Breast cancer, and seeking advice

[AlaskaAngel]

Hi All,

As someone who is 7 years out from treatment but admittedly just stage T1c to begin with -- and never having had trastuzumab -- I don't know for sure why, or what works. Most of the trials require on-site visits, and as an Alaskan that is very spendy for me to do. I have done 2 clinical trials and been considered for another. If I lived near some of these trials, I'd be banging at their door to join in so that there might be better proof one way or the other.

I do usually go to Seattle once a year to see specialists and have some testing done. Three or four years ago I saw a naturopath at a cancer center there, but the one I saw was NOT the primary one available and I thought he did a very poor job (I think SuzanW also may have seen the same guy...).

Last year instead my PCP here gave me a referral to an RD at the same cancer center, and I saw the RD because I wanted both nutritional advice and was deadlocked with losing weight despite exercise and dieting. His advice primarily was that I was eating the right things... but by limiting my diet to around 1,000 calories, I wasn't eating enough to burn, and also that adding more food might mean I would have to add more exercise than I was already doing. I honestly don't know if asking someone who has been through treatment and is 57 years old to exercise an hour a day 7 days a week is realistic even though physiologically that may be what it takes to achieve adequate weight loss. Anyway, I mention it because others may be interested in knowing that I have found it to be true that I do just as well exercising the same 1/2 hour a day and eating about 1200 calories a day as I did when I was torturing myself at 1,000 calories a day (and I sure am happier), whether or not I am losing weight.

Daily exercise is good for me mentally and makes me stronger, and I hope it helps to prevent recurrence. But I ain't no 36-26-36.....

I just returned recently from Seattle and seeing the same RD. During the dark and rainy winter last year I didn't exercise as consistently even though I did conscientiously diet. I had gained weight, and in addition, after exercising and dieting all summer that weight had not gone away. I continue to struggle with it.

Suggestions are welcome.

AlaskaAngel

[Jackie07]

AlaskaAngel,

I think (just my personal intuition) it might be good to be a little bit over the ideal weight while you are in Alaska. It is very cold there as I understand. And to survive that environment one probably needs a little bit thicker hypodermis.

But if you really want to lose weight, try vegetable diet but not excluding milk and eggs (plus multivitamin). My Mother started the diet when she was 65 and lost 20 lbs. She is 86 right now and has been back to regular diet since she's 73. She's also a cancer survivor (non-Hodgekins Lymphoma.)

[AlaskaAngel]

Thanks, Jackie07, for the suggestion. I do eat fish, some chicken, and about 2 eggs a month, for protein, but other than a small amount of 1% milk and about 1 pat of real organic butter a day, I avoid dairy products.

To me the changes in "me" as a result of treatment and menopause end up being very similar to being diabetic except that labs show my sugar is always in the normal range. I am similar to a diabetic in that if I don't follow a diet that is basically the American Diabetic Association (ADA) diet then I gain weight -- and I gain it much faster than I would have gained it prior to having treatment.

If what happened to me did change me to be more like a diabetic, I just wish somebody who does research would do more than leave us to endlessly exercise and diet without losing weight. I think if they tried, they could figure out whether using a much lower dose of a diabetic medication (like metformin) might help.

AlaskaAngel

[harrie]

AlaskaAngel,
I honestly feel exercising an hr a day for a 57 yr old person, who is in good health, is reasonable. Of course you need to know what your capabilities are and work up to it if it is something you are not use to. But to me it is a great goal. Be smart about what exercises you do though so you do not get hurt.

[AlaskaAngel]

Hi Harrie,

What good are we for each other if we can't be honest. I appreciate your feedback.

For months I have been doing 30 minutes a day of jumping rope, 7 days a week, along with dieting, with no weight loss at all, and my reward for all that effort has been.... no further weight gain. So the problem for me has been, how do I avoid weight gain if I have a day whenever I am, for example, traveling, or have to be dressed up (and so can't sweat)?

What I have done was to put on tennis shoes and jump rope for 30 minutes in ferry terminals, or anywhere else I happened to be, while keeping my eye on my luggage.... the only other solution has been to cut the diet down to 500 calories on any day when I am traveling or sick or happen to be in medical appointments all day long. I know that 500 calories a day is an unhealthy diet. I can't honestly say that I would think living like that is a realistic choice that I would recommend to anyone.

But if I don't, I put on weight.

So yes, the other alternative is to make sure that I jump rope for 1/2 hour a day (and sweat) whether I am in a ferry terminal or a hospital, or wherever I am, no matter how I might be dressed.... And that still means no weight loss at all.

I thought I was doing exercise that was safe. But several weeks ago I woke up with a back problem from doing this that has taken several weeks to heal, and I am now trying to see if I can work my way back up gradually from 10 minutes of jumping rope a day to at least 20 or 30. In the meantime, what choices would you recommend that I make about diet so that I don't gain weight?

Again, I am asking for very truthful help with what I'm trying to do. Do you personally exercise every day 7 days a week for a full hour without any exceptions? Are you over 55 years of age?

Thanks for thinking about this with me.

A.A.

[Guest]

Try interval training. Keeping the pace and amount of exercise the same allows the body to adjust and you don't get additional weight loss. You need to mix it up. Consult a trainer and they can set up a program for you. It's worth the fee.

Sue

[harrie]

AA,
Yes, I am over 55 yrs old and yes i do exercise for about an hr a day, 6 days a wk (although I could do 7, but am trying to incorporate a day of rest) I am an exercise fanatic. I do yoga maybe 4 times per wk at a yoga class, cardio maybe 3 times a wk, and lift light wts maybe 2 or 3 times per wk for maybe 1/2 hr.

Your exercise sounds very intense. Your cardio is more intense then mine! Theoretically, you should be losing wt.

I do know of a friend of mine, in her early 40s who was in awesome shape prior to chemo and bc. An athelete to say the least: surfer, triathelete, runner... Since being on an estrogen blocker she has gained tons of wt (over 20 lbs) and she still exercises religiously. Go figure... My personal assumption is that with the loss of estrogen and being thrown into menopause at an early age, her brain has somehow decided her body needs to retain fat. what else could be the reasoning? Her diet is very good also.

[AlaskaAngel]

Harrie,

If I looked as young and as nice as you do I'd probably be a fitness enthusiast too!

Sue's suggestion reminded me that the RD did suggest I do "resistance" training as well as the aerobic exercise of jumping rope.... Hi Sue... (are you over 55?) Does "resistance" training mean weights or machines, or both, or either one?

A key question here. How do you guys get past the boredom of the repetitiveness of exercise? The whole time I'm doing it, I cannot wait to be done. I tried using a timer so that I wasn't constantly looking at my watch, and that helped a little.... but by 30 minutes I'm counting the seconds, not minutes.

I decided to do some checking and share it here for those like me who are stuck, but healthy enough to exercise.

We have a Curves place here. They don't offer a personal trainer but provide a circuit of exercise machines of some kind and will show a person how to safely use the machines for about $56 a month. (Not including the gas to get there and back each day, which for me is 25 miles.) So, that plus a commitment of 2 1/2 hours per day (driving time + 1 hour of exercise + 1/2 hour to shower).

We have one fitness place here with a physical trainer. Initial session estimate, $80-$90 -- and to find out what the rest of the costs would be, I have to speak with the trainer (who was busy). Plus the same commitment of 2 1/2 hours per day, and gas for the trip.

So in terms of the average Joe-leen on the forums here.... neither choice would have been possible for me time-wise if I were a full-time employee.... or if I were raising kids...

I'm self-employed, and my schedule is not exactly my own (it varies daily entirely unpredictably depending on the antics of my clients). No kids to mind.

In all honesty the whole exercise idea would probably fit the most people on the forum if it wasn't expensive and took the least amount of time out of their day. And that, plus the driving conditions with the weather here in winter, is why I would like to figure out some routine I can do at home. So is it essential to have access to the sophisticated equipment, or is exercise something that can be done at home? I have the little barbell weights, and Therabands. I wouldn't even mind doing a session or two with a personal trainer if spendy machines don't have to be part of the deal. What do you think?

What would you recommend for caloric intake while my back is healing, to avoid gaining weight, Tanya?

A.A.

[harrie]

For me it is not a chore to exercise and I think it is because it is so much a part of my life. so when I don't excerise, I really miss it. After a good workout, I just love the feeling of relaxation and the release of endorphines.
I never workout at home. To me I find it motivating to be in a gym with others who are also working out. At home I have too many distractions. I also have my bag packed and head straight to workout directly after work. I do not go home.
Interval training is a great cardio program. A combination of alternating walking quickly and then jogging is great. I usually set my running for a min or a min and a half then lower the intensity for a min or so.
I also like diversity in my workouts. I would be very bored if I just stuck to one thing at the gym. At times I would split my cardio between 3 machines in the gym, maybe 15 min for each.
Hope this helps.
maryanne

[lizm100]

AA-

I used to be a nutritional counselor in my college days, back in the early-mid 90's. I was trained by the diet center I worked for. What worked best for my clients is several small low fat meals through out the day along with exercise ofcourse. For example, a low fat breakfast then about 1-2 hrs later a small mid morning snack. Lunch about 1-2 hrs later a mid afternoon snack. A sensible dinner but not too late into the evening. At least 8-8oz of water to flush out the body. Back then we made the meal plans low fat and low carbs (usually complex carbs).

I had clients that would try to eat less than they were supposed to and ended up not losing or actally gaining weight b/c their body would go into starvation mode. I wonder is this what is happening to you? Since, obviously you've worked hard on your own and understand the frustration you are experiencing.

Based on my experience, I'm wondering you're not consuming enough calories or the type of calories you are consuming i.e. carbs.

For my body chemisty I can eat all the veggies, dip, cheese and protein I want and will not gain (actually I might even lose weight) but my body is extremely sensitive to carbs. I swear that if I just look at carbs I gain weight. If I diet, my diet has to be extremely low carb. I can't elliminate carbs all together, or I don't feel good I end up with a migraine.

Curves does have an excellent program (atleast that's what I've heard) but the time commitment is extreme. I never go to a gym b/c of time constraints with work and 3 young children (2 of them play multiple sports each) I have no time to run to the gym. What has helped me is I try to go for brisk walks all year round (despite the weather) according to my Physical Therapist, walks are great for those who have a bad back. Many times with a flashlight (at night) with the winter gear, or rain coat if necessary. Hand weights at least 3 times a week. I use the exercise ball ( the web has alot of work outs). Lastly, I found belly dancing to be fun. I bought the DVD's from Amazon. There's a few DVD's by Rania "Belly Dancing Fitness for Weight Loss" to be my favorite. We all have to incorporate work outs that we enjoy and work for our type of lifestyle. There are exercises that can be downloaded off the internet for just a few dollars. I think my local fitness channel has this offer. If your inerested, let me know and I'll try to get the actual websit.

I hope you find a happy medium that works for you. You've always been very helpfull with advice and I hope that someone on this site is able to do the same for you.

[AlaskaAngel]

Hi lizm100,

I'm getting some great suggestions here and still thinking ALL of them over.

I'm a little hardheaded. Becky was the first one some time ago who suggested what you did:

"I had clients that would try to eat less than they were supposed to and ended up not losing or actally gaining weight b/c their body would go into starvation mode. I wonder is this what is happening to you? Since, obviously you've worked hard on your own and understand the frustration you are experiencing.

