With rare cancers, information and support can be hard to find


Les Mahler

Most any diagnosis of cancer is filled with worry and bad thoughts, but when the cancer diagnosis comes with the words that it's a rare cancer, the words are more than devastating, they're horrifying and nerve-racking.

How rare, what's the prognosis, why me, what did I do, what can be done and what are my odds or chances on recurrence and dying?

At least that was my reaction when I was told in 2007 that the tumor behind my right eye was adenoid cystic carcinoma; the more difficult part was the pronouncement by the oncologist that the cancer was incurable and fatal. "You will certainly die because of the cancer."

Wow, could it have been told in a gentler way, without the windows closed and dark curtains drawn all around?

After the surgeons and oncologist left, I took a half hour to myself and cried, uncontrollably. I needed that time to understand the magnitude of what had been said to me, and then I straightened up, took a deep breath, looked around and realized I was still alive and the cancer was just a disease like any other disease. All I had to do was find out more about the cancer and try to live life as best as possible.

The problem was gathering information about adenoid cystic carcinoma is that there's such scant information out there. Plus, what information is out there is sometimes so outdated and wrong.

For example, how many people are diagnosed each year with ACC, is it 1,200 or 1,500 or a lesser number? And what are the survival rates in terms of years? Different sites, different information. I wondered should I just pick my own numbers.

The other problem was finding an oncologist who had at least some experience with this type of cancer. The first one put it very bluntly, "30 years as an oncologist and you're my first ACC patient; I can't help you."

The second oncologist put it more mildly, "I know nothing about your cancer. I'm flying blind and learning as we go along. You probably know more about this cancer than I do."

My third and current oncologist hasn't said what he knows about this cancer, which I guess is good. During a visit, I did ask him if he's treating me like any other cancer patient, wondering if this cancer is different than other cancers.

It sure looks as though he's treating my cancer like any other cancer, with the standard six months between tests and check-ups.

I did pick five years as the starting number for survival rates; that sounded good but by 2012, a new tumor had been found pushing against the brain. It actually started growing in 2011 but it was missed, even with the MRI and contrast.

My oncologist gave me the bad news, there's nothing that can be done, surgery is out because the tumor had grown around a major blood vessel. If we tried surgery, I would die on the table. Oh, not good.

Chemotherapy has never been and was not an option with ACC because the cancer is so relentless.

It was almost as though the oncologist didn't have an answer; that he was at the end of the rope: and then, one last hope, radiation. But how much and how long, and would it be safe considering I had had radiation in the same general area in 2007; plus, this time there would be radiation to the brain. Thank God for Stanford.

Their recommendation, eight weeks of daily radiation and all will be good to go. Of course, with this cancer there is no good to go, ever.

On Jan. 2, news came that a growth had been found in the left lung; for now it's all observation and then a fine needle biopsy (I had that done for the eye in 2007, so no worries there).

What I've discovered in my cancer journey is that there is no ready-set information about adenoid cystic carcinoma. Yes, it is a rare cancer, and as such, there is little information out there on how to treat it and what to expect.

Also, there is little research being done leaving ACC patients to wonder why? Is it because this cancer affects so few? I know many ACC patients feel like we're the pariah, the black sheep of the family. I have noticed that ACC patients themselves have started their own websites for information on this cancer; only we understand what we're going through so it would stand to reason that we'd reach out to help each other.

We have several sites on Facebook, where we exchange information and often support each other as we fight this cancer; the sad part is so many new people are joining these sites and then there are the ones we say goodbye to...too often and too many. As for me, I am spending time with childhood cancer patients and helping raise funds for research.

Les Mahler is a journalist, copy editor, song writer, children's story writer, photographer, and an adenoid cystic cancer survivor since 2007. He's on his third fight against ACC.


The road from caregiver to advocate


Katie Brown

Many people don't know that lung cancer is a disease that can affect anyone. One in 14 people will be diagnosed with lung cancer and over half of those diagnosed will be people who either quit smoking decades ago or who never smoked a day in their lives. Lung cancer can happen to anyone regardless of age, gender, race, health or smoking history. Its patients have felt stigmatized, neglected and unsupported in their communities. Lung cancer is the least funded cancer even though it kills more people each year than breast, prostate, pancreatic and colorectal cancers combined.

