June 2016 Surgeries!

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  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited July 2016

    just got back from my MO appointment! 4 hours later... Lots discussed for a first meeting. I have to say.... I love him! He was really great in listening to my concerns on the different regimes and we talked out all the options until I was happy with a treatment plan that allowed for the best chance to reduce recurrence. I start on the 19th, allowing me time to get a port placed before I commence (plus I am currently scheduled for a 2 day golf tournament in wine country.... If I'm feeling well enough, I will be swinging the clubs and if not- I'll skip the tournament and just take some wine tours!... Starting chemo a week later allows me to not cancel.)

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  • Maya15
    Maya15 Member Posts: 323
    edited July 2016

    I'm amazed how many of us are dealing with this nerve pain, especially since my BS never mentioned the possibility before surgery. And even after surgery, they didn't ask, I had to insist they pay attention. Not that I had any choice about the mastectomy, but it would have been nice to know how common it is. I've been on Neurontin about a month now, and I'm still working up to my full dose (likely to be 1800mg a day, started on 200). It takes time but with each dose increase it gets better and now my pain is almost gone. The massage has done wonders too.

    Silviah, I am thinking of you and sending warm hugs across the country.

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  • 4BoysMama
    4BoysMama Member Posts: 25
    edited July 2016

    Maya15- I'm so glad the neurontin is working for you. Sorry if I missed this (let's blame the drugs) but can you tell me about the massage part? I'm just starting the neurontin and still in a lot of pain so I'll try anything :)

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  • SPECTER55
    SPECTER55 Member Posts: 77
    edited July 2016

    Maya15,

    I'm glad to hear that Neurontin will work, but it just takes time. My PS said she will start increasing my doses until I get relief or max out. Second fill went well today. PS is still filling slowly, on 50 ml each time. My total volume is 400ml and I still look prepubescent. My guess is most of the volume in in my armpits.

    I'm back to driving and doing my own errands. Feels good, but exhausting. I didn't realize how just doing simple things can leave me drained. Going to get some rest now. I hope everyone is doing well.

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  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited July 2016

    specters, my pain is constant. It literally feels like I'm a burn victim. I feel like I'm on fire. Absolutely nothing can touch it and a shower is torture for me. The nurse rubbed the beta dyne on me and I jumped but yet I can't feel the needle. It's weird. I'm sure the medicine will help once it gets in your system. Then maybe this will help. I'm willing to do whatever I can to stop this. Good luck. Let me know what h

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  • SPECTER55
    SPECTER55 Member Posts: 77
    edited July 2016

    Mom2fourplusmore,

    Wow, my pain isn't as bad as yours. I'm so sorry that you are so uncomfortable. Showers don't bother me, I just can't touch them. No burning, just a very unpleasant sensation it touch. 2nd fill wasn't too bad. The PS is only putting in 50 ml per fill because of my pain. I have 400 ml filled so far and I'm still flat chested, Where is the saline? Probably in my armpits.

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  • barbski60
    barbski60 Member Posts: 39
    edited July 2016

    just got another fill (my last) today - 60 in each so I'm at 500 - ugh - I didn't want to do this last one but I had a little fluid in my left breast so the physical therapist recommended (thinking that it would take care of the fluid). Hopefully I'll feel better by Friday. I'm back on pain meds (my bmx was 06-24) and was walking the dogs/doing light housework and feeling pretty good. I was going to start back with yoga next week but we'll see. I won't miss these TE's - my next surgery is DIEP flap on 09-21. Took about 3 weeks before I felt sorta of normal (when I got the drains out) - I hope the drains are taken out faster than this one (but it did make me take it easy so I guess it was good that they stayed in so long. Blessings and Quick recoveries to all.

    barb

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  • Maya15
    Maya15 Member Posts: 323
    edited July 2016

    It's funny how these fills seem to go to the armpits first instead of outward. Mine were small to start with so now with 350cc I'm actually bigger than before and it finally looks like something.

    For the massage, do gentle circular motions with fingers in the whole area (very gentle over TE though). Also stretch the skin by putting the palm of your hand on skin and gently pulling it.

    Barb I'm a week behind you with the DIEP on 9-29.

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  • silviah
    silviah Member Posts: 46
    edited July 2016

    Well - the MO just called. It's in the bone. Starting me on Tamoxifen today and putting in a referral for ovary removal. I told my husband and my youngest son. I'll be telling my oldest son this afternoon.

