Cognitively Better than I thought

I feel like my brain doesn't function as well as it did pre-chemotherapy and I wondered if my continued cognitive difficulties-particularly word finding when fatigued, could in fact be blamed on chemo/tamoxifen. Well, apparently I am not the only person who wondered this as a team of researchers enrolled 170 women in the Los Angeles area in a 1 year study. Ganz et al recently published the study "Impact of Adjuvant Endocrine Therapy on Quality of Life and Symptoms: Observational Data over 12 Months form the Mind-Body Study" in the Journal of Clinical Oncology. This observational study followed woman in 3 groups: No Endocrine therapy, Tamoxifen and Aromitase Inhibitor (AI). There was a significant difference in the age of the woman in the AI group over the tamoxifen group, as expected. AI is used in postmenopausal patients.

The authors looked at patients after primary treatment (enrollment), 6 months into endocrine therapy, and 1 year into endocrine therapy. The study found during enrollment and one year later that all breast cancer patients had significantly worse quality of life (QOL) scores than a control group of concurrent healthy woman. Well that is a little bit depressing. But regardless of type of endocrine therapy it was noted that even one year after the completion of primary treatment (being surgery, chemo, radiation or any combination) continued to have sleep disturbances, fatigue and cognitive issues. Those are some pretty big items that are going to affect your QOL one year out.  I think the most important finding of this study is best described by the authors as follows:

Adjuvant chemotherapy contributes significantly to greater symptoms in the year after primary treatment, and combined with ET (endocrine therapy), is likely responsible for the failure of some chemotherapy related symptoms to resolve. 

Yikes. I hope that this is the first of many publications from the authors and that they continue to study if endocrine therapy continues to affect folks for the duration of their endocrine therapy. But, you know people are only on these treatments for 10 years.

The statistically significant results that this study found was that both the AI and tamoxifen group had significantly more cognitive problems than the no ET group, with AI patients report significantly more cognitive problems. Interestingly, the tamoxifen group after a year reported significantly more bladder issues than both groups. I won't go into further detail, but I will say that I can attest to that. Both ET groups had a higher rate of hot flashes than the non-ET group and the AI group was statistically greater than the tamoxifen group. The AI group also had a significantly high rate of musculoskeletal problems than either group.

So, it is scientifically proven that at least in my first year after treatment my brain didn't work as well as it used to. We'll see if that can be extrapolated out over the years of treatment. However, in my own independent study with a sample size of one, I would say my cognitive function might be doing better than I thought. I took a certification examination in November for which I studied by reading 11 textbooks (2 of which I had previously read) and just found out that I passed and earned a couple more letters after my name.

Perhaps the cognitive difficulties decrease after the first year? I'll keep my independent study going because I will have to take at least 2 more national exams for certification during the remainder of my time on tamoxifen. Hopefully, I will continue to have positive outcomes.

 Source: Ganz, PA, Peterson L, Bower JE and Crespi CM. Impact of Adjuvant Edocrine Therapy on Quality of Life and Symptoms: Observational Data Over 12 Months from the Mind-Body Study. J Clin Oncol 34. DOI: 10.1200/JCO.2015.64.3866. 

Sucralose, downgraded to avoid!

I distinctly remember when Splenda (Sucralose) came out. My mother bought a lot of it. I baked a pecan pie with it. Then I did some research into it. Sucralose replaces a couple of hydroxyl groups with chlorine molecules. Chlorine. Like the stuff you put into your pool. But, that wasn't enough to get us to stop drinking beverages with it. It was enough to get me to stop baking with it.

Then in 2013 the Center for Science and Public Interest (CSPI) in their monthly publication Nutrition Action Newsletter released that an Italian institute, Ramazzini Institute, evaluated the additive and it has been linked to leukemia and blood cancers in male mice. Yes, mice are not humans, but that was enough evidence for my mother and I to completely cut it out.

Now, the Ramazzini Institute has finally published their study in a peer reviewed journal that details out how exposure over time can lead to increased risk.

Although CSPI states that the risk of over consumption of sugar (obesity, heart disease, diabetes) is greater than the cancer risk from sugar substitutes, I think I'll continue to avoid it. I'll add in  those on the CSPI chemical cuisine avoid list too.