Based on my experience, I'm wondering you're not consuming enough calories or the type of calories you are consuming i.e. carbs. "

The RD I saw in Seattle said the same thing to me. Psychologically, it is hard to understand that because I want to know the actual physiologic sequence. (It reminds me of my question, "If I am having endless hot flashes, why aren't those burning up calories?") How can reduced gas (calories) end up making my "car" run regardless? I've had the problem for so long that I am now actually fearful about adding calories, because when I gain a single pound, it takes a month or more of exercising harder to lose that one pound and keep it off.

I think part of that rather extreme fear for me may be exactly what you suggest -- that certain foods are particularly counter-productive for me, possibly carbs. I'm very disciplined about diet, to the point where even though I buy foods like corn and potatoes, and also make baked goods for my sweetie, I don't eat them. But I do eat such carbs as oatmeal, and whole-grain bread.

The RD I saw in Seattle recommended (based on the 1,000 calorie 2-week diet record I gave him) that I eat most of my calories at breakfast and lunch, with very little at dinner and that is what I am doing.

I'm a little puzzled.... if I am carb-sensitive, and I should be doing a low-fat diet, then that points back more to what Jackie07 recommended, in order to add substantially more calories?

[DianneS]

I am 5 foot 3 and weigh about 135. I went up to about 145 during chemo but after that was over, and I could get outside and walk the weight dropped and has stayed in the same range for several months. I am also 56 years old and have been walking on trails in British Columbia for years. I could never exercise in a gym! But for some folks that's ok. Being outside has the added advantage of breathing fresh air and not someone's gym socks :) and I end up going further that I planned on my hikes because I get into a stride.....I also take my two dogs for insurance against bears. Granted, there are many days that it rains here and weather is inclement but I just dress for it. We hike in the snow, it doesn't matter. When I lived way up in northern BC in 2004-5 almost to the Yukon (Canada) it was minus 45 degrees. I still walked every day...maybe a little faster to keep from freezing. Snowshoes were a great workout too.

The trick is to find an exercise that you like and will do daily. But I was reading that 3-5 days a week is enough - I think for an hour? Alaska Angel, do you have access to an indoor heated pool at a rec centre where you live? That's one way to keep slim. You guys have pretty nice summers in Alaska, and it doesn't get dark during that time (how well I remember putting garbage bags over windows to shut out the sun at midnight :)). What I'm saying is, you have a long summer season to be active but a short winter day - are winters a challenge? Can you join up with other women and take walks? And no, you certainly are not too old to exercise....up to you whether you want to exercise daily. There are women where I live in their 60's who walk several miles a day at least 3 days a week, and I don't live where it's flat - very mountainous. If your doctor clears you for exercise, and you start out slowly and build up, you will find that you just 'have' to get out there and get those endorfins going. (That word doesn't look like it's spelled right).

Also, because I will eat the entire package, I keep goodies out of my house, and it's too far to go to a store to get more. Do your snacks tend to be cookies or fruit, or something low fat?

It's a struggle as we get older to keep the bulge away. For me, walking keeps me sane as well as a little slimmer. (I'm no 36-24-36 either, never was).

Dianne

[Gerri]

I am 56 years old and was already overweight when diagnosed in '05, after chemo I put on another 30 pounds. I decided to try to eat healthier and thought I was eating a pretty balanced diet but still wasn't losing weight. I joined Weight Watchers at the very end of August last year and as of today I have lost 54.4 pounds. I hate to admit that I have done very little exercise up until now, but am sure that becoming more active would help me reach my goal quicker. I am trying to incorporate walking into my lunch hour, but only average about 3 days a week. I know that I need to start some resistance training to improve my muscle tone.

Weight Watchers was the ticket for me. The program is very easy to follow and I am thrilled with my success.

Good luck ladies!

[Guest]

Weight Watchers is a great suggestion. I know many people who have had success with this program.

I was thinking about the gym vs outside idea. I've done both but do prefer to get outside for some fresh air, good for the mind and body, although sometimes the gym is more inspiring and helps with mixing up the type of workout I do. I was thinking about getting a Wii Fit program. I hear good things and this would allow me to exercise at home but mix it up a little from walking/running. Has anyone tried the Wii Fit program?

Sue

[harrie]

The people I know who purchased the wii fit absolutely loved it at first. Every person that I know discontinued use after about 6 months.

[TanyaRD]

AA- Sorry for my slow response. It looks like you have had some good conversation here. Weight gain is frequently one of the frustrating, negative side effects women experience after a diagnosis of breast cancer. It is often difficult to lose the weight gained too. From the information you provided, I might agree that it is possible you are eating too little (500-1200 cals/day) especially if you eat the bulk of your calories in the morning. We know the body does best with a more consistent input of calories. When talking about recurrence, I often refer to the WINS trial which found that woman who follow a very low fat diet (15-20% cals from fat) had a significantly lower risk of recurrence. Now that doesn't mean one can eat all the fat free cookies desired and not worry as calories are still important. Staying above 1200 calories per day will allow you to receive adequate vitamins, like calcium, protein and adequate energy. You may need more based on height and weight. The important thing will be eating regularly and maintaining physical activity. It sounds like you are working very hard and should be applauded for your efforts.

[AlaskaAngel]

Hi Everyone,

Sorry for not responding sooner! I had my annual physical Monday at the same time my work exploded (naturally).

All of this has made me very curious to actually test out some of the different suggestions everyone has offered me here. I stopped at the fitness center and picked up their flyer, and talked with the rather nice and enthusiastic young man there who is being trained by his mother (who is the trainer) to be a trainer himself.

All test results came back fine and my physical exam went well. I had a great discussion with the NP, who agrees that trying to limit inflammation is meaningful, by exercise and diet. Having had no provider until now who has been interested in that, I'm glad to make that connection here. I'm cleared to exercise, although limited in that I still can't jump rope as much as before and I can't use the rowing machine I do have at home just yet.

I was disappointed that the report the RD at the Seattle cancer center provides to my NP was not available to discuss. I had hoped to bring back any comments with the NP about it to you all.

The NP also knew about another trainer here, so I'm hoping to check that out. I'm not interested in working out with machines at the center. I honestly cannot figure out how to think of that as not being entirely a form of punishment. Even doing exercises at home is a form of repetitive captivity to count exercises until done for the day. But the trainer I talked with is willing to evaluate me and then give me a few routines to do at home with simple exercise equipment, that I can mix with walking.

Since our private road is fine for walking and driving here for another month, I have decided to commit to doing an hour of exercise daily 7 days a week for the month of October, along with increasing my total calories. A full month should give me clear proof of weight loss, or not, with the extra consistent effort. IF the theory works and there is actual weight loss, then hopefully the trainer will help with exercise I can do at home to continue in November without having to walk or drive once our road is icy and slick.

If adding consistent daily exercise and more calories doesn't work we will find that out. I am also willing to see if Weightwatchers works, as I have never tried that.

I have arranged to be weighed on the same scale by the NP at the end of October, wearing the same clothes and shoes that I wore to see her.

A.A.

[TanyaRD]

Sounds like a wonderful plan. Keep us posted on your progress.

[Bill]

Hi AA! Are you using those small hand weights? Maybe a quick workout with a pound or two several times a week would help maintain/increase your muscle mass. There are alot of interesting exercises you can do with small weights and you can make up some on your own. Also, you could carry one of those grip-spring things wherever you travel and do a few sets anywhere. I highly recommend trying some T'ai chi, or yoga. There are alot of good videos out there these days. Don't give up the jump-roping, though. It's awesome that you can go for 30 minutes. Jumping rope like that helps in so many ways- balance, co-ordination, overall body workout. In my opinion, it sounds like you need to eat a little more. Maybe try varying how you eat. One week, low fat, one week only soups and salads, one week gorge yourself on healthy fish and nuts. Mix it up and see if you can kick-start your metabolism. Good luck!

[Rich66]

Listen to Bill, despite the crazy comb-over.
I think I heard recently that weight lifting/training excercise triggers more weight loss than cardio. Although..me thinks fear of bears could elicit some really powerful cardio workouts. And throwing your trail mix away from you to direct them leaves you with minimal caloric input.

[AlaskaAngel]

Hello Bill and Rich,

Day 5 here, and still stompin along.... I'm hoping I managed an avatar for you to see.... I could have lightened it a bit -- but this is a reality show, and it was just me and the eagles out there again this morning.

I am hugely interested in doing this to the "T", to find out if there is any way out of the dilemma of consistent daily exercise and controlled adequate calories = no weight loss.

I am continuing some rope jumping every day because I do think some aerobic exercise is important. I will even do the aggravatingly repetitious barbells (thanks, guys....) just to find out for sure what works versus what is evidence of imagination.

As you can see if my avatar works, the home of the bears is only a step away from the edge of the road -- there ain't nothing behind them trees but more trees and muskeg (and wildlife...), so it is a bit chancy in summer -- but this is October...... right???

A.A.

[AlaskaAngel]

I don't know how long the link will work, but I dedicate this post to Harrie, with affection:

http://www.cnn.com/2009/HEALTH/10/14/obesity.irpt/index.html?iref=mpstoryview

A.A.

(puff puff)

[Jackie07]

A.A.

I am very curious about how much your weight is right now. Are you currently at your ideal weight? Are you underweight? Are you overweight?

The reason why I am asking is because I was always underweight when I had serious illnesses. Right now I am eating a pretty balanced meal. With my irritable bowel problem seemingly gone, I am hoping to gain some weight to reach my ideal weight.

[harrie]

AA, thanks for the link, I cked it out! Talk about a success story! I want to read YOUR story someday!!
Hows the program going?

[AlaskaAngel]

Hi Harrie,

Tomorrow is the big day....the halfway point of the month of exercise. I go in wearing the same clothes and shoes to be weighed by the nurse. I have stuck to the conditions I set for myself. Luckily, we have not yet had bad weather. I had to reduce the rope jumping and increase the brisk walking, as the rope jumping was bothering my back a little. I can't tell if there has been any change in weight or not. But I will report whatever I find out....

A.A.

[AlaskaAngel]

Hi Jackie,

I'm considered overweight, not obese, by BMI. I'm very frustrated because it took 6 years to get from obese after treatment at 178 pounds to barely within my proper BMI at 153 pounds last year.... six years of steady effort.... and within a single year and WHILE continuing to diet, as well as exercising consistently during about 1/2 of that year, I gained back 20 pounds.

I am delighted to hear that by diet your IBS problem has subsided. It sounds like slow progress to increase your weight, but progress all the same. Do you use exercise in any way to help with your situation?

A.A.

[Jackie07]

A.A.

Be sure to check everything out (eg. you might be retaining 'fluid' in your body.) Since you have been continuring to diet and exercise, the source of the 20 lb. probably needs to be determined.

I haven't been exercising very much because of the shoulder pain and left-side weakness I've felt. That is probably one of the reason why my Irritable Bowel syndrome didn't go away fast enough, I think. Exercise usually helps correct minor problems.

I'm waiting to get my MRI result (missed the phone call from my family doctor this afternoon. He 'will call' me 'next week' - so it must have been O.K.)

[AlaskaAngel]

Well, the 30-something nurse (who has never had breast cancer, chemotherapy, steroids, or chemopause) explained cheerily to me that it usually takes her at least 35 days to lose any weight once she starts working out and dieting....

