Going to the Hill

I’ve lived in the DC area for almost 10 years now.  Until this point, I’ve managed to avoid getting involved in politics about as much as anyone could while living here.  But tomorrow, I will be spending the day on Capitol Hill, meeting with staff from the offices of my elected representatives.  I will be representing Debbie’s Dream Foundation: Curing Stomach Cancer (they just changed the name from Can’t Stomach Cancer due to some legal issues, but this is the same foundation everyone donated money to in March).  30 other advocates from 14 states, including my mom and Megan’s mom and sister, will be there too.  We are going to be asking our representatives to make medical research funding a priority when generating the country's budget, and to participate with us in asking the National Cancer Institute (NCI) to raise the profile of Stomach Cancer research in relation to other types of cancer.  This type of lobbying happens every day on the Hill, often by groups and organizations much larger than we will be.  But it is believed that this will be the first organized call on Congress by stomach cancer advocates.  I can’t say that I am overly excited about this foray into a political arena, but the fact is, if we don’t go ask for funding then someone else will.  And while the last thing I want to imply is that our cause is more important than anyone else’s, I think we have a strong case for why stomach cancer needs more research funding.

Leading Causes of Death in US, 1975 vs 2008. 

Percent of All Causes of Death.

Source: http://seer.cancer.gov/csr/1975_2008/results_merged/topic_lead_cod.pdf

In general, cancer is responsible for a larger percentage of all deaths in the US now than it was 30 years ago.  While the medical community knows more about cancer now than it did in the 80’s, it is obvious that there is still so much work that needs to be done.  Some of the most common cancers have had lots of funding applied towards them, mainly because there have been amazing people volunteering their time towards raising money and generating awareness.  That has resulted in a lot of foundational research being performed that could allow new, more targeted therapies to be developed.  And in many cases, those lessons learned could then be applied to the less common cancers.  As far as chemotherapy goes, that’s what you will get if you have stomach cancer – drugs first developed for other cancers.  Irinotecan and 5-FU are two popular drugs used for stomach cancer, but they are really colon cancer drugs.  I believe that Herceptin and Xeloda were developed for breast cancer.  From my amateur viewpoint, I think it’s great that some of the drugs developed for the big cancers have been able to improve the survival rates for the less common cancers.  But they have usually been minimal improvements, and the overall survival rates for the less common cancers have generally not improved as much.  The primary chemo drug that Meg received has been around for 40 years!  They haven't been able to find anything better than that yet.  Research is the key towards improved survival, and until more is understood about stomach cancer, there is not going to be that “home run” drug that makes a dramatic difference. 

While overall stomach cancer incidence numbers have decreased over the past 50 years, there have been a few alarming trends recently.  One is that an NCI study found that the likelihood of being diagnosed with gastric cancer at age 25-39 years has increased by almost 70 percent since 1977.  Another is that a number of studies have reported that the incidence rate for cancerous tumors at the junction between the esophagus and stomach has been rising.  Megan was 31 when they found the tumor at her GE (gastro-esophageal) junction, so she fits squarely into both of these statistics.  There is concern among some professionals that there are new types of stomach cancer appearing, brought on by new causes.  But they just don’t know enough about it yet.  Heck, when we went to Sloan, the doctor there told us he would classify Meg as having Esophageal cancer.  Everyone else said Stomach or Gastric.  That scares me.  If they don’t even know what to call it, how do they know how to treat it? 

We met with Dr. Ronan Kelly at Johns Hopkins for the first time in January.  We wanted to hear about some clinical trials that Megan might be eligible for.  He mentioned a few potential options for the future, but they were essentially all generic cancer trials.  There was nothing specifically targeted at stomach cancer.  Dr. Kelly expressed his frustration to us, saying that he just can’t get the government to give him a grant for stomach cancer research.  You don’t realize how much it crushes your sprits to meet with doctors over and over again and hear about how there just isn’t any promising research on the horizon.  We went to these large cancer centers looking for hope, and all we received were condolences. 

