Calling all TNs

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  • Stupidboob
    Stupidboob Member Posts: 345
    edited June 2013

    please tell me anything I need ta ask the radiologist

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited June 2013

    Hey StupidBoob - Congrats on your exciting news!  So very happy for you!

    I would definitely (at the very least) call the imaging place and ask what type of machine you were on, and find out the one you were on previously, if it was at a different facility.  Then see if that gives you some clarity.  If not, call back to your Oncologist (is he the one that called you yesterday) and tell him that you are concerned it did not get a good read, and explain how this process was different.  If you are able to reach the Radiologist, then I would also call him.  I would ask why have you needed to remove it in the past, but not this time?  Ask him this open-ended question, as then he will have to not only address / confirm that they did it correctly this time, but he will also have to answer why it was not required before.  This way, you'll get double confirmation on why the procedure went differently this time.  Why was it different this time, and why was the last time different?

    Please let us know what you find out.

    I'm so glad that all of us are SO Proactive!  This is the key to managing a great treatment plan and follow-up.  It's amazing at how one does have to be their own advocate.

    I think along the lines of you as well, and would want more information about this.  Now, to put you at ease, I'm sure the Doctor who called you had the specifics on the report, the type of machine, the type of process that it did, etc. It's usually summarized somewhere on there, so if he said it was clear, than I truly 100% believe that it was done at the highest surveillance. 

    Talk to you soon!  :)

  • OBXK
    OBXK Member Posts: 791
    edited June 2013

    Bak- I love your stories. Sounds like you have a good life with all your four footed friends. Go buy a copy of High Times - maybe you can get some growing tips. If all else fails, try growing it in water, in your closet, with a grow light ;)



    Annie - sorry the winter is so hard on you. Your guest room awaits.



    Had my scan to see if the Xeloda is working today. Hope to get the results soon.



    Wishing you well...

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2013

    OBXK let us know the minute you get your results. I will be chewing my fingernails until then.  Hoping all is well and the Xeloda has worked. Saying lots of prayers.  

  • slowloris
    slowloris Member Posts: 128
    edited June 2013

    Karen,  praying for good results for you. I see you had carbo and gemzar 1st. Did you get any help from that combo at all? That was what my original mo wanted me on with the recurrence, but I went with xeloda that my 2nd opinion suggested. tomorrow will be my last pill of my 2nd round, 2nd week. I have some moderate pain in toes, balls of feet , and heels. No peeling or blisters, just hard to put pressure on them (and I stand on my feet all day at work). Ibuprofen seems to help until I get home and put my feet up. Do you also have foot pain? My dose is 1800 mg in am, 1650 in am. The np said that was a high dose and was surprised I was tolerating it so well. I tolerated AC well also, it was just the taxol that damn near killed me.

    Cocker,  Were those clouds giving you the finger? I had to laugh at that... thunderstorms are near my home now, maybe I should go outside and "read" my clouds.  Too funny!!!

    I had a dream last night, was visited by my deceased FIL. I got no direct vision as to the course my life will take, but I somehow feel much more at peace now. I do sometimes get premonitions that come true, so hopefully this peace will last no matter what lies ahead for me.

    Storms are getting closer.... Have a good night everyone.

  • Stupidboob
    Stupidboob Member Posts: 345
    edited June 2013

    Thanks Debra and I am definately going to ask.     I have a call into the Radiation Oncologist and I also ask my surgeons nurse if she knew.   She did not but she said she would think it would be ok since women who have implants are not ask to remove them.  I talked to the ACS and they did not really know.   My oncologist said that she did not think they would have let me wear it if they were not sure.   I think tomorrow I am just going to call the guys who did the test and ask them to tell me the theory behind it all.   They were super nice guys

  • Stupidboob
    Stupidboob Member Posts: 345
    edited June 2013

    Ladies a friend that I made during chemo is on Anastrozole and wants to know if there is any tricks to help her with side-effects.   I told her I would ask you all and see if anyone has taken it or knows about it.   Any words of advice for her?

  • OBXK
    OBXK Member Posts: 791
    edited June 2013

    Annie my friend - I do feel your love. do you skype? Maybe we can have a video chat.