After 15 days of 1300 to 1400 calories a day and an hour a day 7 days a week of brisk walking a total of 3 miles a day based on the highway mileage markers, my weight is exactly the same as it was when I started.

Since this result is based on zero breaks from dieting and no sick days or missing any exercise, it does seem that is what it would take not to gain any weight, 365 days a year. The brisk walking is a daily challenge that is good for me and I think exercise in itself does help to keep cancer at bay. It also helps with balance, bone health, and stamina. But the extra weight is a significant risk factor so it has to go.

The idea that my diet has to be permanently restricted like this without even losing any weight is the real nightmare. There isn't a minute I'm awake that I'm not consciously and constantly hungry, even right after meals.

The question is open as to what it would take to actually lose weight, in addition to the exercise and dieting I'm doing now.

A.A.

[AlaskaAngel]

Hi Dianne,

I was reading through all the posts again to look at all the suggestions, and wanted to answer the questions you asked.

The swimming pool here is used for the schools and has very limited hours when it is open for adult swim, 5-6:30 AM. Also, because I do not live in town it would require a similar commitment as going to a gym, 2 1/2 hours per trip plus the gas to and from, as well as leaving around 4:30 to 5:00 AM to get there, which isn't practical. Our private road is not generally plowed until late morning at best, and weather changes very rapidly and unpredictably here so it can mean extended delays getting back home. Even though I am self-employed, I do have have work to turn in on time, and often have unscheduled overloads.

Snacks like cookies have been entirely off the menu other than the whole wheat persimmon/oatmeal cookies I made last December for Christmas. I do eat the fresh fruit suggested in the 1300 calorie diet that the RD provided, which has very specific limits; no more than 10 fresh grapes, for example. Sugar has been off the menu for 4 years now. The only fat I eat is a pat of butter per day, 3 half walnuts, whatever is in the salmon I poach, 1 teaspoon of olive oil a day, the 3/4 cup a day (maximum) of 1% milk, and what is in the 2 tablespoons of freshly ground flax seed.

A.A.

[Jackie07]

A.A.

35 days sounds reasonable. You may just have to keep on walking for 20 more days to see any change.

Are you following a certain type of diet? 1300 - 1400 calories sounds like a good diet number, but I wondered if the 'type' of the calories would make any difference.

There was a 'fad' one time that allows mostly protein intake because it will not burn as fast as carborhydrate, so one might stay 'full' a little bit longer. To lose weight, one needs to lose the body fat; and the fat won't start to burn until the energy supplied by the food you eat has been exhausted. Another thought is that you might want to add (trade) some exercise that focuses on certain part of the body (fat). You might want to consult an expert and/or adding something like an ankle 'weight'.

I also heard of people drinking green tea to lose weight because the ingredient in the tea decreases appetite and at the same time keeps the energy up because of the caffein. Since it's a proven anti-oxident, it might not hurt to give it a try.

Are you able to get a walking partner? Staff in our hospital formed a 'walking/running club' after Jeff Galloway had presented a program here last year. We see them in the 'walking trail' sometimes. Our oncology social worker looks a lot better now after losing 15+ lbs.

[Rich66]

Again, you might try some form of weight training which seems to have more effect on weight than does cardio.

Does your calorie restricted diet include many blood sugar raising carbs?

Maybe you could bring up Metformin to your doc(s). Along with anti cancer/cancer stem cell potential, a common "side effect" is appetite suppression.

[AlaskaAngel]

Hi Rich and Jackie,

LizM was the one who suggested considering the type of calories, too. The web site I listed for StephN that gives the glycemic index for foods also gives the fullness factor for the food, so I'm going to see if I can use that and combine Liz's suggestion with your's and Rich's to see if the type of food calories (glycemic value) makes a difference for me.

The green tea is a problem in that I gave up caffeine 5 years ago and would not want to restart it.

There is one neighbor who might be willing to walk together if our schedules don't conflict. I used to work where she works, which involved a lot of work outdoors, so we share that history. But at 17 days of walking I have not seen a single biped yet on my morning hikes.

The main blood sugar raising carbs in my diet so far would be the breakfast, which is home-made slow oatmeal (moderate glycemic index) with a dozen raisins and a dozen craisins (high glycemic index). I do eat bread at lunchtime but only whole grain, which has a low glycemic load. I haven't eaten things like any noodles or corn (or any corn product) in several years, although I do eat a small portion of brown rice about once every other week.

I am going to have to use weight training of some kind very soon, as we will be traveling and there won't be as much opportunity for daily scheduled walking.

But the one question no one has responded to yet is how to deal with the rare time period when I can't do any form of exercise, such as a day when we are traveling; often I am working as we go and there is zero time for any type of exercise beyond what could be done in a car seat or in a plane seat. Is the only answer that I should not eat that day? As you can see from the first 15 days, it is not an option to eat and not exercise every single day. That was my downfall last winter. I continued to diet conscientiously but exercised less often, and I gained weight immediately that did not come off at all with months of steady exercise and diet this summer.

A.A.

[Rich66]

Can do some searches for ideas:

http://www.bluesuitmom.com/health/personaltrainer/biztravelqa.html

http://www.bellaonline.com/articles/art40814.asp

http://www.google.com/search?q=hotel+room+excercises&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a

[AlaskaAngel]

Thanks, Rich, for some ideas for travel days. I usually work into the wee hours to start the catch up with my work and then get up again very early to start it again, and run right up to checkout time while my SO brings in decaf and some fruit for me. So I can't throw in room exercises. Straight truth. I need to know whether to eat or not on those days.

[AlaskaAngel]

I saw the RD in Seattle, and because I hadn't been weighed since seeing my PCP on the 15th, I used his scale, which showed 1 pound of weight gain. This could be just a minor difference in the scales or clothes so my impression is that consistent dieting and consistent significant exercise is only working in the sense that it limits further gain to some degree.

So far, here are the differences between what is commonly believed about simple "postmenopausal metabolism" for this 58-year-old chemopaused woman:

"Maintaining a moderately reduced caloric intake will contribute to weight loss." - Not true for me.

"Maintaining a diet too low in calories can result in no weight loss due to the body's tendency to reserve energy." - True for me.

"Adding moderate physical exercise contributes to weight loss." Jumping rope for 30 minutes a day every single day for 3 months is more than moderate physical exercise, but did not result in weight loss for me when added to a diet too low in calories.

"Maintaining a moderately reduced caloric diet plus increasing exercise to 1 full hour every day of the week will result in weight loss." I have walked 3 miles a day (as measured by the highway paddle markers, not my imagination) when walking forward. When walking backward (to "mix it up" and use different muscles) for half of the walking, I have walked 2 1/2 miles a day because of shorter more cautious steps. So far, the goal of weight loss is not true for me at 30 days out. In that entire period, I missed 3 days of exercise. I have done my morning walk at every town where we have spent the night, but twice was limited by work load and once by being on a boat that was pitching and rolling too hard to do laps on board as I had planned to do. The difference in weight at the RD's scale may in fact be due to the 3 days out of 30 when I was unable to exercise but did diet.

So where do I go from here? In talking with the RD I said that I can try making the hour of daily exercise 1/2 walking, 1/4 weight resistance, and 1/4 aerobic to see if that makes any difference.

But at this point I also want to see some genuine personal commitment on the part of providers in figuring out how much of what they believe to be true about diet and exercise for a 58-year-old chemopausal woman is true, and just how much of what I believe to be true about diet and exercise for a 58-year-old chemopausal woman is true. So I am seeking an appointment with an endocrinologist and if I get it scheduled for my return trip through Seattle, I have asked the RD to work with the endocrinologist and my NP to help me define what it does really take for me to lose, say, a pound a week or even a pound a month, and keep it off. Does it take 2 hours a day of heavy exercise, or what? We already know it takes consistent dieting on top of consistent exercise, for me.

All my labs are normal except for slight increase in my LFTs. So if I am not diabetic, why do I have to eat like one just to prevent weight gain?

At present it appears that I must exercise a full hour every day and stick to the below-maintenance caloric diet every day from now to eternity just to not gain weight. I want more proven answers to these questions.

A.A.

[TanyaRD]

Hi AA. I sense the frustration in your posting and appreciate how aggrevating the lack of "numerical" progress can be. From what you have shared and the course you are on I believe you to be on the right track. Post chemotherapy/post breast cancer is typically a weight-gaining period. Any stability in weight should be applauded because it is HARD work! I know that doesn't make you feel any better but it should be noted. Remember to give yourself credit for what you have accomplished, even if weight is not responding as desired. I encourage you to continue working with the RD and endocrinologist. Also, I encourage you to keep in mind that even if your weight isn't changing as you wish you are actively doing everything recommended for prevention of breast cancer recurrence. Not to mention prevention of just about every other chronic illness.

Keep going. This will pay off.

[AlaskaAngel]

Hi Tanya,

I am still traveling so have not been online recently. Thank you for your continuing support and encouragement.

I do believe that exercise itself is preventative. However, as a patient I find it very uncomfortable to see that the ongoing standard of care involves treatments that end up essentially significantly contributing to recurrence for many of us by way of weight gain that is essentially unavoidable over the long term.

In starting this thread my purpose has been to "be" the guinea pig, to see what it takes to reduce my BMI so that other patients who might be in similar circumstances have some genuine basis to go by in working on their own situation. So the problem here is more than just my own frustration. I'm one of the luckier patients. If I had the responsibilities of trying to raise kids or handle eldercare in addition to my own weight/breast cancer issues, or had to hold on in a job I disliked, or had other concurrent diseases to cope with, I wouldn't be able to put the time and effort into the exercise and diet that I have been doing.

I can't believe that the average breast cancer patient would be able to permanently exercise and diet to this degree day after day, month after month, year after year, with no hope of any weight loss. Yet that is what I/they would have to do.

So, what I think is really important about this thread is not whether I personally succeed with weight loss (as much as I would like to). The importance of this thread is to get a clearer understanding of just what is blocking weight loss for those like me, and how to deal with it successfully. Until we do, the treatments given under the standard of care will continue to foster recurrence due to weight gain. Diet and exercise can help, but again, mostly for people like me who happen to have lives that are not as complicated as the lives of average breast cancer patients.

I still suspect that patients like me are stuck in a no-win situation where we are not actually diabetics, but our physical condition is similar, and that we need some medication similar to that used by diabetics, perhaps even just at lower doses, to make progress.

At present I have run into a roadblock. It turns out that the endocrinologist I saw in the past, who has an excellent reputation, is no longer affiliated with the facility where I have been treated. To see that endocrinologist, a patient has to "register" and pay $100 in advance, without any definite appointment, with the actual patient visit being a completely separate additional charge for services.

I am discouraged and unsure where I am going to go with this. I am not sure I want to support a health care provider who works under such a policy. I already find it rather unprofessional that medical providers such as endocrinologists have been so slow to work on getting a better understanding of these aspects of metabolism on their own responsibility. After all, breast cancer is an endocrine disease.