Charts showing NCI research funding in relation to (A) Incidence, (B) Mortalities, and (C) Years of Life Lost.
Source: http://www.ncbi.nlm.nih.gov/pubmed/22800364

When the current NCI cancer funding levels are critically analyzed, stomach cancer falls into the “underfunded” category, along with other cancers like bladder, esophageal, liver, oral, pancreatic, and uterine.  In fact, stomach cancer receives the least amount of funding per cancer death in the US.  I got the chart above from a paper I liked, titled “A comparison of cancer burden and research spending reveals discrepancies in the distribution of research funding.”  The one thing I would change is that I wouldn't call any cancer "overfunded".  I would never argue that money should be taken from another cancer to be put towards stomach cancer.  But that fact is that there are some cancers that just aren’t getting enough research funding, and I believe that stomach cancer leads that list.  

So tomorrow we will attempt to convey this viewpoint to our representatives in DC, in honor of Megan.  This may seem like a personal cause for us, and I guess it is, but let’s be honest here: no amount of research is going to bring Megan back to us.  We’re doing this in honor of her, but it’s not really for her, and it’s not for us.  It’s for everyone else.  We lived through the pain that this disease inflicted, and there are too many other families that are dealing with the same tragedy that we did.  Megan fought through nine months of chemotherapy, but she was never given much of a chance.  The doctors told me that I should be thankful that she even made it that long.  I am thankful, but only because I know how grave this diagnosis can be.  In the U.S., more than 10,000 families will lose a loved one to gastric cancer this year.  I don't think that giving them a few months each is good enough.

"Wait, you live in New Jersey, and she lives in Seattle?"

I went through some old pictures this weekend, and came across a few from our first year of college. Over the years, when people would ask us how we met, Meg and I would simply say that we lived in the same dorm during our first year at UVA.  There wasn't really a singular moment, so we’d say that there wasn’t really a good story to tell.  Well, it really isn’t that great of a story, because it happened slowly over several months.  But it is our story, and I’d like to post some more light-hearted entries every once in a while, so I thought I’d recount what I remember of how we got together.

The first time I saw Megan was actually months before we ever talked to each other.  We were at UVA orientation the summer before our first year (there were several orientation weekends, but we both picked the same one).  There was some session in a large auditorium, and once it was over, everyone started filing out quickly.  But I noticed one girl in a ponytail bouncing down the auditorium steps and heading right up to the desk at the front of the room.  She just started chatting away with the professor, and I sat there and watched her for a minute before leaving, impressed for two reasons.  One, this girl seemed like she had her act together. And two, I could tell that she was athletic and pretty, two qualities that are not necessarily abundant in engineering schools.

The second time I saw her was a few months later, when she happened to be walking through my hall with another girl that I knew on their way to the first chemistry exam. The three of us walked over together, and I recognized Meg as that ponytail girl from orientation. I started going over a few last minute exam items with the other girl, but Meg clearly didn’t want or need any help.  She might have chimed in a few times, but she barely even looked at me!  She just kept her focus and walked calmly to the exam.  I later learned that she was not the last-minute cramming type.  Megan’s approach was to feel like she did the work and knew the material, and trust that she was smart enough to come up with answers for anything that she might have missed. 

Later that fall, Meg gradually started hanging out with some of the guys that lived on my hall, including my roommate.  That first semester, I spent most of my time hanging with guys in another dorm that I had met during the first week of school.  My roommate and his friends didn’t seem like they went out too often, so I didn’t think I was missing much.  But when they went out for Halloween, they all congregated in the hall outside my room.  Meg came down, dressed in some of her mom’s clothes as a 70’s hippy.  That was the first time I was jealous that I wasn’t going out with them.

Meg came by our room a few times that semester to see my roommate; they were becoming friends.  The first time she hung out in our room, I had the website up for my high-school band, and there were a few pictures on the page, including one of me wearing a bleached-blonde wig during a show.  I convinced her that I used to have long hair, and didn’t tell her that I was joking until the next semester. Little did I know that long hair on guys was a major turn-off for her!