These were the statistics I read while Google searching the disease that had suddenly invaded our lives. I had fallen into the role of caregiver and patient advocate without any warning or training manual. It was the hardest job I've ever had and at the same time, the most rewarding.

When my dad was diagnosed with lung cancer in 2002, his diagnosis came out of the blue and we had no local support. The isolation of a lung cancer diagnosis was intense. With little treatment options, incredibly low survival rates and no support or resources specially for his disease, the odds of survival for him began to plummet. This was our devastating reality 10 years ago. My dad died 11 months and 21 days after his diagnosis and he fought fiercely to live every one of those days. I promised my dad then that I would never stop working to support those affected by lung cancer. And I haven't.

Today, 11 years later, I am the director of support and advocacy for the largest lung cancer nonprofit in the nation, LUNGevity Foundation. I have created and managed support programs for people impacted by lung cancer and survivorship conferences that take place nationally and regionally. But it's been a long road of advocacy.

I encourage people who feel a calling or mission to become advocates for what they believe in to make a plan and stay the course. We need more of you in the cancer community to be the voice for those who can no longer speak.

I do have a few pieces of advice:

Take care of yourself.

While you are caring for the life of someone your love, don't forget to take care of yourself. You won't be useful to anyone if you are burned out and exhausted. Fighting cancer and fighting for someone's life is incredibly hard. Mistakes get made when we are tired or emotionally charged. Don't forget to take care of yourself. You'll do a better job at being a caregiver to someone else if you do. Take care of yourself and ACCEPT help from others.

Find the unmet need.

In my case and with a disease like lung cancer, our immediate unmet need was support for patients and families. Eventually that turned into access to information about the disease and treatment options and more funding for research so that there can be more survivors. All of those unmet needs put together are HUGE but taken a bit at a time they can be addressed. I'm not a researcher or a doctor, but I can navigate a patient during their journey to find the answers they may be looking for. I wasn't a social worker or therapist, but I could create a peer to peer support resource for people to walk the lung cancer journey together and build ways in which patients and families could help themselves. Find your unmet need and come up with an action plan to address it.

Connect with others.

There are other caregivers, family members, survivors and advocates who share your passion to advocate for your cause. Seek them out and connect with them on message boards, websites, and advocacy groups in your local community. Have phone calls, twitter chats, and meetups to discuss ways you can raise awareness and make an impact. If one person can make a difference, image what a group of like-minded people can do!

Be gentle on yourself.

I wish I would have taken this advice more. As caregivers to those we love we tend to take every victory and every setback personally. We also sacrifice our health and needs while caregiving. I remember when my dad passed away thinking that I hadn't done enough to "save him", as if anything I could have done would have stopped the progression of his cancer. "I didn't search the internet enough. I didn't explore 3rd or 4th opinions. I didn't tell enough jokes, pray enough or keep up a positive attitude 100 percent of the time. He didn't try alternative therapies." And a dozen other what-ifs and second-guessing-myself thoughts that flowed through my mind.

Today, I know the outcome would have been the same no matter what I did then, and from that experience I take away the precious memories and moments I was able to share with him as his caregiver and his daughter.

Looking back now I know the landscape of this disease enough to know that having access to information and treatment options, access to clinical trials and medications for side effects will make the road smoother for someone else. I know that having others to talk to can alleviate feelings of fear and guilt and isolation. Those are the unmet needs I've been trying to address.

Seek out support for yourself and your loved one while you are actively walking through cancer. And when you are no longer caregiving and ready to be an advocate, surround yourself with others who believe in your cause, will support you and help you to succeed.

Finally, don't lose hope.

Even if things don't work out exactly like you planned, don't lose hope that one day there will be more. More support, more treatment options, more awareness, more research and more survivors. I absolutely believe that there isn't anything greater than hope. It picks you up when you've been knocked down. It hugs you when you feel defeated, carries you when you receive good news, and it's the whispered promise that everything you have done and everything that you will do, matters.

Katie Brown is the Director for Support and Advocacy for LUNGevity Foundation.


Silicone implants and a pouty lip


Carrie Corey

No, I'm not a celebrity – I'm a breast cancer patient.

For people living with metastatic disease, oftentimes medicine side effects are worse than the symptoms of the cancer itself, and such is the case for me today.