AlaskaAngel

[TanyaRD]

AA,
I admire your mission and believe it to be a very important one. I also find your statement of breast cancer (hormone sensitive) being an endocrine disease to be very thought provoking. Weight gain during and after breast cancer treatment is very common across the board of tumor types and is poorly understood. Women who have triple negative disease also experience weight gain. It is an area that deserves more attention in the research realm. As a practitioner I try to catch the weight gain before it starts. Of course, I work in a med-onc office and therefore only catch the women who are treated with chemotherapy. I see them starting at the beginning of treatment, through treatment and then meet when treatment is complete to really get them going on some survivorship goals (i.e. very well balanced, low fat diet and regular exercise). We have developed a survivorship program at our center which I understand to be a rarity but very important. The IOM put out their report "From Cancer Patient to Cancer Survivor: Lost in Transition" in 2006 calling for a better system for survivors. This is an area of passion for me and I believe it should be standard of care in all centers. Currently, our system really drops the ball in this area but I do see slow improvements.

[TanyaRD]

Just got this article in my inbox today. It describes the need for survivorship care. The form in the article is the one we are implementing here.

http://caonline.amcancersoc.org/cgi/reprint/59/6/391

[Hopeful]

I also find your statement of breast cancer (hormone sensitive) being an endocrine disease to be very thought provoking.

Tanya,

My internist agreed with me immediately when I said this to him two years ago. He is board certified in geriatrics, and sees many cancer patients of all types. He remarked that breast cancer was a totally different cancer from lung cancer or colon cancer. He also said the reason he believed it to be an endocrine disease is that it is far more common among women who have not had children.

I have spent the three years since my own dx doing extensive research through the medical literature, and have seen abstracts and papers on many different types of hormone interactions and their relationship to breast cancer (i.e., hypothyroidism and the relationship of levothyroxine to sex binding hormone globulin, the relationship of SSRI's to the body's estrogen metabolism, etc.), and it seems that pretty much anything that can disrupt or affect the estrogen balance in the body can affect a signaling pathway that can be involved in breast cancer. Thus, the entire endocrine system should be evaluated in each patient to determine how an imbalance in any part of it can contribute to breast cancer. Just looking at the breast is missing the boat, IMO. We need endos to get on board, because their involvement is the key not just to treatment but to prevention.

Hopeful

[TanyaRD]

This is so true. The fact that all cancers are grouped under one disease title is entirely misleading. I have to admit that I have never thought of hormone sensitive breast cancer as an endocrine disease but I believe you make a very good point. I want to discuss this with our internist today. Thank you.

[Bill]

Hi A.A.! How are you? Have you considered using a boxing "speed bag"? You know, one of those tear-drop shaped bags that you hang at about head level and punch around. They're great for burning calories and developing/maintaining your hand/eye co-ordination. I mean, you're already jumping rope. A speed bag can be installed in the corner and takes up no floor space.

[AlaskaAngel]

Hi Bill,

I didn't know it was called a speed ball but it does sound like a good idea to add to my routine, especially with the winter ice making it harder to exercise outdoors, where the roads are icy and drivers have more trouble keeping the cars on the road. I need to work on strengthening my shoulder and both arms (which get a workout with the work I do, but always only in one position at the computer). I also think that having some exercise that forces me to look a bit upward helps in terms of aging and posture.

We have just started having temps low enough for some skating here, so I'm hoping for a few more days of it to harden up the lake top and hoping it won't snow on top of the ice. We just finished traveling last week and are happy to be home in time for the holidays.

I weighed in at 20 pounds overweight, and Christmas and New Years are dead ahead. For the office potluck party I am making a low-carb/cal , green and red cabbage dish.

My insurance company also once again is blindly refusing to pay for the visit with the RD that is so key to working on keeping the weight off that leads to recurrences. (It seems they would prefer to pay for the eventual recurrence....!)

Thanks for coming up with another good suggestion to look into.

A.A.

[AlaskaAngel]

Hi Tanya,

As mentioned to Bill, I am slowly losing ground, now being 20 pounds over mid-range of my recommended BMI. Equally frustrating, my mostly high quality insurance has refused to pay for my visit with the RD in Seattle, who is completely professionally qualified and experienced and affiliated with my cancer center, even though the same insurance paid for the naturopath visit several years ago without blinking. I will appeal.

As I read the comments about the latest breast cancer conference I am disappointed that the focus continues to be on infintely tiny pieces of the larger puzzle of breast cancer, with application of one drug or another that may "work" briefly before cancer finds another way around it. I still think breast cancer is an endocrine disease that calls for endocrine analysis and solutions.

Here are 2 trials that to me would provide more help to breast cancer patients (one as you can see was stopped):

http://clinicaltrials.gov/ct2/show/NCT00304941?term=insulin+resistance&cond=breast+cancer&rank=1

In another clinical trial, interestingly patients who had chemo and patients who did not were stratified, which should provide some very interesting info:

http://clinicaltrials.gov/ct2/show/NCT00869466?term=insulin+resistance&cond=breast+cancer&rank=4

How did your chat with the internist turn out?

-A.A.

[AlaskaAngel]

Is anybody else besides me thinking that obesity may be significant at least for HR+ patients, in that slow weight gain over the years may be a key factor in late recurrences?

Copied from Lani's post on the main forum today:

http://www.her2support.org/vbulletin/showthread.php?t=42815

Obesity linked with poorer breast cancer outcomes

Breast cancer patients with a high body mass index (BMI) have a poorer cancer prognosis later in life. Specifically, their treatment effect does not last as long and their risk of death increases.
"Overall, women should make an effort to keep their BMI less than 25," said Marianne Ewertz, M.D., professor in the Department of Oncology at Odense University Hospital, Denmark. "Those who have a high BMI should be encouraged to participate in mammography screening programs for prevention efforts."
Ewertz and colleagues examined the influence of obesity on the risk of breast cancer recurrence and mortality in relation to adjuvant treatment. She presented study results at the CTRC-AACR Annual San Antonio Breast Cancer Symposium, held Dec. 9-13.
Using the Danish Breast Cancer Cooperative Group database, they evaluated health information — such as status at diagnosis, tumor size, malignancy grade, number of lymph nodes removed, estrogen receptor status, treatment regimen, etc. — from almost 54,000 women. Ewertz and colleagues were able to calculate BMI for 35 percent of the women, whose information about height and weight was available. A healthy, normal BMI score is between 20 and 25; a score below the normal range indicates underweight and a score above indicates overweight.
After 30 years of follow-up (from 1977 through 2006), the researchers found that women with higher BMIs were older and had more advanced disease at diagnosis compared with those who had a BMI within the normal range. The risk of distant metastases increased the higher the BMI. However, BMI played no role in loco-regional recurrence.
Women with a high BMI had an increased risk of dying from breast cancer, a finding that remained constant over the study period. Further, adjuvant treatment seemed to lose its effect more rapidly in obese patients, according to Ewertz.
"More research is needed into the mechanisms behind the poorer response to adjuvant treatment among obese women with breast cancer," she said.
^^^^^
SABCS 2009: ABSTRACT #18: Effect of Obesity on Prognosis after Early Breast Cancer

Background: Obesity is associated with an increased risk of dying from breast cancer. There may be several explanations for this such as obese women being diagnosed at a more advanced stage of disease or that treatment is less effective in obese patients. The aim of this study was to examine the influence of obesity on the risk of recurrence and death from breast cancer or other causes in relation to adjuvant treatment.
Material and methods: From the database of the Danish Breast Cancer Co-operative Group (DBCG) we identified 53816 women who received treatment for early breast cancer according to the DBCG protocols between 1977 and 2006 with complete data on follow up. Information was available on age and menopausal status at diagnosis, tumor size, number of lymph nodes removed, number of positive lymph nodes, deep fascia invasion, histological type, grade of malignancy, estrogen receptor status, treatment regimen, and protocol version (year), while data on height and weight to derive the body mass index (BMI, weight in kilograms divided by the square of height in meters) were available for 18967 patients or 35 % of the patients. The chemotherapy regimens included cyclophosfamide, metotrexate, and fluorouracil (CMF) up to 1999 and cyclophosfamide, epirubicin, and fluorouracil (CEF) from 1999 onwards. Endocrine therapy included mainly tamoxifen of durations from one to five years depending on time period. Associations between BMI (<25 vs ≥25,<30 vs ≥30) and other prognostic factors were analyzed by using the chi square test. Cause specific survival and invasive disease-free survival (type of first failure) were analysed by univariate and multivariate methods using Cox proportional hazards regression models.
Results: Compared with patients with a BMI less than 25, those with a higher BMI were older, more often postmenopausal, had larger tumors, more lymph nodes removed and more positive lymph nodes, more often invasion into deep fascia (all p<0.0001), and more often grade III tumors (p=0.04). Univariate analyses showed that the risk of a loco-regional recurrence was not related to BMI while the risk of distant metastases increased with increasing BMI after 3 years of follow up. The risk of dying from breast cancer remained elevated for patients with high BMI throughout 30 years of observation. Adjusting for the effect of other prognostic factors, multivariate analyses confirmed an independent prognostic effect of obesity. Within the first 10 years of follow-up chemotherapy and endocrine treatment were equally effective in lean and obese patients. However, after 10 or more years of follow-up, the treatment effect did not last in obese patients who had a poorer survival despite treatment.
Conclusion: Results: from this population-based cohort of almost 19000 patients followed for up to 30 years confirmed that obesity is associated with a poorer prognosis after breast cancer. This is likely to be due to obese patients having a higher risk of developing distant metastases than lean patients and that adjuvant treatment seems to loose its effect more rapidly in obese patients.

[Hopeful]

While we are cross referencing, here is a link to the thread I posted in the Meeting Highlights, containing information about the deleterious effects of chemotherapy on insulin resistance: http://her2support.org/vbulletin/showthread.php?t=42727&referrerid=1173

Clearly, BC treatment (and the premeds for the treatment) are contributing to on-going weight issues for patients, which in turn contribute to recurrence. Considering how many of these treatments are given to early stagers as risk management against recurrence, it is not clear exactly what risk is being managed.

Hopeful

[TanyaRD]

AA,
I agree with you 100%. We need a lot more studies like the ones you sited in regards to healthy lifestyle changes after a cancer diagnosis and also in the eye of prevention. I am always excited to see these studies. Of course, drug studies remain important but I believe these types of studies to be equally as important.

As a Registered Dietitian, I share your frustration with the lack of insurance coverage for our services. If you haven't already done so I would recommend talking to the RD and seeing if they will work something out with you if the charge is financially burdensome. If that doesn't work continue to push your insurance company and consider providing some evidence such as that in the WINS trial.

Lastly, I wanted to comment on the connection between breast cancer and obesity. The connection is real. A greater amount of adipose tissue, especially abdominal, increases estrogen levels thus the link to hormone sensitive breast cancers. I just did a literature review on this very topic last week and found the following.

Pre-diagnosis body mass index, post diagnosis weight change and prognosis among women with early stage breast cancer. Cancer Causes Control.2008 Dec; 19(10): 1319-28
Concluded that being obese before diagnosis was associated with increased risk of recurrence and poorer survival, corroborating results from previous studies.

WHI study results state "the pricipal options for the reduction of breast cancer risk in postmenopausal women are the prevention of overweight and obesity to avoid the developement of hyperinsulinemia, the medical treatment of insulin resistance..."

[AlaskaAngel]

Tanya,

Thanks for the response and information. The insurance company paid for the first visit with the RD that I made on my recent trip but not the last one. In looking closer, on the back of the denial they asked that other documentation be provided, so I have asked my RD to work on it with me. I will be providing them with copies of the studies as well.

I am still hoping to eventually be seen in coordination between my RD and an endocrinologist because I think that is really key to working on the roadblocks I've had with diet and exercise.