Now, if I could just cut down on the sugar....(the battle continues)

Practicing the art of comfort in, dump out

I have blogged a couple of times about the great LA Times article on how to be a comfort to people and not say the wrong things in hard situations. For a refresher, here is the great Op-Ed piece by Susan Silk and Barry Goldman.

Over the past couple of weeks I have found and witnessed that it is often against people's first reactions to practice comfort in, dump out. People sometimes value their own pain over those who are in those inner most rings and it's really hard not to put yourself into the center. It really is ok to not say anything at all, especially if you don't know what to say. Never is this more on display than at a wake or a funeral.

My boyfriend's mother passed away from pancreatic cancer a little over 2 weeks ago. It's a really sad way to meet someone's entire extended family. For those who were just outside the inner circle (the inner circle being: my boyfriend, his dad and his brother) for the most part people were practicing comfort in. My main job was to give my bf a dump out ring and offer comfort in. It involved me biting my tongue when one relative decided to tell us about his theory that a cure for cancer exists and that it's a global conspiracy between big pharma to not release it. Being the "dump out ring" meant it was also my fault that pants don't fit, sweaters shrank and shoes just look stupid. Practicing comfort in can also sometimes mean that you buy a brand new winter coat because your person in the inner circle has become so fixated on it that it becomes a point of anger. A quick trip to Macy's and you get a smile on a face for the first time in weeks. Not all things are that easy. Sometimes you cry together in the grocery store, or you have to just listen and not try to fix during a 3 hr rant about how much the universe sucks right now.

After the funeral my boyfriend's father told me that he couldn't imagine what I went through with breast cancer. I told him that compared to everything he and his wife had been through that it wasn't even on the same level. He said his two sister (both concurrently in treatment for cancer) said the same thing. People often preach that cancer is cancer. There are some universal experiences, but there truly are different levels. I was never faced with writing my own obituary or picking out the outfit I wanted to be buried in. I didn't have to go down those roads. I hope to not have to for another 60 or so years.

I will forever be grateful for being given the chance to get to know my boyfriend's mother before she passed. It will always make me sad how short our time was, but for right now that's something I'll only share with the next circle up.

Rest in peace Joanne.

A little follow up and a little research

Yesterday, I had my Larry Bird (33 month) follow up for the PRESENT study. It's just blood work, urine and physical exam. You know, the usual. But, what is super exciting is that I am at the 33 month mark for the clinical trial. The 3 year clinical trial. I was given the date of my scans (CT, Bone, Heart, Mammogram) and the date of the last round of injections. Next month I will celebrate my 3 years being NED. Wow.

My follow up was uneventful. I am still Iron deficient. No one is worried. I've been eating less meat and I've been running. Not uncommon. I'm still not deficient enough that I have to take iron supplements or have further tests. So a hamburger and some Grape Nuts (highly fortified cereal) will be in my future.

While riding the bus home from work, smiling about good blood work I came across an article stating that sucrose (sugar) consumption had been linked to breast cancer. My dream bubble filled with cookies shattered into a million chocolate chips. I then hunted down the research study.

The article I read was siting the research study by Jiang et al, A Sucrose-Enriched Diet Promotes Tumorigenesis in Mammary Gland in Part through the 12-Lipoxygenase Pathway, published in the January 2016 edition of Cancer Research. Basically, the group at The University of Texas/MD Anderson took mice who had been injected with triple negative breast cancer cells or breast cancer lung mets and then randomized the mice varying levels of sucrose enriched diets. The control group received 0 g/kg of sucrose, then 62.5 g/kg of sucrose, 125 g/kg, 250 g/kg and 500 g/kg. The study found that those on the higher sucrose diets (125, 250, 500) had an early onset of tumors although no information about the statistical significance is stated. The statistically significant results that the study did find were that the mice on the high sucrose diets had larger tumors than the control (no sucrose) and had a significantly greater number of lung met tumors. Therefore this study did show that the inflammatory pathway (12-Lipoxygenase as referenced in the study title) which is stimulated by the ingestion of sucrose may play a role in the growth and spread of breast cancer tumors. However, the authors admit that the knowledge on the pathway that was being studied was incomplete. It also was testing triple negative breast cancer (that without hormonal markers). And it was also mice. And the results of the mice fed 62.5 g/kg were not mentioned.