Two weeks ago I started taking a new drug (Afinitor) that studies have shown can dramatically increase patients' response time to my current medication (exemestane). As with any new drug, my medical team went over the side effects before writing the prescription; I admit I've somewhat started tuning that part out – it makes me feel like I'm watching a TV commercial for an erectile dysfunction drug. "Yuck!!! Who would want to take that?"

For me, when we're talking about LIFE-SAVING medicine, the benefit will almost always outweigh the negative side effects. I don't mean the debilitating side effects, I mean the manageable ones: I've lost my hair twice, I've had black fingernails, lost toenails....blah, blah, blah... diarrhea or constipation? Fatigue, aches and pains? You know the drill. If the drug works and gives me the quality of life to enjoy being a wife and a mom, I'm in. And so we start down the new path.

Now, when cancer drugs say you might get mouth sores or a rash, they don't mean an annoying cold sore or an itchy hand like "normal" folks might complain about. They mean painful, fire-breathing mouth sores and a rash that makes you want to scratch your skin off. While I don't have the rash on this one, I am not exaggerating about the mouth sores. The sore is inside my mouth, but my bottom lip is so swollen it looks like I was punched in the face.


When I dropped Henry off at school this morning, Chris was paranoid the teacher would think he is an abusive husband. It is HUGE. I am talking with a lisp, and I can't even sip my morning coffee without dribbling all down my shirt. Good times!

Like most aspects of cancer, there's also a mental battle going on here. My pride tells me I can do anything I want to do – that cancer doesn't have a hold on me. So I am determined to keep taking a good drug, even if it means dealing with some annoying side effects.

But I can hear the words of my oncologist's nurse, reminding me I can easily land myself in the hospital if side effects get out of control. Or worse, have to discontinue the medicine for good.

There's a thin line separating "deal with it" from "call your doctor."

Whereas last week I thought I could power-through, today I cried mercy. This morning's count was eight mouth sores, which makes me not want to eat, drink or talk! Darn it. I called my doctor, who gave me a few days off meds to let my mouth clear up with the help of some prescription goodies. Hopefully next week I can try it again.

I'm going to enjoy my weekend, pouty lip and all. Since I refuse to be a hermit, I will likely encounter strangers who ask what happened. There's no way to quickly explain how breast cancer caused my fat lip, so I need to come up with a better story or else I'll end up telling my life story to the checker at the grocery store. Right now I have three good options.

1. My two-year old Henry threw a ball and hit me in the face.
2. I just started taking a kick-boxing class.
3. You should see the other guy!

What do you think? Any suggestions?

Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.


How to cope when Mama Bear has cancer


Debbie Woodbury

At the beginning of my cancer journey, I understood what Maya Angelou meant when she said, "There is no greater agony than bearing an untold story inside you."

Once I opened up and started telling my cancer story, I started telling it a lot. After five years, the emotional part of my story has become easier to share - except in one area: My husband and my children. When I talk about them, the same tidal wave of emotion that hit me then hits me again. All I can do is accept and dive into the wave.

It's hard to explain, but anyone who loves doesn't need an explanation. My 20-year old daughter was a newborn when I held her in my arms and first felt it. An overwhelming surge of protectiveness washed over me. In an instant I claimed my primal mama bear fierceness and it imprinted on my psyche forever.

Fifteen years later, the phone rang. Because I was alone when I found out my mammogram was suspicious, I decided to sneak back to the breast center without telling my husband. Of course, I didn't want to go alone, but I put sheltering him over my own best interests. When I came home and told him the truth (and that I now needed a stereotactic biopsy,) I felt horrible about bringing him bad news (and about lying to him by omission.)

Four and a half months later, I had a surgical biopsy and returned, alone, to the breast surgeon's office to hear my diagnosis. When I think back on it now, I realize with some shock that my husband wasn't there because I kept him away (he had gone to every appointment and test since I leveled with him.) Again, I prioritized protecting him above letting him be there for me at a critical moment.

Through the entire diagnostic phase, we kept our 15-year old daughter and 12-year old in the dark until I had a treatment plan. When we finally sat them down, I was glad to tell them I wasn't going to die and would be back to normal after my mastectomy (shows what I didn't know back then.) I remember being shocked at their response, which wasn't good. When I look back now, I realize I had focused so intently on protecting them from bad news that I had deluded myself into thinking I had been successful.

After my mastectomy, I felt extremely isolated. As hard as it was to share bad news about my health, it was even harder to share the emotional fallout of living with cancer. My mama bear wanted to be better, happier and move on with my family, but I simply wasn't able to put cancer behind me so easily.

