TRIPLE POSITIVE GROUP
Comments
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Juli: How do you know that it was Herceptin that caused the heart failure?
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Juli: Were they not able to spot the deterioration in your heart in time to prevent it and get you off the medications? What is your life like now?
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windlass, how are you feeling? do you think the fasting helped?0
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I'm one of those who had AC and Herceptin. I did 4 AC and have done 15 Herceptin - almost done! I have had MUGA scans every 3 months and my heart has done fine with it - so far any how.
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Hi, Omaz: I'm actually glad I did the fasting, but it's hard to know if it helped, since I have no basis for comparison. I'm trying to find other women who've done AC to see how it went for them so I can see if it was better or worse for me. Saralmom? How was AC for you?
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Windlass - my first AC was hard. I had a lot of nausea and was kind of out of it. In had no appetite and didn't eat much and lost 6 pounds that week. I felt better by day 5 and then my subsequent treatments were easier bc I took the nausea meds regularly and my onc told me to eat to decrease nausea. I did get CRAZY fatigue at the end. Like it was hard to walk from one room to another sometimes. It didn't take long to feel mostly normal after they were all done.
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Thanks Sara. I've been scouring the boards looking for posts on how people responded to their first AC, and somehow I can't find very much.
Other than catching this blasted cold, I think I would be doing great right now. I got the chemo Wednesday, crashed all day Thursday, but then got up and went in to work on Friday. I had nausea that first night only, and not again, and now my appetite is ravenous.
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achpurple & Windlass - I had an echo in January after I finished AC and my ejection fraction had gone from 55 before AC to 50. So that was high enough to start Herceptin. I remember noticing my heart rate was always over 120, but when I inquired about it, the nurse said it was most likely caused by the steroids. About 11 weeks later, I was having trouble breathing and was running a fever, went to my PCP, went on antibiotics, but didn't get better. Then I was hospitalized and my EF was down to 35. Since I had pneumonia too, it took a few days for the doctors to figure out what was wrong. They decided it was the Herceptin and stopped tx. My EF was up to 42 in September and I will have another Echo next week. I have been on Digoxin for 2 years now and have no problems with my heart. Crossing fingers it will get back to 50 soon and I can go off the meds.
Juli
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Hi Ladies Thanks for the feedback, taste buds are coming back to normal but now is Day 1 of the steroids! I am getting the nosebleeds also! No more white for me until July. Fingers crossed for easy SE this go round.
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nmoss - tomorrow?0
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Hi Omaz, as of now yeah, could change pending Bloodwork. You know the drill.. Fingers crossed to Nuelasta doing it's job.
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Haven't posted in a while because I've been super busy going back to work and getting some normalcy back in my life (cancer treatment & research was my full time job for far too long). I know now why my onc was so adimant that I should not teach kindergarten on chemo because even several months away from it I've been sick twice in the 3 weeks I've been back. I think it will take me a while to build up that teacher resistance again.
Anyone know if there are guidelines for how far from surgery a Herceptin infusion should be. I've been waiting for a call back from my onc since Wed. b/c one of my recon. surgeries is scheduled for what should be a Herceptin day for me. I'm hoping they can reschedule it, but am getting a little nervous that they haven't called.
My reconstruction is ending up being more intense than I thought. Since I had radiation I will be doing an 8 hour surgery to take out the tissue expanders I've had in since my BMX last June and reshape the "pockets" and place new tissue expanders and move my latissmus dorsi back muscles forward to my chest. 6 months after that I'll have another recon. surgery to exchange the TE's for implants, and then another surgery a couple months after that to refine any issues and do a skin graft from my thigh or rear end to create a nipple/aereola area. Then a couple months after that I will have an in office visit to tattoo. I definitely did not think it would be this long of a process & am a little intimidated.
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Since I had radiation I will be doing an 8 hour surgery to take out the tissue expanders I've had in since my BMX last June and reshape the "pockets" and place new tissue expanders and move my latissmus dorsi back muscles forward to my chest..
I don't understand. Did radiation mess up your TEs?? Was this always your plan? Please explain.
I'm freaking out because I have a TE and will get radiation...
Thanks.
