TKI1258, BKM120, trial studies for metastatic breast cancer

There are two studies currently looking for participants. If you are a woman with metastatic breast cancer, and your oncologist hasn’t mentioned the studies to you, bring it up with them. I know the studies are being done nationwide right now (fall 2013). I was expected to begin pre-trial base-line markers this month, but I am not in the studies, after all. More in next blog about that, but I wanted to get this information out to those interested.

One study, TKI1258 (TKI) is a multi-center, randomized, double-blind, placebo controlled, phase II trial. It’s being evaluated for the safety and efficacy of TKI in combination with fulvestrant – also known as Faslodex (a shot). The trial will be of post-menopausal women with Her2, and HR+ breast cancer that have evidence of disease progression on or after [one] prior endocrine therapy.

The other trial study, BKM120, is a phase III randomized, double-blind placebo controlled study with BKM120 with fulvestrant. The participants will be post-menopausal women with hormone receptor positive or Her2-negative, locally advanced or metastatic breast cancer which progressed on or after aromatase inhibitor treatment.

There is expected to be 150 TKI and 1,060 BKM participants in the multi-center studies in the USA. Both studies are by the pharmaceutical company Novartis. The hospital where I go was looking for five patients for each study. If you’re interested in the study, look into it. It may take them a while to find matches.

Talk with your oncologist. Good luck!


The Importance of Encouraging Words

be positive Image Credit: Good Search

When you were diagnosed, or re-diagnosed, what was your reaction? Did you let your shock, anger, fear just come out in the office? Or did it hit you later? And, when it did hit, what was it like? Some people sit and cry. Some have a surge of fear or anger well up. Others turn analytical, turning their focus within.

Did you ever express your emotions as a knee jerk reaction in the exam room, only to be told by someone on the medical team, “Be positive.” That’s great advice, but I also think it depends when and where that advice is given. If you’re in the exam room and have just been diagnosed, or re-diagnosed, I think, “Be positive” is a cop-out for staff. They deal with the words all day, everyday—for cancer in someone else’s body. Even if it’s a re-diagnosis, it’s new information to you. If you’re the one who found the bump on your body, there’s still that phase where you don’t know if it’s cancer or not. There’s that waiting period. Blood test, biopsy, and maybe a scan or two.  I know it’s a matter of semantics, but hearing, “I’m sorry. Stay focused on the good” or “I know this is hard. Keep positive” has a better ring to it than, “Be  positive.”As if being positive will magically change the bump from malignant to benign over night.

For me, the doctor’s office is the place where I vent. I expect that to be the safe place for my complaints about side effects, and the place for me to ask tons of questions that have popped up since my last visit, or while hearing a new diagnosis. Being told to, “Be positive” at this point doesn’t help me. When I’m at home, I listen to hypnotherapy, beautiful music, and comedy. I walk the beach, or read New Thought books. I meditate. I pray. I surround myself with like-minded people, who will affirm good. I’ve just begun to travel again. I’m working a bit, too. My book is with an editor now. Being told, “Be positive” from a nurse as she hands me the doctor’s urgent orders for four tests, allows me to witness someone who’s uncomfortable with the moment. Ha! That makes two of us. . .

Like most people, I claim to be a positive person. For over thirty years, I’ve been steeped in New Thought (positive, practical spirituality). When I go dark, it feels very foreign to me. Even in really tough times, I can bring myself back to the Light, to break up the downward pull. Sometimes it means I come back to the Light 100 times a day. Like the Chinese proverb: Fall down seven times. Get up eight. It’s not about denying the dark side. It’s about denying the dark side, power.

It’s okay to be present with the diagnosis given you—but then you must decide how you walk this path. There will be moments you trip and fall. Your thoughts may go dark, you may hurt physically and emotionally. Tend to your wounds—then get up. Find the good in the situation. Find the good in life; in humanity.

If you hear, “Be positive” it’s because people want you to experience happiness. Cancer cannot take that away. (Well, okay, it can—but that’s because we drift off with it, giving cancer and it’s side effects the power to claim our life while we are still living.)

Grew Tomatoes. Now What?

tomato vine image credit: Good Search

Did you grow tomatoes this summer and now wonder what to do with them? If you can find a neighbor who grew zucchini, you’re in luck! Swap vegetables, and swap some recipes, too. Here are some facts about the tomato you can digest in good health:

When processed or cooked, tomatoes actually contain more lycopene than raw tomatoes. The structure of the antioxidant lycopene changes, making it more easily absorbed by our bodies. So, pour on the pasta sauce, and feel good about buying canned tomatoes in the winter. Just half-cup of tomato sauce is plenty for an adequate lycopene boost to your system. Food sources of lycopene have been found to be more beneficial than supplements. Here’s a link for more information about lycopene.


Tons of tomatoes—now what?

Tomatoes are consumed more than any other non-starchy vegetable in America. Here are some ideas to make sure they don’t go to waste.