As I see it, the real change that is needed most of all is changing the way treatment is organized and planned at time of diagnosis. As long as the only people who sit on tumor boards at that time are surgeons and oncologists and radiologists, treatment will not address the obvious changes brought on through those modes of treatment alone, that then continue to contribute to recurrence. We need coordinated care from the start, not just aftercare. We need endocrinologists and dietitians to take the initiative themselves in approaching this, and being recognized for the role of endocrinology in dealing more effectively with breast cancer prevention as well as at time of diagnosis.

AlaskaAngel

[TanyaRD]

AA, I meant to mention that the internist agreed completely regarding the role of endocrinology. You are right. Our model of care is not set up to deal with these issues. In fact it reminds me of the push the IOM made in 2007 with their release of "From cancer patient to cancer survivor: lost in transition". It is an area I am passionate about and we are working very hard at providing such services in our center.

[Hopeful]

Just thinking out loud, here - since most endocrinologists make their living treating insulin resistance (i.e., diabetes), would the emerging information on the effect of insulin resistance in bc treatment, as well as being a long term side effect of adjuvant treatment, be the way to get them to the table?

The fact that all of the endocrine pathways can potentially be involved in one way or another for signaling purposes could be worked in later.

Hopeful

[TanyaRD]

I just saw this today and it reminded me of our discussion on this thread. Maybe the gap will finally close...

The Endocrine Society's New Journal, Hormones & Cancer, Bridges Gap
Between Endocrinology and Oncology

http://www.newswise.com/articles/view/560834/ (http://www.newswise.com/articles/view/560834/)

[Hopeful]

Tanya,

Fantastic catch, thanks! I signed up to get the free table of contents for each issue e-mailed to me; figure I can pay for individual articles that look pertinent. Normally, access to the abstracts is free.

Hopeful

[AlaskaAngel]

Tanya,

I too am very happy to see your post about this new journal, and the clear professional statement of recognition in the announcement itself about the need for it.

Like Hopeful I am going to pursue this on a personal basis, but also since I will soon have the chance to be at my cancer center again, I hope to actively and promptly pursue it with the educational center there for cancer patients as well as with the medical personnel involved in my care. I am planning to see an endocrinologist in coordination with my registered dietitian and my PCP's nurse practitioner, and your post is very timely for me. If I am able to set up genuine coordination among these 3 medical providers and document it with my insurance company, perhaps I will then see someone again from oncology to pursue it as well.

With appreciation,

AlaskaAngel

[AlaskaAngel]

Just an update --my insurance panel refused to cover my 2nd visit with RD, as I do not have lab results indicating that I have either thyroid disease, diabetes, etc.

The question involved here is the one I mentioned earlier. Why are my lab results normal, including blood sugar, if, just like a person who has diabetes and high blood sugars, I too have to stick 100% to an ADA diet and consistently exercise to avoid gaining weight? Why is dietary counseling covered for a diabetic, but not for chemopause patients like me?

I am still working on meeting with an endocrinologist.

A.A.

[TanyaRD]

AA, I appreciate your frustration with lack of coverage for RD services. Amazingly enough the coverage that is available is a significant improvement from 5 years ago and I believe it will continue to improve but not fast enough. I don't know why your labs are normal. The ADA diet is a general, healthy diet that would benefit most people. As we have discussed before, the endocrine changes after breast cancer remain a poorly understood area that needs significant attention.

[Jackie07]

AA,

So glad your 'numbers' are normal.

It is amazing how the mindset is still focused on 'treatment' instead of 'prevention'. Don't they know that preventive medicine is so much more cost-effective?

I'm fighting a similar battle as well. My oncologist wanted me to wait for another two weeks because they couldn't see anything on the ultrasound. Based on the fact that they had misread my mammograms and missed my recurrence for four year, I don't think I'm going to wait. I'm going to call my oncologist tomorrow...

[ElaineM]

Has anyone suggested dancing as a means of exercise? Valentine's Day is almost here. Grab the nearest partner and dance !! It is a great exercise that moves most parts of the body during the dance.
Also housework can be good exercise. Put on some peppy music that moves you. You might find the housework gettting done faster and with more fun than you ever imagined. These are two kinds of exercise than can be done indoors during the cold winter season.
Have fun !!!!!!!!!!

[AlaskaAngel]

Hi Jackie and Elaine,

You know, I keep thinking that it maybe we would have made more progress toward a less controversial health care plan if it would have started with just funding preventive health care for everyone as a first step, and then worked out any bugs in that before adding more to it....

A BIG yes to dancing! It does all kinds of good things -- improves balance and flexibility of the whole body, encourages creativity, and doesn't require much for equipment....

A.A.

[AlaskaAngel]

I have re-read every post in this thread. I have seen the endocrinologist, and want to share what I've learned from it. In addition, 2 new threads that are relevant to this discussion about this issue have started on the main forum.

This post will be a long one and I apologize for that. And this quote from Tanya's earlier post summarizes what I learned:

WHI study results state "the principal options for the reduction of breast cancer risk in postmenopausal women are the prevention of overweight and obesity to avoid the development of hyperinsulinemia, the medical treatment of insulin resistance..."

Those who are overweight at time of diagnosis and treatment are at higher risk for recurrence, and I hope some explanation might help them to understand why.

I suspect that those bc patients who are much younger at time of treatment, or who have gone through natural menopause rather than chemopause, are less likely to have to deal with these problems because their metabolism has been less severely (or perhaps less permanently) affected.

I think it might help to summarize and use my history as an individual, just as an example:

At time of breast cancer diagnosis, I was premenopausal at age 51 with the upper limit of normal BMI of 24.6 at 155 pounds. I exercised twice a week for 20 minutes to not gain weight. If I went out to dinner and ate more calories, I had to increase my exercise for a single week to 5 days to lose the added weight, and then I could maintain my weight again.

At completion of treatment for breast cancer (CAF x 6, rads, tamoxifen x 1 3/4 years) I weighed 178 pounds with a BMI of 28.3 (overweight but not obese), and needed to drop the weight I had gained.

Physiologic changes from treatment included:

1. Sudden severe reduction in estrogen levels and in testosterone level. The lower testosterone level and the repeated immobility from 6 episodes of nausea and vomiting + significantly reduced muscle tone and muscle bulk, which (combined with weight gain) resulted in increased clumsiness and less ability to exercise.

What we aren't told before doing treatment is that the permanently lower testosterone level means that the balance of our body composition of muscle and fat changes permanently. Testosterone works for building and maintaining muscle. With less of the testosterone, the exercise that you used to do that worked for you previously is not going to produce the same results.

Research into testosterone supplementation for breast cancer patients continues. Since testosterone also helps with bone health, it could mean that some supplementation may help to prevent recurrence. Testosterone is also a hormone that influences gender and libido.

2. Fatty liver by ultrasound, with mildly increased ALT and AST
3. Continuing low blood counts. (I never used any blood stimulator during treatment, such as Procrit or Neupogen.) Low blood counts reduce oxygen-carrying capacity of blood, and thus also reduce the ability to exercise.
4. Radiation treatment effect that continues long after actual exposure, with increased fatigue that reduces the ability to exercise.
5. Slowed metabolism, but normal blood glucose levels.
6. Significantly increased weight from both the use of steroids given with chemotherapy and from repeated periodic immobility due to nausea and vomiting.

Permanent dietary changes I made, to try to help with weight management:

Gave up all standard sugars, and substituted stevia. Presently the only glucose I eat is 1 teaspoon of honey once a day (20 calories), and the sugar in 2 squares of dark chocolate (100 calories), and whatever glucose I get from fresh fruit
Gave up all caffeine
Gave up all forms of products containing white flour, changing to whole grain
Gave up all forms of corn and potatoes entirely
Dropped rice consumption to 2 to 3 times a month, using brown rice only
Cut dairy intake by 2/3
Cut egg consumption to 2-3 eggs a month
Cut red meat consumption to 2-3 times a month
Increased cold water fish consumption
Added 2 tablespoons of daily freshly ground flax seed
Maintained fresh vegetable and fruit consumption
Limited alcohol consumption to 1/4 cup a month of beer or wine

With making all those changes, I couldn't understand WHY I wasn't losing weight, especially since I was doing the same amount of exercise I had always done that had always worked for me. Eventually I resorted to not eating all day every day until 4 PM and then only having dinner, with medium portions and a single helping, and going away from the table still hungry. It took 6 years of steady effort and I lost 23 pounds, but it took enduring staying hungry constantly with or without adding more exercise.

I found it very difficult to try to work and stay constantly hungry. I wanted to be able to eat more than 1 meal a day, so I joined 2 others from HER2support in recording everything I ate for 2 weeks and what exercise I did (jumping rope 30 minutes a day). I was eating 3 meals a day, 1000 calories a day or less, and there was no weight loss. One of my partners from HER2 did significant exercise and ate over 2,000 calories a day with no weight loss, and the other was walking for exercise and eating 1000 calories or less each day like me, and having the same problem I was having.

I then had a visit with the registered dietitian at the cancer center and gave him my 2-week diet record. On his scale I weighed 153 pounds in October, 2008. The RD used a device called a MedGem, which measures one's breath for a period of time and calculates the calories that person can take in per day without weight gain if they do no exercise. That number for me was 1440 calories per day. I was advised to increase my caloric intake to 1350 calories a day and to continue jumping rope 30 minutes a day. Theoretically this meant I would be eating 90 calories less per day than it would take not to gain weight even if I didn't exercise, and by adding daily exercise to this I would lose weight. The RD told me that even thought I had been doing 30 minutes a day of significant aerobic exercise, I had not been eating enough calories to get my metabolism working faster.

I continued the exercise and increased diet for 3 months without missing a single day of exercise, and did not lose any weight at all. Clearly the calculation and recommendation for daily caloric consumption was not accurate for me. I then tried jumping rope faster and ended up with back problems, and had to drop the exercise for a month or so, but I continued the same diet. I gained weight steadily, even though I was still eating 90 calories less than the calculated caloric allowance for a sedentary person based on the MedGem test. The theory that I was not eating "enough" calories to burn proved to be objectively false because I did not lose weight.

I had a visit with the RD and asked him if there was any way my care could be coordinated by contact and sharing of information between my PCP, the RD, and a visit with an endocrinologist. Why an evaluation like this isn't done as a standard practice to begin with at time of diagnosis and treatment planning is absurd. If treatment planning can include the spendy services of an oncologist, a surgeon, and a radiologist there is no reason why it cannot include an initial evaluation by both a registered dietitian and an endocrinologist. Having an evaluation prior to treatment would document the body condition prior to treatment, and would make it less likely for patients to be dumped by professionals after completion of chemotherapy and radiation and left with a dysfunctional metabolic problem that promotes recurrence. Breasts are an endocrine gland, and breast cancer is an endocrine disease.

The RD promised that once I actually scheduled an appointment with an endocrinologist, the RD would send the Seattle endocrinologist and my PCP in Alaska the most recent RD note for me. My PCP had been following my situation and weight, and agreed to refer me to an endocrinologist.

I learned that endocrinologists are booked solid months in advance. In addition, several refused to see me, and said that they "limited their practice to conditions like diabetes and thyroid issues", and since my labs for those conditions were completely within normal limits, they would not see me . These specialists specifically listed "metabolism" as an area of their specialization and they still would not see me. Maybe they are so booked solid with just diabetes and thyroid kinds of conditions alone that they don't have to take on other metabolic problems. However, cancer treatment causes major changes our metabolic system, and as a direct result of that we need specialists who are educated and available to help us deal effectively with those changes.