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TonLee there is always a risk with rads of increased complications with implants. Don't panic. See how you do with rads. I've seen plenty of women manage to move forward without expanders being replaced. I think I read something about Smile's implants being to big for her frame.0
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hi- ive just recently started drinking pure aloe vera juice, for its powerful antioxidant properties. Anyone else heard aboutthis juice?
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Guys-looking for some advice on how to begin eating healthier! I've never eaten healthy but exercise regularly so my weight isn't at issue. I don't want to go to extremes, just find a healthy balance. I've just finished up TCH #2 and the last thing i want is broccoli or spinach but I know it would help me fight this beast better. Anyway, any books or tips are appreciated. Plus, just spent last 10 mins arguing with my mom about my diet so I need to work on it. My real issue is just an aversion to vegetables-I hate them! I have even thought about hypnotism. Any ideas. Btw, fatigue came quicker with #2 but otherwise doing ok. Hope everybody had a great day and has a great week!!!!!
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kriskat - my first thought when I just read your post is to say just get through chemo and then worry about your diet. Eat as much good protein as you can and then whatever else you can tolerate. Maybe learn about healthy foods but really, chemo is enough of a challenge.
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Oooh, I'd love help with eating well, too!
I've always struggled with food and weight. I've been losing weight, but I seriously just don't know what to make! The running joke around here is that I would rather clean ten bathrooms than make one dinner. I just hate it!
TCH #3 was Thursday for me - I slept pretty much all day Saturday and a good part of today. I honestly think it's because I don't eat. I lost 11lbs between #2 and #3...I'm certainly not wasting away, but I really don't eat much.
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Never make just one dinner. Make a big batch of something and freeze the rest.
I find a lot of my meals that are healthy are the 1 pot meals. Chicken chili with lots of beans, pepper and tomatoes (go lighter on the ground chicken, cook the chicken separately and drain the fat). My chicken vegetable soup has to be the healthiest thing I eat.If you don't like vegetables then don't eat them alone. Cook them with things you do like. Pay attention to the new food pyramid. Stay away from pre-prepared food. Just try not to eat anything out of a sealed bag or box for a week. See if you can do it.
Eat off smaller plates. Avoid sugar and sugary drinks.
click on image for larger view.Most importantly read labels and understand portions size. If you can't pronounce it, It probably isn't good for you or has no nutritional value.
Sounds like I know what I'm talking about… but I still have 8lbs of chemo weight to lose
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Redinrah: I have drank pure aloe for quite some time but not now since my onc says to avoid anti-oxidant "foods" since they fight with the chemo. If you haven't, you need to check with your oncologist.
I too make meals that make more than one.....for instance, a big pot of turkey chili today so that is a few meals for us.
Good luck NMoss tomorrow with #2.
Arlene
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nmoss - I have been getting nosebleeds too but my platelet count is in the basement so that is partly responsible. There is a lot of pollen here too because it is so warm so I am a little scared when I blow my nose or sneeze!
kriskat and pejkug - you might read the South Beach Diet if you are looking for a book. It is a low-glycemic index mediterranean-based diet that emphasizes lean protein and vegs (sorry kriskat!), low sugar and fat. I found it to be very easy to follow but I like those kinds of foods. There is not much restriction on volume of food you can eat as long as it falls into the guidelines. If you are using it to lose weight it is more restrictive in the beginning but later you add whole grains and low-sugar fruit. If you just want to eat healthier you can follow the least restrictive version - it looks very much like the food pyramid lago just put up! Excellent idea about cooking lots and freezing the rest. Then you don't have to cook - just defrost!
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Good advice Lago and SpecialK!
pekjug - You do need to eat!
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pekjug I lost 8 lbs after being very sick after one of my TCH tx's and the oncol office nurses freaked. they said they did not want to see wt loss during chemo, they want you to stay healthy to tolerate the SE's better. They weighed me at evey tx. Of course if you cant eat due to nausea theres not much you can do. Now that Ive had my diep and tummy tuck I would like to lose some wt to maintain my flat tummy.
smile-on I am 11 days post-op and will get my Herceptin on Thurs. I dont know if theres a gideline, but if I wasnt feeling well I certainly would postpone to a later time. Your onc dept should be able to answer this
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According to my Onc nutritionist, fruits and veggies during chemo just aren't that big a deal, and too much of them could possibly hinder its effectiveness.
