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CATEGORIES [ DIAGNOSIS, FEATURED ]

Spiritual care is central to patient care

BY GUEST BLOGGER | JUNE 25, 2014

Linda Emanuel
Somewhere along the line of my now long career, I became interested in learning more about the role of religion and spirituality in the care of patients needing palliative care. As other areas in palliative care got better and better, spiritual care remained little studied. Fortunately, since its origins with leaders such as Dame Cicely Saunders and Dr. Balfour Mount, inclusion of a person's spiritual needs has been a core part of the care provided by hospice as well as palliative care.

Indeed, experience suggests that when spiritual care is present, patients and family caregivers alike seem more comfortable as they go through their difficult times.

Spirituality, of course, is a very personal matter, but as doctors we ask our patients lots of personal questions when it is relevant to their case, such as information about their sex life. It is part of caring for the whole person. Clinicians may feel like they are crossing a boundary by raising the subject of religion or spirituality with their patients. Is it their place to raise the issue, or should they simply be prepared to answer questions from, and offer resources to, patients who raise the subject?

Prayer does come up in our interactions with patients. We have the option to call upon the chaplain. The role of the clinician is assessment; so isn't it important then, if facing a crisis, to involve a chaplain or the patient's clergy if the person is in spiritual distress? I think so.

Recently the HealthCare Chaplaincy Network sponsored six landmark studies on this issue. One of them, "Hospital Chaplaincy and Medical Outcomes at the End of Life," conducted by Tracy Balboni and her colleagues at the Dana-Farber Cancer Institute in Boston, focused on the presence and helpfulness of chaplaincy visits for patients with advanced cancer. The research showed how chaplain care influences patient well-being and decision-making for people facing serious illness. Over half (52.4 percent) of the 250 respondents reported not being visited by a chaplain. Of those patients who were visited by chaplains, 88 percent said the chaplaincy visit was helpful.

Researchers also collected qualitative data in response to the question: "Please explain why your time with the chaplain was helpful or not helpful." Several patients said that the chaplain was "comforting," noting that the discussion, support and prayer with the chaplain were helpful. Though this data is still in the process of being collected, some preliminary conclusions indicate that though chaplain visits may not be as frequent as desired, when they do occur, they are generally helpful to patients.

In several of the studies, the benefit of having chaplains available went beyond religious matters to human spirituality even for the non-religious. The implications are that chaplains can help with communication in the service of whole person care that integrates a person's spiritual resources with other resources in their well-being. Spiritual care is central to caring for patients. It should not be ancillary.

Certainly not everyone who is dealing with cancer as a patient or as a survivor is in the hospital where they can meet with a chaplain. There is a new resource where you can find thoughtful and practical spiritual care information, resources and support provided by professional chaplains: ChaplainsOnHand.org. Besides the good content for anyone regardless of religion or beliefs, it enables you to chat with a chaplain by phone or email.

Linda Emanuel is director of the Buehler Center on Aging, Health & Society at Northwestern University Feinberg School of Medicine and and the Buehler professor of Geriatric Medicine. She also holds the title of Senior Vice President for Research & Education, HealthCare Chaplaincy Network.

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CATEGORIES [ BREAST CANCER ]

Calling all guinea pigs: My experience during a cancer clinical trial

BY GUEST BLOGGER | JUNE 23, 2014

Carrie Corey
Have you ever participated in a clinical trial?

They're VITAL to getting life-saving drugs on the market, but being a guinea pig is easier said than done.

As I mentioned in my last blog (Searching for NED), my most recent PET scan showed my breast cancer had progressed despite the medications I was taking. Even though my doctors recommended chemotherapy, I enrolled in a phase 3 clinical trial for the hot new PARP-inhibitor drug, BMN-673.

Taking a clinical trial drug expands the very finite list of cancer drugs available to me NOW, and it can also help increase options for patients like me in the future (stage 4, ER-positive, BRCA genetic mutation).

With the start of each new drug regimen, we pray for as much time as possible before progressing on that drug. Because once my cancer outsmarts the medication I am taking – and we know that it will – I have to cross that drug off my list and find a new one. When that happens, I try to ignore the little voice in my head that asks, "How many drugs are left?"