Milltown, NJ - July 4, 1999

When we came back to school after winter break, I started hanging out a bit more with that group that lived in my dorm.  We’d go to Mem Gym and play some pickup basketball, go to the cafeteria together, hang out in someone’s room, and go out on the weekends.  One night in February, we were out at a frat party and I started dancing with Meg.  She held my hand for a bit while walking home, but then I think she realized we were walking with a bunch of other people, and she let go.  So I wasn’t really sure how she felt about me at that point.

The next week, everyone came to a party at my frat house.  I was working the bar when they got there, and when Meg got a drink I told her I wanted to dance with her after my shift was over.  (If it wasn’t for alcohol, this whole affair would’ve probably taken even longer to transpire.)  So we danced for a while, and for some reason we left early, I think because Meg said she wasn't feeling great.  So we left the party and walked back to the dorms on our own.  We went back to my room, I got her some water, and she laid there for a bit, not feeling well.  Then all of a sudden we were making out.  Not sure how that transition happened!  (Don’t worry Mike, it was all very PG.)  A few minutes later, we heard keys in the doorknob, and the door flung wide open, with my roommate standing there.  He made some reactionary comment, then announced to everyone else that Meg was in our room.  He got into his bed, and we continued making out.  After a few minutes, he jumped up out of bed and got on his computer.  He started typing loudly, and wrote a four or five-page essay.  He printed it out, taped it to our front door, and then went back to bed.  The title of the essay, in large letters, was “This is my f****** life.” 

Ok, so it turns out my roommate might have had a crush on Meg.  Who would’ve known!?  It all worked out though.  He got back together with his high school girlfriend shortly after that.  Plus, we ended up becoming much better friends that semester, due in large part to Meg's influence.

The following week there was a double date function at our fraternity.  (That means you bring a date, and you also invite a friend to come with a date.)  Since our only previous interactions were alcohol-influenced, I was still a little nervous to ask Meg out.  She was in our room one night during the week, and my roommate caught me off guard by asking if there was a party at our frat that weekend.  I said something like, “Well, yeah, I was thinking maybe you guys could come with me?”  The next night, I explained to Meg that it was a date function, and asked if she’d want to go with me.  Several months later, Meg revealed to me that she and Brian already knew it was a date function - they had found out from someone else.  So Brian completely set me up with his question, and Meg often teased me about how un-suave I was about the whole thing.  Not that I needed someone to remind me of that!

Our first date - Late February 2000

So that’s how we started dating.  That semester was the best 5 months of my life (although my grades would beg to differ).  We had a great time with that group of friends from our dorm, I joined the fraternity and started making some really strong friendships, and I started dating this amazing girl.  I remember telling people how obvious it was, right from the start, that Meg was a keeper.  We had nothing but good times those first few months.  Combined with everything else that makes your first year of college so exciting, it will be a period that I always look back on with fond memories.  On the last night that everyone was in town, the group of us from our dorm went out for dinner, and then went to lay on the Lawn to stare at the stars and recall some of our favorite moments from the year.  I remember thinking how great that bond was that we all had together, and how much better it was for me with Megan there. 

The group of us from Kent on our last night - May 2000

The next day, with people starting to leave town, we went out to grab some dinner with a few of my pledge brothers.  On the bus heading to dinner, we were talking about what everyone was doing that summer.  My friend Craig looked at us and said, “Wait, you live in New Jersey, and she lives in Seattle? …  That’ll never last.”   =)

Cancer, Nutrition, Integrative Medicine, and a good website that ties it all together

When someone you love gets diagnosed with cancer, it can be a very helpless feeling.  You want to know what you can do to make a difference, and what kind of lifestyle changes will help give that person the best chance to survive.  You want to know what caused the cancer; maybe that will help you focus on certain areas.  For some types of cancer, the cause and effect may be obvious.  If you’re a long time smoker and get lung cancer, you know the reason.  If you’ve been a regular at the tanning booth for years and get skin cancer, you probably have an idea about what might have caused it.  But a lot of times, doctors will not be able to tell you what caused a cancer to grow.  That is often the case with stomach cancer. 

