Question for Becky

[PinkGirl]

Hi Becky
I have a question about getting our energy
levels back after treatment. Maybe I just
want to rant a bit.

While on chemo I could not have gone to
work to save my life. I was sick most of
the time. I finished the shock and awe
chemo in March 06 and finished herceptin
in January 07. I am still struggling big time
with fatigue. I am taking arimidex and celexa.

Do you think there could be something else
causing this? I have gained a ton of weight
(I am hungry all the time) and am trying very
hard to get "moving".

I used to walk miles every day and now I am
lucky to make it once around the block. My
feet and legs feel like cement posts. AND YOU
ARE TRAINING FOR MARATHONS!!! Is there any
hope for me? I sure didn't think it would take
this long to get back some semblance of my
former self. I also don't eat chocolate every
day - I want to but I don't.

[Gerri]

Boy, Pink Girl, I am right with you on this one. You described how I feel to a tee! The only difference is that I was able to continue working full time during treatment, fortunately I tolerated everything very well. I had lost about 16 lbs (on purpose) prior to dx, but put back on 20lbs! I often wonder if the Tamoxifen is preventing me from losing weight. I really do eat pretty darn healthy and pass up the junk food most of the time. I would love to excercise but just don't have the energy. I still work full time but at the end of the day I am beat. I am slightly anemic and have just started taking iron supplements. I can't wait for the day my energy returns!

On the plus side - I sure have saved a ton of money because I just don't have the energy to shop like I used to!

All my best,

[Kim in CA]

Hi Pink,

Just thought I'd throw in my .02 cents worth on energy levels. I still struggle sometimes, but one thing I have found( and hope I don't offend the vegans among us) is that when I'm feeling really weak, I crave red meat. Hubby will take me out for a steak dinner and I do seem to feel more energetic the next day. Maybe it's just that I didn't have to cook!

Anyway I have also found that eating what I crave and eating small amounts throughout the day, seem to help. That includes chocolate, at least once a day and a little Brie and Shiraz in the evening!

Also the weather seems to have alot to do with my outlook on being active. When it's gloomy out, I know it affects me mentally which in turn makes me not want to do anything. When I wake up to a sunny day, it really does make me want to get out there and ride. I just start out slow, and little by little my energy seems to increase.

Don't want to sound pessimistic, but I think chemo really does change us, and we have to work harder to stay active later on. It really does payoff though, because the more you do the better you will feel.

Don't be too hard on yourself, just remember Baby Steps!

Kim

[Becky]

Everyone is different in the amount of time it takes to recover from treatment. I was always a runner but not so much in the years prior to bc. During bc, it took everything I had to be able to work. I was the only breadwinner as my husband stayed home with the children for 10 years. I felt a responsibility to keep going and somehow I did but I could not do anything else. When it came time for rads, my rad onc told me to neither gain nor lose weight after the CT scan because women's breast size is the first thing to change shape when gaining or losing weight, therefore, I didn't start trying to walk or anything (which I really wanted to do since my legs were completely numb from the taxol and I figured walking would help bring them back to life). I took my first stroll the last rad boost day. I didn't feel like it but I did it. I wanted to run but it would have been dangerous when you can feel your legs. Plus, there were numerous articles on all the studies about walking and reduction of bc recurrence. I had to force myself to do it because Herceptin was not available to me. Two months later when it was and I started it, it was probably not so bad as I was done with chemo 4 months and rads 2 months. Maybe it was getting everything sequentially - I can't really say.

Also, Celexa does cause fatigue in many people. This may also be contributing - why not try taking that at night instead of the morning (if you take it in the morning?) Also, weight can be a culprit. I want to lose 15 lbs that I have always had on my body. Even with the training, I have not budged. Now I write down everything I eat - including the "butter" on the toast etc. It's amazing how many calories you really do eat and how many calories you really do need (and for most of us it is not the 2000 calories that is listed as the Daily Values on the back of a package. It is far less as estimates do not consider age, sex, height, activity level.

