TRIPLE POSITIVE GROUP

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  • goutlaw
    goutlaw Posts: 268

    That's gr8 walking..so what stage were u before chemo? I think since if u have chemo ..they can really never give u an exact stage! I would love to b in stage 1 or 2 and might happen after surgery but the one before surgery is the one that matters BC chemo killed it?

  • moonflwr912
    moonflwr912 Posts: 5,945

    Cami, when I have uti, I use AZO pills, from the drug store. They have pills for yeast infection too. They work! Amazing. The UTI pills take away the pain within hours for me. If you are continually getting infections, get help. But while waiting, use the pills, they really take away the pain, they are natural. The yeast ones helped me when I was over run, and didn't know I was diabetic, and got yeast infections all the time. It is not the cheapest, but its so helpful for me.

  • PatinMN
    PatinMN Posts: 784

    cypher - thinking of you.  What's the news?

  • Pbrain
    Pbrain Posts: 773

    Ok, I'm home in Philly and am struggling a little bit.  Twice today my mother has mentioned how I need to lose weight.  I'm at my fattest ever, and I know it.  It is all on my belly and my breasts, and I still have a bit of a moon face from the steriods during chemo.

    Well, I kind of just lost it and cried, which made my Ma feel bad, which I didn't mean to do.  I grew up with parents who have always thought being fat was akin to being a child molester.  They kept themselves in great shape and so have my siblings, but I have fought weight since teen age years.  It has never been seriously bad but I am close to 200 lbs right now which isn't great for 5'4"

    I just feel so sad at this point.  I went through chemo, radiation, being sicker than a dog, losing huge numbers of pounds, going through chemopause, surgery, etc.  I didn't eat like a hog at any point.  I want my mother to respect what I've been through and how I handled it and not judge me because I'm fat and weak.  I remember on my last chemo the nurse said they would be sad to see me done because I was everyone's favorite patient.  I kept my sense of humor, I stayed brave, I didn't complain.  And yet now, because I look "bad" after this whole thing with weight and short hair, I am again feeling judged.

    I don't even know what I'm feeling.  Just sort of sad and wishing others would respect what I just went through.  Anyone else feel this way?  I think I've come out on the other end just fabulously even though I'm not conventionally fabulous looking.

  • camillegal
    camillegal Posts: 15,710

    PBrain please don't put this on u---u have had one hell of a yr and always with a wonderful attitude and coming out so well--U'r kind hearted, knowledgable, funny and beautiful. I feel it in u'r writing from the first time u wrote--If u want to loose weight u will and if not then fine. U are a wonderful woman and i doubt very much if God ju LOLdges us all on looks----I hope not.

  • moonflwr912
    moonflwr912 Posts: 5,945

    (((((Pbrain))))). You can see from my pic that Moon is not just my nickname! LOL. I think I am one of the few women who fit the stereotype cancer victim in size. But, you know, I eat very well. Or at least I did before chemo messed me up. I still can't eat veg too much. I lost over twenty pounds during chemo, gained back only ten when I started eating again. My A1 c is 6.8 which is pretty good for a large type 2. I still have IBS type symptoms, so I still don't eat a lot, and I am not losing weight. I hate that, but I live with it, the hormonals DO NOT help! Besides, you just wanted your mom to say you did good for all you went through. I'm with Cami, god doesn't judge you on your looks. Besides, going home us always weird, and makes us realize why we left! LOL hang in there. Much love.

  • GrandmaV
    GrandmaV Posts: 1,045

    Pbrain, people who have not had cancer and the treatments really don't understand it.  I know many of my friends think I should be ok now.  I think they equate it with the flu, because thats the most serious thing they've had.  Its a very lonely feeling to be with friends or family who are well meaning, but just don't get it. Thats why I continue to frequent this forum.  Its so good to be "with" people who understand.

  • Pbrain
    Pbrain Posts: 773

    Thank you all for your thoughts, it helps so much.  I just feel like crying about how judgemental people are.  I'm still up, trying to sort through this.  My Ma felt bad, but thought I was being defensive.  I was just trying to explain to her that when you are shipping your pants and have hemorhhoids that hurt so much you can't walk, then maybe you don't lay awake wondering if you are still a size 6.

    I don't know.  I just kind of hurt because you would think people would realize your strength and admire you instead of tell you that you need to do this and that...I admire me though!  Go Pbrain!  I agree with you Grandma, this wasn't the flu I just got through. And thanks Cami, Moon and Kbee, you are so kind and so experienced with this crap.  My ma said to me tonight that maybe what I need is to find a support group and I told her I have one and immediately ran to this board to see if anyone on here could understand.  Thank you!!

