to figure out the right combo of meds to take, so felt much better after 6 hours and my nausea was kept in check (big improvement over the last headache that lasted something like 28 hours)

We are still waiting for insurance to approve the cyberknife treatment, but expect that will come through any day now and we'll get the procedure scheduled.  My tumor markers have been climbing, but Dr. Rinn thinks we should stick with Afinitor/Aromasin for now.  I meet with her on Friday to talk about next steps.

Thanks again for all the cards and well wishes.  Sorry I'm not good about calling and am way behind on sending thank you notes.  Please know we appreciate it more than we can possibly express.


Thursday, August 15, 2013

More updates

Hello again family and friends,
In spite of the bumps, we are still hanging in there.  Jake's back is a tiny bit better, though still really painful.  We are doing our best to take care of each other.

I had an informative appointment with the radiation oncologist yesterday to talk about post-surgery radiation options.  We talked about doing either cyberknife (targeted radiation) versus doing whole brain radiation and decided cyberknife makes the most sense.  I'll start it in about 10 days or so, after they get it cleared with insurance.  The treatment will run for 5 days straight, versus the single high dose treatment I had earlier this year, but otherwise will be similar, which is to say hopefully very easy, mostly I'll just be tired.  I hadn't contemplated whole brain radiation, but based on what he explained yesterday, it seems at some point we may cross that bridge and there's even an argument for doing it now to reduce the risk of other lesions popping up (my risk for this is quite a bit higher than I thought, something like 70%).

The scar from surgery is healing well and I haven't had any trouble with additional headaches.  My final dose of those awful steroids is today (thank God), so I'm hoping to feel back to my old self soon.  It has been smooth sailing on the combo of aromasin/affinitor, so hopefully I'll get a nice long run on it before needing further chemo.  Now that my black eye is healing up, I'll have to get some updated photos.

Sunday, August 11, 2013

Couple bumps in the road, but we're still going strong

No sooner had I posted how well things were going that I got my first terrible post-op headache in the middle of the night on Wed.  It came on suddenly and was quite severe, so I tried to wake Jake up to see whether we should call the doctor or tough it out, but it was nearly impossible to wake him up (he had a procedure earlier in the day for his back and was literally down for the count, not allowed to drive for 24 hours, so it was crazy for me to attempt it). Since I couldn't wake him, I took my pain meds, wrapped the heating pad around my head, and went back to sleep.  The next morning, I was still hurting and, because I'd taken pain meds on an empty stomach at 2am, had terrible nausea and couldn't keep anything down, not even a small sip of water.  After talking with the neurosurgeon's office around 8am, we were told to go to the ER to make sure I didn't have bleeding in the brain or some other horrid problem.  Quick CT showed a little swelling, nothing too impressive, but enough to give me a big dose of steroids, pain pills and anti-nausea drugs.  I'll follow up tomorrow morning with another CT and visit with the surgeon, but am doing much better now.

On a happier note, I went into the office on Friday for a social visit with my wonderful coworkers/friends.  Everyone kept commenting on how much color I had in my face and neck...wondering if I'd actually been on vacation in Hawaii versus out for brain surgery.  Turns out, it was those darn steroids!  I had a visit with Dr. Rinn right after and she noticed it right away, along with my puffy round face, which she assured me would go back to normal soon.  Amazing Dr. Rinn apologized for all the drama I've been through lately, but was incredibly reassuring (as she always is) that we will continue with the current plan of Aromasin and Affinitor.  She made me promise never to take percocet on an empty stomach again, even taking a couple crackers at 2am along with an anti-nausea med will be enough to ward off future trips to the ER.

As some of you know, Jake has been struggling with terrible back pain for four years now and while we are hopeful this latest procedure to cauterize the nerves in his back will help, he tweaked his back today and is in so much pain he literally can't move.  Since I'm on strict orders not to lift more than 10 pounds, you can imagine the comedy of me trying to "help" him get around.  We might as well be a couple old folks ready for the nursing home, but he toughed it out and is hopefully on the mend.

Thanks again for all the support and help...we really are doing well in spite of the ups and downs.  Here are a few of my favorite new photos, the bulldogs on top of Jonathan Adler ottomans (birthday present from my marathon of birthday celebrations), a photo of us pre-op on vacation in Santa Monica with my snazzy new wigh and enjoying birthday cake with friends.  Love to all, thanks again for supporting us!!




Wednesday, August 7, 2013

Post cranio update

Nancy here again, happy to report I'm still doing well, continuing to get stronger each day.  We met with neurosurgeon, Dr. Srinivasan, on Friday and she reiterated what Jake posted earlier, that the post-surgical MRI showed the tumor was gone and all looks well.  She also told us the surgery was anything but routine due to the location of the tumor and the amount of blood vessels.  

Again, I can't say enough about how loved and supported Jake and I feel.  The meal delivery service is amazing.  Also, since the surgery happened to fall on my birthday, I've had a marathon of birthday celebrations.

Thank you, everyone!  Here's the caregiver-in-chief!!


Wednesday, July 31, 2013

Surgery one week out

Hey everyone, Nancy here, feeling well enough to post a quick update to the blog.  THANK YOU to all of you, our dear family and friends for helping us through.  We honestly can't begin to express how grateful we are for the food, flowers, cards, gifts, visits, calls, emails, prayers and well wishes.  We feel completely supported and love you all so much.