  • Share them! If a friend or neighbor has plenty of something else, barter 😉
  • No sandwich is complete without a tomato slice.
  • Is spaghetti for dinner? Cook up some tomatoes, and crush them for the sauce.
  • To add some character to your breakfast eggs, dice some tomatoes.
  • Cold or warm tomato or gazpacho soup. You’re on your own here. I’ve never made either.
  • Stuff tomatoes like you would a stuffed pepper and cook, or stuff it with tuna, or cottage cheese.
  • Make stew or soup with all sorts of tomatoes: fresh, canned, dried – they each add their own flavor.

For snacks or h’orderves:

  • Make some salsa for a quick appetizer: (dice tomatoes, chop cilantro, onion, jalapeno pepper, garlic, and squeeze some lemon.) If you have a molcajete – a traditional Mexican version of a mortar and pestle, crush the ingredients – it’ll bring the flavor out even more by crushing them a bit. If you like smooth rather than chunky salsa, put things in the blender after you chop them up.
  • Another side dish or snack with tomato: thick slices of tomatoes and alternatively overlap with slices of mozzarella cheese as you make your way around a plate (If you’re near a Costco, they sell packages already sliced.) Add some fresh basil. Drizzle olive oil on top, and add salt and pepper, and balsamic vinegar if you want a stronger flavor.



Why Would You Leave Your Doctor?

bye bye doctor image credit: Good Search

Why would you leave your doctor? Let me count the ways:

Are you sick and tired of the hassles your doctor and/or his office put you through? Fed up with the communication breakdowns, the lack of bedside manner, or the errors from your doctor or his staff, including billing? Has your doctor gone high-tech and forgotten common sense, or the human touch? Perhaps their lingo is medical mojo.—Fine. But if I don’t understand it, educate me. Someone spent time educating you, Dr. Smarty Pants (Or is it Dr. Can’t be bothered?)

It’s your right to know what they are saying about you. You are a member on your medical team. Are you informed about your test results? Are your office visits rushed? I understand doctors are busy—so are many of their patients. Even if it looks like all we do is go to the doctors,—two doctor appointments can take all day long. How long do you wait to see your doctor?

Some people are afraid to get a second opinion, or to leave a doctor they’ve been with.

When I was diagnosed, I went for a second opinion. I stayed with the second surgical oncologist. After my first appointment with my oncologist (different from surgical oncologist), I left the appointment knowing it wasn’t a good fit. I called before my second appointment to ask for a transfer to another doctor. I’m happy I did. From that point on, I kept—and loved my medical team. Well. . . until three years into it. Then I left my reconstruction surgeon, and my only regret is that I hadn’t done so two years earlier. With the latter two changes, I remained at the same office for my medical care.

Some suggest talking to the administrative staff if you have issues with the doctor. I don’t agree with that, but I see where it could be less intimidating for some people. From what I hear and see, the staff speak too freely and in ear shot. They have no reason to be loyal to you, the patient. It’s not their medical license up for review.

Regarding my complaint over much larger implants than expected, a physician assistant replied, “I’m not going to tell [the surgeon] that!” Because my after surgery complaint was not passed on, I waited for my next appointment to ask, “Why am I larger than the implants being replaced? That was an agreed upon size.” In my case, I’d gone to someone other than the doctor, and they were afraid to tell the doctor my complaint!

Have you ever been forgotten in the exam room? I have. In waiting rooms, I now sit where the receptionist can see me. In the exam room, I pop my head out if I’m in there more than 15 minutes.

If surveys are sent to you, fill them out. You can do it anonymously, if you want.

If you do change doctors, by law, you are entitled to take your medical records with you. This September, patients should be able to get them electronically, too.

Consider leaving your doctor if:

  • If your questions aren’t answered, or they’re not answered in a way you understand.

Bring someone with you to the appointments if you’re having some trouble, and then you can decide if it’s you—stressed out, tired, hearing problems, or your doctor’s issue.

  • If your questions are faced with dismissal.

I show up with my yellow pad of paper. I’ve thought out questions before my appointment, and as things arise between appointments, I write them down on my pad of paper. Only one doctor has visibly shown dread with this. The office packed with patients, the doctor in fast speed robo-mode, and after my waiting one-and-a-half hours to be seen, I expected some answers. Five minutes later (this includes the time for pleasantries and the exam), the doctor went for the door handle. My list on my lap, I said, “Ohh nooo. I have questions for you.” The answers I got equated to a pat on the head and “We’re not there yet” which translated to (as always, I’m too busy for a patient to have a meltdown. I can’t answer the long version of those questions.)

  • If the doctor seems offended that you want a second opinion—keep walking.

It is common place for patients to get second opinions, and health insurance usually covers them.

Before you go to any doctor, make sure they are board certified, or board-eligible if they’re just out of medical school. If you have a doctor, and not sure they’re board certified, you can check at  or call (866) 275-2267.