Eventually I was able to get an appointment with an endocrinologist, who received both the clinic note from my annual physical exam with my PCP and the note from my most recent visit with the RD. That meant that an endocrinologist (who is trained in metabolism in ways that an RD is not, and who is able to order labs to establish whether a person is truly dieting and exercising or not) was able to order current labs that included both metabolic and endocrine values. Using those lab values, the endocrinologist was able to analyze and see objectively that I have been exercising and dieting without losing weight. The endocrinologist explained to me that my metabolism has become more efficient and that I am using insulin differently than I did in the past.

I think maybe what the endocrinologist is saying is that if there were 2 identical twins who ate exactly the same thing, but one had bc and been treated for it, the one who had treatment would digest every last shred of the food and the one who never had treatment would only be actually digesting some of it, with the rest zipping on by and out. I know that when it is said that the "metabolism is slowing down" it means that the metabolism isn't burning "hot enough", but since I stuck to the diet of added calories in order to have my metabolism "burn hot enough" AND I added more and more types of exercise and still gained weight, that was objectively proven not to be true for me.

I know I am using insulin differently than I did prior to treatment and that is one part of the problem breast cancer patients like me face. A second genuine cause is the permanently reduced testosterone level that keeps the muscle system from working like it did prior to treatment. These are not imaginary problems; they are very real permanent body changes.

Analytically speaking as a patient, I have no idea why any oncologist would consider themselves qualified to manage what is an endocrine disease after completion of oncologic treatment, without the help of an endocrine specialist as well as an RD to work with the patient. That seems like more of a historical artifact based on limited resource allocation than quality patient management.

As yet there is no magic answer for me. I asked the endocrinologist whether or not I could use a small dose of metformin to help. The endocrinologist is not opposed to trying that, although is working with me at present without it.

Again, it may be true that those bc patients who are much younger at time of treatment, or who have gone through natural menopause rather than chemopause, are less likely to have to deal with these problems because their metabolism has been less severely (or perhaps less permanently) affected.

But by going through all of the documented steps in seeking further treatment I have documented that the metabolism of a person who has been treated for breast cancer with standard therapies and who is chemopausal and has no other known disease is not likely to be successfully treated over time with just steady restricted diet and added exercise, regardless of the type of exercise. The reason is not a lack of reasonable effort on the part of the patient. It is because there is zero tolerance permanently for any deviation from strict diet and exercise. My impression is that this could be why HR positives eventually recur. It goes back to one of my original questions. How can weight maintenance or loss occur in spite of occasional exceptions such as having the flu, or having to spend a day sitting in a plane, traveling, etc. There is simply no flexibility at all for that. When I injured my back by trying to jump rope faster so that maybe I could actually lose some weight, and then had to reduce the exercise, the weight gain came flooding back,even though I maintained the strict diet. It requires genuine daily starvation for me to lose any of it again, just like it did during the first 6 years after treatment. I could not figure out why diet and exercise were not working. They were only working to avoid further weight gain, and they only worked as long as I didn't have any interruption of any type at all. Even the RD didn't realize this, and put me on an increased caloric diet.

In this situation this is a major change from previous experience, and the patient genuinely needs an explanation. Extensive daily exercise 7 days a week would work if nothing additional was eaten (i.e., one would still have to go hungry and in effect, starve most of the time, day after day, to actually achieve the weight loss), and never miss a day of exercise and diet once the desired weight is achieved. For the majority of these people, who lead lives that usually include other commitments and interruptions, it is not practical.

We need some kind of an readjustment of our endocrine system to be successful long-term to avoid recurrence. It is known that weight gain increases risk for recurrence.

Because of the fact that this problem is affecting us all in this way, I continue to question whether the extensive use of steroids that encourage weight gain during treatment is reasonable, if in actual effect it promotes eventual recurrence.

Remember that for stage I bc patients the recurrence rate is quite low to begin with. How many of these patients would never recur at all if they did not havethe increased weight gain from steroids and the inability to achieve the proper waist measurement or BMI? On the other hand, are the steroids providing significant reduction of recurrence due to their action in reducing inflammation? If stage I patients chose to decline chemotherapy (and the steroids that go with it) and instead followed an anti-inflammatory diet with exercise, what would their recurrence rate be?

http://well.blogs.nytimes.com/2008/06/13/how-does-your-waist-measure-up/

http://www.cdc.gov/healthyweight/assessing/bmi/adult_bmi/english_bmi_calculator/bmi_calculator.html

http://well.blogs.nytimes.com/2010/03/16/doctors-and-patients-not-talking-about-weight/ (http://well.blogs.nytimes.com/2010/03/16/doctors-and-patients-not-talking-about-weight/)

[Soccermom]

Dear A.A.
Thank you for taking time to post your experience and research. I too am struggling.
My "problem" seems to be a Catch-22 situation. I LOVED to work out prior to BC and TX and even walked daily during the recon process to regain stamina and maintain weight.BUT i crashed this year ..suddenly no energy.
It just not working anymore. My blood counts are OK, RBC low,I asked for B-12 shots and my PCP wont do it.I take vitamins etc but as you said my whole metabolism seems to have changed.
I was premenopausal at DX as well. Very disheartening and discouraging when one seems to make no headway!
Are you familiar with the WISER sister study?
http://bmic.upenn.edu/wiser/

and also this one
http://www.wiserwomen.umn.edu/default.htm
I sat in on a webinar a couple of weeks ago and some of the ongoing study results were presented. It compares the relationship between exercize,estrogen and breast cancer diagnosis. I am hoping that these studies will yield more information that will help us/Physicians plan the roadmap for Survivorship and healthy lifestyle.
Hugs,
Marcia

[Rich66]

Another reason those steroids (http://racistfail.jottit.com/) may be worth avoiding. You know..besides the fact that they might interfere with the treatment.
The metformin (http://her2support.org/vbulletin/showthread.php?t=39740) file keeps-a-building. It being a caloric restriction mimetic seems to fit right into what you are seeking. If you really want to know if the carbs and sugar (http://her2support.org/vbulletin/showthread.php?t=39588) you do consume are keeping you from ketosis, there are keto strips available at Walgreens in the diabetic supply area. If metabolism and insulin sensitivity is askew, you might be surprised what it takes diet-wise to avoid contributing to the issue. Glycemic index of some fruits can be surprising. If you have Stevia and unsweetened baking chocolate (http://her2support.org/vbulletin/showthread.php?t=43594), you can make an extremely low carb chocolate fix with a microwave. Just made some using stevia and Ghirardelli 100% cocoa chips and a bit of peanut butter.
You mentioned previously avoiding green tea (http://her2support.org/vbulletin/showthread.php?t=44079) because of caffeine. There are plenty of decaf green teas and decaf green tea supplements like Capsibiol (http://www.newcancerresearch.com/): decaf green tea combined with synergizing capsaicin...another supplement thought to regulate metabolism.
I'd be wary of testosterone supplementation since there seems to be some suggestion of androgen receptors in breast cancer.
Glutamine seems to be a supplement offered to cancer patients to offset muscle wasting.
Again, there is suggestion that weight resistance training may help in metabolic matters more than cardio. Jumping rope for a half hour straight seems like a lot...especially on a hard surface (back,joints). Some feel too much excercise can actually trigger inflammation and reduce immune system functioning. (Yes..I can hear the couch potatoes cheering)

[Barbara2]

Alaska Angel, you said:
My impression is that this could be why HR positives eventually recur.

Do you believe that all Her2+ eventually occur?

[AlaskaAngel]

Hi Marcia,

Thanks for posting the links. I did not know about this specific study but I am glad to see it, and to see more research into endocrinology as the basis or influence for many diseases. I too led a very energetic lifestyle prior to dx, and I think that helped a lot even though my physical endurance and body composition has been changed by treatment.

The endocrinologist I saw was specifically aware of the issue of muscle fatigue. I am glad I was able to make the initial connection with the endocrinologist, with the recognition of the importance of endocrine analysis and the support of both my PCP and the RD.

A.A.

[AlaskaAngel]

Barbara, I don't claim to know. My personal impression is no. One wonders what brings about recurrence after such long periods of time. I probably should have more specifically said "why recurrence happens years later for those HR positives who do recur". I think they manage to hang in there ,but gradually can lose ground in terms of weight gain because they are handicapped by limited muscle proportion and because even small interruptions result in faster and greater weight gain than in people who have not been treated with chemotherapy, radiation, etc. From what I see, recurrence for them has a much slower progression once it happens, and that offers them the possibility of better and better treatments as more and more is learned.

A.A.

[Hopeful]

AA,

Here is a timely study on the subject of exercise and weight gain in aging women from the current issue of JAMA:

http://jama.ama-assn.org/cgi/content/abstract/303/12/1173

Physical Activity and Weight Gain Prevention

I-Min Lee, MBBS, ScD; Luc Djoussé, MD, DSc; Howard D. Sesso, ScD; Lu Wang, MD, PhD; Julie E. Buring, ScD

Context The amount of physical activity needed to prevent long-term weight gain is unclear. In 2008, federal guidelines recommended at least 150 minutes per week (7.5 metabolic equivalent [MET] hours per week) of moderate-intensity activity for "substantial health benefits."

Objective To examine the association of different amounts of physical activity with long-term weight changes among women consuming a usual diet.

Design, Setting, and Participants A prospective cohort study involving 34 079 healthy US women (mean age, 54.2 years) from 1992-2007. At baseline and months 36, 72, 96, 120, 144, and 156, women reported their physical activity and body weight. Women were classified as expending less than 7.5, 7.5 to less than 21, and 21 or more MET hours per week of activity at each time. Repeated-measures regression prospectively examined physical activity and weight change over intervals averaging 3 years.

Main Outcome Measure Change in weight.

Results Women gained a mean of 2.6 kg throughout the study. A multivariate analysis comparing women expending 21 or more MET hours per week with those expending from 7.5 to less than 21 MET hours per week showed that the latter group gained a mean (SD) 0.11 kg (0.04 kg; P = .003) over a mean interval of 3 years, and those expending less than 7.5 MET hours per week gained 0.12 kg (0.04; P = .002). There was a significant interaction with body mass index (BMI), such that there was an inverse dose-response relation between activity levels and weight gain among women with a BMI of less than 25 (P for trend < .001) but no relation among women with a BMI from 25 to 29.9 (P for trend = .56) or with a BMI of 30.0 or higher (P for trend = .50). A total of 4540 women (13.3%) with a BMI lower than 25 at study start successfully maintained their weight by gaining less than 2.3 kg throughout. Their mean activity level over the study was 21.5 MET hours per week (~ 60 minutes a day of moderate-intensity activity).

Conclusions Among women consuming a usual diet, physical activity was associated with less weight gain only among women whose BMI was lower than 25. Women successful in maintaining normal weight and gaining fewer than 2.3 kg over 13 years averaged approximately 60 minutes a day of moderate-intensity activity throughout the study.

Author Affiliations: Division of Preventive Medicine (Drs Lee, Sesso, Wang, and Buring) and Aging (Drs Djoussé, Sesso, and Buring), Department of Medicine, Brigham and Women's Hospital, Harvard Medical School; Department of Epidemiology, Harvard School of Public Health (Drs Lee and Buring); Department of Ambulatory Care and Prevention, Harvard Medical School (Dr Buring), and Massachusetts Veterans Epidemiology and Research Information Center, Boston Veterans Affairs Healthcare System (Dr Djoussé) Boston, Massachusetts.