I'm up and about, feeling well, and have very little pain.  The bruising is fading along with much of the swelling, the human body has an unbelievable ability to heal.  I'll post more soon, just wanted to let you know all is well.  Love to all.

Saturday, July 27, 2013

Letter from Jake: Day 3

Nancy's progress has continued. It seems that every time I go into her room, she is either gone (she was transferred to an intermediate care unit yesterday afternoon) or there are less tubes and wires attached to her. She has been awake and talking all day. I think she wanted to sleep, but I wanted to talk. She had her MRI this afternoon (good results). Her doctor just visited with some great news, she'll be discharged tomorrow morning! Nancy is ready to rest and recover in the comfort of her bed with her bulldogs and some home cooking (pita pizzas, peanut butter & jelly sandwiches). Oh, and Operation Lemon Cake was a huge success! It made her birthday celebration complete. Thanks again to everyone for your thoughts, prayers, and kind notes. Your support was pretty incredible and she was deeply touched. Have a great weekend! Jake

Thursday, July 25, 2013

Post surgery Day 1

Jake reports that Nancy is doing great today. Her pain is subsiding a bit, and she is recovering well from the procedure. Tomorrow her surgeon will use the cyber knife as a follow-up to the surgery, and she'll have an MRI. Rumors abound that Jake is covertly trying to smuggle in a lemon cupcake... things are looking good!Thanks for continued support, love and prayers!

Wednesday, July 24, 2013

July 24th

celebrating Nancy
Many of us woke up this morning with a heavy heart, feeling a little anxious, and scared. I know I did, and my phone's been going crazy as friends and family fire off thoughts and prayers, and little notes of encouragement to pass along to Jake and Nancy.

I know a lot of you are coming to this Blog for updates and information. I'm going to try to keep as current as possible with information.

Here's what I know now: Sweet friends of Jake and Nancy arranged a downtown flat for them to stay last night because Nancy was at Swedish yesterday afternoon for a baseline MRI and attachment of reference points to her head. They'll be used to guide the probe to the tumor today. The surgery will happen sometime this afternoon.

Today is Nancy's birthday. Don't worry!! She got her cake and was totally celebrated and loved on.
Monday night was a surprise meal at Canlis, and the weekend was an outpouring from friends. We are all by your side, Nancy and Jake...

Wednesday, July 17, 2013

The next mountain to climb

Nearly three years ago, Nancy loaded her pack and set out with Team Survivor to conquer Mount Adams. She endured harsh conditions, pushed herself mentally, physically and emotionally to the summit. She did it, and we all followed, encouraged, and celebrated with her, as she overcame this huge and really, really hard challenge.

As most of you know if you've been following this Blog, the past few weeks have been eventful, and Nancy's headaches have been quite bad. A brain scan last week indicated that a lesion has grown to the point that it needs to be removed. So a week from today, on Nancy's birthday, July 24th, she will undergo brain surgery to remove this tumor and then remain in the ICU for 3-4 days following the surgery.

 It's difficult to know how to support and love Jake and Nancy in the scary days and weeks ahead. We will be setting up a meal calendar upon her return from the hospital. If you would like to provide your support in this way, please email me at jacksonfamilytn@comcast.net so you can be included in the meal-scheduling email. In all likelihood, we will be working through a caterer to minimize traffic in their house while Nancy recovers.

 Thank you for your continued support for Jake and Nancy. This is one of those hard times in Nancy's cancer fight, so right now is when our thoughts and prayers mean a lot-- right now 'by Nancy's side'.

Thursday, June 27, 2013

Eventful few weeks

Dear family and friends, thanks as always for checking in and keeping track of all the ups and downs of our crazy journey.  As Kate posted on the last entry, I switched treatments and started a new chemo called Gemzar.  By all accounts, it should have been as mild and easy to tolerate as Navelbine, but it seems that I am allergic to it.  I've basically felt like a truck rolled over me for the past few weeks, lots of aches/pains, terrible headaches, and skin reaction....and now my hair is falling out in handfuls, which isn't supposed to happen.

We had a good meeting with Dr. Rinn yesterday and decided to go in a different direction.  We are going to try an endocrine (hormone) therapy called aromasin, plus a targeted therapy called affinitor (aka everolimus).  Affinitor is the drug I tried to get about 18 months ago, before it was officially blessed by the FDA, but had so many challenges with insurance we gave up.  Affinitor is now FDA approved, so we shouldn't have any problems.

My headaches are a mystery.  We are trying some different things to see if we can get them under control.  Dr. Rinn prescribed massage therapy, you gotta' love a doctor who orders you go to the spa! We're also trying a round of steroids.  My next brain scan is about a month out, so we'll see if that gives any helpful information.

In non-cancer news, we had a fabulous trip to Nashville to visit with family.  In spite of feeling a little under the weather, it was great spending time with family.  Our sweet little niece, Ainslie June, celebrated her first birthday with strawberry cake, made from scratch by Aunt Katie.  Niece Sadie, planned a birthday celebration with a hoedown theme...how adorable?!?  All the kids, plus Uncle Jake and Uncle Jimbo, played in the pool for hours on end in the wonderful warm sunshine.  It was wonderful to spend time with Kate/Grant and Jimbo/Molly for the weekend along with the kids.  Wish we had more time with them as we all live so far apart, but it sure makes us appreciate the time we do have.
Nephew Jack and Niece Sadie

Nephew Graham, Jake, and Nephew Duncan

Sis-in-law Molly, Nephew Jack and Niece Ainslie
Nancy, Ainslie, Graham, Sadie, Jack, Jake, and Duncan


Wednesday, June 5, 2013

new arsenal

Just a quick update to let you know that there has been a little uptick in Nancy's liver mets. Basically that means that her oncologist is switching her chemo meds as of this afternoon. Nancy and Jake are not discouraged, but as always, they are lifted by your thoughts and prayers. Specifically, that this new drug, Gezmar, will be effective. 