For example - if I run 20 miles per week easy pace, I only need 2055 calories per day and if I run with intensity or more miles, I need 2178. If I do nothing everyday, I need just shy of 1700. No wonder I ran and ran and didn't lose - i was eatting about 2300 calories a day (probably about an even steven as I haven't gained).

Also, I think that everyone needs a goal. It doesn't have to be a physical goal. Maybe saving for a Caribbean vacation in 2010 - where to go etc. It might also be to take a college course or a pottery course or make a garden (or being able to walk 30-60 minutes 5X per week).

I think exercise does help though. Energy creates energy (even though you feel dead at first - it gets addictive, even walking) and helps with your emotional health.

So, in 3 weeks I have lost 2 lbs and since I am postmenopausal, I think it might actually be real. But I'm not telling until I have lost 10!!

Keep the faith Pink. You are an extraordinary woman. Tip told me so.

[hutchibk]

Hi Becks! Great to see ya!

As far as exercise and dropping weight (chemo weight or otherwise), I have been soooo irresponsible. But, now with osteoporosis in the Lumbar spine (and I can feel it now, dull ache), I decided it was time to get fit. I hate the gym, so I decided to seek out something that I can commit to at home. I came across a fitness guru named Miranda Esmonde-White who developed an exercise regimen called Classical Stretch. (you may have seen her on PBS). Apparently it is a combination of scientific stretching, PNF, tai-chi, yoga, ballet, physiotherapy and chiropractic movements, plus Esmonde-White's research and knowledge of specific exercises that will give you a longer and leaner body.

http://www.classicalstretch.com/aboutus.htm


I also learned that she is a B/C survivor... so I became very interested. I emailed and she responded to me personally with the recommendation for her best DVD given my particular needs.

For me she recommended Essentrics and offered that I should do it 30 min to an hour every day to get very noticible results in about 6 weeks. (I am modeling in our annual Art Bra Fundraiser).

http://www.classicalstretch.com/essentrics.html

So, I am starting today, and will let you know how it goes. I am excited!

(Pink, she's a Canadian homegirl!)

[Leslie's sister]

Becky:

I see that you are a runner. You are training for a marathon? How exciting! Have you run one before? Where? I am a fifty stater (finished in Philly, Nov 07!) Anyhow, I would love to hear about your running.

Lisa

[PinkGirl]

Thanks all for the advice. I guess I'm just
going to keep dragging myself around the
block.

Becky, did Tippy really say that about
me? Nice little Hamster.

Thanks for the links Brenda. A Canadian
girl and I've never heard of her.

[StephN]

Some great ideas posted here to Pink's question!

I will throw out a couple more.

Celexa. I have been taking this for about 3 months since after my Dad passed away, as I was so sad and exhausted from the long vigil. I find that if I take the whole 20mg tablet I AM really sleepy, even if I take it at night. I cut them in half and find that I am doing quite well on 10mg taken at night. Feel better spiritswise and have more energy. Also sleep better.
My doctor thinks I can wean off in 2 - 3 more months.
Have you tried cutting your dose?

Winter time makes us want to hibernate. It seems natural. There is not any gardeing to do after the leaves get raked up. Maybe it is too cold there for spring planting yet. (Hubby mowed our grass yesterday as it was already getting too long!) Our climate is not very conducive to me for walking. I also have allergy problems beginning now with the tree pollens.

I have a local fitness club that I go to once a week or so. That is really not enough, but I balance that out with housework, running around doing errands, yardwork and other activities. Even after being off chemo (second time) for over 5 years I STILL have to measure out my energy expenditure, as it only goes just so far.

The exercise that I found helped my legs the most after 27 rounds of Taxol for my liver mets was getting on a recumbant stair stepper. You sit, but it works your legs and arms. There are resistence adjustments and I started out with light resistance. Then when I am warmed up, I go over to one of the eliptical trainers and have worked my way up from only 3 minutes when I started to almost 10. That is not much, but at least I see improvement.

