Get My Act together

[Karen Wheel]

Well, I've lost almost 30 pounds since I started this journey in my Cancer bootcamp the last year. I finish my Herceptin this next monday --- YAH! And... the diet and supplements that I am taking is making a huge difference in my attitude, strength and overall 'look'! I feel pretty darn sexy these days (okay, still missing a chunk of the right breast - but I was sunbathing topless the other day on our private beach at Carlos work --- only him and I!) So --- losing the 30 pounds has really helped overall I think.

Cutting out sugar and almost completely giving up animal products (yes, cheese, meat, sausage - all which are hard to do in ITALY!) but I feel great and occasionally have a bite of chicken or meat to taste it and its enough.

For those who haven't seen my favorite book list:
Favorite Books:

• The Cancer Battle Plan Sourcebook (this is the updated version) - by David Frahm
• Crazy Sexy Cancer Survivor – by Kris Carr
• Beating Cancer with Nutrition – by Patrick Quillin PhD, RD, CNS
• Eat to Live – by Joel Fuhrman, MD
• The Gerson Therapy – The amazing nutritional program for cancer and other illnesses – by Charlotte Gerson and Morton Walker, DPM

All of these have many of the same theories -but overall they all say --- give up sugar and eat loads of fresh (raw) veggies and beans and whole grains.

:-) We really "are" what we eat!

Go veggies! Karen

[PinkGirl]

Thanks Hopeful .... that article said one hour per day of exercise to
maintain a normal weight ... once you hit middle age.

So that must mean more than one hour per day of exercise to lose
weight ... that's a lot ... yikes ...

[AlaskaAngel]

Hi Pink Girl,

Unless I am missing something here, it means that those who need to lose weight not only have to exercise more than an hour a day, but they also will be hungrier because they did exercise more, and they will have to continue to eat the same amount they would have eaten normally if they did not exercise any additional time.

Seven days a week means no time off for good behavior (or any kind of interruptions that are part of the everyday human existence).

I hope medical providers will start explaining this to patients so that everybody will know what to expect, and there will be more real understanding and more help with it after completion of treatment.

A.A.

[Laurel]

Well, guys, the weight gain is a bummer, for sure. I agree providers should warn us about the gain that is associated with the forced menopause. I am guessing they know some of us would choose to forgo the treatment than gain the 30 odd pounds my practitioner now admits is expected.

The other week I clambered onto the scale and noted with despair that the needle had inched up yet again! The notion of stopping the A.I.s did cross my mind, I confess. In real anguish I slumped down onto the side of the tub and stared at the scale.

Then it hit me. I HAD to do something. What? Eat less. That was all I could come up with. Eat less. A lot less.

I have been eating less. For me to lose weight I must eat around 1000-1200 calories, little or no bread, little meat, lots of veggies and fruits, more veggies than fruits. I have lost 8lbs in two weeks. I must exercise, but I had started a treadmill program. I jog, walk, and change the elevation for 45mins while reading a book or listening to the radio. Soon it will be nice enough to go out for my walk/jogs and that will lift my spirits.

Mind you, I have a very long way to go, but it is a start. Rich will be disappointed to know I still drink my morning joe and have the odd piece of candy daily.

I'll keep you posted. It will be a slow go, but at least that needle has moved in the opposite direction!

[Rich66]

Aaaaaaarg! Dammit Laurel.

Are any of you trying green tea yet? It's a diet aid and cancer fighter. You know...seems like a perfect fit.

[caya]

Rich -

I drink decaf green tea. I often make a big pitcher of it, sweeten it with Stevia and put it in the fridge - voila - iced tea.

all the best
caya

[Laurel]

For green to be an effective cancer fighter, Caya, it must be steeped for a 5-10 mins and consumed within the hour. After that the cati-somethings deteriorate.

Rich, I take green tea supplements and I do drink the stuff. I just hate to begin the morning with yukky-old-green-tea. You know us Yanks and our coffee! Now I do drink organic coffee that I roast myself if that floats your boat a bit better. I know, I know, it's the possible estrogen mimicking property of coffee you are concerned about, Rich. Of course, there is the great flax and soy debate that rages regarding estrogen positive BC and the consumption of these, but I still use ground flax seed and go easy on the soy.

Fat produces its own estrogen, so I do think it wise to shed the pounds despite the effect of the A.I.s essentially giving us the estrogen level of the elderly. Well, today is another battle to wage on the fat cells. Wish me luck!

[caya]

Thanks for the tip regarding the green tea Laurel - I do usually drink one hot mug/day - but I'll steep it longer.

Good luck gals, hopefully we'll all drop a few this spring.

all the best
caya

[AlaskaAngel]

The mutual support among us is outstanding and so is the positive focus.

I would like to think that we are considering the widest possible group of people in trying to deal with these problems.

I believe that for the greatest good for the most people here, it would be most helpful to look at this problem in terms of the people who are stuck with it and who are also stuck with problems such as less freedom to get the daily exercise, or to have the right foods... people who are challenged by having other chronic health conditions, or family issues, or not enough resources.

Those are the people who, along with ourselves, would truly benefit from progress in determining if there is anything that could be offered that might help us beyond going hungry, dieting, and exercise. I think it will take having more of us NOT just accept the status quo, but actively pursuing and pushing for appointments with providers who are knowledgeable about endocrine balance, to get them to focus on the problem. We don't yet know whether there is something that we could use with proper diet and exercise to make it possible to achieve proper weight and maintain it, such as some medication that is currently being used for diabetics or the like but not used for us based on our having "normal" lab results compared to the diabetics.