    Slowloris - I had a regression while doing carbo/gemzar on my first 3 month scan. At the six month scan, I was back where I started. I am on my 6th round of Xeloda. I have no horrible side effects I take 2000mg twice a day. The only drugs I have left to try cause neuropathy, I'm not willing to go there again. I hope you find one that works for you.



    Stupidnoob- run the drug through the site search. You may find some info. I hope it is a gentle drug for your friend.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2013

    OBXK from the Outer Banks.  Every bit of my love goes to you girl and I am hoping and hoping that everything is ok for you.  Yep I can set up skype on here. Can you get Noha or Carson to do it for you. I would just love to hear your voice it would be wonderful even if I can't see you in the flesh.

    Slowloris yep those fingers must have been for me lol.  You say you sometimes have premonitions can you see me in them.  I don't mind if they are rude or funny. 

    Had a boring day at work today.  Sometimes I think I am just over this job.  It's cold and miserable and I didn't feel like working but had to make an effort (when the manager was around anyway).   Will be getting  my lymphoedema sleeve soon, yippee.  What a fabulous piece of clothing that is going to be. I wonder if I can request diamonds or pretty lace around the sleeve bit lol.  The only trouble is I understand they are hard to pull on and my old fellar leaves way before I get up in the morning so I can see me struggling with it or leaving the bleeding thing off. I sure aint gonna wear it in the summer but in the meantime it may keep me warmer!!  I suppose I could ask for knickers and bra to match it.          

  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2013

    Annie the sleeves are tough at first for sure...but now when I put one on it is like a second skin. Look for the sleeve donner...not sure correct name of it...to help you get it on the arm. I have several in different colors to match my outfit and mood. They are all "off the shelf" but my glove was custom made. Wishing you well with it



    Karen---praying for you



    Maggie

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited June 2013

    stupidboob...I have been on Anastrozole for 18 months now and in the beginning I took the once a day Claritin for the aches and pains. I took it (altho my MO didn't advise it) for 3 months. I had no pain so I stopped taking it.

    The Claritin is the 24 hour pill WITHOUT the decongestant...just the antihistime.

    I know of many women that had success with it...it is used also when taking Neulasta during chemo. I figured if it worked for that, I would try it with Anastrozole. I am starting to have a little bit of stiffness in my fingers but I am almost 70 so it is likely arthritis!

    For anyone wondering why I am taking Anastrozole when I am TN...I am 2%  ER+ so the MO insisted I take it for at least 2 years...so far, so good!

  • ALHusband
    ALHusband Member Posts: 344
    edited June 2013

    Schatzi when you say your MO didn't advise it...do you mean he/she advised against it (as in he/she told you not to take it) or he/she just didn't make the recommendation? I'm curious because I'm trying to figure out if my wife should be taking it or not because she's having bone/joint pain which we believe to be from her Taxol.

  • OBXK
    OBXK Member Posts: 791
    edited June 2013

    Drove back to the hospital and picked up my scan report. It showed a progression Yell Well, I'll just have to concentrate on doing what I want to do.

  • sweetpickle
    sweetpickle Member Posts: 749
    edited June 2013

    Oh no! So sorry Karen.

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited June 2013

    ALHusband...he just thot I was crazy and said "you don't need to take that". He pooh poohed it with the Neulasta too and it worked wonders for many of us. That was just for the Anastrozole.

    He said after he does mention it to his patients now that are taking Neulasta. I guess they learn from us too.

    I can't see it would do any harm with Taxol....did they recommend any pain meds at all?

    Is your wife all done her Taxol? Does she have any neuropathy in her fingers or toes? I had 12 weekly Taxols and found them to be uneventful other than the time they took to have the IVs. Is she getting the DD Taxol?

    It all makes a different for SEs I think. I know some get their fingers iced during the IV but they were Dose Dense.

    Will you wife be taking antihormones after TX? Most TNs don't. I dunno why I am taking it but my MO insisted.

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited June 2013

    OBXK.....I am so sorry to hear about your report. Hang in there and try not to despair. I guess to carry on with your normal routine will be the best medicine.