I also got a little heart rate monitor watch from MIO. This way, I can see how fast my rate gets up over 120 and how long it takes to come back down. (I used to get a little dizzy from just 10 minutes on the recumbant machine, but not now.)

Like my trainer said, "You have to start somewhere, and go from there a little at a time." I keep that in mind when I see others running for 40 min at a time on the treadmills right behind me in the gym! That is NOT me and WON't be me! But I am putting in whatever effort I have.

So, go for it, Pink!

[PinkGirl]

Thanks StephN

I have been struggling with this for a long
time. I will admit that I haven't been
consistent. I stick to eating the right
kinds of food and going for short walks
but then something happens and I stop.
The weight that it took 2 weeks to lose
comes back in a weekend.

I live in a small, kind of isolated town. I
don't have access to those exercise
machines you described. But I am
going to definitely try to increase the
time and distance I am walking. And it
is definitely not Spring here - still in the
depths of winter.

Thanks very much for your help. I am
determined to get moving and shed some
pounds.

I take 40 mg. of Celexa. I don't take it
for depression, I take it for anxiety. I
started with panic feelings before the bc.
My doc said it was menopause related.
I could try cutting back to 30 mg and see
what happens.

[AlaskaAngel]

If I could go back in time what I would do different is I would do what was suggested in another thread by someone -- I would either have the dose of steroids given with chemo reduced or eliminated. That is what puts on the pounds in the first place for a lot of us. Although some do lose weight on chemo, those who don't and who are middle-aged/menopausal will have a much harder time losing it than they had prior to doing treatment.

But that is hindsight. I just mention it because there are others here in chemo who might still benefit from that suggestion.

I was in shape prior to treatment. For at least 2 years after treatment I too felt like lead and carried too much weight around. When I exercised I was constantly stumbling due to the excess weight. I have much more sympathy for overweight people now than I had before.

One thing that helped me (but also was very depressing) was I took a photo of myself in my swimsuit. The sad thing about that was that I really and truly didn't think I looked so awful until I actually saw the picture. Talk about kidding myself!!!! I too do not like putting the time and money in to head out in the rain or snow to a gym, so I just made sure I stumbled around more times a day either jumping rope or doing dancercise, and worked more often with small barbells. Because I work at home I limited the time on the clock to when I ate and when I didn't, so that I wasn't putting food in that "didn't count".

I'd say it took about 4 years to get 20 pounds off and I still have another 5 or 10 to go. What also kept me exercising was the belief that exercise helps to keep toxins flushed out of the body, and it improves mood.

AlaskaAngel

[Jeanette]

I too have a weight problem.The only thing living down here in Florida , is it's so damn hot in the summer to walk very far. I try, but with the humidity it kills you. I also went for my 6 month mammo and ultrasound today. Turns out i have to have a biopsy done as there was a little suspicious thing about the size of a pea, that they want to look at. So waiting to get my appt. and see what happens. Hugs and Blessings to you all, Jeanette

[hutchibk]

I am putting the first DVD in right now - if I can bring myself to turn off the "just breaking" news of Elliott Spitzer (Lawyer/prosecutor, heal thyself)-

I will let you know how I live through 30 minutes with Miranda!

[Patb]

I'm right there with you Brenda, was going to put in my walking tape but
am now watching the news, I also understand Jeanette, I am in Florida and it is humid, therefore the walking tape on DVD. We need exercise, I get it, but I can come up with excuses even though I do feel better when I exercise. So here we go, here's to exercise. Fatigue is a major problem with me now. I sleep ten hours a night. Its gotten to be a joke with everyone. Take care
Patb

[Bill]

Hello Lady Pink, I wish I could help more, but I do recommend a book called The Cancer Survival Cookbook, by Donna Weihofen,RD,MS and Christina Marino,MD, MPH. It's not the greatest book in the world, but there are many good tips and recipes for fatigue, nausea, etc. If you want me to, I can send it to you. Just let me know. Love, Bill

[PinkGirl]

Bill,
Thanks, I will look for that book in our library or
perhaps get it the next time I'm in the big city.
Thanks very much for the suggestion.