When Megan was diagnosed, the doctors weren’t very concerned with figuring out the root cause.  The focus was immediate chemotherapy and killing the tumors.  But I wanted to know.  And without any other information to go on, I correlated the location of her primary tumor (the junction between the stomach and esophagus) with what passed through that region – food. 

I can’t remember the exact timing, but I’m pretty sure it was the day that we got confirmation that it was stomach cancer that I printed out this list of food guidelines for the Gerson diet.  A few people mentioned the Gerson Therapy to us after finding it online or watching a documentary on it.  It’s an alternative, non-toxic approach to treating cancer.  In their words, “The Gerson Therapy is a natural treatment that activates the body’s extraordinary ability to heal itself through an organic, vegetarian diet, raw juices, coffee enemas and natural supplements.”  But it’s super-intense (yes, you read that correctly – coffee enemas), and although there are stories of people who have done well, I doubt that any oncologist would recommend it as a first-line therapy for someone with stage 4 cancer.  It’s probably more realistic for someone with very early stage cancer who is completely against chemotherapy.  I figured doing something like that would be a last-resort type of option for Meg. 

Their literature is also very clear that someone should not attempt to do the intense therapy while undergoing chemotherapy.  But, I thought that the list of prohibited foods was a good starting point for what we should not be eating.  So Megan and I went to Whole Foods that night with the list in our hand, and attempted to follow it while still going home with food that we could actually form into edible meals.  It wasn’t easy.  Even though we already ate a 99% vegetarian diet at home, the Gerson list ruled out so many of the things that we normally bought at the grocery store. That weekend, I cleaned out our refrigerator, throwing away anything that wasn’t organic.  Cutting down toxins and eating healthy was going to be the new plan.  I also went out with Meg’s mom and bought a Vitamix, so we could make protein shakes with leafy vegetables.  And I made a big pot of Gerson’s Hippocrates Soup, which was notable for being the first time I cooked with celery root, and also the first time I made soup with no added seasonings.  (It tasted exactly like you are imagining it might taste like.)

This was all well intentioned on my part, but it was not the right approach.

Megan could barely eat due to the pain she was in, and she was starting chemotherapy – a treatment that can wreak havoc on your appetite.  In a situation like that, the focus should really just be on getting calories and protein any way you can.  The oncologist at Georgetown told her that ice cream was a great thing to eat.  I was a little upset at that, but in retrospect he was right – it didn’t require chewing, and it provided some protein and calories.  She couldn’t eat anything those first few days after getting chemo, but slowly she started being able to eat and drink again.  The first goal was 800 calories a day, and it wasn’t easy, but Meg did her best to finish as much “Ensure” as she could.

After several weeks of chemo, Meg was finally back to a somewhat normal eating schedule and getting in a full load of calories.  I had been doing a lot of research, and was getting overwhelmed with all of the information available on the internet about what we should be focusing her diet on, and what natural supplements might be complementary to the primary chemo regimen that Meg was on.  I wanted some help from a professional who could help us decipher between what was real and what was a gimmick, and wanted to get some real guidance and motivation on what Megan should and should not be eating.  I found a nutritionist associated with the George Washington Center for Integrative Medicine.  I chose this nutritionist because she was associated with a University, and because she was a cancer survivor herself.  I also noticed that most of the big cancer hospitals had Integrative Medicine departments, so I thought this sounded like a good approach.  As Sloan-Kettering’s website says, “Integrative medicine uses evidenced-based complementary interventions to optimize the receipt of mainstream care by controlling the serious physical and emotional symptoms often experienced by patients before, during, and after therapy.”