To be honest – I don't know, and I don't want to. Because the louder, more optimistic voice keeps yelling, "I don't need a long list of drugs... I just need ONE good one."

I need one good drug that my cancer can't outsmart. With 2:1 odds of receiving the trial drug, I ended up in the control group. Ironically, I'm receiving the same chemotherapy my doctors recommended in the first place, but so far, eribulin seems to be a "good" chemo with manageable side effects. My biggest physical complaint is a nagging pain in my lower back, but hopefully next week's scan will prove the pain to be a result of picking up 32-pound Henry.

I'll admit, at first I was angry that I wasn't getting the trial drug, but I made peace with it by looking at the bigger picture. I need to do more than just wait for drugs to come down the pipeline, and since I don't have millions to donate to research, I'm offering up my services as a guinea pig. Even if I am in the control group, I'm helping get the job done.

With any luck, PARP-inhibitor BMN-673 will be a wonder drug that hits the FDA fast-track. I'm very optimistic to see if the FDA's new breakthrough program is actually going to help us get drugs to market faster, because the new PARP inhibitors definitely qualify as a breakthrough. Now let's just cross our fingers and pray the drug will work some magic. And maybe cross some toes too....

In the meantime, summer has officially arrived here in Dallas! During the week, I'm juggling babysitters and appointments at the cancer center, but we enjoy our weekends as a family in the backyard. Most Saturdays we fire up the grill, turn on the sprinklers and let Henry run his lawn mower through the mud until he's tired enough to nap!

Henry

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.

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CATEGORIES [ BLOOD CANCERS, ASCO ]

The story of a promising cancer treatment that was lost, then found again

BY GUEST BLOGGER | JUNE 18, 2014

CURE invited Diane Gambill, PhD, a CURE advisory board member, to share her thoughts on advancements in blood cancers highlighted at the 2014 annual meeting of the American Society of Clinical Oncology.

Several years ago, I heard the early results of a new drug being studied in mantle cell lymphoma (MCL) and chronic lymphocytic leukemia (CLL). The drug (PCI-32765, an inhibitor of Bruton's tyrosine kinase) generated a lot of excitement, but might not have made it to the clinic.

Like the stories behind Viagra and penicillin, the development of PCI-32765 is a classic example of scientists developing a compound for one thing and finding out, almost by accident, that it might be useful for something else. PCI-32765 was developed by a company called Celera engaged in the Human Genome Project as a tool to help find new drugs – not as a potential new drug itself, but the head of Celera resigned after the 2006 completion of sequencing the human genome and progress on their new drug portfolio ground to a halt.

In 2007, Pharmacyclics acquired the intellectual property of Celera including PCI-32765, what was to later become "Imbruvica." PCI-32765 was not among the acquired compounds that was initially pursued; however, it took less than seven years for Imbruvica to enter the clinic for treatment of MCL (2013), and in February 2014, the FDA granted accelerated approval of Imbruvica for patients with previously treated CLL based on a small phase 2 trial that showed an impressive response rate in 48 heavily pretreated patients [NEJM 2013;369:32).

To gain full approval from the FDA, these results need to be confirmed and shown to improve long-term outcomes in phase 3 trials. Seven trials are underway and the preliminary findings of one of them (a trial called RESONATE) were announced at the 2014 annual meeting of the American Society for Clinical Oncology.

The RESONATE trial compared Imbruvica to Arzerra (ofatumumab), another treatment for CLL. Patients with CLL that had relapsed following response to prior treatment or was refractory to treatment were randomized to daily oral Imbruvica or 12 doses of intravenous Arzerra. The goal of the trial was to determine if the 195 patients treated with Imbruvica had longer progression-free survival (PFS) than the 196 patients treated with Arzerra. The trial included patients with poor prognostic characteristics such as bulky disease (about half of the patients) and a third of patients had chromosome 17p deletions.

