TRIPLE POSITIVE GROUP
Comments
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Tonlee and Rozem-- I had alloderm (cadaver skin)
and it does "incorporate" into your own skin. I just felt there and I don't feel them anymore
. I just hope they holds these "puppies" up for a number of years!!! 5 mile walk after oopherectomy!!! you go girl!!!0 -
I've not had alloderm since my reconstruction was fat grafting only. However I have read some other posts by women on a different thread where they feel it possibly has led to complications. I did a little bit of reading out of curiousity, and did find some new studies that show it could result in increased complications. I would do your due diligence and look into it closely.
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thanks ladies - I will do some more research on alloderm
i have a issue that i was hoping to get some opinions on. Long story short - i had neo chemo, lumpectomy and now doing rads. I was always committed to a bmx but here in canada they do not do TE if you are having rads, I know, this is ancient thinking but it is what it is. So the advice given was do your rads (I needed them anyway due to LVI) and then in 5-6 months once you heal you can do the bmx with TE's. My RO only precribed 25 sessions b/c i am doing the bmx. Normally I would get 8 boosts so a total of 33 sessions if I was keeping them. I am worried now about the time lapse btw the end of rads and my bmx, if they do the extra 8 for a reason then should i just ask for them even though i am doing the msx? SO CONFUSED
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Rozem, I'm not sure about the whole # of rads thing, but I had a BMX with fat grafting recon, then found out I had to have rads due to close margins after my BMX. I am currently getting rads - I was prescribed 28 (last 5 boosts to the MX scar). That doesn't sound too different from 25 total. I really think, though, this is such a specific question that only your RO can answer it with definity.
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NCbeachgal: they reduce your Herceptin dose while you get the T every 2 weeks, then increase it a little for the every three weeks, so that you get the same dose over time for a calendar year. For me, Herceptin has been easy compared to chemo. Remember to take your Ativan at beditme the first several days after chemo so you aren't awake all night from the steroids!
Shore1: I agree with lago. The people who give the look are really just concerned. JenH13 has a great attitude.
ashla: thanks for the vote of confidence! What was hard for me was making myself go out and meet people when I moved here 3 years ago. Now I am so glad I did because I get support from all of those nice people--more care than I realized.
By the way, so what if you need Ativan at first? Our doctors give it to us because they know we may need it. Our bodies and minds are undergoing a lot of stress. It's okay.
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rozem, I stand corrected. I just found out I have TEN more rads tx to go, not 5, for a total of 33 treatments. Someone forgot to add the 5 boosts to my schedule when they printed it out for me over 3 weeks ago. I let out so many F* bombs when they told me today! I have flights for a 2nd opinion at MD Anderson scheduled right after when I thought my rads was done...so doc fixed it so I am doubling up on rads tomorrow, next Mon, Wed, and Fri so I'll be done in time. Ugggghhhh.
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Thanks NancyJill, that clears it up for me. I had my first Taxol on Tuesday (today is Thursday) and boy those steroids are stronger than my Ativan. I took 8 mg decadron the night before and again the day of treatment. Then more during the infusion. I was flying high and feeling great yesterday. I'm feeling the aches now for sure. Not unbearable, just ever-present. I've got plenty of aleve on board right now. I hope it helps. I don't want anything stronger, especially if it will make the constipation worse. My fissure is almost healed. Too bad we have to pick our pain.
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NCBeachgal I always had infusions on Tuesdays as well and felt pretty good on the steroids but I had a "steroid crash" every time on the Friday following the infusion. Nothing to worry about but be aware if it happens.that it's normal. I would spend Fri-Sunday feeling like a zombie, like I was exhausted and in a fog and then it would lift and my energy would pick up again. The first time it happened I was afraid I was going to feel that way for the rest of chemo-not so. With the steroids, what goes up, must come down so to speak...Hoping you have minimal SEs!0
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Omaz,
I posted a pic of my swelly belly on the Tamoxifen thread.
http://community.breastcancer.org/forum/78/topic/768255?page=12#post_2899996
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TonLee - Glad it's getting better. Man you are in great shape! I got the script for letrozole yesterday. She said to finish up the tamoxifen then switch over. Are you going to letrozole or anastrozole?0
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I find out at the end of the month Omaz!