Remember, you are also on your medical team. Sometime it comes down to chemistry. Other times, the doctor/patient relationship changes. Don’t stay out of loyalty if something is wrong.

It’s for your health.


Dog Days of Summer and Exercise

dogdaysofsummerimage credit: Good Search

Think of yourself as a dog. (I mean this in a good way!)



Lie down.

Good boy/girl!

Want to go exercise? Let’s go!

Here’s some more water.

During cancer treatment, you’ll want to exercise but may find you lack the energy and strength. Especially if your treatment is in the dog days of summer. I was grateful my treatment was in the summer. As my iron levels dropped, I was always cold—until hot flashes kicked in, then I was back to being cold. Do what you can—even if that means a walk to the mailbox three times a day.

If you live where the temperatures are hot, you have some options for exercise: Go to an air-conditioned gym, or community center, head for a pool, or get up at zero-thirty to beat the heat for some outdoor activity. (If your treatment is in the winter, and you live where it’s cold, the gym or community center again will protect you from the elements.) No matter what you do, make sure you’re paying attention to what your body is saying.

I originally thought I’d be walking the beach during my treatment months, even if slowly. Ha. During the months of my treatment, I walked about an-eighth of the boardwalk when I did venture to the beach (usually with a guest I wanted to take to the beach.) We’d last 20 minutes maximum, then I’d need to come home. The sun was too bright, and my endurance was too low. I’d spend the next day with a cold. It was so worth it. The beach was my sanity. When my mom would visit me, she’d offer to take me to the beach for 15-20 minutes. I’d just sit in the car. She’s go to the water’s edge before coming back to the car where I was sometimes asleep, or ready to go home.

Consider going to an indoor pool and sitting on a “noodle” like a swing, pumping with your legs, one at a time. Or “stand” perpendicular in the water, holding the “noodle” in front of you, and move your legs like an egg beater. It’s not a weight-bearing activity, but it’s a great place to be if your joints are aching, or you’re building your endurance. Once you have the energy and confidence, you can swim half short laps, building up to long lane laps if that’s your desire. Water aerobic classes are plentiful and work major muscle groups.

Whatever you do, start slowly. You will hear of people who walk “The Walk” right after treatment. Do not compare yourself with anyone else. Go at your pace. Listen to your body. Respect your needs.

Scoot over. Doggie wants to rest on the couch!



When we’re thirsty, we’re already dehydrating


image credit: Good Search

Water, water everywhere, not a drop to drink. . . . Did you know that the human body is made up mostly of water? Keep asking for refills! Without hydration, there is no life.

When we feel thirsty, it’s a sign we’re already dehydrating. According to American Institute for Cancer Research, when we feel thirsty, we’ve already lost 1-2 percent of body water. During chemo, I was told to be vigilant about staying hydrated. It was explained to me, “Chemo is busy burning up your inners. Staying hydrated flushes it out. It’s done it’s job, now get rid of it.” Here are some tips on what counts as a liquid, and how to avoid from filling up on liquids.

You won’t necessarily feel like drinking or eating during the months of chemo, and with age, the sense of thirst declines. Golden rule for all of us: Sip throughout the day to keep hydrated. Avoid things like sodas, coffee and alcohol. They all dehydrate the body. If you don’t like the taste of water, or need it a bit heavier, add a lemon, a sprig of mint, or a slice of cucumber. When I wanted something with more flavor, I’d drink juice, but add 40 percent of my glass would be water to thin it down. Juice straight was too heavy for me, and the taste too strong.

If the side effects of chemo or surgery anesthesia is making you constipated, don’t just rely on fiber to get things moving again. The fiber requires hydration. It’s not about drinking 32 oz. in one sitting. Sip throughout the day. In addition to constipation, it’ll help prevent dizziness, kidney troubles, indigestion, dry eyes, nose and mouth—and a moist mouth will help prevent cavities. Here’s a post on dry mouth, and protecting your teeth during chemo.


Healthy Kids: ages 2-12

kids cooking image credit: Good Search

This is taken from the American Institute for Cancer Research (AICR) Healthy Kids Today Toolkit. Eat powerful plant foods.

Take the cancer prevention pledge with your children and grandchildren:

I pledge to:

Help my child prepare this month’s recipe for Bean and Veggie Enchiladas. *See link for recipe.

Try one new vegetable each week.

Make a meal that contains only plant foods – vegetables, fruits, whole grains and beans – and no meat.

Incorporate different colored vegetables into our daily meals and snacks.

Tell each other what our favorite vegetable is – and give two reasons why.

It’s never too early to eat a healthy diet that includes plenty of cancer-fighting plant foods like vegetables for lower cancer risk. In fact, research suggests that new foods are even better accepted at ages 2 to 4 than they are at ages 4 to 8.

Related Links:

Bean and Veggie Enchilada recipe

*Benefits and tips for cooking with your child ages 2-12