Very interestingly, the mice on the higher sucrose containing diets did not gain statistically more weight than the control mice. Therefore, overweight-a known risk factor for breast cancer, cannot be the cause.

What does it mean? Well, it is difficult to ascertain what the results in a human will be from animal studies. Also, the mice were already given breast cancer so it does not address sugar consumption and the cause of breast cancer. It does however give me pause coming off the holiday season were I definitely over indulged in the sweets. It also makes me pull up my dietitian boot straps and start working towards getting back to the American Heart Associations goal of 24 g of added sugar. Which, I have tried to do every year as noted by my post from 2014. But, when I look at today I only had 12 g of added sugar. So, it can be done.

Happy Holidays

This holiday season has been crazy. I had something scheduled nearly every day since celebrating Thanksgiving. I am way behind in my reading for the most up to date science in the world of breast cancer. I'll make it my New Year's resolution to keep on top of it better. However, I will also resolve to continue to be present when I am with people and not choose looking at my phone, sending emails or blogging over spending time with other human beings. I will continue to be present and an active participant in life. I will continue to express my gratitude and continue to journal my gratitude periodically to keep me a happy human being.

I resolve that 2016 will be a happy, healthy year full of adventure and updating the world on the latest breast cancer research.

Until then, I have a whole bunch of Christmas cookies to eat.

Below is the Hail and Farewell from CBS Sunday morning. I was reminded while watching it this morning that we lost too great cancer advocates this past year, Stuart Scott and Lauren Hill. It does give you pause and motivation to keep making New Year's resolutions and living your life.

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Survivor Guidelines for a Survivorversary

Today is the 3 year anniversary of finishing chemotherapy. It is also the first day I have gone to work and not done something fun in the past 2 year. Unfortunately, it didn't work out with my work schedule to take today off, but I still made the most of it. And by most of it, I mean I read the new American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline. Do I know how to party or what? If you too want to be party animal you can read the full text here.

These guidelines are great step towards offering more standardized care and ideally helping to increase breast cancer survivors quality of life. In literature quality of life is often abbreviated QOL and it is such an important marker. The guidelines I also found to be quite comprehensive, so let's review some of the ACS/ASCO recommendations.

Follow up in the post treatment phase, the authors recommend a detailed history and physical every 3-6 months for the first 3 years, then every 6-12 months the next 2 years and then annually every year after with your oncology team. I think this will actually help people with the sudden drop off in appointments, also, after treatment. It can be a little jarring to go from weekly/monthly appointments down to nothing. It's also nice to know that at some point the frequency of trips to the doctor does drop off. That does help with the whole QOL

For screening for recurrence, lab tests and imaging and signs of recurrence the overall recommendation is that the oncology team SHOULD NOT offer routine lab tests or imaging, besides mammography, in patients who have no symptoms. The article goes on to state that patient's should be counseled on the signs of recurrence. These guidelines do not recommend that patients have MRIs as follow ups unless they are at high risk for recurrence (such as BRCA positive), because of the tendency for the amount of false positives. I found this fascinating that an annual mammogram may be enough screening as long as your not having any symptoms. I wonder if there is hope for me and not having to drink mochaccino flavored barium once the PRESENT study is done. It didn't mention anything about CT scans.

One of the major difficulties for breast cancer survivors is to continue on their endocrine treatment, or in my case tamoxifen. These guidelines offer concrete guidelines on how to lessen the side effects and hopefully increase the compliance. Many of the ways that musculoskeletal pain and neuropathy can be combated is through exercise. The guidelines recommend:
150 minutes of moderate or
75 minutes of vigorous aerobic exercise per week
and
strength training exercise twice a week. 