Now, when I speak with the Pathways Women's Cancer Teaching Project I talk about my children and husband knowing I will tear up because their pain still makes me very emotional. I push on because doctors and nurses need to know how significantly a patient's role as a wife and mother affects her cancer experience.

This is the unspoken burden of women with cancer. We are inseparable from our roles as caregiver, nurturer, confidant and emotional touchstone. We take care of others before we take care of ourselves. Our mama bear instinct is primal and viciously strong and it will over-protect what we care about most in the world - our partners, our children, our parents, our families and our friends.

We can't help it because our overwhelming drive to protect our loved ones, even to the detriment of ourselves, is a force of nature. We're never going to stop feeling and acting on it, but we must come to grips with reality. Even a mama bear needs to take care of herself so she can continue taking care of others.

This is what I learned the hard way and what I now share with you. In addition to your family and friends, build a support network that is there just for you. No one should do cancer alone - and by that I mean without other people who "get it" and are there to support you without needing you to care for them. Putting yourself first once in a while is necessary to healing. And then, when you're a bit stronger, you can get back to being Mama Bear.

Debbie Woodbury is the founder of WhereWeGoNow, a gathering place for survivors creating inspired healing, wellness and live out loud joy beyond cancer. Debbie is the author of You Can Thrive After Treatment and How to Build an Amazing Life After Treatment, a Huffington Post blogger, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathway Women's Cancer Teaching Center, a wife and mother, and a former very stressed out lawyer. Debbie was honored to be quoted in CURE Magazine in Survivor Defined and Seeing Red: Coping with Anger During Cancer. You can also find Debbie on Twitter and Facebook.


Federal funding for cancer research: The good, the bad and the ugly


After a tumultuous year of debates and shutdowns, Congress has passed legislation that will fund cancer research and education--but does the bill do enough? An omnibus appropriations bill that will fund federal agencies and programs for the remainder of this fiscal year recently passed the House and Senate. Many news accounts talked about the National Institutes of Health (NIH) as a "winner" in this particular spending deal, with an increase of $1 billion in funding. In fact, funding for health research--including cancer research--is falling behind.

Let's start with the good news: NIH will receive an additional $1 billion in this fiscal year, a 3.5% increase from the previous year. Likewise, funding for the National Cancer Institute (NCI) will rise by $12 million. Some federal programs that fund cancer research, such as the Congressionally Directed Medical Research Programs, saw substantial increases in funding.

The bad news is that these increases don't offset years of uncertainty, budget cuts and too-small appropriations. Although funding is rising for medical research and education programs, most are still below pre-sequester funding levels from fiscal year 2012. Federal funding for cancer research has been flat for more than a decade, and when adjusted for inflation, it is actually lower than it was before the NIH budget doubled between 1998 and 2003.

The ugly? Years of irregular appropriations have seriously hampered cancer research. Projects that could yield amazing new breakthroughs just aren't getting off the ground, largely because there isn't enough funding. In addition, the uncertainty about how much money Congress will appropriate for cancer research--and when in the world they will pass a funding bill--has made federal agencies extremely cautious about giving out the money they do have. On the other side, biomedical research universities are also shy about starting new research projects and hiring new staff due to federal budget uncertainty. In fact, 70% of universities report delaying new projects and 35% report cancelling them all together. While the current funding bill is a step in the right direction, the road to this deal included a year of substantial funding cuts and a government shutdown.

We are happy to see small improvements in funding for cancer research, but this isn't the time to rest on our laurels. Most advocates expect next year's budget battle to be even harder. We will need to organize and fight so that we don't lose more ground in the next appropriations cycle.

How can you help? As a cancer survivor, your voice carries tremendous weight with your elected officials. Get involved with patient advocacy organizations, like the Ovarian Cancer National Alliance. We tell our community when Congress is considering appropriations and give you easy tools to share your cancer journey and explain the importance of funding cancer research. We also bring survivors to Capitol Hill throughout the year, where they can meet face-to-face with policymakers.

People like you have helped us regain ground on cancer funding. Now we need to unite and speak out to ensure that these gains won't slip away in the coming year. Want to join us? Visit to find ways you can get involved.

