TRIPLE POSITIVE GROUP

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  • goutlaw
    goutlaw Posts: 268

    o yea did anyone get scans after radiation on breast to make sure nothing was seen? My doctor didnt wanna give me a scan or Mri but radiation doctor said cat scan? just I wanna make sure radiation zapped it all? I did have clear margins? what do u think

  • goutlaw
    goutlaw Posts: 268

    & When do u count remission day? After radiation or next clear scan? 

  • robinlk
    robinlk Posts: 363

    I am counting remission from the day of my first surgery. My second surgery showed NED in remaining tissue. All these treatments are for any strays that may have been out there but were too small to be seen on my PETscan. The only areas with uptake were removed during first surgery. 

    Happy your surgery went well! 

    Karen, everything crossed here for you. 

    Gigi, your optimal weight at 5'8" is mine at 5' 3.5"....that is not where I am at the moment, but hoping to see those numbers again someday. 

  • GIGIF
    GIGIF Posts: 36

    Thanks for the responses.  I had hysterectomy at 26, but they left my ovaries.  Yes menopausal, I'm 53 now.  Onc is going to do bloodwork next visit and check my estrodial levels and thyroid too. Just feel like I am bloated all the time, UGH!!  Love catching up with everyone's news and glad to see the newbies that have joined us.  I'm going to try to wean off the effexor the next couple of weeks.  I am only taking one every other day instead of every day.  Hoping my "power surges"  stay with in check. 

    Hate that we all have to put up with this sucky crap, but it's definitely better than the alternative !!!

  • camillegal
    camillegal Posts: 15,710

    I'm always reading and catching up on everyone--goutlaw all sounds good.

    Welcome newbies u r in a great place for info and TLC. drink lots of water--that's about all I know but I do hang around.

  • lago
    lago Posts: 11,653

    GIGIF I was 49 when diagnosed and peri-menopause. Last period 2 weeks prior to chemo. Given my age and family history my onc felt my cycles were not coming back. My estrodial levels were checked for the first 5 months I was on Anastrozole. Never did take Tamoxifen. I too am 53 now.

  • susanhg123
    susanhg123 Posts: 257

    I had PET scans, Bone scans, Brain scans, MUGA scans, ECHOs, Chest CTs, ABD CTs, and probably more I cannot remember after my chemo, surgeries, and rads. I have told my MO, RO, and cardiologist no more. They were chasing ghost poop. 

  • linda505
    linda505 Posts: 395

    susanhg - love that..."ghost poop"!  But happy that they didn't find any!

  • dancetrancer
    dancetrancer Posts: 2,461

    I had a PET scan prior to treatment, but not post.  I don't want one.  I don't want the additional radiation.  I had to have a CAT of my lungs to rule out a possible PE after chemo, and also had to have a CAT of my upper and lower GI to rule out a lesion on my liver that was seen "incidentally" when they did my yearly breast MRI.  All benign.  That's more than enough radiation for me.  I don't want to cause any new cancers trying to find one that (hopefully) isn't there.  I figure if I get symptoms THEN I will request something.  Apparently finding it early doesn't make any difference in survival anyways, so I am not going to do the "ghost poop" chase either, lol!  

  • dancetrancer
    dancetrancer Posts: 2,461

    P.S.  the only reason I get a yearly mammo and breast MRI on my reconstructed breasts is because I had multiple close margins anteriorly and posteriorly after BMX.  Otherwise I would not have any post-BMX breast studies done, just like everyone else. 

  • geewhiz
    geewhiz Posts: 671

    Ghost poop! HAHAHAHA!!!! I love that!

    I GiGiF...I have put on a few pounds out of nowhere too. I am 47 (I had to actually just calculate that from my birth year) and 5'8 and am usually about 135. Post chemo I put on about 7-10 lbs, and nothing has changed about my diet or exercise. I did add tamoxifen into the mix and my onc was adamant that it was not the source of my weight gain. It however is the only wildcard in the mix besides just being in chemopause.I don't worry too much about the weight, but I know EXACTLY what you are saying...my body just doesn't feel right at above 140. I feel sluggish somehow too.

  • geewhiz
    geewhiz Posts: 671

    Dancetrancer - I agree about the additional rads. I even avoid the scanners at the airports! My onc doesn't do annual scans of any sort other than tumor markers. I actually didn't even know he was doing those until the nurse mentioned it.

    On a seperate issue...remember our armpit incisions? I griped like crazy --but mine are actually virtually invisible now. What about you? I hope all is well!

  • dancetrancer
    dancetrancer Posts: 2,461

    Geewhiz - do you mean the armpit incision for putting the implant in/out?  I never had an implant, so he didn't do that incision on me.  I had fat grafting immediately at the time of MX.  I have a small incision from the SNB, that is virtually invisible, and even my MX scar is starting to fade (although it will never look as good as the SNB scar).  My port scar, though - it is still just as red and thick as ever.  So weird how I scar differently depending on where the scar is on my body.  Fortunately most of my clothes cover my port scar and when they don't...I have a nice little booklet of awesome temporary tattoos I use to cover it.  Actually quite fun to put one of those tattoos on and go out! I look so baaad*ss.  Ha ha.  So not my personality, so it is fun. 