I'm hoping which ever it is, this joint pain and eye issues will subside. My poor joints are really getting bad ....
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Hi ladies, I am knew to this thread. I started chemo last week, I'm on day 7- a good day for me. I am getting TCH - 6 rounds X 3 wks. I was wondering if someone could tell me if I will start Tamoxifen after the last round of chemo or does it start after the last herceptin infusion? I called and asked at my cancer center but I still do not have an answer and figured it would be a lot easier to ask here. Also wondering is Her2neu, Her2positive, and Triple positive all different? I know you can be Her2+ and be pr- so I guess I partly answered my question.
The one thing I am having such a hard time with is the weight gain. I hope no one is offended by this being a concern of mine. I feel like when I try to talk about it everyone thinks that's the least of your problems. But...being overweight to begin with and putting on 20 lbs between surgery and first chemo because of stress, now I have started herceptin - and have not gotten any real answers about whether that causes weight gain, and I hear that Tamoxifen does cause weight gain. My doctor's answer...everyone is different most people put on 5 - 8 lbs during chemo really angers me because I have explained to my doc I am not "most people" I am prone to weight gain. Some people are. I refused the steroids for this reason, and had no problem. I did join a gym because my doctor told me that weight bearing exercise would help with SE. I have read lots of posts that say people who are fit are putting on weight w/o changing their eating habits. I am scared to death of the weight gain and am fearful that I will never look the same. I hope this does not sound shallow.
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Ton Lee..
Thx..I needed that ! Got to get out and do a hundred laps in the pool and then run a marathon!
Here I was feeling great because I only gained 8 lbs...all in my midsection!
You have the body of a teenager! Great for you especially under these horrendous circumstances!0 -
Brax You don't sound shallow at all. Treatment takes so much from us and the weight gain is just unfair. A lot of us gained weight during TCH but some of the chemo weight can be fluid which will drop off when you are done (I gained 12 pounds in fluid and lost it a month after chemo). I remember a nurse at my chemo center telling me that lots of people gain up to 15 pounds as if it was no big deal and I was horrified!
In spite of eating healthy as I always did, working full-time and going to the gym I have definitely noticed a difference in my body. Some things have shifted or just become flabby-Sigh...I've managed to keep the number on the scales close to where I started but it's really tough. I think being put into menopause is as much the problem as anything...It's definitely a challenge.
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Brax You will probably start Tamoxifen as soon as you finish chemo. My onc made me finish chemo and Rads first and then start the Tamoxifen just to avoid confusion about SEs but I definitely started the Tamoxifen while on Herceptin.
Triple Positive is just a term for those of us with: ER+, PR+ and Her2+ (not everyone has all three-we are special:)
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Brax, I haven't posted much here because I am new and am still in the staging process but I am worried about the weight gain too. I have done nothing but gain the last few years/become very sedentary and am overweight by about 50 lbs from what I would consider a reasonable weight for my height/age, etc...I am afraid once all this is said and done I will be a roly poly mess!
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Brax my onc wanted me to start Anastrozole (hormone treatment) 1 month PFC (Post final/f@ckn chemo). I actually started it about 5 weeks later so I could start on March 1st rather than some odd day in February. I put on 12 lbs and did lose them. It can take a while. A friend of mine put on 25lbs. It was mostly fluid. She ended chemo about 2 months ago. Still fighting with the last 10lbs but she'll get it off. My onc said most women gain at least 8lbs. I think if you removed the fluid retention wait that is what I gained.
My recommendation (to you to Brax) is to start moving. Try to walk every day. There will be days on chemo that you physically can't but that's OK. You will find in general you will have more energy and less stiffness if you can keep moving.
Brax I tell your onc you want to talk to a nutritionist. I love how doctors tell you to loose weight but give you no guidance. You need to learn about proper portion control and good eating habits. I find most people, even skinny ones have no idea how many empty calories, how much sugar and salt they eat. You will be surprised that it isn't just how much but what you eat.