Calaneet Balas is the Chief Executive Officer of the Ovarian Cancer National Alliance, an organization that aims to educate health care professionals and raise public awareness of the risks and symptoms of ovarian cancer. The OCNA advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices and life-saving treatment protocols.


Whatever it takes


Carrie Corey

For those of you who aren't familiar with the "whatever it takes" style of parenting, it's basically doing whatever it takes to keep everyone alive, well and happy. It's when you swore you would never give your child candy yet you're stashing suckers in your purse. I have (on more than one occasion) actually had to place a banana peel on the grocery store conveyer belt. Yep, I just paid for a banana peel, but it kept my child from screaming in the produce aisle...whatever it takes, right?

A friend with muscular dystrophy told me she often feels judged at her daughter's preschool when making her toddler walk inside the building, instead of carrying her like the other moms. When you have health issues – be it MD, cancer or something else – you have physical limitations other people don't understand. So what if you make your child walk into the school herself or teach your toddler how to climb into his own car seat.

Do whatever it takes to keep going.

And that includes ignoring guilt about not being the perfect parent and nasty looks from people who think such a creature exists. As a wife and mom living with cancer, I have started applying the whatever it takes theory to other areas of my life as well. While a "normal person" might say he/she has a lot on their plate, some of us have plates the size of a turkey platter. My day to day can be pretty heavy, so I give myself a pass on the little things like laundry to fold or dishes to wash.

I went in for my last PET of the year, and while overall I am still doing well, my cancer is starting to resist my current medication. Which means a new drug (but not back in the chemo chair yet!) and surgery. Instead of thinking about the big picture of what this means or the number of medications I haven't crossed off the list yet, I keep my sanity by taking the tactical approach. After all, I am a list maker.

1. New drugs? Researching new side effects.
2. Surgery? Scheduled as soon as possible.
3. Two week without driving? Time for a long visit from Mom.
4. Six weeks without lifting my 2-year old? Teaching Henry how to climb in and out of the car seat

Let's do this thing. I'll do whatever it takes to keep everyone alive, well and happy...including me.


Top Five Advances in TNBC Research in 2013


Patricia Prijatel
Last year was a lively one for research on triple-negative breast cancer. Below is my list of the year's top studies -- all pointing toward understanding what makes TNBC tick, which will ultimately lead to treatment and a reduction in the risk of recurrence.

Remember, though, that the road from research to clinical practice can be long and rocky, so most of these treatments won't be immediately available. Still, this list points to a rich reservoir of inquiry and information -- which is good news for those of us on the TNBC Road and for those who follow us.

1. New Treatment Regimens Include Existing Drugs
Bisphosphonates such as Zometa and Reclast reduced the risk of bone metastases following breast cancer in post-menopausal women by 34 percent in research presented at the 2013 San Antonio Breast Cancer Symposium. And they reduced the risk of death in that same group by 17 percent, regardless of receptor status, node involvement or previous chemotherapy.
• Adding the chemotherapy drug carboplatin to standard treatment improved outcomes for women with triple-negative breast cancer in two studies presented at the 2013 San Antonio Breast Cancer Symposium. Both measured pathological complete response (pCR), which is recognized as a positive marker for overall survival. The second study also showed improved outcomes using bevacizumab (Avastin).
• Triple-negative breast cancers may be vulnerable to drugs like bortezomib (Velcade), which is used in multiple myeloma, according to a paper in Cancer Cell. In lab tests, researchers selectively "turned off" genes in triple-negative tumor cells. When turned off, the cells die.
• Tumor-infiltrating lymphocytes may become an additional factor in determining which types of triple-negative breast cancer respond best to chemotherapy. Seventy-five percent of tumors with the highest levels of lymphocytes -- researchers call this lymphocyte predominate breast cancer (LPBC) - had a pathological complete response to doxorubicin and taxane plus carboplatin when compared to non-LPBC tumors. The results came from the GeparSixto trial (GBG 66) in Germany.
• The diabetes drug metformin can effectively reduce breast cancer risk that is associated with insulin resistance and was directly correlated with Ki67 status, according to research in the British Journal of Cancer. TNBC has shown links to insulin resistance in previous studies, and many TNBC tumors are positive for Ki67.