We met with the nutritionist for 90 minutes, and she gave us a lot of information.  Here are some of my notes from the session:

Disclaimer: these are recommendations for someone with cancer - Megan specifically.  So they don’t all apply to healthy individuals.  And we needed to run everything by our oncologist, particularly the supplements.  These appointments are expensive and not usually covered by insurance, so I want to share the info.  But be sure to read the rest of this blog post before taking any advice presented here.

• Normally, she would put cancer survivors on a very strict diet.  Low sugar, no grains, no gluten, etc...  But she is not recommending that for Megan right now because it would eliminate too many food options.  Most important for Meg is keeping weight up and getting enough calories/protein. 
• She is recommending an anti-inflammatory, low-glycemic diet. 
• No fruit juices.  No Gatorade.  Look for sugar-free drinks.
• But ok to mix a little fruit juice in with water to make water easier to drink.
• No cakes/cookies/cupcakes
• Eat small meals/snacks throughout the day instead of large meals.
• Read labels – the protein and fiber should make up half of the carbohydrate total.
• Avoid artificial sweeteners.  But natural sweeteners like Stevia and Xylitol are ok.
• When it comes to organics, try to follow an 80/20 rule.  Impossible to go completely organic, but do organic for everything that you can.  If 80% is organic, then you are really limiting the pesticides.
• “Dirty dozen” attachment outlines which fruits and veggies need to be organic and which are ok to get conventional.
• Goal is 2000-2200 calories per day.
• Want to strive for 9-12 servings of fruits and veggies per day.  Mostly veggies (75%), and as many greens as possible.
• This is very hard to achieve, so a good option is to use “Green foods”, a powder supplement that can provide 6 or 8 servings of veggies in a single serving. 
• Berries are the best fruits but must be organic.
• Want to get a minimum of 65g of protein per day, shoot for 80g.
• Breakfast
• Eat cereals that are as plain as possible, without added sugar. 
• Regular cheerios instead of honey nut.
• Kashi lean is good
• Try almond or rice milk
• Canadian bacon or turkey bacon is ok
• Oatmeal is good
• When eating fruit, don’t eat it alone. Eat with a protein.
• Chipotle / Panera are ok.  They are GMO free.
• When making smoothies, make with 20g of protein per serving.
• Whey protein is best.  Get organic, preferably pasture raised.
• Use organic greek yogurt.  Would normally recommend non-fat, but normal yogurt is good for her now.
• Another option could be using coconut milk as the base.
• Things to avoid
• Flaxseed is not recommended as a primary source of omegas.  It is an inflammatory, and we want an anti-inflammatory diet. 
• Cut down on soy. No more than once a week.
• Clif bars – not low-glycemic. 
• Ice cream – ok as a snack once every three weeks.  But eat it with a protein.
• Supplements / vitamins
• Multivitamin with no Iron or Copper
• Vitamin D
• Omega 3
• Curcumin BCM95 (turmeric)
• Now Foods Pure AHCC (mushroom powder)

The main thing we took out of this was a reinforcement that we needed to focus on a low-glycemic diet.  We got the list of supplements approved by Megan’s oncologist, and started trying to work all of this stuff into our daily routine.  We did that for about two months, went for one follow-up appointment with the nutritionist, and everything seemed to be going pretty well.  That is, until we went for a second opinion at Sloan Kettering in November.  While we were there, the oncologist asked why Megan was taking such a long list of supplements.  He expressed a concern about overdoing it on anti-oxidants while undergoing chemotherapy, and asked if we would like to make an appointment with a nutritionist in their Integrative Medicine center.  We said sure, and we were able to have the appointment with their director of nutritional counseling, Donald Garrity, over the phone the next week.  He was a little more conservative than the first nutritionist, but I really liked what he had to say.  You could tell that he was associated with a leading research hospital, because he really tried to have a reason for each recommendation he made and often referred to nutritional trials and research.  Here are some of my notes from that conversation:

• He said if we were in his office we would see a 3-foot stack of papers on studies about the role of vitamins and supplements as they relate to cancer prevention.  At this point, opinions are split 50/50 as to whether or not they can really help prevent cancer.
• There is much less research on the role of supplements during active chemotherapy, maybe a 6 inch pile.  So no one can really tell you what the right answer is.  Because of that, he tends to be conservative about supplements during chemo.
• Supplements:
• Multi-vitamin is above and beyond what they would recommend.
• For multi-vitamin, during chemo stay at 100% DV.  The one she is on seems too high.
• Cancer cells absorb more vitamin C than healthy cells.  A subsequent study showed that it stabilized the cancer cell.
• Omega 3 – is a blood thinner.  Many benefits, but as long as your platelets are normal.
• Vitamin D – should stay in the middle of the range.  Get it checked, cut back if you hit 80.
• Curcumin – very promising. But acts like grapefruit juice.  Interacts with many medications.  Ok in-between chemo treatments.  But could inhibit the ability of the chemo to clear the body.
• AHCC – good, but still questions about interactions with chemo.  Try one of these, or alternate between them:
• Maitake Mushroom Extract D-Fraction: standard formula (not extra strength)
• From Grifron or Mushroom Wisdom
• Coriolus Versicolor
• Diet
• Avoid: white sugar, white flour, white fat
• Smaller meals
• Relaxed eating environments
• Favorite foods anytime of the day
• Eat extra calories when feeling well
• Soups, stews, casseroles (with added plant oils)
• Research
• Book: “Anti-cancer”
• Eugene Fine – sugar/cancer study.  Atkins diet slowed cancer growth in 50% of patients.
• Dr Andrew Weil - head of Integrative Med at Univ Arizona
• raised a fear that if you raise anti-oxidants during chemo, you may protect the cancer cells as well as healthy cells
• still hotly debated

Donald was very clear about something – he wasn’t trying to tell us that the other nutritionist was wrong.  In many areas, they both made very similar recommendations.  But when it came to supplements, he didn’t want to recommend anything that had the possibility of a negative impact during chemotherapy.  We agreed.  We wanted to make sure we were doing everything we could to maximize the effectiveness of the chemotherapy while minimizing the side effects.  If a study indicated that there was a chance this might not be the case for one of the supplements, we were going to play it safe.  So Megan cut back a bit on the multi-vitamin and vitamin D, stopped the curcumin, and replaced the AHCC with Maitake.  

2,000 words later, what’s the lesson here?  I’m not completely sure.  I think we did the right things, and I’d like to believe that Meg’s effort to eat healthy and cut most of the sugar out of her diet helped keep the cancer at bay for a little while, while keeping her strong enough to remain relatively active while undergoing chemo for 9 months.  But the reality is that we don’t know.  Unlike pharmaceuticals, there isn't big money in nutritional supplements and natural approaches to treatment.  Without large companies sponsoring these trials and lobbying the government to give them funding, they don’t get studied nearly enough.  You see so many articles about a fruit that can prevent cancer, or a natural approach to beating cancer.  But it’s usually anecdotal evidence at best, and hearsay at worst.

So that’s why I want to share the website that the nutritionist from Sloan pointed us to.  It’s one of the best sites I’ve found on the internet.

aboutherbs.com

That URL will redirect you to a segment of the Sloan-Kettering Integrative Medicine website.  On it, you can look up many herbs and supplements, and find (what seems to be) unbiased information about them.  There are two tabs for each “herb”.  The Healthcare Professional tab provides a summary of clinical studies that have been performed, and provides a list of references to actual research that has been conducted and published to the National Institute of Health.  The Consumer tab provides a “Bottom Line” written for the lay person, and addresses the purported uses and research evidence.  I’ve found this site to be a fantastic alternative to just looking things up on Wikipedia and hope I’m getting the right information.  The summaries are generally conservative, but the information is right there – you can read the studies and form your own opinions if you really want to.  If someone recommends that I start taking a new daily supplement in the future, I am definitely going to take the time to do some research on this site before putting it in my body.  In a world of unregulated supplement labels and unsubstantiated promises of “miracle cures,” I appreciate having someone pulling all of this information together.  It's not the answer, but it's a start.