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TE TROUBLE

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  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    Mich_M - Saw the PS - he says contact dermatitis, use topical Benadryl.  I see him in a week so if it isn't gone after I do the Benadryl thing I will bring a gun and demand steroids.  Just kidding.  Glad to hear your fill went well.  I am excited for you!  I am nervous about fills because I HAVE NEVER HAD ONE!!!  Can you tell that upsets me?  I am 10 months into this!  Ridiculous.  At least I have two TE's again and that is worth celebrating all by itself!  That will be my new mantra.

    vhshea - how are you doing?

  • Just_V
    Just_V Member Posts: 436
    edited August 2011
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    SpecialK - hey girl.  I am hanging in there - I physically abuse my bad boob sometimes cause I am so pissed at it... will call the PS tomorrow.  When I was in there, he said call in six weeks to discuss a path forward - I was so shell shocked that it did not occur to me to ask why we need to wait another six weeks.. ugh.  So I will ask.

    Hope your itching and rash go away  -- sulpha drugs are the worst for me - I blister with the topicals - very allergic....

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    V - you're killing me with the Prince reference.  Glad you still have your sense of humor!  I know what you mean about the shell-shocked thing - I hate it when that happens.  You leave and think of 57 questions you should have asked while you were there.  Not yesterday but the previous PS visit I meant to ask about driving but forgot and made the receptionist ask and call me later.  He did give me permission to drive yesterday when I saw him, thank goodness.  I was at the cabin fever stage and we have already discussed the DD's driving skills.  I was just looking at your signature line - how are you doing on the Tamoxifen?  I started taking Femara (AI) and I miised a pill a few days ago, noticed far less aching/bone pain.  I have only been on it for about a week or so, surprised by that.  My first 50 steps in the morning are painful.  I am hoping that won't get worse or more widespread.  I am hoping PS is right about the contact dermatitis, as opposed something more sinister.  Please know I am thinking of you.

  • Just_V
    Just_V Member Posts: 436
    edited August 2011
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    Hey SpecialK - the Tamoxifen is pretty much a non-issue except that I get like 10 hot flashes a day instead of the 1-2 a month I had prior to beginning it... Some of the suggestions I've had for Tami (might differ for AI) is (1) split the dose in half - take in morning and night, and (2) take with milk (not sure if that is OK for AI or not).... When I first started on it, I was uber bitchy for about a week but that (I hope) has dissipated.... I did ask my co-worker at lunch today to tell me if it hasn't... cause I can always opt for anti-depressants to combat that symptom... (hell, what's a few more chemicals, right? )

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    V - Sorry about the hot flashes on the Tamoxifen.  That is actually not so much of an issue for me since I have been in menopause for 10 years.  I have been taking the Femara at night but waking up with stiff ankles and feet so I may try to split the dose.  What is the deal with milk?

  • Just_V
    Just_V Member Posts: 436
    edited August 2011
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    The milk prevents some of the stomach issues (I've been told)... I always make sure to eat something or drink milk when I take it, so I don't know if I would not have those SEs or if the food/milk is working.. but I am :( gaining weight... Gotta love BC.

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    Vhshea...is that still allowed or do we have to start calling you by an unpronounceable symbol??? lol



    I'm off to Santa Cruz this afternoon for the weekend. I'm meeting up with some other folks for the tail end of a camping trip. I have my blow up mattress and chair...I'm set!



    Have you ladies tried almond milk? I hate milk, I'm actually allergic to dairy. But I switched my household over to almond milk. It's better for you, especially women and it has a nice natural sweet tinge to it. I drink it with my pills.



    Michelle

  • Kyta
    Kyta Member Posts: 273
    edited August 2011
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    Hi ladies…hope you are all well tonight.

    SpecialK - I hope the benadryl works for you. Hope it's not itchy. Can totally get why you're bitchy about not getting a fill after 10 months!! It's such a long process when there are complications. Hard to be patient, No one goes into the TE process thinking it will take this long! 

    Vhshea - can sympathize with the hot flashes. I've been on tamox for 1.5 yrs now and still can't get used to the flashes and night sweats. I think it's getting a little better with time, but still a pain in the ass.