Hopeful

[Bill]

Hello Angel! Just wondering how things are going for you. Awhile back, I called "Spring!" too early and got yelled at for it, but it seems to me that right now that if spring isn't there, that it's right around the corner and that you can get out and move around a little more and work that body. I know you and Pinkgirl live near each other. Maybe you can get together and do some salmon fishing or kayaking together.

[AlaskaAngel]

Hi Bill,

I don't think this year was the best year to try predicting the weather just about anywhere on the planet, Bill, including my little corner of it!

I learned that some assumptions that are commonly made about weight loss aren't true for menopausal women. I learned from my mistake, but by real life measuring. I learned that increasing total calories moderately not only did not work for me, but it put weight that took me years of effort to lose, back on again in just over a year.

With the steady long wet winter I haven't dropped what I had gained by last fall. I have stayed on a restricted diet with 1/2 hour a day of exercise and that kept me from putting on any more weight, which matches unfortunately rather well the results of the study that Hopeful posted. It isn't very rewarding to be hungry so constantly and exercise daily and and still not lose weight.

In the meantime...
For me at least there seems to be some importance to the balance of hormones that is related to the proportion of fats consumed in the diet, and possibly to exercise. Over and over I've had the same odd connection pop up, sort of a very slight Atkin's diet effect (but not anywhere near as high in fats or as low in carbs), where I'm eating a restricted calorie diet and by just slightly increasing the proportion of fat in the diet but still eating some bread and fruits and things like oatmeal, suddenly I've lost a measurable amount of weight without exercising more. Sometimes I wish I could be like a mouse in a study where everything is controlled and measured for a while, and have one factor at a time changed.

Rich's comment is all too true. While I don't have any other chronic conditions except breast cancer and a stubborn disposition, my joints can't take anywhere near the pounding that they could a few years ago, and with less muscle mass, genuine fatigue sets in sooner even with variations of the types of exercise.

Still plugging away,

A.A.

[AlaskaAngel]

This week I will be aboard a 30 foot sailboat for several days in somewhat cold weather, and not on land.... I have to come up with some way to do the same amount of exercise that I get from walking 3 MPH every day 7 days a week, or else I have to figure out how to reduce my calories from 1,000 calories a day to compensate for the lack of exercise. What do those of you who use ellipticals and who can only eat 1,000 calories a day if you do your full workout do when you are aboard for several days in somewhat cold weather?

Thanks,

A.A.

[Soccermom]

AA,
Having lived aboard for a number of years I know your space will be limited,however there are a few things youcando.
Weights (canned vegetables,juices), therapy (resistance) bands and perhaps an audio tape of a mat pilates workout that can be done on the cabin sole. Between the three , raising lowering sails and just keeping your equilibrium on a moving vessel you should be able to stay fit,

Bon voyage!
Marcia

[AlaskaAngel]

Sounds good and salty! I can do the exercising either before breakfast while the boat isn't moving and the captain is sleeping so that he won't step on me, or else while he relaxes after dinner. I have measured out the foods precisely so that I can't eat more than 1,000 calories a day, and will weigh in when I get back!

A.A.

[Soccermom]

Sounds like a fun trip! Would love to know more about the trip and the OVCA early detection trial you are enrolled in..PM me! (P.S. your caloric needs will be higher in colder weather and your internal leveling system is constantly adjusting muscles all over your body to compensate for the motion of the boat through the water...quite a workout in and of itself ;))
Marcia

[Jackie07]

Here's an exercise you can do anywhere anytime:

http://www.nsshu.com/front/bin/ptlist.phtml?Category=336045

Click on the characters 'below' number 4 and you will see the demonstration film of the doctor and his patient.

It's basically just standing naturally with legs open to the shoulder width and swing both arms to shoulder height back and forth. On the 5th time, bend your knees while swinging your arms. Be sure to have your fingers open straight while swinging.

The skinny gentleman in the center of the film is a neurosurgeon in Taiwan. He changed his life style and started paying attention to diet and exercise when he was diagnosed with stage III colon cancer 5, 6 years ago.

Have a great trip!

[harrie]

AA, sounds like a fun trip. I have an idea about the burning calories on your 30 ft boat. I presume this trip will be somewhere in Alaska, and from my memories of our family trip there, it will be mighty cold!! I would imagine just trying to stay warm in the Alaskan climate will burn tons of calories!!

[AlaskaAngel]

Hi!

Sunshine probably seems pretty ordinary for summer in most places, but here just having an entire week of it was totally delightful. It was cold enough that we wore long pants and fleece jackets even in the sunshine but it felt terrific to enjoy the blue skies day after day with only a few clouds to make the sunrises and sunsets even better. I enjoyed the trip, stuck to my diet, did as much exercise as possible, and had a very good time even though I gained 2 pounds. The most exercise was during 3 hours of very choppy seas, just trying to keep on course and keep my balance. We came back with a nice supply of fresh coho for the freezer and a barbecue! I'm back to daily walking and resistance exercises. I am planning a trip south, with an appointment to see the endocrinologist, as well as have a lab draw and annual TVUS for the ovarian cancer detection clinical trial I have been in for 4 years now.
Thanks for your help!

Alaskaangel

[AlaskaAngel]

Hi Lizm100,

I just wanted to post a link about a study that explains the importance of reducing carbs in particular because of its focus on the importance of carbs for certain populations of overweight people, those who have developed insulin resistance.

I think your observation about carbs was correct for me. I have gradually eliminated most foods from my diet that contain any significant amount of carbs because I believe it makes a difference. But the insulin resistance now is so great for me that even that consistent sacrifice is not enough, even when combined with an hour of brisk walking 3 miles per day plus weight resistance exercise, and a caloric limit of around 1,000 calories of low-carb diet per day.

In my personal effort to reach proper weight for me I have made a point of making changes that could be done by the greatest number of overweight breast cancer patients -- which means, no fancy exercise machines and no expensive personal trainers, as well as sticking to exercise that can be done by humans who have to work an 8-hour day as well as handle other ordinary demands. The use of inexpensive weights, Therabands, exercise balls, walking, bicycles, skates, music, etc. all fit that profile and are useful.

However, my metabolism has gradually continued to slow down more and more and now what would have produced weight loss when I initially completed treatment at age 51 is not enough, and even the slightest break from any of it produces significant weight gain, with no weight loss at all despite hours and hours of going hungry and loss of extensive time used for exercise.

http://www.medicalnewstoday.com/articles/192317.php

However, I think this is what is gradually happening to me despite the consistent low-carb, low-fat diet and exercise:

http://www.medicalnewstoday.com/articles/200489.php

"We hope to identify when a person becomes pre-diabetic, before they go on to develop diabetes."

I think I am pre-diabetic. My lab results clearly prove that I am eating a primarily vegetarian, low-carb, low-fat diet. I am getting absolutely consistent significant daily exercise. But the steadily slowing of metabolism with chemopause over the 8 years since diagnosis is resulting in a situation where the insulin resistance is greater and greater and there is no flexibility to drop more calories or add more exercise (or both) on a consistent basis without damage to the joints and support frame.

Primarily I want to point out that I think you are right about carb sensitivity, and why carbs are key for some of us, even though eventually reducing carbs and increasing exercise may not be sufficient.

Thanks

AlaskaAngel

[Rich66]

Just want to add on to the bit above. I have encountered info that metformin reduces Her2. Might be a good option for you for multiple reasons.

[AlaskaAngel]

Hi Rich,

Yes, I know. I still do not understand why, when I asked the endocrinologist for a low dose of metformin last year, he didn't go for it and just give me the Rx for it. I think maybe he was distracted at the time by the issues of loss of libido and the reduced effectiveness of the Estring that was resulting in dyspareunia. I was rather annoyed when he suggested just having a tummy tuck... yes, that might provide some better self-image, and it might even reduce the amount of aromatase produced to a minor degree, but I'm interested in all-around weight loss for survival primarily, with appearance being secondary. I will be seeing the endocrinologist again soon and taking a copy of my August annual physical exam done by my NP here (with copy of the exorbitantly expensive labs). I want to try to pin down what the scientific basis is for the calorie recommendation obtained with the MedGem testing and why it was so far off the mark for me. My suspicion is that it is designed to work for the general population but may be actually detrimental for someone who is insulin-resistant or someone who has metabolic syndrome. It is a mystery to me.

In terms of metformin, I would like to have a better comprehension of just how it actually works. If it doesn't "speed up" the metabolism (? does it?) then what does it do, that apparently in addition reduces risk.

A.A.

[AlaskaAngel]

I'm not sure how metformin reduces the risk....

http://www.medicalnewstoday.com/articles/109698.php (http://www.medicalnewstoday.com/articles/109698.php)

"Metformin has a novel mechanism of action. There have been a number of papers published recently that describe its action through activation of the AMP kinase pathway, which is a cellular energy sensor of the cells and potentially important pathway for the development of cancer," said Jiralerspong.

"The other interesting aspect is that Metformin works by decreasing the amount of insulin- resistance in diabetics and insulin seems to be a growth factor for cancer," said Gonzalez-Angulo.

[Rich66]

Yes...the two functions you mention are considered desirable.

AMPK, the metabolic syndrome and cancer (http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T1K-4F65K52-2&_user=8698326&_coverDate=02%2F01%2F2005&_rdoc=1&_fmt=high&_orig=search&_origin=search&_sort=d&_docanchor=&view=c&_searchStrId=1473014120&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=8698326&md5=b14819bc33b3293953af8e133fd925a3&searchtype=a)


Reducing recurrence (http://jnci.oxfordjournals.org/content/100/8/530.full)

More on metformin HERE (http://her2support.org/vbulletin/showthread.php?t=39740)

[AlaskaAngel]

I've seen both the endocrinologist and the OB-GYN. It is always strange to spend so much time and effort making such things happen from my end, only to actually have a max of 15 minutes with them for any examination and discussion. It takes 3 full days of travel by truck and ferries for me just to get there!

Still, I did manage to get an Rx for metformin this time. I also was given the reason I hadn't been given a prescription for it last time I saw the endocrinologist. I hope to try the metformin to see if there is any (and how much) truth behind the reason I was given.

The endocrinologist said that my lab tests last February showed (and still show) that I am not diabetic and I am not insulin-resistant. According to the endocrinologist, those who don't fit into either category do not benefit from use of metformin. I have been given the Rx on the outside chance that I am possibly marginally one or the other (not enough to be detected by the lab tests), to see if the drug helps.

I asked whether the endocrinologist was aware that there are a now quite a few clinical trials that are attempting to determine whether cancer patients who are taking metformin show better statistics than those who aren't. As usual, the professional endocrinologist responded that he was not. There simply is not enough communication happening between Cancerland and the endocrinologic experts with the knowledge to help deal with what is essentially an endocrine disease. They are excluded from the initial analysis and decision-making process of how to treat the disease -- they are not included in our treatment recommendation panels, the "tumor boards".

UNDERSTATEMENT: We need endocrinologists and dietitians who are given equal representation in our decision-making process for the recommendation of treatment of cancer patients.