    I have to think about how to tell the rest of the family.

    I'm ready to face it head on!!!

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  • FUBC
    FUBC Member Posts: 137
    edited July 2016

    Gosh Silviah, much love to you. I choked up reading your words. I wish I could do something more than just pray for you.

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  • Mom2fourplusmore
    Mom2fourplusmore Member Posts: 183
    edited July 2016

    Silviah, I am so sorry. I admire your strength. This must be so difficult. I hope you can find strength in your family and those of here cheering you on

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  • tsoebbin
    tsoebbin Member Posts: 474
    edited July 2016

    Silvah.... Big hugs from us here. Hopefully the tamoxifin side effects will be gentle on you.

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  • 4BoysMama
    4BoysMama Member Posts: 25
    edited July 2016

    oh Silviah, I was wondering how that turned out and I'm so, so sorry. Sorry doesn't even seem adequate. I want to punch your cancer in the face (but only once it's out of you! Your body is getting "punched" enough). You sound so strong and that's so incredible- I just want you to know that you are not alone. All of us on this board are right there with you and if you feel down- tell us so we can send you our strength. I'll be thinking about you and if you want to, keep us posted! So much love to you and your husband and two boys.

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  • Clauclau
    Clauclau Member Posts: 88
    edited July 2016

    OMG! I stepped away for awhile to accommodate myself into my new chemotherapy reality and I returned thinking... Where was I?

    I am going to start by sending you, Silviah, lots of gentle hugs and prayers your way. You strike me as a strong person facing this thing head on, and I totally admire you for that! I also agree with what the girls had said before....so please keep us posted and allow us to cheer you up when you feel in need. 🙏💕

    A little note about me lately, I have been reduced to zero on the week of chemo, and slowly picking up on the following week. My whole head is burning and itching occasionally. No hair loss , yet!!! Sometimes I have some annoying headaches ... My new symptoms take away any uncomfortable feeling from the TE . I am actually getting used to it. My PS cancelled some filling and did very little do to me not feeling well, so I got stuck at 340cc.

    i feel better today, As you can see, this is my good week! Next week I will have my second round... Wishing myself better luck this time!

    i am having some family over today. I hope you allEnjoy your Sunday.

    Sending lots of love and blessings to all of you. 🙏



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  • SPECTER55
    SPECTER55 Member Posts: 77
    edited July 2016

    Clauclau,

    We did miss you. Sorry you are having a difficult time with chemo. Be good to yourself and take it easy. On those bad days, we're here to listen. The TEs do settle down after a while. I think the fills help. Hopefully you can get back to them. They're not fun, but they do get us closer to the finish line.

    Sending you a gentle hug today. Enjoy your family. Show them your appreciation and gratitude by letting them help.

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  • Maya15
    Maya15 Member Posts: 323
    edited July 2016

    Clauclau, nice to hear from you! The head itching and burning gets worse before it gets better. I swore I wasn't going to shave my head because I hate being bald but it was so unbearable that when the hair started coming out I went ahead and did it, and it was an immediate relief.

    I had a Herceptin/Perjeta infusion on Thursday and today I'm dealing with nausea, joint pain and headaches, all mild but annoying.

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  • Isshin1heart
    Isshin1heart Member Posts: 8
    edited July 2016

    Has anyone one ever heard of tall cell variant papillary carcinoma of breast? I have had partial mastectomy and sentinal node removal so far. Clear margins and node was clear also. Waiting on consult from MD Anderson to determine further treatment. I can find no info about this very rare type.

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  • FUBC
    FUBC Member Posts: 137
    edited August 2016

    Isshin, I never heard of it but it is great that your margins and nodes were clear.

    What do you mean by "partial mastectomy"?

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  • Clauclau
    Clauclau Member Posts: 88
    edited August 2016

    maya15, thank you for the heads up on the head issue.... I am dreading the idea of going bold, and I don't plan on shaving my head as well, but it was good to know that it could bring a relief when the scalp gets uncomfortable. I hope you feel better from your unpleasant symptoms soon😘💕🙏

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  • Clauclau
    Clauclau Member Posts: 88
    edited August 2016

    specters55, thank you for making me feel better with your kind words. Bad days really hit me with zero energy and I didn't want to do anything ( including not to open my eyes...wow, this is new to me ) but I knew I was still awake and feeling nauseated too! So I decided to wait until it passed. 😉

    For the next chemo, I will be more prepared with preventing symptoms instead of trying to use the medication as needed, like it says on the bottle and I followed I n the first time 😉. My MO prescribed me nausea/ anxiety medication and hopefully I will learn how to go around with bad days until the treatment is over in December!

