Taxotere is a nightmare

Tracie I just started the rogaine/biotin today. I was on it before because about 5 years ago my hair started to recede. I went off both when I started chemo… I mean was there really any need. The hair was going to fall out anyway.

TonLee I do notice that the stomach bloat and legs went way down when I took the steroids. That's how I know it's bloat. I would lose 5lbs over night. Then when I stopped taking them I would but the 5lbs back on. Also remember that if you were put into chemo pause you might have a little bit bigger stomach than you are used to. I was already peri so I started a little tummy. Prior to  that I had one of those perfectly flat stomachs without even trying. Women would still kill for my stomach prior to chemo bloat.

Please tell me why I decide to cook when my taste buds are funky. I think my beef stew is coming out great.

Toni don't do the partial fast. You need the nutrients right now. You'll get back in shape when this is all over. Just eat healthy you you'll be fine.

I too worked hard to get into great shape prior to all this. I did it once I know I can do it again. I was pretty cut in my core too.

 Tracie you make me smile! LOL

This is a little bit of a fitness/nutrition rant.....so skip if ya want (:

This is not meant to make anyone feel bad, or guilty, or anything else...it's just a thinking out loud ramble/rant type thing.

I meet a lot of women who use breast cancer as an excuse for getting fat.  I'm not talking about women who really can't stomach anything but cereal or whatever for a few days, I'm talking about women I know in real life going through treatment who believe they "deserve" all the sugar and junk they want right now because, damn man, they have cancer!! 

Well, having cancer/taking chemo shouldn't mean a person just stops eating well and exercising.  It's the worst possible time for this attitude!  It may make eating healthier HARDER, and workouts may not be as robust, but to just quit trying...it's akin to going to war with nothing but a bag of cookies.

My body needs me to help it fight, and to do that it needs lean muscle.  Chemo eats lean muscle which is the only thing that really burns calories.  (Some of the studies I've read say our course of TCH eats up to 10 years worth of muscle in 6 treatments.)

Once that muscle is gone, caloric intake requirements GO DOWN, but most people continue eating as always.  That's why some women say.."I used to be able to eat anything I wanted and not gain weight."  Well they likely had more lean muscle whether they can "see" it or not.

The more muscle you lose, the slower your metabolism, the fatter you get (unless you drop caloric intake).  And while most women think they can "take it off" after chemo, I haven't met any women (who gained more than 10 pounds) who have been able to do it in less than 2 years.  Most don't do it at all.

Why care about weight?  Weight gain contributes to higher recurrence, poorer prognosis, and other problems with BC.  Not to mention most women are just not happy with extra weight.

Refined sugar is addictive (don't believe it?  Try cutting it out of your diet for a week and observe the withdrawal symptoms) and it keeps wounds from healing properly, so how can all the cells destroyed by chemo be built back up if I'm consuming sugar in copious amounts?  If it's a large staple of my diet?

It's like telling my body to produce, and re-produce a solid foundation, but not giving it the concrete to do so.  (This is why protein intake is so important.  If I don't give my body the building blocks, it will devour what is there (muscle) to generate new cells.  More muscle loss = fatter body.)

The one positive thing about chemo is when "limiting" caloric intake (I operate between 1600-1800 calories a day) simply means I hit the lower level of that number, with most of the calories going to lean proteins (lots of cottage cheese, greek yogurt, whey protein smoothies),  and continue working out as normal.  Doing that helps get rid of the bloat (at least so far), and really really manages fatigue well.

Now having said all that, I understand why women gain weight on chemo for BC outside the "I have cancer and I want sugar" mentality.  Steroids, stress, lack of sleep, and personally I have to eat every two hours for 7 days after chemo to keep from getting sick.  If my stomach gets empty, I'm VERY ill for the duration of the week.

Once I get used to that constantly "full" feeling, the first time my stomach growls after that week, it is actually painful.  So unless I am cautious, I try to inadvertently avoid the growl, which means I eat when I'm not hungry.  Plus, here it is cold and blustery outside..lots of indoor time bores me, and I bake when I'm bored.  Even healthy food, consumed over 16-1800 calories a day leads to weight gain. 

