February 2012 MX

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  • cajmi
    cajmi Member Posts: 80
    edited May 2012

    Hi Ladies,

    I'm back.  Working my first 12 hour Midnight tonight.  My schedule is really lousy for the next month as they just fit me in where they were short...

    Deborah,

    Sorry I didn't get to wish you good luck, but by now it's all done and I'm sure you're doing fabulously!!

    To everyone dealing with bureaucracy, hang tough!!!

    Debbie,

    Keep us updated on the exemestane and we'll keep our fingers crossed for no side effects:>

    Hope everyone is doing well!!

    Carolyn

  • Deborah2012
    Deborah2012 Member Posts: 234
    edited May 2012

    Hello to Fab Febbies. Thank you all of the well wishes.

    I had my reconstruction surgery today .



    I have a drain in "Ms. Goody Nippled". She is sore & painful. However,

    "Her Royal Foobness" feels no pain because she's an out-of-touch royal. "HR "Foobness " had her magnetic device removed. Therefor any navigational duties get contracted out to Dixiemine as she is a true pioneer in locating magnetic north.



    I have bags of frozen peas I must use to prevent swelling. They're just swell! When I smell peas, I'm overdue at changing my rotating bags to and fro the freezer.





  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Carolyn...hope your shift isn't to bad for you, I don't know how you do it. I return to work Thursday and I have mixed feelings. It seems I have been home for so long I am in a new routine, one the other hand I am glad to get back out in the real world and do something productive and be around my work friends again.

    Deborah...glad you are home and still have a sense of humor, love reading your post. Wishing you a speedy recovery.

    Looking forward to hearing from everyone and wishing you all the best!!!

  • DebbieOS
    DebbieOS Member Posts: 140
    edited May 2012

    Hi Deborah, Bern, Janice, Dixiemine and all FFF's!

    Glad you are all doing so well these days...movin forward...taking care of business with recon and hormone therapy, yet....getting back to our "old" lives....somewhat!  And, yet we will all forever have our "war wounds" from this period in our lives...I don't know whether we can ever truly return to our "old" selves again, as we are changed women.....stronger, and with a mission to live!  And, live well!

    Well, I've been on exemestane for 3 days now and not one headache!  Yay!  (With arimidex, within 1 1/2 days, my headaches started....)  I may have found the hormone treatment that will work for me! 

    Tak

  • DebbieOS
    DebbieOS Member Posts: 140
    edited May 2012

    Take care ladies and Deb, I will call you this afternoon!

    Hugs,  Deb

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Hi Debbie...I am glad you are headache free so far...I will be waiting till the 12th to start the Arimidex (generic). I am praying I don't get any SE's.

    You have a point about our "old/Past" selves. The breaks have been put on for me and I guess it is time to slowly start moving again and mybe enjoy a little more of the scenery along the way.

  • DebbieOS
    DebbieOS Member Posts: 140
    edited May 2012

    Thanks Bern. ...Oh, and by the way....HUGE, HUGE difference between Arimidex and Aromasin (Exemestane) side effects for me...so they definitely are not all alike!  So, if one doesn't work, definitely try another!

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited May 2012

    Deborah2012, hope things continue to go well. 

    Carloyn, 12 hour shifts, I can't imagine, but there is soemthing to be said for being back in the routine of things.

    I had my 3rd of 4 AC treatments last Friday.  1 and done.May 18th  This is the week that I am tired and it has been gray here in Massachsuetts so I am not in the best of moods. This too shall pass.

    Gentle day to all

    Nel

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Thanks Debbie...Right now the hot flashes at night seem to be getting worse just from the ovaries coming out. I am gradually getting back into my workouts so hopefully the joint pain/stiffness won't be as bad. Were you just getting headaches or did you get other SE's too?

  • DebbieOS
    DebbieOS Member Posts: 140
    edited May 2012

    Hi Bern.  It was just severe headaches for me...but I was on it for two such short periods....3 days on then a week off, then 2 days on, so I'm sure I didn't get to experience the full "joy" of Arimidex!  ;P  Yet, I've talked with others who didn't seem to experience any major symptoms at all.  So, I guess we're all so different...

