September 2013 Chemo Group

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited January 2014

    KnightZoo, ClickChik, and BetterDay, I think we are the triple negative neoadjuvant ones here.  I seem to remember Art's wife is TN as well.  I really wish each of you the best.  There is a nice group of ladies over on the Calling All Triple Negatives thread on this site.  I've been posting there the last few weeks as well.

    Art, a friend of mine with TN just had to get her tooth pulled yesterday while on AC.  I'm sorry you wife is having issues.  I hope she can get some relief soon.

    Mamma Stewart, that is great about your node status.

    There is so much surgery and ending of chemo treatment going on right now on this thread.  It's wonderful to hear from each of you that have make it through your surgery.

    KJ....I'm glad to hear you are liking your oversized button-up shirt.  Seems like the perfect thing to be wearing.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    Thanks, Better Day. I have a consult for surgery on 1/29 and I'm told the surgery will be within a month of my last chemo (1/21). I'll have another MRI between chemo and the consult and I'm sure that at 4.9cm, it will be mastectomy recommended, vs lumpectomy. They'll be doing the right side only. Not sure about my recon options yet. 4 months after the original DX, it's all still pretty unbelievable to me.  Are you ready for surgery?

    Thanks for the info., SimpleLife. I'll take a look at that thread, too.

    Kelly

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  • knightzoo
    knightzoo Member Posts: 171
    edited January 2014

    Get well soon to all the surgeries this week!

    And yay to all those finishing chemo with me!  Last AC done!!  And continuing with my local celeb status, here is a video of my post chemo celebration FLASH MOB! :) 
    http://ow.ly/sHEct

    image

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  • knightzoo
    knightzoo Member Posts: 171
    edited January 2014

    Peacock, I'm so glad you had that time with your friend.  My best friend lost her husband a year ago, that time is so precious to her, as I'm sure you know.

    Simplelife4 - I'm a little afraid of all the negative triple negative info...I don't want to scare myself going over there!  I've just decided that no matter what my odds are, I'm going to be in the winning percent!  For all the scientist in me, I just can't research all the negative, you know?

    Scans - my MO said he'll watch bone and liver enzymes and monitor TMs, but said they can be unreliable after chemo.  He said he doesn't routinely do scans (no mammo or MRI if mastectomies), but he will if I'm worried, so I feel good about that.

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited January 2014

    Knightzoo - That is AWESOME!!!!!!!!!!!!!!  Congrats on last chemo.  

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  • audra67
    audra67 Member Posts: 521
    edited January 2014

    Thanks for all of your input on scans...

    I have appts with my plastic and breast surgeons in March so I will ask them as well.

    Also made an appointment with an OB/gyn oncologist here in Dallas!  Excited to see what she thinks about ovaries and the er/pr positive cancer and Tamoxifen  use or ovary removal??

    Seeing my regular ob/gyn this month as well.  So I hope I'm covering all areas...

    Also made apt with P.T. to help with my sentinel side stiffness...

    So I guess I'm hooked on Dr's appts now...NOT...just sortof wanting to wrap up loose ends and check every box.  Not sure I love just only doing whatever the oncologist says...

    Feeling a lot more nausea this last chemo than the ones before...and I have a little redness on face and chest ...not rash yet but very red...odd...

    Congratulations KNightzoo!  LOVE your photos!  You have a great support network it looks like

    KJ- Hope you are feeling better daily...how are those drains?? BARF! 

    Wishing you all well ! 

    We are going to WIN!!

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  • SouthernGirl1974
    SouthernGirl1974 Member Posts: 86
    edited January 2014

    I was also diagnosed with triple negative I did AC first felt my mass shrink and then gad taxol and gad an ultrasound before my last taxol and the mass was longer visible spoke with my MO regarding and she said basically we no longer see the cancer fir me I still ores fir double masectomy which I am scheduled on 1/30 fir DIEP and then I will do radiation as I had one positive node. We are survivors ladies we will win remember stay positive and think positive at all times ((((hugs))))

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  • knightzoo
    knightzoo Member Posts: 171
    edited January 2014

    Here's another link to the dance - I think this one works on mobile devices.  Keep on fighting everyone - WE GOT THIS!  Like I said at the end of the video - no more tears!  Onward.

    http://vimeo.com/84436750

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  • SouthernGirl1974
    SouthernGirl1974 Member Posts: 86
    edited January 2014

    very nice 

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited January 2014

    Knightszoo.....wow!  What wonderful friends you have.  Very cool.