At the end of the day, any fat I gain from treatment will be (mostly) beyond my control.  I'm keeping up my end of the healing process by measuring caloric intake, working out, and eating adequate amounts of protein.  At the end of this, I hope to get my life back.  Trying to lose gobs of BC weight is not, in my opinion, getting it back, but laying down more precious time to it.

Knowing all that, I still love sweets.  In fact, I'd say on chemo for about 5 days, sugar/sweets are the only think I can actually taste.  So I don't eat for taste, I eat for strength.  Some days I have to force it down like a bad pill though.  Whenever I crave sugar, (that's a daily thing for me), I just think about the cancer in my body wanting it, needing it, to keep my body weak so it can own me.  

I don't buy the whole "listen to your body" thing when it comes to food.  Sugar perverts the internal process when a large staple of the diet.  I wouldn't tell an alcoholic to "listen to their body" because it would say drink drink drink.  

 What is so frustrating for me, and contributed to the length of this entry, are the women I see in treatment with me in the chemo room.  Same treatment, same start date, etc.  They're spending more and more time in bed, or on the couch, and eating whatever appeals to them.  They're getting fat, shorter and shorter of breath, more fatigued, and what does the nurse tell them?  "Rest.  Listen to your body, eat what you want."  REALLY??

I consulted with a nutritionist, and still do when I have questions.  There are studies coming out (mostly from Harvard Medical School right now) that show exercising when you least feel like it (while on chemo) is when you're body needs it the most.  In fact, these studies show less side effects with chemo, better prognosis, and less recurrence in people who maintain diet and activity during chemo.

(Most of these studies can be found under the Comprehensive Breast Health Center, Brigham and Women's Hospital....Carolyn M. Kaelin, Harvard Medical School or the ones I found the most interesting are listed at the end of the book below..just the references, you'll have to look them up yourself).

Ok rant over.  If you read all that, bless you! (And I'm really not a fanatic...I promise.)

If you're interested in more studies and a "how to get started" while on chemo guide to exercise, I recommend. "Cancer Fitness-Exercise Programs for Patients and Survivors" by Anna Schwartz.

This book gives a detailed system to get started, or continue on exercising while on chemo...right down to a chart to help you find specific levels of activity for you.  And as mentioned above, tons of articles and studies which support the assertions above.

Iago - I agree.  Coming into this I was in great shape, a competitive paddler, certified nutritionist - but that being said, I was not as lucky as some - got knocked on my a$$.  Still with one chemo left, I am just starting to work with a trainer to start getting myself back into shape for the upcoming race season with my team.  For me, balanced eating was almost impossible but I tried and readily admit that I was not always successful. I struggle everyday - especially with hydration which you think would be the easiest! I have maintained my weight within about 5lbs but know that my lean muscle is seriously reduced.

I know that when my onc and nurses told me to listen to my body - they meant "rest", "hydrate", "fuel", "activity (within reason)" but that doesn't mean that every patient hears the same thing.  My body also cries out for sugar sugar sugar!!! Sometimes I just want to binge on sweets or salty snacks - it can be very difficult to deny yourself when you are going through what we all have been through.  There is a huge mental game going on here as well - I have found that working with nutrition clients, the mental hurdles are the biggest to overcome.  Out entire society suffers from "disordered eating" to one extent or another and it's really important not to make someone feel bad or weak for making poor nutritional choices - chances are, they are all ready beating themselves up about it internally and that negativity is like a cancer in itself.

TonLee - You are incredibly lucky to be maintaining such strength and focus as you fight this battle.  I totally admit to being jealous, but I know I will get back to where I was and maybe even better

I don't think its "strength" necessarily...it's just one of the few things I get to be pro-active about in getting better.  (So it gets a lot of focus.)

Like most things in life, it's not what is said, but what is done that matters.  I can talk about getting better all I want, or I can DO something about it.  Anything less and I have to wonder, do I really want to beat this cancer?

I understand all women are not made this way.  And I'm not judgin.

TonLee I had to go to chemo training (1 hour) and they gave me a big 3 ring binder. It was sectioned off by the following topics:

Contact Information
Pathology Report
Treatment Planning Calendar
Treatment Room Information
Medication Information
Side Effect Management
Diet
Staying Healthy
Cancer Integrative Medicine Program
Glossary

---------------------------

It was helpful except I kept getting some of those less common or stubborn SE that weren't detailed in the binder.