The majority (86 percent) of patients on the Imbruvica regimen remain on therapy while all but one of the Arzerra patients had completed therapy. Of note, patients who progressed on Arzerra were allowed to cross over to the Imbruvica arm as of August 2013.

The overall response rate was substantially higher for Imbruvica (48 percent) than for Arzerra (4 percent), and the gap was even larger if patients who had a partial response with lymphocytosis were included (63 percent vs. 4 percent). This is consistent with the phase 2 results.

According to the investigators, more than 80 percent of the patients receiving Imbruvica are in remission at one year – more than twice the number expected from standard therapy. More importantly, patients who were treated with Imbruvica had significantly better PFS and overall survival compared with those who were treated with Arzerra. With Imbruvica, the risk of progressive disease or death decreased by 78 percent and 57 percent, respectively. The advantage in overall survival was seen despite patients receiving Imbruvica after progressing on Arzerra.

Probably the most impressive result was that the data was positive in all subgroups, including disease that was refractory to fludarabine or had poor prognostic markers such as 17p deletions, both of which tend to limit the efficacy of traditional therapies.

Both treatments were relatively safe and there were no unexpected toxicities. Diarrhea and mild infection were more common with Imbruvica. Serious infections were similar between the two treatments. Atrial fibrillation (a heart rhythm disorder) was more frequent with Imbruvica (10 patients versus 1 with Arzerra) but caused only treatment discontinuation. Bleeding was also more common with Imbruvica; however, there were no serious events. Infusion reactions and neuropathy were more common with Arzerra. These preliminary results suggest that Imbruvica will achieve full approval; but, final results of this and other phase 3 trials currently underway are needed to see if the impressive results seen in the earlier clinical trials hold up... so look for final data in 2015.

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CATEGORIES [ BLOOD CANCERS, ASCO ]

ASCO: PET-driven therapy for aggressive lymphoma

BY GUEST BLOGGER | JUNE 5, 2014

CURE invited Diane Gambill, PhD, a CURE advisory board member, to share her thoughts on advancements in lymphoma highlighted at the 2014 annual meeting of the American Society of Clinical Oncology.

Patients 60 years old and younger who have high-risk aggressive lymphoma (diffuse large B-cell lymphoma [DLBCL]) might not need a transplantation according to results of a phase 2 trial announced at the annual meeting of the American Society for Clinical Oncology.

The trial (LNH 2007-3B), presented by the French GELA/LYSA group, assessed 222 patients' response to chemoimmunotherapy, which was evaluated using positron emission tomography (PET) scans after two (PET2) and four (PET4) cycles of treatment. PET scanning results were used to drive the decision to continue chemoimmunotherapy versus autologous stem cell transplantation (ASCT) after four cycles of treatment. Previously, PET2-negative results had been associated with improved outcomes for patients with high-risk DLBCL, so investigators of the trial thought some patients might not need an ASCT.

Patients on the study were randomized to receive chemoimmunotherapy with Rituxan/CHOP14 or Rituxan/ACVBP14. As expected, patients on the Rituxan/ACVBP14 regimen had a higher rate of serious toxicities, notably febrile neutropenia, infection and mucositis than patients on the Rituxan/CHOP14 regimen. Despite the difference in toxicities, the number of patients who withdrew from the trial early was similar between the arms (six on the Rituxan/ACVBP14 regimen and five on the Rituxan/CHOP14).

Based on PET2 and PET4 scan results, there were three different consolidation treatment plans:

• Patients with a PET4-positive result indicated that active disease was present and the patient was taken off study to receive salvage chemotherapy. Fewer patients on the Rituxan/ACVBP14 regimen received salvage therapy than on the Rituxan/CHOP14 regimen (27 percent and 39 percent, respectively). This difference was statistically meaningful and is consistent with the response advantage seen in lower-risk DLBCL.

• Patients with a PET4-negative result, meaning they had a complete response to chemoimmunotherapy, were treated according to their PET2 scan result.

o Patients with PET4-negative but PET2-positive scans were treated with an ASCT, which resulted in a similar number of patients for each regimen: 41 percent for Rituxan/ACVBP versus 33 percent for Rituxan/CHOP.

o Patients who had both PET2- and PET4-negative scans received further chemoimmunotherapy and the numbers were similar for both regimens. Overall, 25 percent of the patients in this study were eligible for this approach, sparing them from ASCT.