Given that so many of us make progress only to see it lost at times when we have to take a break to focus on family matters, or dealing with an injury of some kind, we really do need the assistance of providers with a background in endocrinology and metabolism to help us out. If that support isn't there right now, then maybe we are the ones who need to actively try to get that put in place for everyone.

AlaskaAngel

[caya]

Excellent point AlaskaAngel about us Her2+ BC survivors, been through chemo and Herceptin - what part did these play in our weight loss (basically a lack of weight loss, more like weight gain)? And some of us are on AIs, antidepressants - some of the s/es are know to be weight gain. I am sick of the status quo - I don't feel I should have to starve and exercise rigorously every day and not see the scale move.

I suffer from fibromyalgia - as I have said, there are days when I can barely move, never mind exercise. I think your idea about seeing an endocrinologist and perhaps being put on some kind of meds is a valid idea. I am going to call the BC dietician I saw last week and ask her about this.

Let's keep this thread going and perhaps others can input their ideas, suggestions, etc.

all the best
caya

[AlaskaAngel]

For the benefit of those just starting out, I'm going to list some of the mistakes I've made over the 8 years since diagnosis and treatment.

1. During my 6 episodes of chemotherapy, I had double the customary dose of steroids because they couldn't get the CAF in me at the treatment center before I would throw up, and at least part of the reason the steroids are given is so that we can make it home before starting to throw up. That way medical providers don't have to be there to either help or see what it is like for us over and over, and that helps them stay a lot more cheery and positive about the logic for giving stage 1 patients a drug that most of us never needed in the first place. Newer treatments don't seem to cause as much in the way of vomiting. Using the least amount of steroids might help. I notice that Caya and I and Pink Girl all went through treatment with either CAF or CEF, and I wonder about the amount of steroids we all had in support of that treatment. I know that some women have refused steroids. I am not advising anyone to do that, but it is a legitimate question to consider. One might, for example, favor doing ovarian ablation plus an AI instead of chemoablation through chemotherapy, since overian ablation would not require the repeated use of steroids.

2. By a slight margin, the majority of patients do gain weight with treatment. I had never had a problem losing weight whenever I wanted to and so wasn't as focused on not gaining during treatment, and as noted above, the treatment itself made exercise harder for me to do. i wish I would have exercised more during treatment. But any exercise a person can keep up during treatment should help.

3. All of us are trying to eat healthier now than we did before, especially getting rid of foods that are not as nutritious. I have always eaten healthy foods, but had I known how hard it was going to be to lose weight after treatment I would have tried harder to avoid starchy "comfort" foods during treatment.

4. At the time of completion of chemotherapy, I had no idea my metabolism had genuinely changed and there was no counseling provided about that change, so I didn't know eating the way I always had would be a problem. I was happy to be done with treatment and thought I could return to eating normally, and that wasn't true for me and I didn't know it. Be aware that treatment is likely to significantly change your metabolism permanently.

5. I began exercising to try to lose the weight. At least 2 factors are important to consider in exercising after gaining. One is that I was a lot clumsier and not used to it, especially in terms of being able to keep my balance with all that added weight. The other is that I was used to being able to do a fairly decent amount of exercise, and so I went right at it full force. Both of these things can result in injury and that is what happened to me. My knees swelled up immediately to where I could not get up the stairs inside our house, and it took several weeks of having to sit on each step and pull myself up step by step before my knees settled down, and even longer before I could start again to do any serious exercise with my legs. I should have started exercising gradually, and built up from there.

6. It took 6 long years to lose the weight I had gained. Strict dieting and 1/2 hour of vigorous aerobic exercise a day were not enough, and for me it took giving up 2 meals a day as well. When I followed advice and added back in those meals plus an additional half hour of exercise, I actually gained weight very slowly. I was eating a maximum of 1350 calories a day and exercising. I was told that I was just "gaining muscle weight" and that "more food inside weighs more" so I continued the added food and exercise -- and continued to slowly gain weight. I changed my exercise to include both aerobic and resistance exercise, and nothing changed. I was told that I needed to add the extra food to get my metabolism to "burn hotter". For me, adding the extra food and exercise just added more calories and I was sacrificing 30 more minutes a day without getting any stronger or losing weight -- and in order to actually lose weight, I still had to eat less and go hungry again anyway. There are myths about exercise and dieting. I am still doing aerobic and resistance exercise and am still on a strict diet, but at least now I know what some of the myths are, and I know why that for me it takes going hungry to lose any weight. By following the false information I'd been given about this, and because of a short duration of recovery from a back injury that interrupted my exercise routine, within 1 1/2 years I had gained all of the weight back that I had lost over the 6 years earlier.

I hope others can use this information in deciding what to do in their own situation.

A.A.

[Hopeful]

Apparently, there is a clinical term for this pheonomenom - "sarcopenic obesity," caused by breast cancer treatment. Here is a link to a paper discussing this that was known since 1978. This should be part of the SE's disclosed up front, no doubt about it: http: http://jco.ascopubs.org/cgi/content/full/19/9/2367

Hopeful

[AlaskaAngel]

What would the long-term survival rate be for early stage breast cancer patients, the majority of whom never need any treatment beyond surgery, if they never did the steroids that come with chemotherapy?

[MJo]

I am happy to report I am back at the gym. Unhappy to report that I have been eating chocolate easter bunnies. Delicious. I also am going to change my asthma med. Although weight gain and water retention isn't on the list of side effects for singulair, some people online claim it happened to them. I am definitely bloated and have begun to wonder if it's singulair. Also read that 11% of women on Femara gain weight as a side effect. To me that means it's more likely that 25-50% of women gain weight on Femara!