One of the hardest aspects about this fight is that period of not knowing-- waiting for results. But one of the many inspiring qualities about Jake and Nancy is their steadfast patience and perspective. This weekend, during one of those "wait for results" times, they got to do something really fun. They spent Saturday night ON Safeco field dining with Russell Wilson and other new Seahawk friends! 

I'm sure those players enjoyed their company.

(photo courtesy of the "super nice" kicker!!!) 



Tuesday, April 23, 2013

Sharing my story... (by Kate)

A week ago today, Nancy woke up at 2:45am to catch the first flight out of Boston Logan Airport, where she had come to Boston to cheer me on as I fulfilled my dream. As you can imagine, there wasn't much sleep before that alarm sounded. Neither of us ever imagined we would leave Boston with such heavy hearts.

A New York journalist picked up our story and shared it. We are both thankful to Wayne Coffey for putting words to this story.

Toast at the Ritz Saturday night.

Day before race at the start, right in front of where the first bomb went off.
Pre-race dinner in Little Italy (North End).

Monday, April 1, 2013

Happy Easter!

Hello friends and family,
Kate made me a contributor to the blog, so now I can post my own updates (thanks, Kate!).  I had cyberknife for my second brain tumor 5 weeks ago and it went smooth as glass with virtually zero side effects.  Modern medicine is truly remarkable.  I'll have a brain scan in another couple months to make sure it worked, but everyone is highly confident.

On the chemo front, Navelbine continues to be a winner.  The cancer in my liver, lungs, and bone are all stable or slightly improving.  The plan is to stay on it as long as it works.  A million thanks to Wendy, who faithfully joins me every week for 3 hours at the treatment center.  In other news, I decided to take a little break from work and will be taking the entire month of April off.  Ten months of weekly chemo have been exhausting, so it will be good to rest up and relax a bit.

I didn't mention this before, but my friend, Heather, who I met through the Under Armour Power in Pink, passed away on Feb 1st.  She was truly an inspiration and defined what it means to be a fighter.  She died in her husband's arms, exactly where she wanted to be.  Heather was diagnosed in her 20's and lived for 23 years with breast cancer, over 10 years with metastatic/stage 4 disease.  I miss her so much and can't tell you how much I'm inspired by her courage.  I carried a flag in honor of Heather when I climbed Mt. Adams in 2010, so I know my climbing friends feel like they know her.  Rest in peace, Heather.  Prayers and blessings to your family, especially your husband, Chad.

Thanks again to everyone for checking in on me and for your continued prayers and well wishes.


Saturday, February 16, 2013

Winter Update

Dear family and friends,
I've finished another round of scans and, in general, things are looking pretty good.  Navelbine continues to make progress on my liver, lungs and bones, so we are going to stick with it.  I booked my appointments out through June, which will be a year since starting this weekly chemo.  Hard to believe I've been on chemo this long and still feel great and continue to work full time.  

My brain scan showed an increase of the lesion we've been keeping an eye on, so the plan is to treat it with cyberknife.  The procedure hasn't been scheduled yet, but will likely be in the next couple weeks.

Aside from that, things are going really well.  We had a fabulous trip to Hawaii with our friends, Nate and Luanne.  We rented an amazing house, overlooking the ocean.  Nothing like warm, sunny weather to lift your spirits in the middle of winter.  We are very grateful for my mom, who took care of the dogs while we gone.

My friend, Wendy, continues to join me each week for chemo and I'm so thankful to have her company.  

Thanks for continued well wishes and support!


Thursday, November 29, 2012

Fall update


Dear family and friends,
Sorry it has been a while since I've given an update, things are going really well health-wise.  My latest CT scan looked great, the tumors in my liver are shrinking while my bone and lung lesions are stable.  My latest brain MRI looked fine, there was a tiny increase in one of the lesions, but the doctors are not worried, so we will continue to watch and wait.   The plan is to continue with weekly Navelbine.  My wonderful friend, Wendy, keeps me company every week, which is awesome.

Jake and I have had a wonderful fall/early winter.  We had a wonderful trip to Chicago in October for the baptism of our sweet niece, Ainslie.  She is adorable!  We had a nice Thanksgiving in Seattle with Jake's mom, Tanya, and my brother, Bill.  Jake cooked a turkey on the grill this year, which was delicious!

Thanks for the continued love and support.  