    Nel...hang in there...I can't imagine having to go through chemo in addition to all of this other crap.  BIG, but gentle, HUGS!!!

    And, Deborah, are you feeling better today?  I sure hope so..... I sure feel for all of you who are going through more surgery for recon stuff (or ovary removals).  Gosh, haven't we been through enough?

    Hugs, Debbie

  • Layla2525
    Layla2525 Member Posts: 827
    edited May 2012

    Hi girls! I am ok today,not sad but scared cause I gotta go to my MO appt and tell him I quit the Arimi without his permit due to not being able to breath and talk (tongue swoll up) and another long list of side effects. Also very mad that the oncotype dx test was never mentioned...are they making too much money throwing the Arimi at me and then I gotta get the bld prz med for the side effects and 2 expensive ointments for my sores on my severely chapped lips? Maybe my chance of it coming back is 1%??And whats up with Montel Wms he had breast cancer 20 yrs ago and now he wants to talk about it?  Anybody in FL know what I gotta do to get eh Oncono test? And what is it? Is it a blood test? Or like an MRI? My office wants a dr treatment scenario on the FMLA papers and the PS gave the papers to her asst who is refusing to do it until my next surgery. At our office the FMLA on file gives you the right to take an unpaid day off so you can save your paid leave for the surgery. I am waiting on my implant surg and get my TE out got 420 cc right now but waiting to be a C or thereabouts. I am mad!!!!yeah and the British kind of insane mad also.

  • mma59
    mma59 Member Posts: 43
    edited May 2012

    Layla, oncotype dx is where they send a piece of the actual tumor to a lab in California and they do testing.  You get a score and if it is under 18 they do not recommend chemo.  However, I am taking tamoxifen.  I don't know if anything gets you out of the hormone blockers!

  • DebbieOS
    DebbieOS Member Posts: 140
    edited May 2012

    Hi Layla!  Definitely ask your doc about exemestane...it's another aromatase inhibitor, but for me, there seem to be zero side effects from it versus the arimidex, which was a nightmare. 

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Uuugghh...another Arimidex failure...Deborah2012 how are you feeling? Is the recovery any better pain wise? Are you as nerveous about starting the Arimidex as me? I am tempted to start it early just so I know what's gonna happen.

    Layla2525...vent away...they should have done the oncotype test with your DX because you qualified for it. Sorry about your SE's with Arimidex. How long were you one it before you had a reaction?

  • Deborah2012
    Deborah2012 Member Posts: 234
    edited May 2012

    Hi Bern,

    I took the generic for Arimidex about an hour ago.  All I can say, is be careful what all these oncs  wish for.  They didn't want to wait until after I recover from the final implant surgery I had on 4-30-12.  I have a drain on the lifted left side. 

    So, here's what I faced this morning.  I had to take my anti-biotic horse-sized pill that always makes me nauseous.  I am directed to take it with food even though one should take it on an empty stomach.  I also popped the hormone blocker, at the same time.  So, if I get nauseous, they won't know why.  Too many damned variables.  I did sleep through the night without any pain meds whatsoever.

    The lifted "Ms. Goody Nippled" hurts much.  The MX side can't feel a thing. The PS gave me a velcro belt to help keep the lifted side hiked up. The wonderful side effect of the belt is the deep sutures propping her up are not doing all the heavy lifting on their own as I heal.  I stuffed a kotex pad under the belt as well to create a soft shelf and keep the band on better under the lifted breast.

    Also, PS got rid of the deep suture that was attached tomy sternum from the TE (that mild pain was always present).  I don't miss the TE cardboard box under my chest one bit.  That has been a real value add to my quality of life.

    Smiles and hugs to all.

    Glad to see Layla posting again. What a drag you're facing all that aggravation and disappointment.  Sending goodwill your way.

    Deborah2012

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Hi Deborah2012..I am glad you could at least sleep without the pain meds, that was aways a sign to me as "better things to come". Do you think my Onc is waiting too long or do you feel your Onc is pushing too much? You sound like your poor body needs a break. You have a lot going on.

    Layla2525...when you are ER+/PR+, HER2-, node negative should have required an Oncotyp Test.

    Nel...Can't imagine the Chemo...sending best wishes to you. I like the phrase, "THis too shall pass"...I will try to remember that everytime something comes up.