So, what does this trial mean for patients in the U.S.?

First, this phase 2 result is intriguing but requires further investigation before it is ready for the clinic. Second, one of the drugs in the ACVBP regimen is not available in the U.S.; however, despite the differences in numbers of patients with PET4-positive scans between the regimens, progression-free survival and overall survival were not statistically different. The investigators suggested that matching the PET response to an appropriate consolidation therapy might be responsible for the similar survival outcomes.

Finally, using PET to assess response to initial therapy is currently the standard for DLBCL; but some worry about the potential risks of PET scans, notably false positives and second malignancies, particularly in a younger population (those 60 years old and younger). In the case of high-risk DLBCL, biopsies are needed to confirm PET-positivity, and the benefits of PET outweigh the risks given the potential for long-term disease control.

The GELA/LYSA investigators have started a phase 3 trial, called GAINED, to confirm these results.

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CATEGORIES [ BREAST CANCER ]

Searching for NED

BY GUEST BLOGGER | MAY 31, 2014

Carrie Corey

The verdict is in: my scans show progression. My most recent regimen involved a hysterectomy and medicine that caused a mouth full of blisters, but it was not keeping my breast cancer at bay.

Even though we've heard this news before, it always feels like someone pulled the rug out from under me. One might think I would mentally prepare myself for bad scan news, but I refuse to let cancer turn me into a pessimist.

The truth is, I've been lucky in the more than two years since I was diagnosed metastatic. My body has responded to multiple drugs, at least for a little while; my most recent drug regimen is the first one that did not work for me at all.

As many of you know, the name of the metastatic game is "Time until Progression." It's not a matter of if my cancer will return, it's a matter of when. We're fortunate for the many drugs available to prolong our lives in stage 4, but there is no silver bullet yet. And since there is no way to determine which drugs my cancer will respond to until after a round of trial and error, we live our lives in three month intervals between scans, analyzing every muscle pain and headache as a sign that the next scan might show progression.

People can see scan reports of NED (No evidence of Disease) for years, but NED can be a shifty and wiley character. I have had the pleasure of dancing with NED, but it wasn't for very long.

We hang our hats on the hope that one day advanced cancer will really be a chronic, treatable disease like diabetes – that's the anecdote my doctors all tell me when I ask too many forward-thinking questions. I do believe we will get there in my lifetime, but until then, I will keep hitchhiking from one drug to another...searching for NED.

In the past when my scan showed progression, my medical team laid out a very clear "gold standard" next step. This time we appear to be at a crossroads, because they offered me two paths and asked me to choose.

Even though I have excellent medical teams in two top-rated cancer hospitals, it is up to me to drive this bus. Don't get me wrong – I am not advocating ignoring good medical advice, but our lives are at stake, and we need to act like it. Do your own homework, even if it means questioning the recommendations or seeking another opinion altogether. We found a third option: a clinical trial.

So after 14 days with no medication in my system, a barrage of baseline tests and scans, and a mountain of consent forms and questionnaires, I am officially enrolled in a phase 3 clinical trial for BMN-673, a PARP inhibitor designed for metastatic breast cancer patients with a BRCA1/2 genetic mutation. PARP inhibitors are part of the next generation of cancer drugs – they actually work with your DNA to fight cancer. On paper, it looks like the perfect trial for me. (You can read more on PARP inhibitors in "A New Hope.")

My stats have been submitted for randomization, and I have 2:1 odds of receiving the oral trial drug or the standard care chemotherapy. I finally have my next step, and that's where we are, still searching for NED.

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.

Carrie welcomes your response and comments on CURE's Facebook page.