    TEs are only perceived at night when it's time to sleep. Pain is really down to minimum but sleeping on my back is not good - well, at least I am sleeping in my bed with 3 or 4 pillows!

    Family day was great! I hadn't seen my nephew and niece for a awhile, and having them together brought a sense of life with people we love, if you know what a mean. I do feel blessed overall and I know I am grateful for the opportunity to always improve my life. You are all new additions to my life and I am grateful for that 😘

    I wish you all a great week !! 😘

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  • retford4
    retford4 Member Posts: 2
    edited August 2016

    Hi Lollipop

    How are you feeling n o w. I had bilateral mastectomy no reconstruction on June7th, I still have j underarm pain. I had drains in for 2 and half weeks and when they were removed I got a sernoma on both sides, I am just h opinion g this all clears up soon. One side is still draining. My underarms feel like a tight band. Hoping you are do just ng better

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  • Lolliipop
    Lolliipop Member Posts: 32
    edited August 2016

    Retford4- I am feeling a little better each week. I was lucky and got all 4 drains out after one week. I feel like I have a tight band around me as well. My mobility is getting better but still nowhere near mormal. I am supposed to start reconstruction at the end of the year and am afraid to get the TE and have to go thru the surgery and more pain. Will you be getting reconstruction? I hope you start felling better soon


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  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited August 2016

    I get my port placed on the 16th...and my first chemo on the 19th. They originally wanted to place the port next Monday, but I have deceived to test my body, and will be entered in a two day golf tournament next week. I feel a bit stiff, and likely won't have a lot of power in my shot... But getting back to my old life will be good. At least for a week! I attended a "look good feel better" session yesterday, it was fun! And lots of free goodies!

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  • Clauclau
    Clauclau Member Posts: 88
    edited August 2016

    Does that mean you don't have good veins for IV or having a port was your request?

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  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited August 2016

    AC is extremely hard on your veins... Not to mention the number of pokes one receives over a chemo protocol can be daunting.... my cancer centre offers them to whomever prefers them, and strongly recommends them for AC chemo. I am thankful it's an option!

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  • SPECTER55
    SPECTER55 Member Posts: 77
    edited August 2016

    I just wanted to let everyone know that I feel like I'm turning the corner with the mastectomy pain. Sure it's still there, especially the suture sites under the armpit. But the neuropathic pain is improving. The Neurontin is finally working. I had my 3rd fill today, the needle didn't hurt at all this time. I was so surprised. I got 75ml this time. I am now at 475ml/500ml.i think I will go to 550 or 600ml. Then we can schedule the exchange. Next week, I get to start picking out my implants. I'm finally seeing the end of this. Today was good. I hope everyone is well. Hugs my sisters

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  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited August 2016

    I'm insevere pain suddenly today. Woke up with stabbing pain at my sternum... So much so that I had to take a T3. I fear I may have dislocated an upper rib while I slept. It's excruciating.... I tried to manage all day but it's getting worse so I have a call into the plastic surgeon on call at my local hospital and am waiting to find out if they need me to come in.

    Damn....I'm so frustrated as I was doing so well.

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  • Maya15
    Maya15 Member Posts: 323
    edited August 2016

    Sorry to hear that, hope it's nothing serious. Keep us posted.

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  • Hopefloatsinyyc
    Hopefloatsinyyc Member Posts: 211
    edited August 2016

    got a call back from the PS on call. He was worried about a blood clot but after asking me a zillion questions he doesn't think that's the case. Instead he thinks I ripped the alloderm from my rib cage by pulling it funny and the stitches not being completely healed. I should have known better-after my hysterectomy I did damage with internal stitches long after the surgeon assumed they had dissolved. Apparently I'm someone who's body takes a long time or the damn things to dissolve. He said that I could come in tomorrow and see him between surgeries to confirm, but he's near certain that's what is causing the pain. Bad thing? There is nothing that can be done aside from pain meds and rest. He said it will eventually heal.

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  • tsoebbin
    tsoebbin Member Posts: 474
    edited August 2016

    Hope... Sounds painful! Hope it heals quickly.. gentle hugs to you.

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