    Hope everyone is doing well..

  • Dixiemine30
    Dixiemine30 Member Posts: 163
    edited May 2012

    Deborah -- YAY!!  So glad to hear your exchange isn't too bad.  I'm so ready to get my over with.  I literally laughed out loud at your post last night.  I've learned to embrace my upside down faux righty, she is just misunderstood :-)

    Nel -- I was wondering about you the other day.  Hugs girl.

    Debbie & Bern -- sending all my "get out of a headache free" cards to you two.

    Beth -- You are missing AGAIN.  Just sayn'

    Carolyn -- I hear ya!!  I've been working 50/60 hour weeks for the last month, I'm thinking they forgot I'm in RECOVERY!!!! :-)

    Layla & mma -- Good to see you again :-)

    If I missed anyone who still checks in daily.....I miss you too!!

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Hi Dixiemine30...You need to get some downtime...50/60 hr weeks are a lot...how are you holding up? I go back tomorrow but I was told they will be keeping the temps until I feel ready. "Almost" 50hrs is not unusual for me but not for a little. 

    Thanks for the "get out of a headache free" card. Smile

    Best to all of you "Fab Febs"!

  • Deborah2012
    Deborah2012 Member Posts: 234
    edited May 2012

    Hello FFF,

    Well, I had a set back last night. I've a call in to my PS. I had a terrible pain episode.  Felt like my lifted breast skin was on fire, as in topically burning.  I literally screamed out loud in severe pain and then cried because it hurt so much.  Shook up DH pretty much, too. Poor guy. I don't believe I have an infection.  No fever.  Never had pain like that before.  It's my own fault.

    I had gone 30 straight hours without any pain meds whatsoever- not even an ibuprofen. Why?  Because I wanted to take my Anastrozole for the first time yesterday morning without pain meds in me.  I'm already taking antibiotics, etc. 

    Okay the pain comparisons for those who are facing reconstruction:

    1. With the MX I had deep suture dull aches and if I moved a certain way, it'd hurt.  Had to make the pillow fortress to avoid painful positions.  However, I think I took 3-4 pain pills total spread out over a week.  I could handle the sutures to my sternum.  The MX was almost a "breeze'.  Not bad at all. The drain regimen is what stunk.

    2. The reconstruction on the MX side.  The TE replaced is a breeze!  She has no feeling, looks great, the deep sutures were removed, she's a very good girl!.  Easy peasy, lemon squeezy easier than the MX. No black and blue, green nada.  Picture pretty!

    3.  The lifted non-MX side is a @*%*! The dull pain from deep sutures (more sutures than what was done when TE was installed), I can handle.  In fact, I don't have to make the exact pillow fortress like I had to with the MX TE install to avoid dull pain.  The skin sensitivity is another matter entirely.  The burning is sporadic.  I don't know what triggers it. I would assume it has something to do with nerve sensations after anesthesia wears off? My nipple was surgically uninvolved although it's very sensitive.  The incision was under my breast fold above the top rib. It is NOT the same as the "zings" we felt with the MX.  Those were almost comical.  All of the sudden we'd get a surprising little electrical charge and it zapped us for a split second.   This feels like kerosene had been splashed on my breast skin and then lit on fire.  And it lasted longer than a split second.  I truly do not know how women tolerate chemo.  Nel, you're my hero! I've heard chemo for many is like fire inside.

    And to top it off, my BRCA sample sent to the lab last week hasn't been tested yet!  Apparently the BRCA lab wants more family history info?

    Ya know, I'm just going to celebrate the whole blasted goat rodeo with some Milk of Magnesia since I'm on day 4 of that hostage crisis situation!  We've all been there, done that one, right!

    Your cranky FFF Frown

    Bah humbug!

     

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Hi FFF's

    Deborah2012....wow, can't believe how much pain you are having. After my lumpectomy I had such a pain that continued as I watched my breash swell before my eyes. I had a bleeder, stayed overnight in hospital in case they had to go back in but it stopped. My BS gave me valium for the spasms so I really didn't feel anything in my breast after the BMX. Even my back felt better taking them. Now that I am weaning off them I can feel my back pain more, but I wanted to be off everything before I start the Anastrozole. Hope you are feeling better since your post.