    Southerngirl thanks for reminding me that you have TNBC as well.

    I got a call from a woman last night that is a three year survivor of TNBC. She had the same MO and SO that I have and lives about an hour away from me.

     I also am friends with  a woman that is a 5 year suvivor of TNBC.  I met her through Vanderbilt's Hope Connection. There are a lot of survivors out there.  Each time I hear of one, it makes me happy.

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    knight zoo, video is awesome!!

    My hematocrit and blood pressure were low, so they kept me another night. Hoping it improves this morning and I will be home before noon. The drains are a pain. Most are starting to clear up, but one is a big dropper and still very red.  

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  • mercedes60
    mercedes60 Member Posts: 171
    edited January 2014

    knightzoo, awesome, great support love your outfit too.  I guess you have a re-coop period before surgery, rest well, im not far behind you, i have 5 more taxols. Then surgery. 

    Kj hope you are doing better today.

    Cheryl

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  • BetterDay
    BetterDay Member Posts: 116
    edited January 2014

    Knightzoo, that is an awesome video!  Congrats on finishing!  Clickchick, on getting ready for surgery, I'm trying to read all I can on these boards and elsewhere. Any of the other ladies on here who have already had surgery have any must-do or must-not-do tips for those of us who are gearing up for it?  KJ, hope you go home soon!

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  • warrior70
    warrior70 Member Posts: 144
    edited January 2014

    Knightzoo, congratulations! What a way to celebrate!  I have 12 days to go to my last Taxol...and lots of fun things to fill in the time!  

    KJ, good on ya getting through surgery!  Rock that button down!  

    Mercedes/Cheryl: Keep counting down those Taxols!  The game is TOMORROW!  Go Niners!

    SImplelife, remember you are an individual, NOT a statistic.  That's what I remind myself of when I get scared...it works (sometimes.)

    Southerngirl, I don't know if you got my response to your PM, but I bet we'll be in rads at the same time.  WE ARE CLAIMING NED!!!

    Audra,best wishes with PS stuff.  I have to get some fills before rads, gotta get on that this week.

    Click CHick, I agree that it's very hard to wrap your mind around BC.  (hug)

    MamaStewart, good news on nodes!

    As for me...?  Still really don't have the post-active treatment schedule down (i.e., scans, etc.); I'm just taking this one treatment at a time now.  Went to my rads consult Thursday and I really like the doc and the rads staff!  They're saying 25 sessions without boosts; and seeing as I'm pale and thin-skinned, the least amount that will get the job done sounds GREAT!  

    AS for right now, I feel really good.  The Decadron seems to have worn off from Thursday, my energy is good, we're going out for dinner with friends tonight and I'm planning to do a pretty intense clean-up in the house today.  My fingernails are totally OK; there are 2 toenails on my left foot that seem a little hinky...but my big toenail was looking a little dicey last summer, before all of this started.  I have (I guess) about a fourth of an inch of black fuzz over my scalp and my body hair is coming back with a vengeance ( although it's all blond right now).  Courtesy of Eastern European heritage, my eyebrows have thinned significantly but are hanging on, though my lashes are MIA (some little hairs growing back though).  Just the countdown is keeping me going...best wishes to all of you!

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  • lighthouselady
    lighthouselady Member Posts: 752
    edited January 2014

    KJ is going home!  Yay!  

    I WANT MY DRAINS OUT!!!!!!!!!!!!!!!!!!  I know people who have had to deal with drains a lot longer than I have (2 weeks so far for me) but these last two are hurting me.  Ugh.  

    My mom left today.  I'm sad.  Usually after about a week we start getting on each other's nerves, but she was here for two weeks and it was WONDERFUL!  She did all of my usual "mom" duties and helped hubby take care of me, and it was just so nice to have her company.  <sigh>  I'm actually alone in the house for the first time since my surgery.  LOL

    My eyebrows are coming in fast now.... they're very short but I almost don't have to pencil anything in.  That's nice, because I'm not a big make-up person, so having to use so much make-up takes me forever to get ready!!!  My eyelashes are there, too, but still very short.  My mom kept saying how she couldn't believe how fast my hair is coming in.... I'm like, yeah, it seems fast to YOU because you're not the one waiting for it to grow.  LOL  It is very noticeable now, but nowhere near where I have enough to consider it HAIR.  Body hair on the other hand... yeah... that's back.  What fun. 