These trials for the use of metformin by cancer patients are being run because diabetics who happen to be on metformin were showing better statistics than those patients who were not on metformin. Given that the endocrinologist believes that metformin doesn't work for those who are not diabetic or insulin resistant, the trials might end up just showing that people like me simply don't benefit from taking it -- and that only those with diabetes or insulin resistance do benefit from taking metformin.

I'm not a scientist but in reading some of the discussion about the basis for the metformin trials, it sounds to me like there is more to it than that, and it might apply to some subsets of bc like HER2, but not to other subsets.

The question is, if my metabolism is neither diabetic nor insulin-resistant, and I am not experiencing all of the key symptoms of either metabolic syndrome or PCOS, what then is resulting in consistent slow weight gain for me regardless of disciplined dieting and exercise? If I am none of the above, what am I? Should there be another, new category of metabolically disabled patients for those like me that hasn't yet been created, to help those like me?

From what I can tell, postmenopausal breast cancer patients are sort of metabolic lepers. We are told to diet and exercise, but never given any clear diagnosis or reason other than that we are now "postmenopausal" and thus our "metabolism has slowed down". We are not given clear targets for diet or exercise. I have been fumbling around trying to figure out what amount of diet and what amount of exercise are needed for me to be able to consistently lose weight.

As I become more and more postmenopausal, I have become more and more metabolically disabled. Most disturbingly, the experts I have sought help from are not working as an integrated group to help me with this. Cancerland is still focused almost entirely on the initial treatment, leaving the patient (me) to stumble along on my own in trying to avoid recurrence -- as if recurrence is far less important than initial treatment. To me, this is precisely WHY there continues to be the belief that once one recurs one will not become permanently NED. The only therapy that is clear (and only for those who happen to be HR+) is the stern recommendation for the use of an aromatase inhibitor. Aromatase inhibitors are oncology's somewhat dubious "answer" to the problem of greater fat accumulation in our society of overweight people and in particular, postmenopausal metabolic disability. A far better answer is to get rid of the fat, period.

The answer to the question "what am I, if I am not insulin resistant or diabetic and do not have metabolic syndrome?" was not provided to me. I may decide not to start the metformin until I am back home where my schedule and diet and exercise are a little easier to control and maintain, and because getting a prescription that is started in the Lower 48 then transferred to Alaska may be difficult. But the prescription is at least a chance to get out of the dead end where I've been, consistently exercising and dieting and still slowly gaining weight and increasing my risk of recurrence.

I do have to say that I think it is extremely short-sighted to encourage hormone receptor positive stage I breast cancer patients aged 50+, who are generally at low risk, to go through all the expense and ugliness of treatment only to end up fighting inevitable weight gain that is directly due to chemopause long before a recurrence would occur without "throwing the book at it". Being both HR+ and HER2+ with access to trastuzumab as an early stage breast cancer patient may be a golden opportunity that is being wasted. These are the patients who were not included in the trastuzumab trials. It is quite possible that these patients might do better with trastuzumab alone, and that they may be actually throwing away a chance to liver longer. than those who do standard treatment.

Additional support link:

The majority of breast cancer patients are over 50 at time of diagnosis and are postmenopausal. Since weight gain is a risk factor and the majority of patients gain weight with treatment, one has to consider whether those who are least at risk (early stage breast cancer) will end up cancelling out the benefit they receive from doing chemotherapy because of the added risk they then have due to the weight gain that comes with doing chemotherapy. This is especially true because most breast cancer patients are over 50 at time of diagnosis, and more of them are postmenopausal.

http://www.newswise.com/articles/met...nopausal-women (http://www.newswise.com/articles/metabolic-syndrome-affects-breast-cancer-risk-in-postmenopausal-women)

AlaskaAngel

[Soccermom]

FYI !
Check to see if there is a "Cancer Support Community" in your neck of the woods (formerly Wellness Community which has merged with Gildas Clubs nationwide)... they offer FREE programming for Survivors,current patients, AND their Caregivers.
I have been taking Pilates among other things for a year at NO CHARGE.They also offer, Tai Chi, Yoga,exercize for BC survivors,Quigong and Relaxation classes as well as many different types of support groups and seminars.
PLEASE check them out..wonderful wonderful folks and they all "GET" it and us!
If you travel out of state you may use a facility in that state FREE of charge as well.

http://www.thewellnesscommunity.org/

Hugs,Marcia

[msleslie]

I'm 39yrs old but thought I would share what worked for me. Prior to this year, I exercised (strength / core training) and walked a couple of times a week but never lost any weight. In January, I decided that I wanted to lose 20lbs to return to my ideal body weight. How? Counting Calories was the key to my success not exercise. Yes, I think that exercise is important for your body but not necessarily the answer for losing weight. I LOVE to eat and although for the most part I ate healthy I ate a lot. There is a free online tool called www.myfitnesspal.com which makes it a breeze to count calories and track your health goals. The website will allow you to plug in your age, height, weight, and how many days per week you will exercise. It will return to you the number of calories you should consume each day to meet your goal. The site also contains a massive food database for grocery items as well as meals consumed at restaurants which will make it simple to count your calories. This was great for me because I was not expected to deprive myself from my favorite foods - it was realistic & only required planning. In 12 weeks, I went from size 14 to size 8 by controlling portion sizes, counting calories, and making sure I ate every 2hrs. (small midmorning, afternoon, evening snacks to help keep metabolism up) Best Wishes with obtaining your personal goal.

[AlaskaAngel]

Hi Msleslie!

Your suggestion is an excellent one for the women here who are premenopausal or perimenopausal and should work well for them, and there are many younger patients here. Part of the problem for breast cancer patients is that there are so many important differences among us.

The vast majority of breast cancer patients are over age 55 and postmenopausal, which changes not only their ability to process nutrients but also their body composition. They form more fat around the middle, and more fat deposits around the organs inside the abdomen. When they drop their caloric intake to the point where younger patients would tend to lose weight with exercise, instead their metabolism goes into a form of "starvation mode" and becomes more efficient than yours, and instead of losing weight they just continue to exercise and diet, exercise and diet, without success.

But also, there are those among us at all ages who have other disease processes besides breast cancer that limit their ability to vigorously exercise, and yet they still need help with losing weight they have gained with steroids and chemo.

We really do need more emphasis from our caretakers on finding ways to match our individual metabolic capabilities, with the help of registered dietitians who specialize in oncology.

A.A.

[TanyaRD]

msleslie,
I applaud your efforts in improving your health and reaching your goal weight. It is not an easy task but so important. Thank you for posting.

AA, keep us posted on your progress and status with the new metformin component.

Tanya

[AlaskaAngel]

Hi All,

I have an Rx for metformin but have not yet tried it, mostly because I've stayed NED and am 9 years out and am as puzzled by all the triggers and pathways for breast cancer as everyone else.

But I just wanted to post an update all the same for those who have expressed an interest over time in my original wish for somone to help those of us (mostly postmenopausal) who diet and exercise without any real effect:

http://her2support.org/vbulletin/showthread.php?p=210395#poststop

It seems I am getting pretty much what I wished for (hopefully, for better, not worse!)

http://clincancerres.aacrjournals.org/content/16/6/1695.full

There were a few things about this that were especially interesting to me that I thought I'd mention.

"Currently there are several potential markers studied at the preclinical level that relate to metformin mechanisms of action. They constitute the ideal initial set to explore, and include components of the IGF1R axis, the AMPK and PI3K/Akt/mTOR signaling pathway, and metabolism serum markers such as insulin, c-peptide, and leptin. The above mentioned clinical trials should serve as the training and validation sets to develop biomarkers of response that can be used to personalize metformin-based cancer therapy."

To have MARKERs to help us out would be pretty nice!

What surprises me is that they don't mention any likely beneficial effects in addition for these patients due to weight management that reduces their overall morbidity. A missed opportunity...

Another missed opportunity is.... I wonder what the numbers would look like if they not only did metformin but an arm that included vitamin D3 supplementation. I wonder if there is an additive effect or not, or any interaction between metformin and vitamin D3.

RB discussed vitamin D3 years ago on the forums here for consideration. Here also is a later post by Rich:

http://her2support.org/vbulletin/showthread.php?t=41785&highlight=metformin

AlaskaAngel

[Jackie07]

Happened to see this old article posted by one of the members long time ago. Thought this might be a logical place to share:

http://blogs.wsj.com/health/2007/11/14/healthy-lifestyle-help-for-cancer-survivors/

[Mary L]

I just read one of the posts in which Metformin was discussed. I have been on Metformin for the last 6 years and I wonder if it has helped in my remaining ned???

[TanyaRD]

Jackie,
Thank you for posting this great article. This is an area of passion for me as I think it is a missing component in cancer care for the most part. There are some centers that do it well (survivorship care) but most don't. Unfortunately, it tends to be one of the first services to be cut when money gets tight. This article is a good reminder of the importance of such services.

[AlaskaAngel]

In the period since I last posted, I started a very very low dose of metformin. It has taken a little trial and error. I am still on just a tiny dose of it. But my appetite is less and my general digestion has improved, including elimination.

Where I struggled before with slow weight gain, that has not continued. Weight loss is minute (possibly because of the tiny dose I'm taking), but my work is sedentary and so contributes to that slowness as well.

With taking just the small dose I have no problems with diarrhea, etc.

It was difficult after tx at age 51 to exercise and lose weight but I did and got down to my original weight level; it gradually became more and more difficult with aging, and finally became impossible to even slow down any weight gain, even with exercise and diet. It became a pretty impossible situation for me.

If metformin is helpful in prevention for breast cancer patients in additional ways, so much the better. It helps me at least to lose the weight that is KNOWN to be an additional risk factor for recurrence.

AlaskaAngel

[TanyaRD]

AA,
It is great to see a post from you! I am glad to hear you have seen positive results from a very small dose of metformin. Please keep us posted on your progress.

[AlaskaAngel]

Glad to see you too, Tanya!

On an entirely subjective level, I feel that the metformin may also have slightly increased my general energy level, as well as (very oddly) returned to me some of my sense of taste and smell that was lost at the time of original treatment, although I can't measure those things or explain why that would be so.

I do think that part of the honest recognition by the medical profession about the very real problems encountered by patients who have undergone treatment that handicaps addressing the problem effectively is the lack of a specific term (or terms) to identify and express it accurately. One patient has posted on the general forum about her success with weight loss using metformin through the assistance of her medical provider and she uses the term "insulin resistance". At a visit with the endocrinologist that I had in which he used a wide range of lab tests and my history in the consult for me, he could not give me any name for the problem as he felt it certainly was not diabetes, but he wasn't using the term insulin resistance either. The registered dietitian that I saw at the Seattle cancer center doesn't have a term for it either.

That makes it also harder to deal with in terms of after-treatment and long-term prevention and care because insurance companies don't have a clear way to authorize the treatment for it.

That is a suggestion of sorts on my part. Thanks SO much for your continuing interest in our welfare, Tanya.

AlaskaAngel

[AlaskaAngel]

Hi Tanya,

I am posting this here as well as on the main forum. I continue to do well on a daily small dose of metformin, and am very thankful for it. I first asked the question about it at the beginning of this entire thread a couple of years ago.

Another HER2 patient brought this to my attention:

http://www.news-medical.net/news/20111202/Researchers-identify-cancer-cell-mitochondria-as-Achilles-heel-of-tumor-growth.aspx

Combining the actions of metformin and trastuzumab could conceivably even provide better results than current therapies.

AlaskaAngel