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CATEGORIES [ YOUNG ADULTS ]

A trip to Vegas with Stupid Cancer

BY GUEST BLOGGER | MAY 14, 2014

Lindsay Braunwalder

A trip to Las Vegas does not typically include discussions on career rights, fertility options and sexual dilemmas. It doesn't necessarily mean you will see a comedic speaker, who is also a published author with a PhD, talk of his personal struggles and major accomplishments. One might not expect to meet the CEO of an organization who has spent so much of his time and energy helping others and changing lives, and now changing mine. I can also say that one might not plan to share a connection with over 500 people one has never met before.

But I did.

Different people from all over the country, even from different countries, were joined together because of one commonality: Cancer.

At my first Stupid Cancer event, OMG2014, I was surrounded by fellow survivors. It didn't matter what people looked like, if they had hair or not or if they were in a wheelchair. It didn't matter what people needed to talk about, or what emotions they needed to express, no one was there to judge and everyone was there to support one another. I learned of outlets and resources that will help me and so many others in the future.

Because of cancer, and the chemotherapy treatments I underwent, I have long-term side affects I deal with every day. Now I know I have someone to turn to and help when talking to my employers and co-workers about my disability. I met someone who can coach me in life and guide me in developing a plan for my future. Cancer will not hold me back, and I will live a better life.

After a session just for women, I also learned I am not alone in my sexual experiences, struggles and realities, and even though I may have to face these obstacles, it is OK. I am unique and beautiful. This meeting opened my eyes to these things, and I am ever grateful.

While some serious issues were discussed, a four-day trip to Vegas did not go without some relaxation and letting loose. I was able to bond with my roommates, even though we had never met before. We instantly felt as if we had been lifelong friends who were reuniting. There were others I formed such strong bonds with during the various event during the weekend. I want to keep in touch with them all, and I can't wait to see them again.

Everyone I met at the conference helped me to realize it is OK to struggle and it is OK to ask for help. We can overcome anything. Cancer is seen as such a negative thing, as if nothing good can come from it. I would disagree, because during the OMG! Summit, cancer brought us all together. I have come away with meaningful relationships, resources that will support me in the future, and memories that I will treasure forever.

Lindsay Braunwalder, 24, is a 14-year survivor of medulloblastoma and currently lives in Eagle, Idaho.

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CATEGORIES [ SURVIVORSHIP, BREAST CANCER ]

Six tips to help you comfort yourself & heal

BY GUEST BLOGGER | MAY 12, 2014

Debbie Woodbury

On April 15, 2009, I suddenly went from active to temporarily disabled as a result of my mastectomy and TRAM flap reconstructive surgery.

I wasn't used to being benched and, as a wife and mother, I certainly wasn't used to putting my needs before others. But, breast cancer gave me no other choice and I was forced me to stop, breathe and take care of myself first.

I was frustrated at times, but came to accept that healing was my job and it was impossible to heal without comfort.

Now that I'm physically healed, it's much harder to prioritize comfort. In fact, sometimes I find myself resisting it because I want to throw myself back into daily life and push beyond my comfort zone.

But, life is always going to require healing. And healing is always going to require comfort.

No matter where you are with cancer, you need to make comfort a priority. Here's how to go about creating more comfort in your world:

1. Concentrate on the little things that make you happy: Whether it's a favorite sweater, dog, yoga class, or driving with the top down, if it makes you happy, make sure to enjoy it more often. To get that done, start paying attention to what makes you smile. And then make the effort to bring those things into your life. You deserve it.

2. Rest: Give in to fatigue. Initially, it speaks to you in whispers, but tends to scream like a banshee when ignored. To keep it from getting to that point, learn to shut down at a reasonable hour at the end of the day. Put a premium on rest and getting to sleep and you will be more productive in the long run.

3. Make home a haven of comfort: Every autumn and spring, I seasonalize my home. In autumn, I put out comfy throws in the family room, including a faux fur one I got from Pottery Barn. Sitting under that throw is one of my sweetest comforts when the wind is howling outside and I hate to see it go in the spring.

4. Stay in touch: Keep communicating and sharing. While I was treating, I was immersed in support groups, therapy and events that put me in weekly contact with other cancer patients/survivors. Eventually, that came to an end. I still meet with other survivors by working with the Pathways Women's Cancer Teaching Project. And, of course, I stay in touch with the friends I made along the way. Their inclusion in my life is a constant comfort and source of support.