    Hope everyone is doing well and enjoying the weekend.  I can't believe I am 6 weeks PFC and 2 weeks post-surgery.  Time flies when you're having fun.  Ha!  

    I have my rads consult on Feb 6th.  Hopefully I can get a couple of TE fills in before then, and maybe another one or two before he wants me to start.  I know I have to be completely healed and able to lift my arms over my head, neither of which is happening right now, so I have some time.  I think.  I hope.  PS says I have to be completely expanded before rads.

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  • alfranco
    alfranco Member Posts: 200
    edited January 2014

    Knightzoo- awesome video, you are an inspiration and have great friends.

    Kj hope you are doing better today. 


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  • hockeymommy
    hockeymommy Member Posts: 77
    edited January 2014

    hi ladies, I am still recovering well from surgery! The drain on the other hand is driving me nuts!!! Ahhh...lol..imgot a phone call yesterday from the genetics dr. I am brca 1 positive. I am kind of in shock to tell you the truth, they thought for sure I was going to be negative. I have a lot of mixed emotions on this and how it affects my kids. But one thing I know is that I am so glad I just did the prophylactic mastectomy, and have the full hysterectomy on Feb 20th!! KJ hope you are doing well!! Congrats to all on finishing chemo!!!

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  • audra67
    audra67 Member Posts: 521
    edited January 2014

    knightzoo-


    LOVED the video, made me teary.  That was my song too when had surgeries and just found out diagnosis!  LOVE it!  We are on the road to recovery and being the 'new and improved' us!  Can I get an AMEN?!!!

    kj- hope you get to spring from the hospital today and recover and rest at home. 

    lighthouse- hope you get those drains out they are such an annoyance!!

    Wishing you surgery girls a speedy recovery and relaxing one, you've deserved it!


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  • alfranco
    alfranco Member Posts: 200
    edited January 2014

    don't know if it is tamoxifen. but I get really hot when I am trying to sleep, start sweating and then I get really bad chills. I don't remember me sweating this bad, ever.

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    am home now.  The hematocrit didn't improve, but the #2 drain slowed down. So, she let me go home. 

    Am pretty amazed at the dexterity of my arms and the lack of pain in my chest. The On-Q pumps must really be effective. Also surprised that the view down my chest doesn't bother me as much as I thought it would. Have already seen it both bandaged and unbandaged. 

    Thanks for everyone's support and prayers. We are warriors and now sure have the scars to prove it!!

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited January 2014

    Hockeymom, I'm sorry to hear about your BRCA status.  It is a shock, but it's good to know the information so you can take the steps you need to take.  I had the test and was negative, but I felt it was important to know if it had been positive.  In the long run, your children may be saved by having that knowledge.  They may not have the mutation as you well know, but they will be informed and prepared if they need to be.  You are doing all the right things to take care of yourself.

    Hugs,

    Kay

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  • alfranco
    alfranco Member Posts: 200
    edited January 2014

    Hockeymom I agree with simplelife.  I too fear for what my kids might go thru. There was no cancer In my family, when I got diagnosed a month later my mother got diagnosed too. I don't carry the brca gene. My mother we don't know,her insurance would not cover  the test. I pray our children don't go thru all of this. I tell my daughter she needs to be careful and keep a close eye on her breasts.  I HATE CANCER.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    Alfranco -- likely you are having hot flashes or night sweats due to tamoxifen. I started tamoxifen about a week after you did.  I am having some sweating at night but its not too bad!  I'm also taking effexor which is supposed to help with hot flashes.  

    Lighthouselady -  I hated the drains more than anything. So annoying and painful. Hope yours can come out soon!

    Kj - welcome home!

    Hockeymommy-  hope you are feeling better and get your drains out soon too.  The positive  BRCA result is a disappointment but all your treatment decisions are really minimizing your future risk! 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    Hi all, trying hard to both rest and do all the exercising I've been told to do.  feeling mostly well occasionally not.  best wishes to all dealing with surgery and rads and the rest.  real test for me is the path report at end of this week. Thank you! V

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  • warrior70
    warrior70 Member Posts: 144
    edited January 2014

    Hockeymommy, BRCA was not the result you wanted, but you are doing all the right things to minimize your risk.  I still have to take the test; there's a lot of cancer in my family.  Best wishes.