  • janiepants
    janiepants Posts: 2

    Thanks.  i will talk to onc again.  I'm going to CTCA in GA. I feel good about my decision on chemo.  He just didn't convince me.  Sometimes, I think these doctors are on autopilot.  First surgery, chemo and then radiation.  But my results don't back up chemo IMHO.

  • ashla
    ashla Posts: 1,566

    When I first came to this forum there was much discussion about a much admired girl named Summer Breeze. Does anyone remember?

  • camillegal
    camillegal Posts: 15,710

    Ashla I don't remember that name.

  • ashla
    ashla Posts: 1,566

    Thx Camille...wonder if it was another forum..

    Exercise and sleep..

    http://www.sharecare.com/question/can-exercise-improve-quality-of-sleep

  • ashla
    ashla Posts: 1,566

    Pbrain...

    Our bodies change dramatically after chemo and with the estrogen sucking drugs as Lago calls them. Our bodies do prematurely what would have happened naturally over a long period of time in the aging process as we lose estrogen,

    I have discovered that much of it can be improved by diet and exercise but it's alot slower and harder than before treatment. I have also found that exercise has become the best part of many days and although I was never overweight..I was never a fitness fanatic before.

    When you are ready...you have to be ready ....may I suggest you enroll in a beginner or chair yoga class. For me it was the beginning to a body and mind awakening change. It's a gradual process and weight loss is not an issue.

  • bren58
    bren58 Posts: 688

    Pbrain, I am sorry for what you are going through on your trip home. We always wish for trips home to be positive and comfortable but unfortunately they are not always that way even under the best of circimstances. Our families can sometimes be our harshest critics. As I think Moon said, a trip home often reminds us of why we left.

    I am glad you said that you still admire yourself! I know I admire you as do a number of ladies on this board. You have been through a lot, much more than some of the rest of have, and you have done it with humor and strength.

  • ashla
    ashla Posts: 1,566

    PBrain...

    I agree with the rest of the girls. I think maybe the difficulty is that everyone else looks at us and treats us as the same person we were before cancer. For us...everything has changed.

    They are being who they were and are. It's up to us to decide if we're willing to go on that way some more. It's scary but empowering too.

    We all get it. Too bad we all had to learn this way.

  • tonlee
    tonlee Posts: 1,590

    Good morning ladies. 

    Just wanted to pop in and say hello.  I read the previous page and the discussion on weight (sorry PBrain that people you love hurt your feelings :(....) and especially AA comment caught my attention.

    AA, I've read a lot about weight gain after breast cancer in the journals.  So the professionals in the field are aware of it.  But you're right.  They recognize it, but that seems about as far as it goes.  

    I'd love to have a post-cancer nutrition/fitness professional to help because since chemo and Ooph, my body is practically a stranger to me when it comes to composition and performance. 

    But here are some things I've learned through trial and error along the way.  (These apply to me, and may not necessarily apply to anyone else.)

    1.  Sugar/Sweets.  Love them.  I occasionally treated myself (1 time a week) to brownies or cookies, or whatever.  Before chemo/meno no problem...I burned it off easily.

    Now, if I ingest even a little bit, as part of my total calories for the day, not even above it, I will bloat up with 3lbs of fluid over night.  It takes me exactly 7 days to get rid of that bloat (this may have to do with my heart damage from Herceptin too...)...sugar acts almost like too much sodium in my body.

    2.  Before I did 6 hours of cardio (pretty hard cardio) a week, and 2 days of weight training on top of that(plus I'm pretty active all day).  Over the last 6 months I noticed severe muscle loss and my body fat went up 6%!!  And nothing changed as far as working out/diet.  (Some of you may remember I track every calorie .. and still do.)

    So I added 3-5 more hours of cardio, and an extra day of weight training. My body fat is slowly dropping...at about a 4 times slower rate than before chemo/meno.  

    Calories for me (and I say for me because I do believe each of us have different caloric needs and metabolisms...)

    1255 a day on no weight training days.

    1500 a day on weight training days

    Occasional fast days

    I'm 5'4" and right now 122 pounds.  (I will say I've gained about 3 lbs in muscle since upping my protein).  That is exactly 10 pounds heavier than I was at the very beginning of all this.  But I can maintain it with all the above.  

    Is it menopause?  I don't know...but it sucks to work twice as hard for half the results!

