December update

Team Survivor Benefit, November 2010

Hello family and friends,

Sorry it has been a while since I've sent an update, all is well. I am back at work now and feel great. I feel very healthy and my cancer continues to be stable.

December is a big month in the world of breast cancer as it is time for the annual San Antonio Breast Cancer Symposium, which is the most prestigious convention for researchers and doctors who work in the field. I met with Dr. Rinn today and asked her if there was anything new and exciting from the conference. She was frank with me and said most of the recent research studies demonstrate how little they really know. Breast cancer is a complex disease and seems to outsmart the scientists at every turn.
On a related note, it seems we have lost the battle to keep Avastin available as a treatment in the US. The FDA officially rules tomorrow, but early press releases say they will withdraw support of this important treatment. Here is an excerpt from the Wall Street Journal update:

Yesterday the Food and Drug Administration moved to revoke its regulatory approval of Avastin for metastatic breast cancer. Withdrawing a cancer treatment is almost never done, and though the decision was expected, that does not make it any less reprehensible.

The FDA said in a statement that it is removing Avastin's breast cancer indication because the biologic does not provide "a sufficient benefit in slowing disease progression to outweigh the significant risk to patients." Ponder that "sufficient." The agency is substituting its own judgments about clinical meaningfulness for those of practicing oncologists and terminally ill cancer patients.

The risks of Avastin are real, but manageable. Clinical trials do not show that the drug extends life overall in the aggregate, but they have shown that it allows women to live longer without their disease getting worse. Avastin improves progression-free survival by about four months on average. Different patients respond differently, and the drug is far more effective in some than in others, for reasons that researchers still do not understand. There aren't any perfect therapeutic options in end-stage oncology, and Avastin ought to have remained one of them.

Looking at the same data, the European Medicines Agency-the FDA's counterpart in the European Union-decided on Thursday that it would continue to approve Avastin for breast cancer in combination with chemotherapy. In October, the U.S. National Comprehensive Cancer Network-a consortium of 21 leading cancer centers that issues evidence-based medical guidelines-reaffirmed its position that Avastin is valuable in some cases.

Cancer treatment advances incrementally. Every year doctors are better able to pair medicines with the biomarkers pointing to the individuals who are most likely to respond and learn more about tumor angiogenesis, which is the process of cancer growth that Avastin helps to choke off. The FDA's assault will make it harder to conduct and enroll patients in further clinical studies, to say nothing of its message about the regulatory risk for drugs still in development.

The greatest tragedy will fall on the women who are suffering from an incurable disease and whose caregivers are trying to improve their quality of life in the months they have left. The FDA is taking away one of their only options.

FDA's decision on Avastin

Dear Friends and Family,

Some of you may have seen press coverage recently on using Avastin for metastatic breast cancer and you might recall that I was on Avastin from September through April with amazing results. Jake and I are quite concerned about the FDA's decision to disapprove the use Avastin for patients like me. The argument of the FDA is that Avastin doesn't show enough clinical benefit and it is extremely expensive.

Jake and I (and my oncologist) disagree with the notion that it doesn't show clinical benefit and we're fighting to sway the FDA. If you want to help, you can sign the petition located here. http://www.thepetitionsite.com/3/stop-the-fda-from-disproving-avastin-to-treat-metastatic-breast-cancer/

You can also email the FDA and encourage them to reconsider their decision.

margaret.hamburg@fda.hhs.gov
patricia.keegan@fda.hhs.gov
janet.woodcock@fda.hhs.gov
richard.pazdur@fda.hhs.gov

If you want to read more background on Avastin, here is a link to an opinion piece from the Wall Street Journal. http://online.wsj.com/article/SB40001424052748704271804575405203894857436.html

There's a lot of controversy about the clinical benefit, but I'm living proof that it is a powerful drug. Avastin seems to help certain patients, not all, but I think it is important to know it is improving the time between progressions for lots of patients (translation, it provides better quality of life even if it doesn't improve overall survival). It is extremely expensive (I think mine was about $24,000 per month), but chemo is expensive (Abraxane was something like $32,000 per month). It has potentially serious side effects, but so do all the other chemo drugs.