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  • knightzoo
    knightzoo Member Posts: 171
    edited January 2014

    hockeymommy, sorry about your news.  I'm still fighting with my insurance to get the test paid for.  I want to know for my family too.  Hope you are recovering from surgery ok.

    KJ, glad you got to go home, take care!  HVV, good job on the exercise!

    LHL - 2 weeks cant get arm up to 90 degrees?  I'm hoping to start rads three weeks post op.  Ugh.  Also, how are stairs for you?  I'm trying to figure out where to put the recliner I'll be sleeping in.  I was thinking the basement for quiet, but maybe it's best in my bedroom on the main level?  Hope you can remove the drains soon.

    I haven't even started tamoxifen and have night sweats.  Ugh.

    My husband leaves town tomorrow for work and my mom is going to stay here as I hit the low days after my final AC.  I'm too tired to manage 4 kids by myself those days.  Last time though!

    Hang in there all, love you all and so glad we can be here to support and share during this journey.

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  • Miss_Mama_Bear
    Miss_Mama_Bear Member Posts: 252
    edited January 2014

    LHL: It has really been two weeks since your surgery?! Wow time does fly. Where have I been? I am glad you are doing okay and hope you get your drains out soon.

    KJ: glad you are home and hope you are comfortable.

    You guys make me feel like a wimp. I am feeling okay today but it hasn't been great. I am getting a taste for what life after mastectomy must be like though because I have a very large spot on my breast with no feeling at all. I kind of wish it all felt like that but it is so very weird! My underarm is the worst. It is so tender and I don't think I'll ever be able to lift my arm above my head again. My entire breast is black and blue all the way down to where the the band of my bra is and looks horrible! It hurts all the way over to my right breast. I am just blown away with how much pain I am in and how difficult the recovery is. I wasn't expecting this at all. I guess I should have researched it a bit more instead of just focusing on mastectomies. I could have used some help lol. My oldest had to sleep in the living room last night and again tonight because I cant' get him up into his chair to take him into his room. I am not even going to try! The swelling is starting to go down on my side; I am glad, I was thinking I might have to have it drained. Maybe the BMX will be a bit easier since I won't have to deal with SNB? A girl can hope, right? Official pathology report tomorrow! If no rads then I better start preparing for surgery again in the next few weeks; my deadline (8 weeks after chemo) would be February 12th. I am so glad my sister will be coming down for my BMX! And she might be able to stay for a few weeks! School starts Tuesday, although unofficially on the 14th. I wish I could have started then and got a jump on stuff but unfortunately the school screwed up my fin aid and I still haven't gotten my books yet. An hour round trip drive with two kiddos is on the agenda Tuesday. I am glad to put it off, as I picked my daughter up from school Friday and driving SUCKS! Still, I will mark it all down as experience, and knowing a little bit what to expect with the BMX (although I am sure the pain will be 100x worse!) I'm guessing 4 days out from a SNB/LX is comparable to 2 weeks out from a BMX in some regards? I am just trying to prepare for something that I probably cannot prepare for lol. I hope everyone is well! I am still having issues reading for some reason. It is like the few days after chemo, I am not sure why I am having it now?

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    For those of you looking at surgery soon, I highly recommend talking to your surgeon about the ON-Q pumps for post-surgery pain management. I think they are the reason I am feeling so good. 

    http://www.iflo.com/prod_onq_classic.php

    Yes, it is two more lines to deal with, but they are awesome and worth it. Also, if you have a good hiking fanny pack, I have found it very comfy to just put all my drains/pumps in the same fanny pack. Then it is easy when sitting, walking, taking a sponge bath, and when I empty the drains. 

    I am doing so much better than I thought I would be. Have to work hard to not work hard. ;-)  Am resting and taking it easy, but feel like I could really take on some chores (I am not, so don't worry).  Might even go back to work (telecommuting part time) a week early, if recovery keeps up such a good pace. 

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited January 2014

    HVV,  I hope your pathology report is good. I am anxious about that too.  But I know that we are warriors and if we can get through the past few months we can get through anything!!

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited January 2014

    KJ, that is great that your pain is being so well controlled.

    Mama, I am sorry to hear that you are having so much pain.  I hope it gets better soon.

    Waiting for path results is hard.  I'm wishing everyone good news.

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