TRIPLE POSITIVE GROUP

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2012

    moon - I also lost my left TE prior to chemo and was delayed.  It was out for 7 months (surgery to remove, waiting to heal, chemo, waiting to recover) and I did not fill the right one.  I used a variety of prosthetics depending on what I was wearing.  I also strategically used ruffled shirts, blousy tops, and looping scarves to camoflauge.  There is a TE TROUBLES thread for those of us who have faced this particular challenge - a great group of ladies with advice and support.  Welcome to you, sorry you have to be here!

    edited for spelling

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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012
    Welcome Moonflwer - Glad you found us.
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  • lago
    lago Member Posts: 17,186
    edited January 2012
    Welcome Moonflwr. BTW that is not a long post. Stinks about the TE
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  • shore1
    shore1 Member Posts: 739
    edited January 2012

    SpecialK - yay for finishing herceptin! I had #11 taxol/herceptin today. Do you think the aches you have are from herceptin or whatever AI you take? What do the aches feel like? Im curious because I will start tamoxifen when chemo ends & herceptin continues every 3 weeks. Im getting ooph in spring so will eventually be switched to an AI. Not sure how timing of that works yet.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited January 2012

    Welcome Moonflower!

    HIP, HIP, HOORAY Special K!!!!

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  • ashla
    ashla Member Posts: 1,581
    edited January 2012

    Moon...

    This is one of very few places I know where apologies aren't necessary. Sorry we had to meet each other this way!

    Can I ask why you had a BMX? Your choice? I am onsidering requesting a BMX despite my BS and MO saying it is not necessary from the data available at this point. I had neo adjuvant chemo so we don't have the benefit of post lumpectomy pathology yet.

    Best wishes for your full recovery!

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  • ashla
    ashla Member Posts: 1,581
    edited January 2012

    Special K...

    Congratulations on finishing Herceptin! Only members of this club can understand the battle you fought to get there! Wonderful, wonderful, wonderful news!

    You go girl!

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  • pejkug3
    pejkug3 Member Posts: 902
    edited January 2012

    Last Herceptin in a few minutes.  I get to join all of you who have already graduated!  :)

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  • saralmom
    saralmom Member Posts: 329
    edited January 2012

    Congrats to SpecialK and pejkug3!  Hooray for being done with Herceptin and infusions!

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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012
    pejkug - Whoo Hooo!!!  Congrats on finishing!!
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  • kriskat
    kriskat Member Posts: 163
    edited January 2012

    SpecialK and Pejkug- Congrats on finishing! I can't wait to join u!

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  • ashla
    ashla Member Posts: 1,581
    edited January 2012

    Pejkug

    How wonderful!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2012

    Thanks everyone!  Yay for pejkug! It has been a lonnggg year!

    ashla - I did BMX when I could have had a lump too.  I was not comfortable with leaving the other breast and dealing with a future dx down the line.  Undiagnosed until after post-op path - ADH/ALH on the "prophy" side.  No regrets.

    shore - the aches feel like I worked out too hard and are mostly from the hips and down.  I have sharp pain in both knees when I get up from sitting.  In the morning when I first get out of bed my ankles don't seem to really bend well so I look like I am shuffling for about the first 100 steps.  So if the house is on fire I will have to shuffle out!  Laying down does not feel any better and I have a hard time falling asleep because I am in pain.  Interestingly, my tumor markers have gone back up again - I think because of this inflammation.  I had very little trouble with this kind of aching during chemo - started with the very first H only infusion.  Moving helps, although my hips hurt after I walk (usually 3-4 miles) and I am considering cutting gluten and adding glucosamine/condroitin.  Compounding this is having fully filled TE's (and I mean fully!) that seem to be pulling on my neck and shoulders and causing pain between my shoulder blades.  Also, my LE arm is hurting more - I think it is from the TE pulling too.  My exchange is on 2/24 and it can't come soon enough.  I have been reluctant to go down the path of pain or sleep meds but I am struggling.  All that being said - I am not going to come off hormonals (I am 96% ER+), although I may switch.  MO is considering that, I see him on 2/17.  Man, I sound like a whiner!

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  • missy_111
    missy_111 Member Posts: 141
    edited January 2012

    Congrats Special K and Pejkug!!