Tracie, We have not met on the Board yet, but I nearly died from Taxotere. I had what the docs call "a delayed allergic reaction" to the drug. Once my onc found that one out he dropped me like a hot rock and refused to return my calls; see me or address the issue in any way. and not other doc would take me saying that I was "a walking lawsuit." I only had one dose of the CT combo and my nails turned black and fell out; my skin bubbled up and slid off; my throat swelled and I developed blisters inside from my mouth all the way down to my tummy. The SE's went on forever and for real-I believe that this drug should be banned. I was in the ER three times a week at least because my onc refused my calls and I could not hydrate and the nausea and sickness was so incredibly profound that truly, I wished for death. It is a year later and I continue to have side effects including malabsorption issues which have resulted in several bouts of 'lack of Vit D; perniscious anemia; no potassium; etc". I have labs drawn constantly and there is always something awful going on due to the damage done by Taxotere. My eating habits have changed drastically because I can only tolerate very bland foods and most things still don't taste right. I cannot eat anything with tomatoes or T-sauce, like spagetti-it feels like my skin is burning from the inside out. The fatigue is still profound. And i had the temperature issues that you are having. I lived on gatorade and smelled like I had been dropped in a vat of something found in Chernobyl. My hair fell out immediately and has only grown back about two inches after a year-many women remain bald headed because of the destruction caused by the drug and NO, my onc never told me the truth about it either. He said I'd get treatment on Thursday-be a bit tired-and be off to work on Monday-NOT EVEN IN THE BALLPARK. I crawled to the toilet and that was about all i could do-lived on carafate and the majic mouthwash-as that is all my onc at the time would give me. Once i had the reaction, he said he had never seen someone so sick and stated that he did not know what to do with me other than to let the Taxotere work out of my system. Well i was on three drugs that inhibit the processing of Taxotere and was never healthy enough for it to begin with-so it just ping-ponged around in my body doing all of the destruction it could do. Girl blessings to you and if you are not getting answers from your onc-drop him/her and get another one. I found that none of them wanted to address the profound allergic issues because it would deter women from taking chemo (and the CT -Cytoxen and Taxotere-combo is the gold standard-I am told). A doc came out from Chapel Hill to give me a third opinion and he wanted to hospitalize me instantly-my BP was 70/40 and I had heart damage-now my BP does not hold and my lungs are also damaged-making my asthma a nightmare. Again, this is a year later and I am dealing with what feels like 'massive head trauma' too from the Tax. Chemo brain would have been a step up for me. I only know cause I did have massive head trauma in 1998 when I was hit by a drunk driver and thrown from my SUV. Tax can completely ruin your life-I know that it ruined mine! I was a healthy, beachwalking, surffishing nut and now a year later, I can barely walk half a mile, if that. I don't want to scare you but my experience with the drug - was nothing compared to the cancer!! My prayers and blessings go out to you for quick healing. Big Hugs, SV

bdavis are you taking something for the heartburn? If not check with your onc. Hate to tell you this but the heartburn must be treated or you will get this with every treatment. I'm taking 2 drugs for heartburn and still have issues. (should stop in about a week though). Most people can take Prolosec and be fine though.

Hi Ladies

Have been discussing this with my Australian sisters, and getting lots of good advice - but wanted to touch base with you all - had my first Taxotere treatment yesterday - and no reaction during infusion Yay!!  Feeling pretty good today - apart from cups of tea tasting like cardboard - but coffee tastes ok.  Drinking lots of water, and interestingly enough water tastes ok - unlike when I was on FEC.

I'm waiting for the ball to drop in a couple of days when the steroids are finished and something else will kick in - like leg pain, flu symptoms etc, but I will live in hope that I stay feeling like I do today.  Going back in this afternoon for my first herceptin treatment, but if not for that I would be going in to work today.

Trish

xoxo

I totally agree with Tracie. I was happy that chemo ended but even happier that the constipation SE ended for the final time on Saturday. My 1st tx was so bad I thought I was going to have to go to the emergency room. Ended up with  hemorrhoids after too. Once I figured out the meds that worked for constipation I never got that bad again… kept things moving although had slow days if you know what I mean.

LadyinBama - hmmm, my eyes are really runny.  Perhaps I should check it at my next appt...just one of those things I've been living with and figuring it would go away.