And if you are eating the right things you can actually eat more than you think. You do need food for energy. If you don't eat enough you can become lethargic and gain weight too.
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Thanks Ashla....I'm not as "fit" as I used to be (you could see the whole 9 pack)...but once my heart gets back up to par, hopefully I'll be strong again. If not, oh well.
Brax,
I agree weight gain on top of the disease, losing hair and other SE from tx, seems so freaking cruel!! There is some good news in this though. Chemo and radiation burn calories just trying to repair the damage!
I agree with Lago, talk with a nutritionist and start with something small, like taking a walk every day....or just standing in place while watching tv and lifting your knees up (one at a time) as high as you can for 5-10-15 minutes, whatever you can do. (I have a girlfriend who does the knee lifts every night if she watches tv during commercials....she says its how she pays for couch time...)
Over time that will get easy and you will want to move up.
Don't beat yourself up. Survive and start moving. And don't look at the scale during tx because like people mentioned above, you don't know what is real weight and what is fluid retention. Just keep moving!
And not everyone gains weight, real weight, during tx. I kept track of my calories at fitday.com (its free) and when the scale said I gained 4 pounds in one day, I knew it was a lie. A pound is 3500 calories. I could look at fitday and see I didn't eat enough to gain real weight. So it gave me a lot of comfort knowing that it wasn't real.
In the end, I was a few pounds lighter, but have gotten that back in muscle. (Despite lifting during active tx, I lost some muscle mass.)
Hang in there.
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Lago,
I tried the cauliflower pizza crust tonight. I made it on the Pampered Chef brick I keep in the oven.
When it came out it was sizzling and looked delicious! I tried an edge, crunchy goodness. But then I set it aside to grill my veggies and make dinner for the kids (they were NOT touching that pizza)...so it was cool when I put on the toppings and stuck it back in the oven to broil.
Didn't turn out so good. Was really soggy, but still tasted yummy.
So def bake this for at least 15 minutes...and then put on toppings while it is still hot and broil. I think it would have kept its crunch that way.
I have left over cauliflower rice....so I may try it again tomorrow, or just use the rice with beans...a whole cup of Mozzarella cheese (with part skim) is 320 calories..no big deal, but a whopping 24 grams of fat...I may try doing 1/2 and 1/2 with regular and fat free Moz....but fat free Moz usually doesn't bake up well.
Well I'll let ya know!
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TonLee I too am trying to get my muscle mass back. My lower body is actually moving ahead nicely in spite of my stiffness and numb heel. My upper body is still so weak. I know I need to move slowly because of the LE and risk of LE in the other arm but I can't believe how weak my arms got. I never did get my full ROM back either but my doctors and PT all think what I have is fine. I don't agree but it is what it is I guess.0
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I had made a decision to participate in the clinical trial, but found out today that they can't get the meds to the hospital in time for my planned treatment on Monday. I am not willing to wait because my husband has the week off to care for me and he can't postpone it. So, I am not participating after all.
Had my chemo education today, an echocardiogram, and saw the nurse at the surgeon's office. Everything went well and Monday morning I get my first chemo. Hoping I don't have too many side effects.
Wishing you all well too.
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Tonlee, ive been using really light weights for about 20 minutes 3-4 times a week doing squats etc. Do you think that's heavy enough weights to do me any good? Weights I use are only 5 pounds.
Brax, I've also been walking 3 miles 5 days a week since starting taxol in november. I was too sick during AC to do anything, but the walking stopped me from gaining weight. I haven't lost weight in and feel out of shape, but I think the walking really helped.0 -
Brax,
It's better than nothing, but generally no its not enough.
Most women carry purses heavier than 5-10 pounds...carry it all day long shopping and such. So if that doesn't "tone" your arms lol, doing it for 30 minutes three times a week won't either. But it is better than nothing...
A better alternative (and free) is to use your body weight in girly pushups until you can do full, tricep dips on chairs, I even run a broom stick between the back of my ladder back chairs and do pull ups from the floor.