Thursday, September 20, 2012

September Update


Hello family and friends,
Hard to believe, but I’ve been on Navelbine for over 3 months now and it continues to go well.  I have a CT scan on Tuesday morning to ensure things are moving in the right direction, so fingers crossed with that.  We will review results with Dr. Rinn on Wed.  One of the crazy things about living with advanced cancer is learning to take life in 3 month gulps (the approximate amount of time between scans).  I’m also having the joy of brain MRI’s every two months, though we’ll hopefully be able to decrease the frequency of those at some point.  I didn’t really mention this on my last post, but they did discover another tiny brain tumor in the back of my head, but it is so small we are taking a wait-and-watch approach rather than zapping it with radiation.  The brain tumor that was treated with Gamma Knife back in April looks good.  I’ve got a slight dent in my head from where they attached the frame, which I swear is getting bigger and deeper (Jake thinks I’m imagining this).

In non-cancer news, Jake and I have had an absolutely fantastic summer.  After our Asia trip and wonderful visit with Kate and the kids, I was able to join my hiking friends from the Mt. Adams climb as they ended a 3 day backpacking trip in the Cascades.  It was fun to connect with such an amazing group of women – they are so brave!  Then, last weekend, we made a short visit to Columbus to visit Jake’s folks, which was great fun.  Next month we head to Chicago for the baptism of our new niece, Ainslie, which will be really special.

In July, Swedish featured us (including bulldogs) in a publication for their donors.  It was really an honor to be a part of this, here’s the link to the story.

Thanks for everyone’s continued love and support, 
Nancy


Swedish Foundation photo, by Nancy's Side...
Hike with Mount Adams team
A trip to Jake's hometown

Friday, August 10, 2012

Stable and enjoying summer



Dear family and friends,

We are having an awesome summer and I figured it was time for an update.


Jake and I went on an amazing vacation to Hong Kong and Thailand to celebrate the wedding of our dear friends, Jason and Wendy.  It really was a trip of a lifetime, traveling with friends is so much fun.   


After our trip to Asia, we had an incredibly fun visit at home with Jake's sister, Kate, and her three wonderful kids, Graham, Sadie, and Duncan.  It was so much fun to hang out with them and play tourist in our home town.  Jake's moniker is "Uncle Awesome" so he's got to back it up when the kids are in town.  We loaded up with Lucky Charms, nothing like a sugar cereal to win the hearts of our nephews and niece.   


In medical news, things are going well.  My latest scans look good and chemo is going smoothly.

Thanks again to everyone for your continued love and support!!!

Nancy with Kate and the kids having Seattle-summer fun!
Breakfast with Uncle Awesome: "Mexican style Lucky Charms" (just the marshmallows.)
"Aunt Awesome" and Sadie.


Saturday, June 16, 2012

Cancer on the move

In typical Nancy fashion, when she and Jake received some disappointing scan results, her positive, fighting spirit was NOT hindered. She writes:


Dear family and friends,

We've had an eventful couple weeks.  I had a scan last week and the cancer is on the move again, this time progressing in my liver and bones.  Dr. Rinn wants me back on chemo immediately, so Monday this week I got a new port and had my first infusion on Wed.  The latest chemo is called Navelbine, which is gentle as far as side effects.  I won't lose my hair and will be able to continue working full time, aside from weekly trips for infusions.  Navelbine (or Navy Bean as I like to call it) has a reputation for being well tolerated, some patients are on it for years.

On a much happier note, we had a photo shoot on Wed evening with a photographer from Swedish.  They are doing a story about us for one of their upcoming publications, which I will share when it is finished.  The photographer had the idea to take the photos with our friends and dogs down at the beach park.  Here's a link to some of the photos (note - won't work on iPad because it uses flash). PHOTOS -Nancy

Thursday, May 24, 2012

The WINNING Game

Nancy waits in the dugout, in typical Nancy fashion, stylishly sporting her honorary jersey...

She takes to the field and the crowd is going wild (particularly Jake and Nancy's friends)....
She winds up and throws the first pitch in perfect form... a "change up", which was a one bounce strike, no doubt....
And the Mariners won! Mojo- thanks for sharing YOUR Mojo- you are a winner!!! 

Monday, May 7, 2012

MLB HONORARY BATGIRL: NANCY!!!

It's official. Monday, May 21st, Nancy will be honored and celebrated for "going to bat" against cancer at the Seattle Mariner's game. A colleague and friend of Jake nominated Nancy with the following story, and she was selected! Go Nancy! You are such an inspiration! We love you, and you are my hero!

Nancy Haunty, the wife of one of my co-workers, has been going to bat against breast cancer for the past 9 ½ years. In 2002, Nancy was diagnosed with breast cancer. She had surgery, radiation therapy, and 6 months of chemo. Once Nancy's hair returned, went back to her 'normal life'. All was going well until 2007, when Nancy had a local recurrence of her cancer. This time, Nancy had a mastectomy followed by another 6 months of chemo. Following her treatment, Nancy and her oncologist chose to have a mastectomy on her unaffected breast followed by reconstructive surgery. She recovered well and 'took the field' in her cancer-free life. In September 2009, Nancy was diagnosed with terminal breast cancer: metastases in her liver, lungs and spine. Her 6-month treatment went well, and she 'took the field' again. Last week, Nancy learned the cancer had spread to her brain. She finds herself stepping into the batter's box yet again with a positive outlook and an Ichiro-like focus. Nancy has been going to bat against cancer for women in the Seattle area. She became actively engaged in local organizations that help women with breast cancer in real ways: financial assistance, caring baskets, and group physical activities. She even traveled to Washington, DC last year to testify to the FDA for a drug that hit a home run against her Stage 4 cancer. Nancy's passion is to support other women who are going through experiences that are like her experience with cancer over the past 9 ½ years.  