-Nancy

One year mark

It's been a while...here's a quick update and photo.

Hello again friends and family,
It has been exactly one year since we got the horrible news of my recurrence. We've adjusted to our new normal and all is well.

Thank you so much for all the support on my Mt. Adams climb. It was truly an amazing experience and an accomplishment cancer can never take away. I've learned over the past year that even though life isn't always fair, it is good. Jake and I are really happy and we continue to be so grateful for all of you.

My health continues to be stable. I'm having some aches and pains here and there, but who doesn't? I see Dr. Rinn on Thursday for my monthly Zometa treatment and I'm sure it is about time for another scan. I'll keep everyone posted if there is any news to report. Thanks again for your prayers and support! - Nancy

She Made it!

More photos and stories to come... Nancy, you are an inspiration!

Somewhere on the Mountain

Nancy is preparing for the summit later today now. There has not been any communication, but I hope she is feeling our thoughts and prayers. More Blog-worthy words to come...

(photo taken on Mt. Rainier training hike)

Two weeks to Mt. Adams

Hello friends and family! I had a great birthday on Saturday, thank you for all the emails and phone calls. I celebrated with my group from Team Survivor with another beautiful training hike. My favorite hike so far this year was a couple weeks ago when our group climbed to Camp Muir at 10,200 feet, the base camp on Mt. Rainier. It was a perfectly sunny, clear day and we had so much fun! Hiking on a giant snow field was really amazing and the most fun of all was glissading down the mountain (hiker-speak for sliding on your butt).

I have been off work for almost 10 months and it has really been therapeutic, but I am planning to go back the first of October. My energy level and health are good as Femara continues to work its magic while giving me a more normal quality of life compared to chemo. I'll continue getting monthly Zometa treatments (forever I guess), but the side effects are virtually non-existent and stay on Femara for as long as it continues to be effective.

THANK YOU again to everyone who has donated to my climb. There is still time to donate if you are interested.

Here is the donation link to Team Survivor

...and here is the link to our team blog where you can follow our progress.

Looking up

Hi everyone,

Things are going really well these days. My latest PET/CT scan shows the cancer continuing to diminish, so we can safely assume that Femara is working and we are continuing to gain ground toward remission. As I've said in previous posts, the goal is that I can stay on Femara for a long time (possibly years) before the cancer outsmarts it and we have to switch to something else (i.e. back to chemo). I continue to get monthly Zometa treatments, which are really easy and I have no side effects. It is amazing how the body adjusts - my first couple Zometa infusions back in Oct/Nov were pretty rough, but now I have a treatment on Friday and am out hiking on Saturday.
Speaking of hiking, THANK YOU to everyone who has contributed to the Team Survivor Mt. Adams climb. Everyone has been extremely generous, but there is still time to give if you haven't already. Go to http://www.teamsurvivornw.org/http://www.teamsurvivornw.org/, click on Mt. Adams Climb, and the link to the donation page is about half way down the page. We have a little team blog that documents our training hikes and eventually I'll use it to post pictures from the summit. The website is http://tsnwmtadamsclimb2010.blogspot.com/. The big event is Aug 9th - 12th. Please send prayers/vibes/wishes/thoughts/etc. for warm, dry weather. I am still trying to imagine how I'll be warm enough sleeping on a glacier, but as I keep telling myself, others have done it and lived to tell about it. Our base camp is at 9,000 feet, so it is likely to be below freezing at night, even in the middle of August.
Final comment - the woman standing behind me in the photo is the amazing Dr. Rinn. She is doing the Mt. Adams climb with the July group and will be a sherpa with my group in August, which will be really special. You can also read a little more about her and some of my fellow climbers by clicking on the Team Profiles link on the Mt. Adams blog.