There are lots of places on the net to show you how to use your body weight to become stronger...lots of moves you do at home (I recommend doing them in front of a mirror in your underwear! lol Now THAT will motivate you)....try those after you warm up with your 5 pounders
Don't be afraid to lift heavy. You won't bulk up so long as you get rid of the fat layer on top by watching calories. I am not bulky at 115 pounds and I lift heavy.
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I didnt gain a single pounf while on taxol and herceptin, and still havent, but you wouldnt know it if you look at my middle. I started out prettytonedand my middle is flab, especially the upper part under my foobs. I am doing all kinds of ab exercises and it makes no difference.
I am hoping the lipo at the end of the month will help.0 -
Angela - good luck with your first chemo. Here's wishing you no reactions and small SE's.
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Fluff,
For some reason it seems that is where most of our weight in menopause gathers.....at least what I've read, and since our metabolisms have slowed while on chemo....well, buddah belly!
I think it will diminish over time for you if you keep working on it, especially if you were fit before cancer.
If your picture is anything to go by....um, you look pretty awesome to me
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TonLee - I always find you so inspiring!! I'm a decent weight (120lbs 5'3") and walk every day. Im so afraid of lymphedema, though. It's good to see how much you're doing!
Kate
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Gran,
Thank you
Walking is a weight bearing exercise...so it is really good for you, and much easier on the joints than running!
I have a risk for LE. I had 4 SNs removed and rads. And some days, especially after a really vigorous massage like I had last week, my arm actually feels heavy and aches. So, I understand your concern.
Strange thing is, it NEVER feels that way after I lift weights. Ever.
I think if you started easy with low weights, maybe 3-5 pounds on your walks while holding your arms at a 90 degree angle for at least 60 minutes 3 times a week (this will work the biceps and shoulders) for a few weeks, within a month or so you might be able to do some modified body weight exercises.
But it sounds as if you are really trim so it would just be for tone. I understand if you don't want to risk LE for tone. (Though weights are good for keeping bone loss to a minimum, and keeping muscle mass so you can EAT! lol)
I think the most important thing when it comes to fitness, is finding something you can do, are willing to do, and WILL do without a lot of drama.
My primary fitness tools are: Elliptical, body weight, and a MIRROR!
I can crank the elliptical up on high and focus on specific muscle groups. Like I won't push with my legs and focus simply on the pull and push of the arms. I watch in the mirror to make sure those muscles are engaged...and after five minutes I move to another muscle group.
For buns, I squat down, keep my arms on the handles for balance, and stay in a squat while working the legs for five minutes. No matter how many times I do this, at the end of 5 minutes my legs are shaking like crazy!! Then I move onto another muscle group. I spend about 60 minutes a day, 6 days a week, doing this, then add a little weight training on top...at home, body weight things like push ups, dips, etc. And that's it. That's all I do.
The mirror helps me keep form, and frankly, is a great motivator. When you watch things jiggle it is MUCH easier to skip dessert.
Keep walking!
Here is a pic of my elliptical:
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I try to power walk 40 minutes 6 days a week (I think it's at least 3 miles). I also try to strength train for 30-40 minutes a day alternating upper and lower body. Upper body I'm still only using the 5lb weights and easing in the 7lbs. Before treatment I was using 10lbs. Lower body I will do squats/lunges holding weights. I'm using a combo of 5 & 7lb unless I'm holding only 1 weight with both hands. Then I use the 10lbs.
Upper body strength is really moving along slowly. I do have LE in the left and the right is at risk. It does feel heavy at times. I do feel the strength training is actually helping my LE arm. I think the thickness has broken up a little.
I think I'm starting to get my abs back. Just can dump the thigh fat though. I use this book:
There's a few exercises I don't do. I still don't feel comfortable doing exercises that isolate the chest/pec muscles. It just feels weird as well. I also only do 10 reps per set, 3 sets ( so that would be 30 of each exercise) This book is old.
If you don't want to use heavier weights you can do more reps
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Lago - I agree about the chest/pec muscles. I had a right MX 9 years ago with TE and implant (going through a local recurrence right now) and that side always felt weak and was really sore if I did any chest work at the club, even with the lightest weigts. I've just avoided doing those since then.
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