Tuesday, April 24, 2012

Gamma Knife


Dear friends and family,

This might be an entertaining blog post, I've got a couple Vicodin in me right now and am a little fuzzy (hopefully I won't regret using photos in this post!).  The Gamma Knife procedure went very smoothly today.  Aside from a headache and mild nausea, I feel amazingly normal and hope to be back at work tomorrow.

It was pretty fascinating how they do the procedure.  Once you are settled into a nice, comfortable room, the first step is attaching the frame.  The neurosurgeon numbed up four spots on my head using a generous dose of lidocaine.  Jake was with me the entire time and he said the lidocaine puffed up like giant horns on my forehead.  This part hurt, but was over fairly quickly.  Then they slip the frame over my head and start screwing in the pins.  The pins were enormous, see photo of it in my hand to give you an idea.  After the frame was attached, I was sent for an MRI.  If you look closely, you can see the tumor on the scan circled on the image with a cross through it and a rectangular tag, right behind the eye.  As the Radiation Oncologist described to me, the lesion is in prime real estate being close to the optic nerve (he referred to it as waterfront property), so the main concern was ensuring they only hit the tumor, not the optic nerve, which was near by.
Anyway, after the MRI, the team of doctors, neurosurgeon, physicist, and radiation oncologist work together to determine the precise treatment plan.  Once complete, they brought me into the room with the actual gamma knife, snapped my head frame to the table, turned on some soft relaxing music, and started the actual procedure.  I didn't feel anything and, in fact, slept through most of it.

Removing the frame was a snap and we were sent on our way.  We grabbed a little lunch, then I got home and slept most of the afternoon.  I woke up with a pretty bad headache and nausea, but it is under control.  All in all, not too bad.  I will have a follow up MRI in a month and hopefully that pesky little sucker will be gone.

The Rad Onc also suggested radiating one of the bone lesions in my spine.  He has been communicating with Dr. Rinn about this, so that will be something to possibly do in the next month or two.  

 Thanks again to everyone for all your well wishes and prayers.  And big thanks to Jenny for bringing us delicious dinner. - Love, Nancy

Friday, April 6, 2012

Here we go...

Dear friends and family,
We've hit another bump in the road and I wanted to give an update with the latest scoop.  I've been having some mild balance issues, so Dr. Rinn ordered an MRI of my head and it turns out I have a small brain tumor.  We met with the neurosurgeon on Friday who is recommending gamma knife, a radiation procedure, tentatively scheduled for April 24th.  My tumor markers are on the rise as well, so once we get the brain issue out of the way, we need to see if things have heated up anywhere else and need to switch treatments.

Jake and I are doing well and, as always, are so thankful to have a great medical team, and even more thankful for our wonderful support network.  I'll send more updates as we get more information.  Love and hugs all around.

- Nancy

Monday, March 5, 2012

March


Dear family and friends,

It has been a while since I've posted, so I thought I'd give an update.  Things are going well and we assume faslodex is doing the trick.  The knuckleheads at my insurance company are still refusing to cover everolimus even though Dr. Rinn thinks I'm perfectly suited for it.  The latest excuse is that the clinical trial data had Aromasin as the hormone therapy partner, not faslodex.  The implication is if I switched to Aromasin they would cover it, so perhaps we will go that route, we'll see.  I have an appointment this week to get my monthly zometa and faslodex and I'll see Dr. Rinn to discuss options.  I'm also due for a scan pretty soon.

I feel pretty well, though I'm having a bit more pain in my right upper quadrant and top of my right shoulder (referred pain from my liver).  It is hard to tell if it's getting worse, pain is so subjective.  It is never severe pain, but pretty unrelenting, which always makes me a tad nervous the cancer is getting worse.  On the other hand, my symptoms have never correlated with progression, so I'm choosing to believe everything is stable.

In non-cancer news, we had a wonderful trip last weekend to visit Kate, Grant and the kids in Nashville.  It was so much fun to hang out with them and spend time with our nephews and niece. We went to a concert at the legendary Ryman theater, which was  such a treat.  The kids are so cute and fun, we really had fun hanging out and playing with them.  My niece, Sadie, is such a sweetheart!  She surprised me with individual Get Well cards written by each of the kids in her class.  We stopped by her class on Friday last week and I got to meet all the kids - they made me feel like a celebrity!  
It was really special spending time with Kate (my awesome sis-in-law who maintains the blog).  She and I have always had an incredible friendship and I think of her as my sister.  She is beautiful and an amazing mom/wife/athlete...she is simply incredible and I'm thankful beyond words for all she does. 



Saturday, January 7, 2012

Latest scan results

Dear family and friends,
Jake and I had a wonderful Christmas Eve at the Seahawks game and fun New Year's Eve with friends downtown for dinner and fireworks.  

We met with Dr. Rinn today to review my latest PET scan.  In a nutshell, Xeloda has failed me, my cancer is worse so we need to pick another treatment.  I have progression in my liver, pleura and  bones.

I asked Dr. Rinn if it would be okay to try a hormone therapy since I'm working full time and am enjoying my work so much that chemo would really slow me down.  She agreed and said it would be okay to try faslodex, but wants to "Keep it on a short leash", meaning she wants to watch me very closely with scans and lab tests.  If the hormone therapy isn't working, she wants me to go back to chemo.