A mountain to climb

I am continuing to train for the Mt. Adams climb in August and it is going really well. Last weekend we hiked 8 miles with 3,300 feet elevation gain. I hiked with a 22 pound pack, which was challenging but not impossible, so this week I'll increase my pack weight to 30 pounds. Eventually I have to carry 50 - 55 pounds, which is still mind boggling to me. Yesterday, I loaded a 40 pound bag of dog food in the car and thought about how heavy it was...can I carry that plus another 15 pounds on my back up a huge mountain for 4 days?!? I'm hinting to Jake that I may need a little sherpa help for the climb up to base camp.


Anyway, the photos are from last week's hike at the top of Mt. Si. From the top, we had a great view of Mount Rainier (middle photo).

I'll tell you more specifics about the Mt. Adams hike in future posts, but here's a link to our guide service, NW Mountain School. They have a great web site if you want to check it out.

-Nancy

Team Survivor NW

For those of you haven't heard, Nancy has hooked up with Team Survivor Northwest, an organization which provides physical activities free of charge to cancer survivors in the Seattle area. She is working hard to be ready for this, despite missing some training because of being knocked down by illness recently. She needs to raise $2000 for the endeavor, so if you did not know about this opportunity to support her, here is the link. Just scroll down to her name.

This past weekend Nancy teamed up with her fellow survivors and had a bakesale. That's a lot of muffins to get to 2k! Todat she is having a CT scan, and if she gets positive results, she'll be rewarding herself with a brand new ice pick (engraved, ofcourse)! Our prayers and thoughts are lifting you up, Nancy!

(Nancy is on the far left in the front row).

An update

Hello friends,



I transitioned to hormone therapy (as opposed to chemotherapy) about 6 weeks ago and so far, so good. The treatment is much easier to take since it is only a pill a day, though I still go in for monthly infusions of Zometa to treat my bone mets. I'll likely also have a scan this week to double check that the cancer is all stable or improving and will post something when we get results.

With a break from chemo, Jake and I decided to take a badly needed vacation. We ended up spending 8 days in beautiful Spain, where were did loads of site seeing and relaxing, but also celebrated with our friends, Brit and Jenny, who were married in a beautiful little fishing village on the coast. Their destination wedding was the main reason we picked Spain as a vacation spot and it was absolutely wonderful.
Unfortunately I caught a really awful bug on the trip home and have been sick for the past week including two visits to the ER. Thankfully, it is nothing cancer-related, just a horrible case of sinusitis. As of today, I'm finally getting a little better.

On a more positive note, I have joined up with a group of women cancer survivors through an organization called Team Survivor NW and have started training for a mountain climb later this summer. The goal is to climb to the summit of Mount Adams, the 3rd highest peak in Washington State at 12,500 feet. If I can stay well enough, I should be able to make it to the top! If anyone is interested in sponsoring me (this is a fund raising event for Team Survivor), you may do so at http://teamsurvivornw.org/index.php?pg=66. Click on the line "Click here to make a donation towards the Mt. Adam's Fundraising Climb" hyperlink and scroll down until you see my name. For those of you who have already donated, thank you very much!! The climb has given me a great goal to work toward and I believe physical activity is one of the best things I can do for my health.

-Nancy

Hi everyone,

After 6 long months of weekly treatment, I am officially done with Abraxane and Avastin. Hooray! My mom joined me for the 5-hour marathon chemo trifecta on Thursday, which went fine. She snapped a photo from my iPhone to mark the big day. I have felt a little sick this weekend, but once I get back on my feet we will celebrate.

I have to say a quick thank you to Jake. I think it is harder to be the spouse than it is to be the patient and he has been amazing. He handled a lot of the really hard things these past 6 months, not the least of which was dealing with our adoption agency, who disqualified us based on my health. Losing our Nina has been the hardest part of this journey, but as he continually reminds me, "Our family is complete."

We have such a great family and such a great life. Thanks everyone for following along and for your continued love and support.