2. New Drugs May Be On The Horizon
• An anti-copper drug compound that disables the ability of bone marrow cells from setting up a "home" in organs to receive and nurture migrating cancer tumor cells has shown benefit for metastatic triple-negative breast cancer. Results of a phase 2clinical trial reported in the Annals of Oncology show that patients who are copper depleted show a significantly reduced risk of relapse. In fact, only two of 11 study participants with a history of advanced triple-negative breast cancer relapsed within 10 months after using the anti-copper drug, tetrathiomolybdate (TM).
• A protein called Numb may promote the death of cancer cells by binding to and stabilizing the tumor suppressor protein p53, which is implicated in many cases of triple-negative breast cancer, according to research published in the May 23rd issue of Molecular Cell. When Numb is reduced by the Set8 enzyme, it will no longer protect p53.

3. Genetic Research Is Leading Toward Better Definition of TNBC
• Beyond its most basic definition -- negative for receptors for estrogen, progesterone and Her2/neu -- triple-negative breast cancer has unique genetic characteristics. Research published in the journal Cancer Research outlined some of TNBC's genetic associations.
• In a study published in the journal Breast Cancer Research, scientists discovered that basal-like breast cancers with the BRCA1 mutation--many of them TNBC--grow differently than other cancers. In fact, the way they grow predicts the prognosis of the tumor.
• Cancer Scientists at Weill Cornell Medical College have discovered the molecular switch that allows triple-negative breast cancer cells to grow the amoeba-like protrusions they need to crawl away from a primary tumor and metastasize throughout the body. Their findings, published in Cancer Cell, suggest a novel approach for developing agents to treat cancer once it has spread.
• Researchers at St. Louis University have uncovered a pathway responsible for the loss of 53BP1 in TNBC tumors related to the BRCA1 mutation. Loss of BRCA1, they discovered, increases the expression of the protease cathepsin L (CTSL), which causes the degradation of 53BP1. Cells that have lost both BRCA1 and 53BP1 have the ability to repair DNA and proliferate. That means the protease helps cancer cells with faulty BRCA1 survive -- it is a defined bad guy in TNBC growth.

4. Technological Advances Improve Imaging, Diagnosis, and Treatment
• An optical imaging technique that measures metabolic activity in cancer cells can accurately differentiate breast cancer subtypes, and it can detect responses to treatment as early as two days after therapy administration, according to a study published in Cancer Research, a journal of the American Association for Cancer Research.
• UCLA researchers have developed a potential new treatment for TNBC that uses nanoscale, diamond-like particles called nanodiamonds. Byproducts of conventional mining and refining operations, nanodiamonds can form clusters following drug binding and have the ability to precisely deliver cancer drugs to tumors, significantly improving the drugs' desired effect.

5. Lifestyle Changes Continue to Show Promise
• Researchers from Fox Chase Cancer Center have found that omega-3 fatty acids slow or stop the proliferation of triple-negative breast cancer cells more effectively than cells from luminal types of the disease. The omega-3s worked against all types of cancerous cells, but the effect was observed to be stronger in triple-negative cell lines, reducing proliferation by as much as 90 percent.
• Young women who eat excess amounts of saturated fats during their teenage years increase their risk of basal-like breast cancer, according to a study published in Breast Cancer Research. Many basal-like tumors are also triple-negative.

Patricia Prijatel is a TNBC survivor, advocate and writer. This post is an excerpt from "Top Triple-Negative Breast Cancer Research: 2013," published on Patricia's blog, Positives About Negative. Read more about TNBC in Patricia's book, Surviving Triple-Negative Breast Cancer, available from Oxford University Press.


From ASH: Thanks for the memories


Cindy Chmielewski
It's not happiness that brings you gratitude, it's gratitude that brings you happiness. Today I am a very happy girl. As I sat in the Louis Armstrong Airport waiting for my delayed flight home to Philadelphia from the American Society of Hematology's Annual Meeting (#ASH13 on social media) I am reflecting back on my experience. I have a lot for which I am grateful.

I am grateful for the educational grant that enabled the International Myeloma Foundation ( to bring 12 patient advocates from across the United States to the American Society of Hematology's Annual Meeting (

I am grateful that IMF asked me to be one of those patient advocates this year and report from #ASH13.

I am grateful for the progress that has been made in treating myeloma in the last decade; because of these advances I am well enough to travel alone halfway across the country five years post-diagnosis.

I am grateful for the many discussions I had with my fellow advocates during our time in New Orleans. These conversations both formal and informal enlightened me on treatment options, clinical trials, side effect management, advocacy and the best place to get a muffuletta.