So…bye bye Xeloda, hello Everolimus/Fasloxex!

Faslodex is a commonly prescribed hormone treatment, but adding Everolimus is a new twist and, according to very recent research data, greatly improves progression free survival.  A quote from the recent research, "Everolimus is the most important advance in breast cancer treatment since Herceptin."  Everolimus for breast cancer is still considered off-label (non-standard), so Dr. Rinn will be fighting with my insurance company this week to get it covered. 

Thanks again to everyone for your support!! - Nancy

Seahawks game Christmas Eve Day

Friday, December 16, 2011

SCAN RESULTS

Dear friends and family,
My latest scan results are mixed and difficult to interpret.  Of the 7 visible tumors in my liver, 2 are slightly larger, 2 are slightly smaller, 2 are stable, and 1 is new.  We need a PET scan to really see what is going on, so I'll have a follow up scan in a couple weeks.  The glass-half-full scenario is that the increased size in the tumors is due to the chemo working, not the cancer getting worse.  Dr. Rinn said she learned this lesson long ago with liver tumors that sometimes you have to be patient.  She was not alarmed at all, just a bit disappointed that we didn't see the same response I had with Abraxane/Avastin, but she said to hold fast with Xeloda and give it a little more time to work.

I feel great, very few side effects, and I have to say this might be the easiest chemo I've had.  I'm a little bit tired and nauseated, though the latter is controlled with meds.  My hands and feet are good, just a little more dry than normal, but Udder Cream works miracles.  I'm still upbeat that Xeloda will do the trick and agree with Dr. Rinn that we just need a little more time and a little more data from the scans.  

Thanks to everyone for your continued support!!

-Nancy

Sunday, December 11, 2011

Status check

Happy Holidays!
Dear friends and family,
All is going well on my new chemo regimen of Xeloda and cytoxan.  I have mild nausea, I've figured out how to control it.  I end up taking about 15 pills a day, but it is easier than having weekly chemo infusions.

I've got a CT scan on Tues this week and visit with Dr. Rinn on Thur to discuss results and get my monthly zometa infusion.  Fingers crossed, the Xeloda is working, so I hope to post good results later this week.
Thanks again to everyone for your continued support and well wishes.   We appreciate it so much!!
Love, Nancy

Thursday, November 17, 2011

Team Survivor NW benefit is a success!


Nancy and Jake were surrounded by friends and family on Saturday night as Jake took the podium and shared the story of Northwest Team Survivor's impact on their lives. An amazing night of love, laughter and tears.

Sunday, October 16, 2011

Team Survivor NW Benefit

Jake and Nancy want to invite you to join them for the Team Survivor Gala to be held next month. It is going to be an incredible night, and the best part is that Jake is the featured speaker!!!! Come show your support and love. Tickets are $75 and are available online.



Tuesday, October 4, 2011

Getting started again...

Dear family and friends,

Thanks to everyone for your well wishes with our latest health news. We met with my doctor last week and came up with a plan. I will be starting an oral chemo regimen of Xeloda and Cytoxan and continue with monthly infusions of Zometa. Dr. Rinn recommended this chemo over going back to Abraxane/Avastin because it will be much easier to keep working if I can take all my chemo from home and the side effects should be milder, though totally different than what I've had in the past. I won't lose my hair with this chemo and hopefully won't be as tired. The main side effect is hand-foot syndrome, which is peeling and blistering of the hands and feet.
We will give this a shot and then have scans again in a couple months to see how it is working. Thanks again everyone. Nancy

Monday, September 26, 2011

Time to fight again...

As some of you may already know, Nancy's cancer has "outsmarted" the treatment, so it's time to fight again. Nancy sent the following note along with a photo of her on a hike yesterday with some Team Survivor friends. Thank you for your continued prayers...


Dear family and friends,

My latest PET/CT and bone scans showed progression of the cancer in my bones, liver and pleura, so it is time to switch up treatment. We meet with Dr. Rinn on Thursday to figure out which chemo cocktail is next. She mentioned either going back to Abraxane/Avastin or trying an oral chemo called Xeloda. Lots of choices and weighing the pros and cons of each. We're disappointed at the latest news, but ready to roll up our sleeves and get going. I've had a terrific run these past two years and am incredibly thankful treatment has worked so well in spite of this latest bump in the road.


Thanks to everyone for your continued love and support. I'll continue to send updates as next steps become clear. By the way, insurance companies are continuing to pay for Avastin, so even though we lost the proverbial battle with the FDA, I think it is fair to say we won the war. If going back on Avastin is the next step, we are fairly confident (thankfully!) it will be covered by insurance.
Love, Nancy

Tuesday, July 5, 2011

Return from Washington

Photo taken from NPR piece.
Dear Family and Friends,


Jake and I returned from Washington DC on Thursday after giving public testimony at the Avastin hearing. It was interesting and emotionally draining all at the same time. If you want a challenge, try condensing my complex medical history into 3 minutes while convincing a panel of experts who have already made up their minds. I can't really box up the arguments into a short post, so grab a cup of coffee, this is a long read.