    Today was my first day back at work. A little overwhelming, like the first day all over again. They did take me to lunch and had flowers sent so it wasn't a bad day. It did kick my butt, (stayed longer then I planned) but it is good to be back doing something productive. One of the temps that came in to cover for me just had a breast biopsy Monday....what is going on in this world? She will be coming in tomorrow, if she needs too, I will tell her about this sight and all the wonderfull women on it! I hope she doesn't need too though.

    Deborah, take care of yourself.

    To all FFF's I am looking forward to your post! (couldn't wait to get home to check in, LOL)

  • Galsal
    Galsal Member Posts: 1,886
    edited May 2012

    FFFs, may you all be well during your journey and recoveries.

  • Deborah2012
    Deborah2012 Member Posts: 234
    edited May 2012

    Hi Fab Febbies and Bern25,

     Feeling much better. Slept all day. PS said unfortunately, that type of burning pain sometimes happens- it's nerves and proximity to sutures along with inflammation etc. 

    He basically told me to take the darn pain pills- that's what they're for!  So, this afternoon at 4:30 pm, at the first sensation, I took one.  No pain.  Was able to clean my dressing and switch out compressions bras per his orders and feel brand new.  I may have more episodes like this in the next few days.  If they don't subside, apparently there are Rxs specific to nerve pain if needed. 

    Lesson learned for me: the surgery is more immediate than the cancer prevention.  No one told me I should withold pain pills post surgery due to concerns of introducing Anastrozole. That was my idea. So far, no headaches, no nausea related to Anatrozole in the first 24+ hours. Stupid to suffer through pain unnecessarily.  My improved pain-free outlook and optimism alone must improve my healing. Whew!

    Hugs and happy bubbles blowing your way to my Fab Febbie sisters!

    XOXXO 

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Deborah2012....glad to hear you have your optimism back and will be pain free...yay!!! Love the happy bubbles floating around...here's to an even better day tomorrow.

    Galsal...anything new?

    To all the FFF's...have a great night, hope you all sleep well :)

  • Nel138281
    Nel138281 Member Posts: 2,124
    edited May 2012

    Deborah2012,  Glad things are moving forward.  Pain pills if needed, stay ahead of it.  The other night sounds just horrible.  Hope for a better weekend.

    To everyone retuning to work, you go but remember to nap, nap nao when you have a chance.  get the sleep you need.  I think for alot of us who were moving thru life double time,taking time for ourselves is like a " What are you thinkning"  moment.  I am learning and trying not to feel guilty

    Genlte weekend to all

    Nel

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Hi Nel...great advice! I just finished day 2 at work and I stayed ALL day because I just keep trying to get my desk cleaned off...Monday I am going in later so I am forced to take a shorter day...really felt it in the arms today and left groin/hip area (I guess from the ovaries out) ugggh....TGIF.

    Deborah2012...are you feeling any better today? I hope so Smile

    To all the FFF's hope you are being kind to yourselves and have a relaxing weekend! 

  • Deborah2012
    Deborah2012 Member Posts: 234
    edited May 2012

    HI Bern and Nel,

    I'm feeling great!  I haven't even had enough of a pre-cursor pain to warrant a pain pill.  You bet I'll take one if needed!

    I agree with the sleep advice.  I've slept almost all day for two consecutive days post the "burn" episode.  Glad you'll get to rest Bern.  

    Hope all have repairing and re-fueling weekends.

    XOXOX

    Deborah2012

  • Galsal
    Galsal Member Posts: 1,886
    edited May 2012

    Deborah, glad you figured that out about the med.  Bern, I go on Tuesday to see PS again.  So hoping to finally get started at least on the pre-testing!

  • Bern25
    Bern25 Member Posts: 125
    edited May 2012

    Hi Galsal...sending positive vibes your way. Definitly let us know what they saySmile

    Best to all!

  • Galsal
    Galsal Member Posts: 1,886
    edited May 2012

    You know it.  Hesitant to get excited at this time since there's been so  many  delays already

  • Dixiemine30
    Dixiemine30 Member Posts: 163
    edited May 2012

    No posts in 2 days!!!   OH NO!!!

    Miss ya'll..

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