-Nancy

Important day

Today Nancy had her last "triple crown" chemo treatment. I haven't heard from her yet, but these are very long days, and she tends to feel pretty cruddy following an entire day in the hospital. She'll begin a much milder (less side effects) treatment regiment. More details to follow....

Congratulations Nancy! This has been a long hard fall and winter, but spring is here!

CT RESULTS GOOD! Next step...

We had a good conversation with Dr. Rinn today regarding my latest CT scan. The scan shows all the tumors are either stable or improving. Based on that, she is comfortable with me switching from chemo to Femara in April. I will still come in for monthly infusions of Zometa for my spine, plus have scans, lab tests, and so forth, but at least I will be done with the weekly chemo routine. She was optimistic that Femara will continue to reduce the tumors and I'll be able to stay on it for a long time to come (possibly years). While I'm excited to have an end-date for chemo, it is a little daunting to think about "what next" since once I start feeling better I need to figure out if I can go back to work, etc. It is always hard to transition to a new normal and nothing about our current situation was part of our plan, so it'll be an adjustment for sure.



Thanks again to everyone for your continued support and encouragement. I imagine I won't be posting as much to this blog starting in April/May since there won't be quite as much going on (which is good!), so don't worry if you don't see updates from me. Another big thanks to Kate and Molly for keeping the blog going as it has been such a great way for us to communicate.

Steady in the fight...

Last week was another chemo triple crown of Abraxane/Avastin/Zometa. It went well, but does make for a long day. My blood counts were quite low, so Jake gave me a couple extra shots of Neupogen this week and as a result I've been quite achy, though I'm pretty well recovered now. I had a fun/relaxing breakfast with my mom yesterday (photo attached).

I'm scheduled for a CT scan tomorrow, which will hopefully show another drastic reduction in the tumors. We'll review results with my oncologist next Thursday and make a plan for transitioning to the next therapy, which will likely be Femara.

In other news, I have signed up to exercise with a group of other cancer survivors, which has been really fun. The group is going to climb Mt. Adams this summer and they have allowed me to tag along during the training. Dr. Rinn didn't clear me to do the actual climb, so I won't be able to participate in the big event, but I'm having a great time meeting other women and having a little structure to my exercise routine.
Thanks again to everyone for your continued support, it really keeps us strong having such an amazing network of family and friends. -Nancy

Note from Nancy

Hi all,
After a restful weekend in Palm Springs two weeks ago, it was back to chemo the past two Thursdays. As you saw from the pictures, Jake shaved his head in solidarity with me and now we are growing our hair back together. My hair has started growing even though I'm still on chemo, which I don't really understand, but I'm not complaining.

Chemo continues to go smoothly and we are doing well. This week I'll have another trifecta of Abraxane, Avastin, and Zometa, which has gotten easier to tolerate, then I'll enjoy a week off on March 4th. I'll have another PET/CT scan in the coming weeks and, depending on the results, we may be able to set the end date for Abraxane and Avastin. I don't want to get my hopes up too much, but I am crossing my fingers I might finish this chemo in March or April. After that I'll continue to have monthly infusions of Zometa to heal the bone mets in my spine (bone is the slowest to respond to treatment) and I'll switch to hormone therapy (still very powerful, but much easier to tolerate) and I'll stay on that treatment as long as it continues to work. I'm having a little trouble with my port-a-cath and there's a chance I'll have to have it removed/replaced, but I'm crossing my fingers that won't happen. It is no big deal medically, but it would be another procedure and another scar therefore a bit of a bummer.

Thanks again to everyone for your support!

Beautifully bald

Another chemo down... fighting this moving forward

Hello friends,

Another week, another chemo complete. I had the chemo Trifecta today of Abraxane, Avastin, and Zometa and it all went smoothly. The cancer center went live on a new on-line computer system this week and things were a little slower than usual. Wendy was sweet enough to join me again for a marathon session (we didn't finish up until after 6:30 tonight), but she kept me entertained with a card game and the time passed quickly.