[Gerri]

...still waiting to hear about your exercise experience. The DVDs look very interesting. I'm looking to try something new that won't discourage me by completely wearing me out.

BTW, love the new avatar - that is amazing! Did you take the picture?

[AlaskaAngel]

I thought I'd bring this thread back to the top to share some information I found.

In the 1999 Supplement to the Mayo Clinic Health Letter article Menopause and Beyond I found an interesting tidbit, or target:

"You will probably need to eat less -- perhaps as much as 200 to 400 calories a day -- just to maintain your current weight." That isn't a "temporary" change. You will need to make that a permanent change for life.

This new sacrifice isn't to help any of us lose weight. It only is intended to help prevent weight gain. So if you have already gained weight from treatment and are trying to lose it, you will have to cut out more than that 200 to 400 calories from what you normally were able to eat without gaining weight prior to treatment and you will have to continue that bigger number (day after day, week after week, month after month) until you have actually lost the excess weight.

In other words, becoming menopausal means you will need to permanently make this change in your diet (or else you will need to permanently exercise more than you used to have to exercise prior to menopause just to be able to maintain and not gain weight).

This is hardly happy news. But it does help me to understand WHY I've been doing 30 minutes of aerobic exercise a day plus not eating breakfast, and not eating lunch, and eating half as much as I used to for dinner, and STILL not losing weight. It means that for me to lose weight I have to cut out.... more.... or... exercise more... or both....

*sigh*

This is the first article that I've seen that actually gave some target number. I would guess that number applies to normal menopause, and may be even higher for those whose hormonal level is even more drastically changed by chemopause. I wonder why no one tells us that we will have to make those kinds of permanent changes in our lifestyle as part of treatment?

AlaskaAngel

[Brenda_D]

Shock and Awe chemo...Pink Girl, you couldn't have described it better. That's how I felt and still do feel.
The chemo knocked me flat for months and I still have fatigue. I lost weight during Herceptin, but as soon as I finished it, the weight is coming back.
I just don't seem to have the energy to much, and I get fatigued quickly when I do try.
I'm not taking any AI's or other BC meds.
I do have some other things going on, back problems, but I wouldn't think that would sap my energy and strength.

[harrie]

PinkGirl, did your energy level eventually get back to "normal"? What is your exercise activity now like?
HarrieCanarie

[PinkGirl]

Oh HarrieCanarie, I was hoping no one would think to ask me
how I'm doing now. I laughed when I read the date on my
original post. Nothing has changed, except for my frustration
level.

I am still very tired. I continue to gain weight. I do not
recognize myself in the mirror. It is now definitely some kind of
vicious cycle. I need to exercise and the extra weight makes it
harder to do so. Two weeks ago I sprained my ankle (new bi-focals)
and then sprained it again yesterday.

I've been able to lose some weight if I am extremely careful about
what I eat. But I gain it back quickly in one weekend with what I
call "normal" eating. I have become a Monday morning dieter.
Yesterday (another Monday) I started a new plan ... back to living
on salads, veggies and protein along with short walks around the
block (wearing my elastic thingie on my ankle and my old glasses.)
I hope I can stick with it. Thanks for asking :)

[Brenda_D]

Pink Girl, I would be interested to know the ages of those that have or had no continuing problems with fatigue and weight gain.
I think I may be seeing a trend where the younger ladies had less of a continuing fatigue problem, and the more middle aged, 50 and over, ladies seem to have had a harder time with it.

[tricia keegan]

I take arimidex and feel as you do...very tired most of the time. I do try to walk and swim about four times a week but it's hard! I think we really are all different, I lost a huge amount of weight during chemo but am now putting it on again bacause I'm always hungry! (Arimidex?)
I usually have never had a big appetite either.
Just wanted to say you're not alone!