    3.  Protein.  Before I could build muscle/maintain muscle on 65-70g a day.  Through trial and error I've learned I need just about 1g per pound of body weight to keep muscle, and keep it STRONG.so at least over 100 a day..which leads to..

    4.  Strength.  I'm just not as strong, no matter what I do,as I was before chemo/meno.  I am also more prone to injury.

    I'm slowly and reluctantly coming to the conclusion it is what it is.  So I wear a size 3 more comfortably than a size 1 (when 1's used to be loose on me).  

    I am pretty sure if I wasn't doing all this, I'd be at least 150 pounds by now.  AT LEAST.

  • ashla
    ashla Posts: 1,566

    Hi TonLee..

    Great info ! I 'm not the fitness expert you are but have noticed all the same difficulties. If I did half of what I do now I could have been a swimsuit model before BC.

  • lago
    lago Posts: 11,653

    Pbrain if it's not your weight it will be your hairstyle, your make up, your clothes, your job, how you raise your kids, yadda yadda yadda. Moms mean well but they never can complete deal with you being an adult. They always give this unsolicited advice many times making you feel like crap. Weight is a tough battle especially since you have been a bit larger all your life.You are still healig from treatment

    You will lose when you're ready but it takes lots of discipline and patience. Not just working out. It's portion control and what you eat. I would ask your onc if s/he could recommend a dietitian if you really want to lose. I recommend following a diet similar to what diabetics follow. Meaning cut out the sugar and cut way back on white carbs (white bread, pasta, rice). Also don't eat any portions for dinner bigger than your fist unless it's a vegetables. Pay attention to how things are made. Deep fried or dripping in butter is extra calories. Cheese packs on lots of calories so keep the portion to more like a garnish. Drink lots of water and stay away from sugary drinks. Salad dressing can pack on calories. Water it down and stay away from the creamy ones. And take it slowly. Loosing slowly will keep it off. The good news is it's easier to take it off from the tummy than it is from the thighs and butt.

    I would also try to get in not only some aerobic (like walking at a fast pace) but some strength training. Muscle boosts the metabolism. I do that at home with just a few weights and my own body weight. Nothing fancy. Some people uses bands.

    BTW get in line. Look around you. Almost 70% of all adults in the US are overweight, 36% of those are obese. It wasn't that way in the 70's. The foods & portions we eat and sitting in front of the computer hasn't helped. The 90's was all about supersizing.

    Tonlee! just saw your post after writing this. So good to see you. Just thinking of you yesterday. How's the gig going?

  • tonlee
    tonlee Posts: 1,590

    Hi Ashla!  I know it's crazy right? 

    Lago,

    Thank you for asking!  Well I can tell you unequivocally we are a HUGE success.  I can't even begin to tell you all the things we've accomplished in this community in the last two months.

    I've learned so much about sex trafficking from survivors, johns, judges, citizens.

    This is a fairly "new" field of study in the US.  AT the national level research is about 10 years old.  At the state level less than 2 years!  I am heading up the research arm of my organization.

    So in a nutshell here is the truth based on the data so far (collected by the state of Ohio):

    Less than 20% of children trafficked in our state come from "poor homes" or were ever in the "system."

    20% of children trafficked in Ohio are boys (Polaris Project)

    Ladies, if you live in the burbs...know this..right now in aftercare (survivors of trafficking) most of the women were young girls in the burbs when recruited...from 'good' families, and recruited (not taken!  LURED away)...from places like CHURCH youth group, the mall, the PARK, etc.

    Traffickers aren't stupid.  They are often white savy business men with families!  (ST is set to outpace DRUGS in three years!!)  They're reaching into homes on the net ....

    We teach our children stranger danger..but the odds of them being sex trafficked are between 5 times and 10 times more likely (depending on your state).

    Street prostitution is old school.  Yeah it still happens alot.  But now people can go to Craig's list and backpage.com and just order it up and have it delivered. Those girls labeled "barely" legal on Craig's list?  There is a pimp 95% of the time behind the camera and those girls are MINORS!

    ~Whew...sorry about the soapbox....it's like finding a snake in the garden...I want to tell everyone!  lol

    You can check us out at befreedayton.org

    Though our website is getting moved to another server so it is down sometimes but never for more than a couple hours.

    I miss you ladies!  And I think about you often :)


  • ashla
    ashla Posts: 1,566

    TonLee...

    These people have no idea what they're coming up against with you. You go girl!

    Proud of you....

  • tonlee
    tonlee Posts: 1,590

    Thanks Ashla!