I am grateful for all the researchers that are bringing new treatment protocols and drugs to clinical trial. The passion I felt during the presentations of medical research abstracts and at the satellite events held throughout the conference was contagious.

I am grateful to everyone who has helped fund research, from the individual patient who held a grassroots bake sale to all who lobbied Washington to restore government funds for medical research.

I am grateful to my fellow myeloma warriors who have participated in clinical trials; without them we wouldn't have made any progress in our war against myeloma or have research abstracts to present.

I am grateful for the education the IMF has provided me, from the new patient resource packet I received in the mail days after my diagnosis to the ongoing educational webcasts. The IMF hosted 3 live webcasts from #ASH13 and there are several recorded #ASH13 interviews posted on their website.

I am grateful for social media that has allowed me both to learn from others and share what I learned through Twitter - @MyelomaTeacher #ASH13IMF (I was in the top 5 influencers at #ASH13), IMF blogs, and a Patient Power interview.

I am grateful for my family and friends who continue to support me in my efforts to be a patient advocate.

This list could go on and on.

I plan on using what I learned to help others at my local in-person support group, in the several online communities of which I am a member, in my mentoring of newly diagnosed patients, by participating in myeloma related webcasts, and through continued engagement in social media.

Remember to use the following IMF link to get all the myeloma highlights from #ASH13.

Goodbye New Orleans, but thanks for the memories!

Cynthia Chmielewski, a retired educator, is a patient advocate and mentor, a patient services volunteer, and a "life-long learner" who lives in New Jersey. She is an advocate for IMF and a five-year survivor of myeloma. This blog was originally published at You can find her on twitter at @MyelomaTeacher.


An advocate's experience during the San Antonio Breast Cancer Symposium


Michelle Esser
Breast cancer advocacy can take many forms: outreach in the community; lobbying on Capitol Hill for research funding; acting as a consumer advocate in grant review; or working with scientists to develop a research study. Regardless of the form of advocacy you practice, the Alamo Breast Cancer Foundation's advocacy program at the San Antonio Breast Cancer Symposium (SABCS) is something you must consider.

Although I have been an advocate for over five years now, this December was my first time attending SABCS and I was honored to attend as an Alamo Breast Cancer Foundation (ABCF) Patient Advocate. It was an amazing experience.

All Alamo patient advocates arrived on Monday for orientation and dinner led by the ladies of ABCF. It was a great opportunity to meet fellow advocates, including some international advocates, learn about our schedule and prepare for the days ahead. Those days would be very full, starting by 7 or 8 a.m. and going until 9:30 p.m. at night. On Tuesday morning, advocates attended the Project LEAD educational session with fabulous speakers Drs. Gil Welch and Dennis Slamon who gave us a preview of some of the information we would hear at SABCS.

From Dr. Welch we learned about his recent research into screening mammography and overdiagnosis, which he would present the following morning at SABCS. His findings would be called "controversial" by some and sure to spark debate. Tuesday afternoon advocates attended a minimum of two of the Editha Kapoor Breast Cancer Educational Sessions with an optional evening program as well on breast cancer genetics. After a 7 a.m. educational breakfast session on Wednesday with the American Association for Cancer Research (AACR), advocates headed to the official opening of SABCS.

From Wednesday on, the convention center was packed with over 10,000 advocates, breast cancer researchers and treating physicians. The days were a mix of plenary lectures, general sessions, case discussions, honorary lectures, poster presentations and receptions. During the general sessions, selected speakers presented in 15 minute increments recent results of their research -- unveiled for the first time at SABCS. The studies covered a variety of topics from surgery, to treatment, to reducing breast cancer risk, to quality of life issues, although the latter two categories were definitely fewer in number than the first two.

At the end of each day, ABCF presented their "hot topic" mentor sessions which featured prominent doctors and researchers who summarized the highlights of the day and explained the research in more detail, putting it into context and using easily understandable language. Advocates also had the opportunity to ask questions after the presentations. Although developed initially for just the ABCF scholarship recipients, this highly acclaimed program now attracts a couple hundred SABCS attendees every night who want to hear and understand the day's news. This session is also a way for the ABCF advocates to understand more about the "hot topic" assigned to them, on which they will write and submit a newspaper article-style summary as part of their scholarship requirements. At the last mentor session, all ABCF advocates "graduated" receiving a certificate and photo to commemorate the occasion.