    Michelle - hope you enjoy your camping trip:) 

  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011
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    Love almond milk! It's great alternative to milk when cooking. I also eat it with cereal.

    Hope everyone is healing and resting up. Enjoy the weekend!

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    I bought an individually packaged almond milk so I could try it out to see if I like it.  I just looked at it in the fridge and can't find an expiration date - am I missing something, or is there not one since it is non-dairy?

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    The great thing about almond milk is it lasts for like two months after purchasing!  If you just bought it and its a single serving, you've got plennnnnnnnnnnnnnnty of time to drink it.

    I came home from Santa Cruz last night to find my refrigerator door wide open.  There was no coldness inside at all.  I had to throw everything out!  I was so mad!  Kids...  Anyway, I had a gallon of almond milk and six dozen organic eggs in there to replace...not cheap!

    I'm able to sleep on my sides now.  I'm so happy.  I have to wakeup to turn and change positions but it is so nice to be able to get into my fetal position or one knee up high while cuddling a pillow.  No surgery until Halloween so I'm going to enjoy this for as long as I can!

    Michelle

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    mrochon - thanks for the almond milk info, that is what I figured.  Sorry about the open fridge - one time I came home from a trip and found my fridge open as well.  I had someone coming in to feed my 2 cats and I guess they left it open a crack after putting the cat food (canned kind) back in.  Well, the cats, who were very mischevious, got in the fridge and punctured a tube of pillsbury rolls in those tubes, you know?  There was dough all inside the fridge, hanging off the ceiling and all the racks, it was a mess!  Crazy cats!  What were you doing with all those eggs?  Sorry, I am nosy!  Glad you are enjoying the fetal position for sleeping - I am a side sleeper too.  Interestingly, after I had the TE put back I could sleep on my side much faster than when I had them originally, like in a couple of weeks. 

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    It takes awhile to get used to the 'texture' and taste of almond milk.  It looks like milk but you know when you go to taste something with something else in your head and you're like...ewww what was that?!  I drank non-fat milk when I did which is basically white water, lol.  Almond milk is much thicker.  But put that in a bowl with some Honey Bunches of Oats....mmmmmmmmmmmmmmm!

    We go through eggs like crazy in my house.  Now that I'm back to my usual way of eating, I have two boiled eggs for breakfast during the week with some avocado (good fats) or berries.  My youngest would live off eggs if she could.  I alone eat a dozen a week.  I don't have a problem with cholesterol so there isn't a problem.

    Your cats got into your fridge and then punctured the pillsbury roll package?!  LOL  OMG....I can only imagine what happened when that 'POP' happened.  Did you find your cats still stuck to the ceiling when you got home?  lol

  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011
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    I'm imagining the You Tube video of your cats in the fridge and the exploding pillsbury dough boy! They must have had a heart attack when the tube popped! LOL!

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    I so wish I could have been a fly on the wall to see it!  They must have jumped inside the fridge!  They also knocked a bag of flour off the top of the fridge that same weekend. Maybe that happened right after the dough exploded!  It looked like a circus in the kitchen.  They were crazy kitties - litter brothers, very bonded to each other.  One of them also liked to steal canteloupe rind out of the garbage disposal.  If you put in in there you had to hit the switch and make it disappear or he would find it!  I lived on the second floor of this apartment building and they pushed a window screen off the window and jumped down two stories.  I came home and they were cruising around outside like it was no biggie.  I taught one of them to turn on the light switch that was right above the couch - he would do it on command!  They were awesome - very entertaining!

    mrochon - I love eggs but unfortunately after surgical menopause my cholesterol shot up like crazy - I am on a statin and try to limit my egg intake to a few a week.  I am looking forward to the almond milk - I think I am going to like it.  If you were a skim milk drinker almost anything would be better I think.  I could never get used to skim.  Funny, my DD has been visiting the Navy seal BF over the summer and those boys drink whole milk - she has only ever had 2% - she said their milk was "thick" and she doesn't remember having whole milk as a baby, don't remember what age I switched them to 2%. 