5. Maintain a soul practice: Whether you are part of a religious community, pray, meditate, or commune with nature, spend some time developing a soul practice. Take your practice one step further by creating a sacred space of peacefulness and healing at home, where you can take a moment to stop, breathe and find comfort anytime you need it.

6. Finish this sentence: I find comfort in ------. Write down whatever you think of without censoring yourself. When you're finished writing, review what you've written and think about how to bring those things into your life today.

It's been said many times that life begins outside your comfort zone. I don't believe it. Comfort fortifies and heals and, without it, we don't have what it takes to venture out into the world and take risks.

How do you do comfort? Let me know and I'd love to hear how you finished the sentence in tip number six. Make sure to tell me in the comments below.

Debbie Woodbury is the founder of WhereWeGoNow, author of You Can Thrive After Treatment and How to Build an Amazing Life After Treatment, a Positively Positive contributor, and a Huffington Post blogger. She is an inspirational speaker bringing hope to cancer survivors and the patient experience to medical professionals. Debbie gives back by working with the Cancer Hope Network, The Pathways Women's Cancer Teaching Project, and the Carol G. Simon Cancer Center Oncology Community Advisory Board at Overlook Medical Center, Summit, NJ. Debbie was honored to be quoted in CURE magazine in Survivor Defined and Seeing Red: Coping with Anger During Cancer. Debbie is a wife, mother, and a former very stressed out attorney. To learn more, join her at WhereWeGoNow and follow her on Facebook and Twitter.

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CATEGORIES [ TREATMENT, YOUNG ADULTS ]

Scanxiety

BY GUEST BLOGGER | MAY 6, 2014

Carrie Corey

Raise your hand if you're a cancer survivor. If you're reading this, you probably have an intimate relationship with the green-eyed monster, whether it's you or your loved one.

During my first breast cancer diagnosis, I focused on the light at the end of the tunnel. I remember counting down weeks for recovering from surgery or chemotherapy, thinking it was the number of weeks until I got my old life back.

You veterans are smiling right now; because once you've had cancer, your "old life" doesn't exist anymore. But hey, I was only 29 – I didn't know that yet!

Now I am a 34-year old wife and mom living with metastatic breast cancer. I receive my day-to-day treatment in Dallas where I live, but I travel to MD Anderson in Houston every three months for a PET scan and reevaluation. We manage to make a family event of our trips to Houston, enjoying two nights in a hotel and exploring new restaurants. This trip, Chris and I left our son with his grandparents so we could also celebrate our five-year wedding anniversary with a nice Galveston hotel and a fancy dinner (without a nacho-throwing toddler!)

In the two years since I was deemed incurable, I have tried to focus on living my life rather than the fear of it being taken away. Most days two-year-old Henry keeps me too busy to have idle hands and mind, but there are times even my "Pollyanna" mom can't help me ignore those dark thoughts.

This would be one of those times.

Today the fun is over. We have checked out of our nice hotel, and are on our way to the cancer center. In a few hours, I will receive the verdict of yesterday's scan. It all boils down to one simple, yet very complicated question: IS THE MEDICINE WORKING?

My last scan said NO. So in the five months since, I started a new drug regimen, had a laparoscopic hysterectomy, had a brief hospital stay with pneumonia (supposedly not related to my cancer), and tweaked my dosage on multiple occasions to try and keep the crazy new side effects at bay. We also celebrated Henry's second birthday, my 34th birthday, traveled to Pensacola and Phoenix, and lived through a complete kitchen renovation. HA!

When I write it all out...I am pretty much painting the picture of a crazy person! But remember what I said about idle hands and mind? I do like to keep busy.

Last night as I lay in bed, I kept running through my checklist of new aches, pains and irritations and guessing whether they are attributed to the cancer, the medicine or the germs Henry brings home from Mother's Day Out. My itchy hands and annoying mouth sores are side effects, but is my cough from last month's cold or swollen lymph nodes? Is my trouble sleeping a side effect or just a touch of anxiety? What about my recurring headache? Medicine or cancer in my skull?