For starters, the FDA is convinced there is no benefit from Avastin and that it's a dangerous treatment. This did not sit well with patients in the audience, especially the ones who have been living on Avastin alone for years. If patients' anecdotal evidence is not enough, consider that the National Comprehensive Cancer Network (NCCN), an alliance of the world's leading cancer centers, has unanimously affirmed the use of Avastin for metastatic breast cancer looking at the same clinical data. The NCCN is comprised of breast cancer experts, quite a contrast to the FDA panel, who had no breast cancer expertise. Thankfully for us, the NCCN, not the FDA, sets the reimbursement guidelines, so Avastin will continue to be covered by insurance at least for now. Still not convinced? Consider that the European equivalent to the FDA not only affirms the use Avastin, they just expanded their clinical guidelines to use it with additional chemotherapy partners, again using the same clinical research data.

The FDA argued that Avastin does not improve overall survival (we agree) but, importantly, does not improve progression-free-survival to a statistically significant degree (we disagree). Genentech argued that the progression-free-survival benefit is demonstrated by the data, statistically significant, and, more importantly, clinically meaningful. Jake and I could not agree more.

So what is progression-free-survival (PFS)? It is the time it takes for the disease to get worse. Stated another way, it is the amount of time it takes for the cancer to outsmart treatment and start growing again. I have yet to experience my first progression since being diagnosed 21 months ago, which is far longer than the median statistics, particularly given my situation (heavily tumor burdened, aggressive disease including multiple large tumors in my liver, considered the most deadly). I am nearly symptom-free from my cancer, which is amazing considering the round-the-clock pain I was in when I was diagnosed and the broad extent of my recurrence. Progression-free-disease translates into quality of life. To drive home this point during my 3 minute testimony, I put up a photo of me standing on top of Mt. Adams. Experts might argue over the extent of progression free survival benefit, but all of the studies have concluded their IS a PFS benefit with Avastin.

Regarding safety, the FDA was relentless in talking about the dangers of Avastin, which was so frustrating for the patients and breast oncologists in the audience. Avastin does cause a rise in blood pressure (easily managed) and causes bleeding (i.e. nosebleeds). Avastin has fewer, less toxic side effects than most of the chemos I've received over the years. A very small number of patients may have serious side effects such as pulmonary embolism, but that goes with the territory of cancer treatment. All cancer drugs are poison. You just have to hope the poison is more effective at killing the cancer than it is at killing you. As many of us joked during the trial, we prefer the side effects of Avastin to the side effect of death.

My cancer is incurable and very few if any treatments have proven, statistically significant survival benefit. The best we can hope for is to increase time between progressions.

Here's a quote from MD Anderson that sums it up..

The woman whose breast cancer has metastasized or who has been diagnosed initially at Stage IV must live with the reality that her breast cancer can no longer be cured, and that the disease is very likely to take her life. Consequently, the length of the remaining time she has to live, and the quality of that time, become issues of paramount concern. For her, access to the best care can make a significant difference, both in length of survival and in quality of life. With luck, excellent care, family support, personal motivation, and a skillful oncologist, her disease is likely to respond to a number of lines of treatment that can serve to extend her life-many of which may be quite costly. She may join a clinical trial, or try to get compassionate access to experimental drugs prior to their approval through single-patient INDs or expanded access programs.
Whatever path she chooses, she will be in treatment for the rest of her life, and she will require close follow-up, which will include costly scans and other tests. As her disease progresses, she will need pain-management and control of her other symptoms, and she is likely to undergo several hospitalizations to deal with particular crises in the course of the illness. Eventually, she will need hospice care.

The hearing was really frustrating in that the FDA was indifferent to our pleas. Several of the folks on the panel were so rude during the hearing they were literally reading their blackberries during the public testimony. As Jake commented, "I would have appreciated being patronized because at least we would have been acknowledged." So true! We were completely ignored on the first day and treated like we were wasting their time.
Much has been made about the cost of Avastin. Like other treatments, it is expensive, but certainly not outside the norm for oncologic therapies. When I was receiving Avastin, it was about the same price as paclitaxel (Abraxane) on a monthly basis. Cancer treatment is expensive, but we are thankful that it is available since the benefits in terms of quality of life are easily justified.
http://www.foxnews.com/on-air/journal-editorial-report/index.html#/v/1035619

Tuesday, June 28, 2011

TESTIMONY TODAY

Those of you who have registered for the FDA hearing, Nancy is #4 and will provide testimony at approximately 8:15 AM EST this morning. The links are provided in the post below.

Monday, June 27, 2011

Nancy to give testimony at FDA hearing on Avastin

We are all so proud of Nancy and are thinking of her and Jake as they travel to Washington DC this morning because Nancy will provide testimony at the FDA hearing on Avastin. The hearing will take place tomorrow, and Nancy will have three minutes to tell her story. There will be a live webcast of the testimony for us to watch, but in order to gain access, you need to pre-register.

We are all with you in spirit and are confident you will be remarkable because you ARE remarkable, Nancy!Her acceptance to participate in this important event was based on the following letter:

Hello Ms. Williams,



I am living with stage 4 breast cancer and was successfully treated with Avastin and Abraxane (paclitaxel). I am interested in publically testifying in June and am trying to understand whether I would be assured a time slot. I will be flying from Seattle at my own expense and don’t want to book flights/hotel unless I’m certain that I’ll have a chance to speak.