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    Those cats sound entertaining but I bet you had towonder what you'd come home to everyday! lol



    I actually liked nonfat milk. It was watery and thin, no yucky thick aftertaste. I couldn't take 2% or even 1%, even in cereal. The only way I'd drink it is if chocolate was in there! lol But after working out with my trainer two years ago and with the cancer I quit drinking it altogether. He really pushes raw organic dairy, if you need milk but I don't. Some people are afraid of raw dairy but if you think about it, it really is much better for you than milk that comes from a cow shot up with antibiotics then mixed with all that gunk to preserve it! Just buy what you'll drink. But...I'll stick to almond!

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    mrochon - I don't drink that much milk so I think I will be ok with the almond milk.  I mainly have it in cereal, which I think would be fabulous with the almond.  I use milk in cooking every now and then, but I could work around that.  My DD is the dairy queen (like yours is the egg queen!) so she would be hard-pressed to give it up.  I need the calcium but can get it other ways.  I need to put together a cohesive food/supplement/exercise plan now that I am on the other side of chemo and feel somewhat normal!  That will be my new focus along with the TE situation.  It looks like my physical therapy/massage will come to an end in the next couple of weeks so I will be able to go back to the gym.  I just need to go easy on the arms at the beginning and devote more time to lower body stuff to try to burn off some calories!  I haven't had that much of an appetite and have been losing about a lb. a week, but I need to firm the rest of me up big time!

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    I've been very lucky.  I have almost full arm rotation back.  I'm almost 8 weeks post-op.  I started with my trainer around week 4, just stretching.  Yesterday he took my stretching farther, omg, was that hard!  He's always finding new ways to take me further.  I hate it because I am reminded I still have a ways to go.  I love it because I can see how far I've come.  I told him my first short goal is my surgery for TE reinsertion in October.  I want to be down quite a few pounds and inches and most importantly, I want to be fully mobile with my arms again.

    A group of me and girlfriends have started a private fb group to track our eating and working out. We did this before when I got them in a bootcamp with me and my trainer.  We got really competitive, it helped us keep us honest.  It was alot of fun!

    I have some things that I need to research unless anyone here knows the answers.  How does working out, slowly strengthening my muscles and losing weight affect exchange?

    Michelle

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    mrochon - I also need to take off some pounds - I am a 10 lb yo-yo girl.  I can always lose the 10 vanity lbs. before an important event by walking (really fast) for an hour a day and doing South Beach.  We should all eat like that anyway - basically a mediterranean diet.  I am 10 lbs. up from chemo - basically inactivity, not so much eating badly.  I am seeing the physical therapist and for the moment she won't let me do anything with my arms but encouraged me to do anything I want below the chest.  She is doing LE massage and gentle stretching - adding new stretching every time.  Yesterday was pulleys and hand cycling, added to stretching up the wall and in the doorway with body weight resistance.  I was going to the Y here during chemo - they have the Livestrong cancer program.  12 weeks of free personal trainer with a specifically focused program - all free.  It is awesome.  I started it and then had to stop because of the pain and swelling in my arm.  They only count the weeks you go, so I have 10 left.  If I went outside in the heat, or exercised, my arm swelled so I had to stop.  Now that is under control so I need to go back. My PS said I had very thin pec muscles - he said it was genetic when I asked about not exercising enough before! He def had to use alloderm slings to hold up my TE's. One thing that I have read about arms and chest is light repetitive is better for ladies who have had nodes removed, not a great idea to push heavy weight because it challenges the lymph system. My DH and I were doing P90X (killer!) a couple of years ago - uses body weight resistance and no weights over 25 lbs. but combines plyometrics, yoga, abs, etc. Really varied so you don't get as bored and it really worked for me. I think I am going to go back to the Livestrong and gently start P90X again with South Beach and supplements and see how I do. My 10 chemo lbs, along with 10 vanity lbs. need to go!!! I have a tiny frame, I am 5'2" and normally a size 0-2 on top, size 2-4 on the bottom and I seem to be a 6-8 everywhere right now! I am a little worried about what size to be with exchange, I think I need to stay close to what I was before for my clothes to fit!