    I want to get a billboard that says.."PIMPS ON NOTICE.  beFREEdayton.org"

    ;)

  • rozem
    rozem Posts: 749

    hi ladies...havent been on this thread in awhile - hope everyone is good!

    tonlee - just reading your excercise regime makes me tired :) your job sounds amazing - nice to have work that is so meaningful

    Im glad (wrong word but i guess misery loves company) to read that you guys are experiencing the same thing - that our bodies will never be the same.  I feel like im 100.  I had my ovaries shut down and this had made things worse, my bones are killing me.  I hope the results from the SOFT study show no benefit to ovarian suppression because i want some estrogen in this body

    i was just wondering if anyone has experienced a heavy feeling, almost like a chest cold (no coughing) - ive been feeling this way for about a week now.  Of course my mind is going to the dark place.  Can we have Herceptin heart issues show up later?  how likely is that?

  • tonlee
    tonlee Posts: 1,590

    Roze,

    Herceptin issues do show up later in some women..as far as 8 years out according to the studies I've read. 

    If it persists, or you have any shortness of breath, make an appt and tell them you want your heart checked out.  You can google scholar the articles on herceptin damage years after tx....

  • rozem
    rozem Posts: 749

    thanks tonlee - i had "E" with my treatment which can also effect the heart.  The fatique is unreal the past week - im terrified its my ticker or worse my lungs :( but i have zero coughing.  I went for my usual 3k walk the other day and i really thought i was going to pass out.  This nightmare never ends

  • eileenohio
    eileenohio Posts: 268

    Roze-  what does "E" mean ?  Just want to know if I had it or not ?    Thanks

  • rozem
    rozem Posts: 749

    eileen - I had FEC - which is the canadian protocol similar to AC - the E is an anthracycline (sp?) its supposed to be better on the heart than A but its still cardio toxic - worries me since i had that and H -

    kay - i dont think we will ever feel "normal" - for those of us slammed into early menopause i am sure that is a huge contributing factor to the inability to bounce back quickly.  Bone health, heart health, muscle loss - all part of meno

  • ladieesnapps
    ladieesnapps Posts: 2

    Hello everyone!

    I am a BRCA1+ and had Stage 2B bc, grade 3 tumors, with 1 node affected but the cancer had already "begun to spread," according to the onco.  I went from no tumors in mid Nov. 2011 to 3 tumors by Feb. 2012 - diagnosed Feb. 7, 2012. I have asked my onco, and even got a 2nd opinion about the status of all my tumors since I only know 1 was ER+. 

    I don't know if there is any way to get this info 18 months later but it still bothers me. Has anyone else experienced anything like this? Advice?

  • tonlee
    tonlee Posts: 1,590

    Kay,

    For me, the injury that is hardest to deal with is my lower back...never had lower back issues but now...OUCH...sometimes a simple motion like bending over to grab a shoe will cause it to flare up and it always lasts at least two weeks...

  • AlaskaAngel
    AlaskaAngel Posts: 694

    TonLee,

    Your commitment to community is impressive, and making a difference. How much even just one person can do when they have the desire to make it happen!

    As for the post-treatment issues, there is a lot more discussion now at cancer centers about trying to include more focus on post-treatment, in order to lower recurrence, but not a lot of actual services available.

    At over 10 years out, I remain a bit of a "renegade" in forums because the vast majority are people within the first one to 3 years from diagnosis, with many still figuring out their diagnosis and treatment or in it. But that is part of why post-treatment issues are important to discuss here, since more toxic treatments have slowly moved more and more into even the very earliest stage groups, yet the vast majority of those people would never need anything more than surgery to remain recurrence-free. Those people need information from those who are post-treatment to help them make the most truly informed decision and "best guess" about choosing treatment. With so many being pre or perimenopausal at the time and no real personal basis to know much of anything about the changes with aging and menopause, and especially for those who have spent decades without losing their energy, sensuality, libido, muscular system, and youth, it is hardest of all to get across that in fact many of the changes DO happen in a short period of time, even to them.

    A.A.

  • arlenea
    arlenea Posts: 1,150

    AlaskaAngel:  Very interesting information and take on things!  Many of us early stagers always (and still do) wonder if all the toxic stuff really did anything.  If I remember correctly, you merely had surgery.  I guess I liken it to a skin cancer (and I've had many), the docs remove it and make sure all margins are clean and if not, go back and if so, that's the end of it.  Realize, of course, that most skin cancers are not as aggressive as breast cancer.  It is also important to note that not too long ago, breast cancer was a death sentence but not so now.  Hope the research continues to find that link!

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