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  • shore1
    shore1 Member Posts: 739
    edited January 2012

    SpecialK, let us know if your pain goes away now that taxol is done & if your back feels better after exchange. My neck &I shoulder blades hurt a lot, constantly, and docs think its expanders - up to 580 cc now so almost there. Not sure I can take much more!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2012

    shore - I have 575cc in the left and 650cc in the right (chest wall anomaly/left TE replaced causes the difference) and I am ready to get rid of these!  I have been done with Taxotere for 7 months so I don't think any of this pain is from that - it is either the Herceptin. the Femara, or both.  My MO's P.A. said If it is the Herceptin (which she did say happens, but not often) I should see improvement at about 5-6 weeks from the last one, so basically when I have new pain from the exchange!  Oh boy!

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  • YaYa5
    YaYa5 Member Posts: 667
    edited January 2012

    i shouldn't be posting here because i'm not triple positive, but i'm going to anyway!!

    specialK, congrats on finishing herceptin!!!  i'm so happy for you.  do you know what you're doing with your port yet?  

    pejkug,  congrats to you, too!!

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  • lago
    lago Member Posts: 17,186
    edited January 2012

    Ya Ya you are about as close to triple positive as I am. I'm only 5% PR+… post away.

    Yay pejkug

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2012

    yaya - MO wants to keep the port until I have another PET scan, but I am inclined to leave it longer.  I have a very tiny subclavian and even though it is in plain view 100% of the time, it can't be seen.  If I have it removed I will have a scar that is visible 100% of the time, so I am in no rush.  I am only 10 miles from the MO office to have it flushed and it causes me no problems.  The onc nurse said if she were me she would leave it.  Thanks for the congrats! How are you feeling? 

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  • Omaz
    Omaz Member Posts: 5,497
    edited January 2012
    yaya - I agree, post away!!  Hey, you're done with rads now, yes?  Skin healing up?
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  • lago
    lago Member Posts: 17,186
    edited January 2012

    I still have my port (Oct 5th made a year). Less than 2 more years to go then I deport.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2012

    lago - mine has been in since 11/1/10 - hard to believe it has been 15 months!  I really was not aware of the need to have it flushed and in all the confusion of so much surgery right after my BMX it was not accessed/used/flushed until 2/17/11, so 3 and 1/2 months!  No problems though, it has worked like a champ.

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  • lago
    lago Member Posts: 17,186
    edited January 2012

    I only have mine flushed every 3 months per oncs instructions. If it does become a problem I will have it removed but so far no issues.

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  • ashla
    ashla Member Posts: 1,581
    edited January 2012

    I am so surprised that they would leave the port in after treatment. What is the reasoning? Are they so difficult to remove and replace? My BS never discussed this with me.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2012

    ashla - it seems to be an onc philosophy thing - some oncs like their triple pos ladies to hang onto the port for a couple of years in case of recurrence, that way it does not require a surgery to place it again.  If you look at the graphs for recurrence in HER2+ it tends to happen sooner, so...  In my case, it is looking like I need to have some bone strengthening drugs but I can't take any by mouth because of a previous gastro-esophogeal surgery years ago.  The one planned is a sub-cutaneous, but if I switch to Reclast it is an IV drug.

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  • lago
    lago Member Posts: 17,186
    edited January 2012

    The port can not be placed in the same place once its removed.  Since the chance for recurrence is the highest in the first 3  years my onc likes her patients to keep it for 3 years but doesn't demand it. I feel now that she said that I will jinx it if I Get it removed

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  • redninrah
    redninrah Member Posts: 773
    edited January 2012

    with the amount of issues i had at the hospital during recon, they cudnt find veins, i wished i had left mine in!

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  • Awnooo
    Awnooo Member Posts: 85
    edited January 2012

    Help ladies!!

    ending TCH soon, BMX coming up, finishing my year of herceptin after then

    would it be so horrible if.....

    a> get the port out during BMX, avoid another incision on my chest, and let my arms do the herceptin for the rest of the ride

    b> keep the port, get another chest scar at end of year, and have the port do the herceptin job....

    what would you do! im not very vain, but i wanted to avoid me further ugly scarring, im dark complected and i dont scar beautiful like other people do.

    HELP!!

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  • Awnooo
    Awnooo Member Posts: 85
    edited January 2012

    i look like such a positive spirit! <i know the stats> wishful thinking?

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  • ILBoysMom
    ILBoysMom Member Posts: 79
    edited January 2012

    When I had my reconstruction, the PS would not let me use my port for access during the surgery as it was too close to where he was working.  So, the port may not be able to be accessed during any surgeries.

    My PS offered to remove mine during the procedure as you mention above to reduce scarring.  I opted to keep my port - then at my next onc visit she took me off the Herceptin due to cardiotoxicity.  Go figure!

    I think it all boils down to how much you hate/tolerate IV sticks. 

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