Protein is the key during chemo. Chemo kills good and bad cells..and protein is the building block of repairing and rebuilding cells. If you don't eat enough protein, your body will take it from your muscles to repair areas like your mouth, Gi Tract, etc. This is NOT a good thing.
If you are losing weight on chemo, you are losing lean muscle, which means you are burning less calories, which leads to fat gain. (As if we don't already have to worry about a slow metabolism!)
I lived on Greek yogurt, fat free cottage cheese, milk, egg whites, and lean meats while in chemo. It's such a short amount of time (compared to a lifetime of eating habits) that skipping the required fruits and veggies won't hurt you.
Now that I'm done with chemo...back to drinking green tea everyday, eating lots of fruits and veggies....until I start radiation...then back to mostly protein.
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Ton-do you drink your green tea hot or iced??? Although not drinking it now, will resume after treatment. I just wondered if it made difference whether it's drank hot or cold. Do u add sweetener? I don't but I have added blueberry pomegranate juice to it before.
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I drink mine cold now...I brew it and let it seep for at least 30 minutes...here is my favorite recipe..
1 tsp almond extract
1 lemon squeezed
sweetner to taste...I use Splenda, or truvia...
I love the lemon/almond taste together...YUM!
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Kriskat,
For eating healthier...
Have you considered "cook books" that specifically address what you want to do?
For instance, low fat high fiber recipes are excellent for losing weight and fat.
I suggest going to Amazon.com and ordering a few.
Ultimately weight loss comes down to calories. You can google your height and see what a healthy BMI and weight is for you. For instance, a 5'4" woman who weighs 120 pounds (BMI @ 20-21), or WANTS to weigh 120 pounds and doesn't exercise should get roughly 1400-1500 calories a day. (This fluctuates a little with age, and especially activity level...more activity, more calories. Again, you can google calculators that figure in your resting metabolic rate, etc)
An easy way to figure what weight you should be (and a healthy BMI) is to take your height and add 100 for the first 5 feet, and five pounds for every inch over...so a 5'5" woman should weigh roughly 125 pounds.
Again, this can fluctuate more or less depending on a woman's frame size which is determined (small med large) by measuring the wrist. One quick way to do that is:
Wrap your thumb and longest finger on one hand around your wrist. Be sure to wrap around the smallest part of the wrist. If your thumb and finger overlap, then you are small-framed. If they touch, then you are medium-framed. If they have a gap, then you are large-framed.
I am 5'4"...small frame...so I tend to weigh between 115-120 lbs (which is technically in the middle of BMI which says I can weigh 104 and still be "healthy." A healthy BMI is between 18-25.)
When I'm not working out (surgery reasons) I consume 1500 calories a day. When I'm working out (cardio 1 hr a day, weights 3 days week) I can consume up to 2000 and maintain my weight.
1 pound = 3500 calories. So if you consume 500 calories more than you burn a day (a piece of pie, 4 servings of Twizzlers, waffle ice cream cone from DQ, etc) in 6 days you will gain a pound.
I love sweets. Always have. So what I do is "budget" something sweet into my caloric content everyday, even on a non-workout day. If I spend 300 calories on breakfast, 500 on lunch, 400 on supper..that gives me 300 calories to spend on something sweet. One of my favs is a banana with 2 TBSP Hershey syrup..that's about 210 calories.
I keep track of my calories now (used to use pen and paper) at fitday.com...it's free. What I really like is after a few weeks it will show you with graphs and charts your caloric intake vs calories burned, and even monitors your weight.
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Am I supposed to avoid green too, too, during chemo for anti-oxidant reasons?
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Windlass,
I was told to just eat what I could, focus on protein first, then fruits and veggies because you can't eat enough to negate the chemo...but supplements and vitamins/antioxidants...the jury is still out on whether they help or hinder.
I didn't mean to imply you shouldn't eat greens and fruits. (Nothing raw if you're neutropenic.)
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Tonlee,Lago,specialk etc-thanks for all the sound advice regarding nutrition and diet! The knowledge u guys have about the subject-and your willingness to share-is what makes this board so special!!!!
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