I’m 41 years old and have extensive metastatic disease, with multiple tumors in my liver, lungs and spine. At the time of my stage 4 breast cancer diagnosis in September 2009, I was in agonizing pain, had 42 tumors in my lungs, 14 tumors in my liver, and 2 in my spine. After 8 months on Avastin/Abraxane, my tumors were reduced significantly, my pain was nearly eliminated and my quality of life is excellent. I tolerated Avastin extremely well, with very minimal side effects. Even while on this treatment, I actively participated in vigorous hiking with a group of cancer survivors and even climbed to the top of Mt. Adams, elevation 12,276 feet.


I would welcome the opportunity to share more about my experience as I believe I may need to use this treatment again when my cancer progresses and I run out of other treatments. I’m also concerned for the woman diagnosed tomorrow who won’t have this powerful treatment available.


As you know, most cancer therapies have dangerous side effects and can be extremely expensive. I’ve had many chemotherapies and treatments over the past 9 years since my original stage 2 diagnosis in 2002 including Adriamycin, Cytoxan, Taxol, Methotrexate, 5-FU, Zometa, and radiation. All of these treatments have had dangerous side effects and required additional medications and medical monitoring to ensure the treatments themselves didn’t cause my death rather than the cancer. I’ve had the usual list of side effects, neutropenia, nausea, hair loss, fatigue, peripheral neuropathy, and so forth. Damage from the Adriamycin and radiation treatment is still visible on my scans today. When my oncologist had me sign the consent form for Avastin, it frankly seemed pretty mild compared to other therapies. My blood pressure did go up a couple points and I did have a few bloody noses, very trivial side effects compared to what I have experienced from other drugs. From a cost perspective, Avastin was about the same price as these other treatments and was thankfully covered by my insurance. I estimate that I’ve had close to $2M in treatment, surgical, and diagnostic expenses over the past 9 years, the cost of Avasin was perhaps 1 - 2% of the total (rough estimate).


Thank you for your consideration. I am happy to provide more details if needed.


Sincerely,
Nancy Haunty

Friday, May 27, 2011

Jake's Speech

Hello family and friends,


As some of you know, I have participated in the past in a fashion show for a local breast cancer organization, but this year, Jake took the stage and gave a beautiful speech. The video company that recorded the event was kind enough to post it to YouTube for us. Here's the link. http://www.youtube.com/watch?v=F1SKlbQOaUE

Sunday, May 8, 2011

National Breast Cancer Coalition NBCC - Washington DC


The trip to DC was energizing, educational, but also discouraging and frustrating. I met lots of amazing women and I was able to network with scientists, doctors, and public policy makers, not the least of whom was Susan Love, MD. ALL women should sign up at Dr. Love's website The Army of Women, regardless of whether you have breast cancer. The goal of her organization is to enroll large numbers of women into research studies, so if you enroll there is a chance you'll be called upon to participate in a study.


The National Breast Cancer Coalition (NBCC), the group who put on the conference and organized lobby day on Tuesday, is an influential, albeit controversial group. They are trying to change the conversation away from pink ribbons, awareness, and early detection to prevention and ending the disease once and for all. I was surprised to learn their position on several issues including Avastin (they applaud the FDA's decision), they are opposed to screening mammograms on women under the age of 50 (yes, 50), and they even oppose breast self exams. Pretty shocking, right? Conventional wisdom about early detection is not the answer, women are dying from breast cancer at the same rate they were 20 years ago. I found myself going back and forth in throughout the conference, trying to decide if I can get behind this group or not. In the end, I am throwing my support behind them and, in fact, am trying to wiggle my way into a position of being able to provide leadership and influence.

During one of the workshops led by Dr. Love, I was able to ask my question, "I have metastatic disease with liver, lung and bone mets. I am a super responder to Avastin, help me understand the FDA's decision." She handled the question well, citing cost (I appreciated her honesty) and said public policy cannot support a very expensive, potentially lethal drug that shows no benefit in overall survival. I argued back that a small number of patients do seem to benefit from the drug, including me. I later learned just how political the Avastin debate really is. The Avastin decision is a shot in the wheel house of Genetech/Roche. The FDA is trying to send a message to Big Pharma to encourage them to figure out who will respond. Too bad individuals like me are getting caught in the crossfire.

There was a lot of bashing of the pharmaceutical industry and our current broken healthcare system. As we all know, there is plenty of blame to go around. The universities and academic medical centers are part of the problem since researchers' incentive is to publish papers, not help patients. Likewise, government funding of research discourages innovative ideas and encourages safe research with predictable results. Biotech and drug companies have an incentive to produce treatments that are profitable, not necessarily those that will end the disease. The only party at the table interested in ending breast cancer is the advocacy community, so I plan to do what I can.

Lobby day was especially disappointing and I left feeling that our government is completely impenetrable. I don't think I'd bother to do that again and don't even feel compelled to send letters or emails to lawmakers because I think it is a waste of time. It was interesting to be on Capitol Hill and walk the halls of the Senate and House office buildings, but that was about it.

I'll end on a brighter note. The highlight of the conference was the Emerging Leaders program of the NBCC, a group of young, articulate women who are future leaders of health policy. It was refreshing to see gals in their 20's using their talents and energy to support the mission of NBCC. Next steps for me will be to connect further with these young women and encourage them to continue fighting. I also might go back to DC in June for the hearing on Avastin. Even the most staunch Avastin opponents at the conference encouraged me to do this, saying that there has been a precedent of the FDA overturning their decisions based on patient feedback, so we'll see.

Long post, sorry about that, my brain is just so full of new ideas I had to share.