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    I used to do P90X like workouts at my peak with my trainer. The exception was that my workouts were 15-20 minutes max. High intensity workouts. The stuff I used to be able to do, lol, I was superwoman! Right now he has me on a detox, which involves food not those liquid crap detoxes. Just very clean eating. Like south beach but even more restrictive. It's just to clean the toxins and bad bacteria out. After that I slowly start introducing stuff back in. I'm two sizes smaller on top than my bottom two! I don't know yet if I want to bigger implants on top yet to even me out some. I always wear wrap dresses. I'd love to be able to wear a sheeth dress right off the rack!



    Yesterday I realized how careful I need to be in the heat. I walked to the store, a couple blocks. I had a couple light bags and my hands swelled, they hurt! I hate having to be weary of LE now.

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    mrochon - I had reflux surgery in '95 and I find that the more the pure the food the better I feel.  I do better with a single piece of fruit than a fruit salad with 10 different kinds of fruit.  Weird, huh?  I try to eat individual items as opposed to things with a combination of ingredients.  Be careful in the heat - your hand swelling may be a function of your recent surgery but we will always have to be careful of LE, especially having had repeated surgeries.  I am nervous about exchange too - by the time I do that I will have had 7 surgeries in about one year!

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    No not weird at all. I can understand why mixing different types would not be good for you.



    You think that swelling could have been a sign? Eesh, I need to read up on that.



    I'm at six surgeries counting back to last August, four of those in the past three months. Ugh. My authorization just came through for the genetics test. I'll be spitting in a cup tomorrow and sending it in!

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    mrochon - I had swelling and pain during chemo in my node arm more than the other arm.  I think that if you have swelling bi-laterally you are probably fine - probably more the heat (I remember Sacto summers!) and that you might have been cutting off circulation with the bags.  Did it go away when you came into a cooler environment?  Mine always did so I was less worried about it - it actually went away quickly when I came into the air-conditioning.  I had a blood BRCA test, and they did my Mammaprint the genetics of my tumor) with one of the samples from my core biopsy.  Is your saliva test for BRCA only?

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    I had nodes removed from both sides. I just don't know what to be worried about. It took awhile to go away once back in my office but then the air is in the fritz here! Yes the saliva test is for BRCA. I will be sending that off in the morning.



    Off to workout!

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    mrochon - I had nodes from both sides as well, but only one on the prophy side of the BMX.  I know they say you can develop LE from a SNB but I don't know what the stats are on that.  I hope your BRCA is neg - that was one of the bright spots for me in those early days after diagnosis.  They tested me on the day of diagnosis because I am adopted and have no family history info.  I was very relieved for the sake of my children!

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    I had to wait three months for an appointment with the genetics counselor and then after that wait for my authorization to be tested which thankfully only took a week and a half.  Sent it off this morning, hopefully I'll hear in two weeks!  I swished so hard in my mouth this morning hoping to get enough DNA from my mouth.  My cheeks are tired now. 

  • specialk
    specialk Member Posts: 9,237
    edited August 2011
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    mrochon - like when you smile too much!  I took three weeks for my result, but they also had it hanging around in their office for a few days.  I had to get mad and stamp my feet to get them to look for it - like they had no idea it was all I was thinking about for three weeks!

  • Rennasus
    Rennasus Member Posts: 642
    edited August 2011
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    Same thing happened to me with the BRCA test: After 3 weeks I called to see when my results would be in and they had just received my sample! I think the lab is a little overloaded. Stay on top of them!

  • Lifeafter
    Lifeafter Member Posts: 298
    edited August 2011
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    Oh you bet I will be on top if this. It's being fed ex'd overnight. I will give them tomorrow to receive and process it and will be calling on Friday to let them know...I'm one of those women!

  • psalms91
    psalms91 Member Posts: 93
    edited August 2011
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    Hello Ladies, well 3 weeks ago went into the er because o was running a low grade temp 99.4, which is normal but usually not for me, my white count was 6,900 which had elelvated from 5,000.still normal, i was so afraid that my TE that i still have in place was becoming infected that they started me on antibiotic and took 2 different sets of blood culture.No bacteria in my blood stream thank God, however i am so panic, i have since completed the anitibiotic and i feel like a waiting duck.I really want to try to the TE surgery again, but the doctors says 3 months without any signs of infection then we can talk.I am with Kaiser and the care and follow up is a little different than what i read from some ladies.BTW i am BRCA 2 positive.

    Michelle- I pray that your results are negative.