    I wish some better news for you next time Undecided

  • ALHusband
    ALHusband Member Posts: 344
    edited June 2013

    Schatzi they didn't recommend any pain meds because she's already on them because she had major back surgery prior to being diagnosed with TNBC. They just told her to keep taking the ones she's already on. My wife, Kathy, just finished her 6th of 12 weekly Taxols along with Cisplatin. So, she's halfway done. She is starting to get a little bit of neuropathy but nothing overwhelming. The achy bones and joints are what's bothering her most. Even still, she has not missed even a day's work. Being TN, I don't think she'll be on any targeted hormone (antihormone) therapies following Tx but she will most likely be doing radiation. You indicate in your "signature" that you are ER+. That's probably why you're taking targeted therapy.

  • ALHusband
    ALHusband Member Posts: 344
    edited June 2013

    I wonder why Cisplatin is not a choice under Chemotherapy when you create your profile. I see that Carboplatin is, but not Cisplatin. I know they're similar. I checked Carboplatin and have to edit it when I post.

  • JAN69
    JAN69 Member Posts: 947
    edited June 2013

    Oh Karen, My heart is breaking for you and your family.  I'm so sorry that you have to face another scary situation.  I'm making a big batch of peach jam today and it is dedicated to you, my dear!  Peaches are so sweet, just like you.  I'm sending you big hugs and wishes for a fun summer with your sons and husband.

  • schatzi14
    schatzi14 Member Posts: 1,647
    edited June 2013

    ALHusband

    I am basically TN because I am only 2% ER+....my MO says "those are only words"...cold comfort. He believes at even 2%, it is worth a try so that's why I am taking Arimidex. He says I passed the first year so why change things even tho I complain about my hair loss and bone loss?

    We will see what the next mammo shows in August. I put ER+ just because at the time, I didn't know I was TN.

    I never saw a path report until this year and just did as I was told! He did say if I insist on stopping it because of SEs, he would say OK but I figure if it aint broken, don't fix it!Laughing

  • NavyMom
    NavyMom Member Posts: 1,099
    edited June 2013

    OBXK: So sorry for your news.  Holding you close to my heart.

  • OBXK
    OBXK Member Posts: 791
    edited June 2013

    Thanks friends.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2013

    Karen I feel sick to my stomach with your news.  See my PM.  I cannot accept this. We have just got to make a plan.  There must be something we can do.

    All you ladies on here, help me out. You know the doctors in the USA and I don't. What else can Karen try.  There must be something. 

    LUV where are you, we need you. Do you have any suggestions for our Karen.   I can't keep crying and doing nothing it's not helping anyone.    

  • sweetpickle
    sweetpickle Member Posts: 749
    edited June 2013

    Karen,



    I see that you are in NC like I am, have you thought about going to Chapel Hill? One of the leading triple neg researchers is there, I forget her name but I can look it up.



    Heather

  • sweetpickle
    sweetpickle Member Posts: 749
    edited June 2013

    Her name is Lisa Carey.

  • Luah
    Luah Member Posts: 1,541
    edited June 2013

    Oh Karen, my heart goes out to you. So very sorry to hear your news. Surely, there's something else to try? Hoping you, your family and your docs can regroup and find a path forward. A big cyber hug to you.  

  • Adjtoth
    Adjtoth Member Posts: 6
    edited June 2013

    Hi ladies! Was wondering if anyone could give me some insight on my current situation. I was diagnosed with idc at my first ultrasound for my pregnancy. I started chemo on November 1, 2012 in my 2nd trimester and delivered a perfect, healthy baby boy at 37 weeks on April 17, 2013. Had my sentinel node biopsy on May 20 (all nodes clear) and my double mastectomy with reconstruction on May 28. Pathology reports came back that I had a TOTAL pathological complete response meaning there was nothing in there. No dead tumor, nothing! Doctor said this was the best possible scenario and doesn't happen too often, but now they are telling me I don't need radiation. I just assumed I would be getting radiation because I am TN. Getting a second opinion from the Cleveland Clinic, but just curious as to what your experiences were with radiation/ no radiation. My rad onc said that in my case the risks outweigh the benefits.

  • sweetpickle
    sweetpickle Member Posts: 749
    edited June 2013

    Adjtoth- I had the same thing happen, got a PCR and we did surgery with no radiation.

    Edited to add: Huge congrats on your baby! :-)
  • Stupidboob
    Stupidboob Member Posts: 345
    edited June 2013

    Karen I am SO SORRY..........Cry

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