If it's not a good scan, we will switch medicines again, and I will get a whole new list of side effects to manage. I will also cross one more off the very finite list of drugs available for my kind of cancer. At last count, I was one drug away from the chemo chair. (And darn it, my summer hair highlights look great!) But Pollyanna reminds me of what my doctors all say - new drugs are coming down the pipeline.

If it is a good scan, I get to breathe a little easier this summer, at least until I'm back here for my next round of scanxiety.

I approach today cautiously optimistic. I am hopeful for good news, but prepare myself for dealing with whatever may come. We'll spend the sobering four-hour drive back to Dallas wrapping our heads around it all and remembering to focus on how truly lucky we are, despite our challenges. Because there is an awesome little guy at home, impatiently waiting to see us.

And like me, you'll just have to wait for the results. Here we go...

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.

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CATEGORIES [ EXERCISE, FEATURED ]

Do not hesitate!

BY GUEST BLOGGER | MAY 1, 2014

Leslie Waltke, guest CURE blogger
Last July, I found myself frantically clutching the rails of the Liberty Island Ferry readying myself to exit. The waters of New York Harbor heaved angrily. The ferry lurched and the steel exit platform upon which I was expected to step, intimidated me as it violently banged up and down. I was a tourist, a rookie; the situation was completely foreign to me, and I felt scared. As my turn approached, the crewman yelled sternly, "Do not hesitate!"

Seriously?! My world is being rocked, literally, and you want me to move?

My overwhelmed brain facing a sudden and tumultuous situation was happy to keep me right where I was. All I saw were white caps and the hungry 6-inch steel teeth slamming between me and the pier.

Responding to the firm instruction, I did as told. I took a step forward not at all sure my foot would land where it was supposed to. It did. I flushed with relief. Mr. White Uniform was right.

Back to work at the cancer center I chuckle to myself. Talking with my patients, I am in essence hollering, "Do not hesitate!" At cancer diagnosis, people are battered in a tumultuous sea. And my words to them?

"Move!"

Seriously?!

Yes. I wear a white uniform, and I am right.

There exists a subtle underlying assumption that people with cancer are supposed to be miserable. Family members and healthcare providers alike, in well-meaning attempts to be supportive, inadvertently promote weakness, fragility and dependence by speaking urging words like "take it easy."

Cancer is scary. Treatment can be brutal. Often people are miserable. Move? Me? Seriously?! But I'm missing a lung, my skin is burned, my colon was just rerouted. Of course you're afraid to move! Perhaps no one on your care team is even encouraging you to move. So you're stuck on the lurching ferry.

The misery of cancer treatment is not a good place to hang out. It's time to move. Not only is it OK for you to exercise during cancer treatment, you should exercise during cancer treatment. Necessary post-operative restrictions have expiration dates and research clearly shows that exercise during chemotherapy and radiation is safe and reduces side effects such as fatigue, pain and weakness. Those facing a knee or shoulder surgery are ushered into rehabilitation. You should be, too. Talk with your doctor or nurse about a prescription for cancer rehabilitation. We will help you take that step.

Moving is living. Do not hesitate. Go take a walk. Your feet, and you, deserve to be on the solid ground of good health, even in the middle of cancer treatment.

Leslie J. Waltke is a physical therapist with a clinical mastery in oncology. She is a national expert, author, speaker and educator in cancer rehabilitation and is the Cancer Rehabilitation Coordinator for Aurora Health Care in Milwaukee, Wisconsin.

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CATEGORIES [ YOUNG ADULTS ]

Young adults with cancer gather at OMG! conference in Las Vegas

BY GUEST BLOGGER | APRIL 30, 2014

Dan Shapiro, guest CURE blogger

I sit in a hotel conference room with 45 or so men, aged 20 to 50 or so. Some are in treatment right now, a few will be for the rest of their lives, and then there are a handful who were diagnosed a few decades ago, like me. Among the diverse diagnoses are men with testicular cancer, lymphomas, brain cancers, sarcomas and leukemias. And we seem to hail from all walks of life, an ex-steel worker with broad shoulders occupies a seat a few feet away from a doctor, there's an elite athlete who works for a tech startup next to a guy who works in a bowling alley. There's even a Hollywood actor in the mix. For the most part, we don't look ill and this could be a support group for anything. But it isn't anything, and this is an unusual meeting. I write this with some confidence after attending over 300 cancer-related conferences in the past 14 years.