So as I was reading this as I skipped my run this morning as my plantar fasciitis has flared up, but it is important to find a way to keep moving.  Moderate exercise would be walking, vigorous would be running. (For more information on the difference, see the american heart association's definitions here)

Another major side effect that puts breast cancer survivors at higher risk for recurrence is being overweight/obese. I found the statistic astounding that 61% of breast cancer survivors were overweight with 30% being obese. I hear all the time the importance of maintaining a healthy body weight and how the breast cancer treatment can make people gain weight, I just didn't realize how many were struggling with this recommendation.

The guidelines outline a basic diet that all human beings should follow without specific recommendations re:soy or flax. They recommend a diet:
High in Fruits, Vegetables, Whole Grains and legumes and low in Saturated Fat. The dietitian in me was not surprised to read this. This is the general diet that most of the world should follow. And then I got off the bus and ate a cinnamon roll. Because I'm human. (And then followed it with plain nonfat yogurt and berries, for balance) And they recommend limiting alcohol to at most 1 serving/day. Some studies have shown reducing alcohol to less than 4 servings per week to be beneficial, but there was not enough information for the authors to fully comment on that.

Many of the recommendations were for post menopausal women as they make up the largest group of breast cancer survivors, but one particular recommendation was made. A baseline DEXA scan should be done to check your bone health. Apparently, chemotherapy and long term SERM (drugs like tamoxifen) can decrease your bone density and put you at higher risk for osteoporosis. Good to know.

The other major QOL recommendation that these guidelines made was to address FOR. Fear of Recurrence. FOR is real and palpable sometimes. Some of my cancer friends are often paralyzed by it, so it is good to see it being addressed in the guidelines.

The bottom line for me
1) Keep my bottom line in check (i.e maintain a healthy weight)
2) Continue to eat a heart health diet (cinnamon rolls not withstanding)
3) Just keep running or moving or dancing
4) I need to add an additional weight lifting day in as I currently only get one
5) I'll keep taking my 1000 units of vitamin D3 daily for my bone health
6) I'll have to ask my oncologist if I should be getting a DEXA scan? (to check my baseline bone health, ugg do I really want to ask for more tests)

and most importantly

7) Don't let the FOR ruin your QOL

(I think I need a bumper sticker that says this. Except for that I don't drive. Maybe the MBTA would let me put it on my bus.)

Tis the Season to be Grateful

I love Thanksgiving. It combines many of my favorite things; family, food and sharing gratitude. I haven't been writing in my gratitude journal on a regular basis, but when I am having a down week I write in it for a couple of consecutive days. I also write in it when there are things happening in my life that I truly feel grateful so that when I go back and read it I can remember the feeling I had that day/week/month.

In honor of Thanksgiving I went through and found a random sampling of things I have written in the past 6 months;

4/27: Today I am grateful for CLEAN SCANS!!
You betcha. If nothing else, I will be thankful every day for my health.I have multiple entries about being grateful for modern medicine and the excellent health care team and treatment I receive. I also, continue to be grateful for all of those people who came before me and tested out my chemo, radiation and surgery. It is what drives me to continue to be an active participant in the PRESENT trial and send my blood around the country.

3/30: Today I am grateful for peanut butter
Yeah, I have a bunch of posts about being grateful for certain foods. Ginger made an appearance the past couple of weeks with my stomach issues. But, as well documented nothing tops my list more than my Mom's mashed potatoes.

8/21: Today I am grateful for my co-survivors 
Honestly, I don't remember why I was so grateful on this particular day for my friends and family, but I do remember everyday why I am grateful for such a strong support system. My co survivors are always willing to lend an ear, offer advice or continue to offer encouragement.

9/18: Today I am grateful for the anticipation of vacation 
I have been pretty fortunate to have a job that allows and encourages for ample time off in a year. I have gone to have fun with my niece a couple of times this year, took a trip to Florida with the BF and done multiple little mini trips.

6/15: Today I am grateful that baking remains a stress release 
Since last Thursday I have made 17 dozen cookies and two cranberry pumpkin coffee cakes with cinnamon streusel. I'm feeling pretty relaxed headed into the holiday. Nothing like baking with your music blaring to put you in your happy place.

Today I am grateful for keeping my gratitude journal. 
It really puts you in the holiday spirit to read all the people, things and ideas you've been grateful for through out the past 6 months. It's an excellent mood elevator.

Happy Thanksgiving!