SABCS is something all advocates should experience, and I highly recommend applying to and attending through ABCF. SABCS is an educational experience, providing updates on recent research news which advocates can take back to their respective communities. Advocates can meet and interact with the researchers themselves to gain more understanding and clarity. It is also a great opportunity to network with those same researchers as well as fellow advocates. And last but certainly not least, I cannot say enough about the wonderful ladies of ABCF. They were such gracious hosts who made all the advocates feel welcomed and supported. Their passion and enthusiasm was contagious. As a new SABCS attendee, it was nice to be surrounded with friendly faces who provided direction and guidance when needed.

Interested advocates apply in August to receive ABCF scholarship funds to attend SABCS. To date, ABCF has paid for 491 advocates to attend SABCS. For more information on the ABCF's advocacy program and application requirements, please visit

Michelle Esser is a seven-year breast cancer survivor from Pennsylvania. She currently works as Program Manager for Research and Advocacy at Young Survival Coalition.


Deconstructing chemobrain: What's new in cancer and cognition


Jamie Myers

November was an exciting month for nurses conducting research in the area of cognitive changes related to cancer and cancer treatment.

Many of us were fortunate to attend the Oncology Nursing Society Connections conference in Dallas, where we had the opportunity to share research results and discuss future research projects dedicated to learning more about the cognitive changes that some cancer survivors experience. Additionally, the November issue of the Seminars in Oncology Nursing journal was devoted to "Cognitive Changes Associated with Cancer and Cancer Treatment."

"Chemobrain" and cognitive changes due to cancer and other related treatments pose a challenge to many survivors of cancer. Incidence estimates for cancer-related cognitive changes range from 75 to 90 percent of survivors at some point prior to, during or following treatment.

Around 25 percent of survivors struggle with long-term cognitive effects. Survivors describe the experience of these cognitive changes to include issues such as difficulty with word finding, misplacing things such as keys and cell phones, forgetting why they walked into a room, missing appointments and trouble multitasking. Results from neuro-psychologic tests have shown decreases in processing speed, memory and executive function (the ability to plan out and complete the steps necessary to accomplish a goal). All of these issues cause frustration and can decrease survivors' quality of life.

A great deal of research is being conducted to better understand the causes of these cognitive changes so that preventive strategies and interventions can be developed. Many different theories are being explored such as injury to neural progenitor cells (stem cells that give rise to mature brain cells), changes to DNA-repair genes, accelerated aging of the brain, and genetic pre-disposal to central nervous system injury. Results of studies that include the use of functional magnetic resonance imaging (MRI) and memory testing are demonstrating changes in brain volume and activation.

Additionally, exciting research is being conducted to explore interventions to reduce cognitive injury and/or improve cognitive function. Some interesting results are being seen in the areas of cognitive behavioral training and exercise.

Cognitive Behavioral Training includes exercises to assist with memory and processing speed as well as recommendations for strategies to accommodate for changes in cognitive function. Exercise studies to date have included yoga, Tai Chi, Qigong, aerobic exercise and resistance training. More research needs to be conducted to support the widespread use of these interventions, but these early results are encouraging. Additional results will be presented at the upcoming 2014 International Cancer and Cognition Task Force (ICCTF) Cancer and Cognition Conference to be held in Seattle next February. The Task Force is comprised of oncologists, radiologists, nurses, basic scientists and other disciplines all dedicated to finding solutions to the problem of cancer-related cognitive changes.

One study is currently being conducted to learn more about factors that may predict many of the symptoms associated with breast cancer prior to, during and following chemotherapy (including cognitive changes). Women with breast cancer are being asked to complete a confidential online questionnaire. If you or someone you know are newly diagnosed and have not yet received chemotherapy, or if chemotherapy was completed two or more years ago, please consider helping us learn more about predictive factors by completing the study questionnaire.

Jamie Myers, PhD, RN, AOCNS, is adjunct assistant professor at the University of Kansas School of Nursing and nurse researcher consultant for Carondelet Health in Kansas City. She also is the coordinator-elect for the Oncology Nursing Society Survivorship, Quality of Life, and Rehabilitation Special Interest Group.

To participate in the clinical study mentioned above, go to Participants will be offered the opportunity to receive the study results. If you have questions about the study or would prefer to receive a hard copy questionnaire you can contact Jamie at or 913-449-5996.


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