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Old 09-21-2009, 11:38 AM   #1
AlaskaAngel
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Breast cancer, and seeking advice

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
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Old 09-22-2009, 06:27 PM   #2
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Re: Breast cancer, and seeking advice

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.)
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Old 09-23-2009, 05:27 PM   #3
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Re: Breast cancer, and seeking advice

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.

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Old 09-25-2009, 12:29 AM   #4
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Re: Breast cancer, and seeking advice

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.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
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Old 09-25-2009, 11:51 AM   #5
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Re: Breast cancer, and seeking advice

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.
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Old 09-25-2009, 02:18 PM   #6
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Re: Breast cancer, and seeking advice

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.

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Old 09-25-2009, 04:04 PM   #7
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Re: Breast cancer, and seeking advice

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.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 09-25-2009, 06:20 PM   #8
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Re: Breast cancer, and seeking advice

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.
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Old 09-26-2009, 12:24 AM   #9
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Re: Breast cancer, and seeking advice

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
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 09-26-2009, 06:35 AM   #10
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Re: Breast cancer, and seeking advice

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.
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Old 09-26-2009, 01:44 PM   #11
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Re: Breast cancer, and seeking advice

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?
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Old 09-26-2009, 08:35 PM   #12
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Re: Breast cancer, and seeking advice

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
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Old 09-26-2009, 10:05 PM   #13
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Re: Breast cancer, and seeking advice

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!
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Old 09-27-2009, 02:27 PM   #14
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Re: Breast cancer, and seeking advice

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?

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Old 09-27-2009, 06:06 PM   #15
harrie
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Re: Breast cancer, and seeking advice

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.
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 09-28-2009, 11:09 AM   #16
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Re: Breast cancer, and seeking advice

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.
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Old 09-30-2009, 12:06 AM   #17
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diet and exercise

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.
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Old 09-30-2009, 05:35 AM   #18
TanyaRD
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Re: diet and exercise

Sounds like a wonderful plan. Keep us posted on your progress.
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Old 10-04-2009, 12:32 PM   #19
Bill
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Re: Breast cancer, and seeking advice

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!
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Old 10-04-2009, 05:04 PM   #20
Rich66
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Re: Breast cancer, and seeking advice

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.
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