  • karenrm
    karenrm Posts: 69

    Home from surgery. Went better than expected...cleaned up nasal polys, cheek sinus problem turned out to be accumulated crud from repeated infections. Thanks everyone for your prayers and good vibes. Now I need a nap.... karen

  • lago
    lago Posts: 11,653

    Yay Karenrm!!! Happy Dance

  • specialk
    specialk Posts: 9,299

    Karen - yay! Take that nap!

  • moonflwr912
    moonflwr912 Posts: 5,945

    Yay Karen. 

    Specualk, did your PS say anything?

  • geewhiz
    geewhiz Posts: 671

    awesome Karen!!!

    Dance I think I confused you with someone else who had pm'd me a long time ago....

    Chemo - brain, ya know!!

    Loopy

  • specialk
    specialk Posts: 9,299

    moon - hate to say this - stitches are out, have a small area on one end that is not healing well.  He is giving it one week.  If it is not healed I lose the left side of recon for the summer.

  • linda505
    linda505 Posts: 395

    Sending all my healing vibes to you SpecialK!!!

    Yay Karen!!

    Got my 2nd opinion from Moffitt today after a very nice coffee with SpecialK -(pic in March surgery thread).  Moffitt has recommended TCH instead of ACTH and I am pleased with that recommendation - I will be talking to my MO's office tomorrow to make sure that we get that regime switched.  I feel very relieved with this recommendation.

  • karenrm
    karenrm Posts: 69

    Hi, y'all. Had the surgery this morning. All went well. Had polyp debris (left over from biopsy) cleared out and maxillary (cheek) sinus cleaned out. Turns out that was "concretions" (hardened debris) from frequent sinus infection and inflammation and not polyps. I'm not sure if it was sent for pathology, but seems to be good news pending possible pathology results. Maxillary sinus was accessed through an incision inside my upper lip, so that area is sore and swollen, and my nose bleeds occasionally, but otherwise I'm doing quite well. Much better news than the original diagnosis!

    Thanks everyone for your prayers and good thoughts. I believe they did wonders for me...    karen 

  • lago
    lago Posts: 11,653

    linda505 I felt the same way. I was ready to argue with my MO that I wanted TCH but  that's what she recommended. 

  • moonflwr912
    moonflwr912 Posts: 5,945

    karen, I'm so happy for you that it was way better than you thought. 

    Linda just knowing the plan always helped me. Glad you got the tx you wanted. 

    Specialk. Sh*t, f*ck, h*ll, d*mn. No. Just no.  I'll still keep my fingers crossed for you maybe it will heal. Just possibly maybe....

  • camillegal
    camillegal Posts: 15,710

    I'm behind as usual ===Karen good to hear--now rest and relax so you can heal.

    SpecialK I'm sorry, I hope it works out for u.

  • bren58
    bren58 Posts: 688

    karen, glad you are home and resting and that the procedure got everything cleaned out.

    Linda, glad you are comfortable with your decision for tx. I know once I knew what I was doing regarding tx, I felt at peace with it, even though I was not looking forward to it.

    SpecialK, I am sorry you are having so many issues with healing! What a long road this has been. Praying that that spot will heal in the next week and give you no more problems!

  • specialk
    specialk Posts: 9,299

    Thanks everyone!  Moon - I said all those words too.....

  • Nunci
    Nunci Posts: 17

    Has anyone had allergic reaction occur after the 5th round of taxotere/carboplatin/herceptin 12 days after the last treatment? Brown spots on the bottom of my feet, horrible itching, red splotches all over body, and swollen! Called my MO and said I was having reaction to chemo-- put me on steroids and Benadryl  (like I need something else to put in my body)   Symptoms are much better today but is this normal. I have one more treatment to go and really worried that my body can't take much more of this. 

  • specialk
    specialk Posts: 9,299

    I started having allergic reaction issues after #3, and had to switch from only having steroids on the day of infusion to having them starting the day before and continuing until two days afterward, but I had Benadryl and Tylenol as pre-meds throughout the course of chemo.  I tend to be an allergic person, and was not that surprised when this happened. I had particular problems when I ventured outside as a number of these drugs can cause a photosensitive rash reaction.  Because you had problems with the bottoms of your feet I wonder about hand and foot - a relatively common SE.  Here is a link:

    http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/hand-foot-syndrome/bgp-20056309


  • Nunci
    Nunci Posts: 17

    Special K, I read about the hand and foot side effect.  I though I had that yesterday. My hands are fine, my feet are fine now except they look like an old man's bald held with brown spots all over it. Hehehehe! The steroids really worked. So, did the reaction get worse or stay controlled with your next treatments? 

  • specialk
    specialk Posts: 9,299

    nunci - mine stayed controlled, and actually my last chemo was my easiest in terms of SE.  Hoping the same for you!  Hang in there and this will soon be over!