I've never sat in a room with this many young adults with cancer in one place, especially not men. And we are vocal. With virtually no prompting, we talk about body image issues, bouts with depression, anorexia and post-traumatic stress, when to "come out" to potential romantic or sexual partners, and applying the resilience found in cancer to our occupations. While a few of the comments are superficial, for the most part these men have come to work and compared with other early support groups I've witnessed as a young adult survivor/psychologist, the ratio of substance to the superficial is weighted heavily on substance.

Perhaps equally surprising is the complete lack of machismo in the room. There's no posturing. I used to supervise group therapy run by psychiatry residents, and I was always grateful to have people who had been in alcoholics anonymous in the groups because they tend to cut through the superficial and focus on the issues quickly. This is what the room feels like.

"I've wrestled with anorexia and body image issues," one guy says. Another talks about how the disease obliterated his medical training. Others talk about how they'd handicapped themselves, thought of themselves as flawed and unnecessarily dampened their own ambitions or romantic expectations.

The group was one of many offerings at this past weekend's OMG! Conference sponsored by Stupid Cancer, a non-profit dedicated to young adults (women and men) diagnosed between ages 20 and 40. Over 450 young adults from around the country (and a few other countries) attended.

When I was diagnosed, I knew one other guy, my age, who'd had cancer. He was terrific, but we spoke by phone only twice during my first year of treatment. The waiting rooms and chemotherapy suites where I was treated in Hartford was a 60s and up crowd. It was like dropping down in a creaky elevator shaft into a dangerous coalmine and only speaking to one other guy who had been down there.

Even though I was diagnosed more than 25 years ago, the treatment environments for many, if not most young survivors, hasn't changed much. There are only a few centers nationwide that have young adult clinics. Perhaps this is why doctors are still not telling enough patients about fertility options, not referring us to clinicians who can address the body image and career fears we face, nor doing enough to help us navigate the long-term effects.

So, young adult survivors are trying to step up and fill those gaps. There were group sessions on genomics, chemical exposure, advocacy, meditation, managing anger, healthcare reform, panels for specific disease, nutrition and living with metastatic disease, among others. And perhaps more important, there was fun: scavenger hunts, night club dancing, bowling night and pool parties.

Perhaps the most remarkable aspect of the conference to me, having been active in the cancer community for 15 years or so, are the people who dedicate time and energy to this cause. Many of the activists are people who suffered when they were patients from a lack of access to other young survivors who might have helped them.

Amber Vance, a young woman with Hodgkin's disease was never informed about fertility options when she was diagnosed and now dedicates significant time to getting young survivors together for meet-ups.

Alli Ward, a main organizer of the conference, has lived through multiple relapses and gave a "Chronic Cancer" break-out session focused on living with metastatic disease. Jonny Imerman, a testicular cancer survivor, who has created an elaborate, national peer-to-peer mentorship program for young survivors based out of Chicago. And there were many more. There are camps, river trips, peer mentoring programs, fertility foundations, disease specific foundations and nutrition experts.

I did a talk at the conference this past Sunday and that evening, a cascade of social media followed, there were 30 new Facebook friends, a gaggle of new Twitter followers and photographs dancing across the electronic ether.

The cancer coalmine is still terrible. But going down now, with a lifeline to these volunteers and organized cancer warriors, would have been better.

Dan Shapiro is a psychologist and chair of the Humanities Department at the Penn State College of Medicine. He's written three books including, Mom's Marijuana (about his cancer experience) and "And In Health: A guide for couples facing cancer together." His writings about the patient experience and physician-patient communication have appeared in the New England Journal of Medicine, the New York Times, JAMA and he's been featured on National Public Radio's All Things Considered and Science Friday, among others.

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