[PinkGirl]

Thanks Tricia, misery loves company! I lost weight on
FAC because of nausea, then I gained on Taxol and
continued to gain during Herceptin. Now I am hungry
all of the time and have trouble exercising because of
fatigue. My onc. said that the Arimidex could be making
me hungry. Who knows?

[Sheila]

Pinky
I am in the same boat as you know....I do think it is the steroids, combined with menopause...aka the middle age spread....even with daily walking, I do believe I could eat nothing and my weight would not budge....I am more tired too, don't know why, but my nights are usually tossing and turning, hot then cold, thirsty then bathroom break....getting old is not for sissies!!!!
I weigh more now than when I was 9mos pregnant with twins...I topped out at 147

[harrie]

Ok you guys,
Now I am NOT posting this to make anyone feel bad or worse. I am not posting to brag either. This is the honest truth...
My energy level post chemo (I finished 05/07 and finished herceptin 01/08) is back to normal. I am over 50 yrs old and I eat a lot and am not very strict about what I eat. I snack a lot too. My weight is pretty much what it was prior to chemo. It never went up much. I exercise doing a variety of things, prob 5 to 6 x's wk. I love what I do when I exercise so it isn't something I have to push myself to do. My exercise is in moderation, no extremes.
I feel normal and great. Like I did before.
If I can help anyone to make suggestions, please, I would be more then happy to do so. Please don't hesitate.
We are all here to help one another.
HarrieCanarie....

[Brenda_D]

Lol Harrie, that blows my "trend" apart.
I'm happy you're doing well. :)

[juanita]

Hopefully you don't gain too much weight and become depressed about it later. Good luck eating healthy.

[Becky]

I figured I would post on this again. I just want to comment that everyone is different. When you figure that most of us had to get cut up, poisoned and burned to get cured of cancer, its no wonder most of us are fatigued! I felt that Herceptin was very tiring too. I did start to walk after rads but the main reason was reading the first release of data on the exercise trial (that reduced the risk of recurrence) so I walked and walked. It took over 2 yrs from my last Taxol (and Herceptin was over for about 6 months) before I attempted to run again. I had alot of neuropathy issues with my legs and walking is one thing but running was another (without being able to feel the feet, if running - one could easily misstep and break something. With walking, you can be more purposeful on where you put your foot).

I moved when about 17 months from surgery and on Herceptin. I was so exhausted I couldn't even get the house ready to be sold even though I was the one who wanted to move. My husband did it. The house sold in a day and then we had to find a house and pack and unpack. My husband should have shot me (although I LOVE my new house). However, the more I do, the more I can do. I love running so I love doing it. However, I can pack on the miles and nothing happens to the weight. Probably that I had the ooph and then went on Arimidex. I am about 15 lbs overweight and it won't budge. Running just allows me to eat a normal diet of about 2000 calories a day (and I run 25-30 miles a week. Last Wednesday I went 6.5 miles and Friday 12 (yes, twelve) miles but I guarentee, it only maintains me. I think I need to "shake things up". I eat the same breakfast almost every day and the same lunch and (really) do the same exercise so I think my body has learned to deal and be efficient. I am thinking of joining a gym to do some weights and use an elliptical or add in different things (still run but maybe 3-4 days of 15-20 miles and add new things every week from the gym (sometimes weights or this machine or class)). I have to plan food better too. What I eat is healthy but like I said - the same breakfast and lunch. Snacks and dinner are always different.

Just some thoughts when I saw this thread resurface.

PS - I will be 50 in December

[naturaleigh]

Pink,

Just for a little variety, try taking a dog for a walk, they are good company, love to walk, and many times will walk you!!

If you don't have a dog, maybe a neighbor has a dog that is not walked much. Ask if the dog can become your walking partner, it would benefit both of you!!

Good luck with getting your energy back, be persistant and it will come