The last couple weeks my doctor has been talking with me about participating in a clinical trial of a new protocol that sounds very promising, but as it turns out I don't qualify due to my previous recurrence/treatment in 2007. We were both a little disappointed because one of the drugs on the trial is only available if you are on the study. The nurses involved with the investigation apparently spent hours going over my chart trying to find a way for me to qualify, but in the end it just didn't work out. Bottom line, I will continue with the current treatment plan of chemo for a few more months then switch to hormone therapy, which is easier to tolerate and won't require weekly visits to the treatment center. We have every reason to be optimistic the treatment will be effective for a long time to come. Once I switch to the new treatment I'll only need to come in every month for my Zometa infusion, the remaining treatment will be a pill I take at home. I'll still have PET/CT scans about every 3 months and lab work, but compared to the current schedule of weekly treatment it should be a walk in the park. In other news, I seem to have developed a slight infection in my port-a-cath, which has caused a pain/irritation in my right shoulder/neck, so I'm starting a round of antibiotics. This is one of those normal little bumps in the road we've grown to expect.
Next week we are off for some relaxation and warm weather in Palm Springs with our friends, Nate and Luanne. We've timed my chemo so that I have next week off so I'll be able to enjoy the weekend even more. Can't wait! -Nancy

A couple days with Nancy and Jake (by Nancy's dad)

I’m Bill LeBoeuf, Nancy’s “Dad” and my wife Mary and I visited Nancy and Jake for a few days this week. Of course it’s great to visit their beautiful Shoreline home but the best part is to see Nancy as beautiful, enthusiastic and just plain nice as ever. We brought the Warm Sunny Southern California weather with us and had a chance to take some really pleasant exercise walks with her (unfortunately Southern California was hit with torrential rain, thunder, lightning and even a few tornadoes while we were gone!!). I got a chance to go with Nancy to a “chemo session” and got updated on all the things she and the bulldogs are doing.

Nancy and Mary collaborated on some delicious suppers at home and Jake set up the equipment for “Rock Star” and we all rocked out! Nancy and Jake were the true rock stars with Nancy on vocals and guitar and Jake on drums, but Mary was certainly right in there on vocals too. Poor Jake had to work but Nancy, Mary and I had a memorable lunch at Edgewater hotel after a beautiful walk through the sculpture garden overlooking the water in Seattle.

Blessings

"One of the silver linings of having cancer is that it shines light on what is most important." - Nancy Haunty a.k.a 'Mojo'

Faith. Love. Family. Friends. On my recent trip to be with Jake and Nancy, it was heartening to witness the outpouring of love and caring that surround Jake and Nancy. From the unknown neighbor who brought "sunshine soup" to their dear friends who provide a post-chemo resting place or those sweet friends who meet Nancy at the hospital to keep her company. You are their blessings!

I wanted to post some photos of some of Nancy's Seattle friends who threw a "Love Shower" for Nancy. It was a creative, memorable, uplifting afternoon of tender words, laughter, tears, (and song!) Thank you Kim for being so loving. (this says it all)

2010 first post

Dear friends,

I hope everyone had a wonderful holiday and New Year. We are still doing well and are encouraged by the scan results from Christmas Eve. We had family in for the holidays, which was wonderful and very low-key/relaxed (pics attached, you can even see a rare photo of me with a wig or "hair helmet" as I refer to it). I had the chemo triple crown of Abraxane, Avastin, and Zometa on New Year's Eve and then took this week off just to take a little break. I feel great (considering I'm on chemo) and am trying to continue exercising every day and get lots of rest. My previous two times on chemo (in 2002 and 2007) I worked (though on a reduced schedule), but I am a strong believer that not working is more beneficial to my health and I don't regret it. People keep asking me if I'm bored, but truly I am not. It is amazing the number of projects I can find to work on at home. Plus, let's not forget my favorite bulldogs, who love having someone at home all the time.

Thanks again for all the support and I hope everyone had a wonderful New Year!