Calling all TNs

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

    Phyllis: Sorry you're dealing with this - but just the one node is a good result. I can't help with your question, but hopefully someone will come along soon to answer it. One of the ladies here has posted to a medical center site - I think it is John Hopkins, where you can get online answers from one of their oncs.  

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  • Hopex3
    Hopex3 Member Posts: 397
    edited April 2013

    Phyllis...I'm not any help either except praying for you! One node out of 46 is great news. Your doctor seems to be really proactive with this! I would trust him. Hugs to you!

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  • gillyone
    gillyone Member Posts: 1,727
    edited April 2013

    Thinking of you Phyllis.

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

    Thinking of you, Phyllis.   Hugs.

    Intersting update on my hypothyroid issue.  I called PCP office yesterday and requested further blood work and they obliged me.  I got to the lab and one of the tests I requested was not on the order form.  The lab called the PCP and got it added on.  I get a call from PCP's nurse this am telling me that ALL the blood work came back NORMAL.  Even the repeat TSH came back normal.  New result is 2.2 and abnormal result from 2 weeks ago was 5.7.   Hmmmmm.   And to think that medication was ordered and I would have already been taking it had I not been proactive for my own care.   Hmmmmm.  Another good example to get educated, ask questions and ask some more questions.  Be your own best advocate.  Also, when blood was drawn 2 weeks ago, I was very ill with cough and sinus congestion.  I asked at the time, if being sick would have any influence and was told no.  So there ya have it.

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  • adagio
    adagio Member Posts: 982
    edited April 2013

    NavyMom - that is so interesting about your blood test. Perhaps this might suggest that not all blood tests are reliable!! I would guess that your cold could possibly impact on the blood rsult - but who knows!! Lucky for you that you didn't go on the medication. We really do have to speak out for ourselves all of the time!! Good lesson in your story for us.

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

    I am trying hard to understand all these TN DXs...It never occurred to me 18 months ago to even question the % of the ER+. Just lately, after listening to other gals, did I even consider perhaps I was taking Anastrozole for nothing. At the time, my MO was VERY insistent that I take it.

    When I questioned him last week, he left it up to me. I am reading all your posts with interest.

    Thanks for being so helpful and I wish you all good health and the best possible results. :D

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  • Sandlake
    Sandlake Member Posts: 211
    edited April 2013

    Phyllis,  I like the approach your MO is taking with your treatments.  Sending you tons of hugs full of strength and keeping you in my prayers!

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  • teresa008
    teresa008 Member Posts: 55
    edited April 2013

    schatzi14, I'm considering taking one of the hormone therapies after my chemo is done and I only have 1% estrogen positive! I NEVER want to deal with this again and I'm going to do whatever I have to to try to make sure it doesn't. I am very realistic and I know that, even after all this, it may still come back somewhere on my body, but I want to do everything they offer me to try to help it not happen. Just my opinion, of course.

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

    teresa...that is kinda how I feel as well. For that reason I am scared to stop taking it, especially since I just had a lumpectomy, one positive node and am grade3. Odds are against me at this point. I am very positive about it tho.

    Will see how the second mammogram goes this summer.

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  • QueenKong
    QueenKong Member Posts: 154
    edited April 2013

    I'm suffering through rads and reading all your posts waiting for sleep to hit me. I an wondering if I need to find out my percents for the HR's? If it would matter for any reason. I still have my port in and am keeping it though the Medical Oncologist says i should take it out.

    Oh hell, I really just want to think about Summer vacation and play with my kid, do some writing.

    NavyMom, thanks for that post about your bloodwork. It does pay off to be an advocte for yourself and know what is going on. There is so much good support here and so many smart ladies. Thank you for that. I am so grateful.

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  • jenjenl
    jenjenl Member Posts: 948
    edited April 2013

    Yesterday I finsihed my last chemo treatment (please have let is worked) 6 rounds of TAC.  This morning I woke up and turned 34.  I have been arguing with my Onc for about three months now about pain in my back and pelvis, he strongly believes that it is from chemo.  I say I don't know what it's from - a tweaked back or cancer but I think we should rule something out.  No one should be in back pain, taking pain pills and sleeping on a heating pad every night....come on something has to give.  We agreed to let this round flush out and meet in 3 weeks.  I am going to keep a log for the next 3 weeks for where the pain is, when it started, what was I doing and the severity/level of the pain.  I start Rads starts in 3 weeks - ready to move onto to a new treatment!  Man I want some hair on my head....going to have to be really patient on that one.

    About ER+ % - I was zero across the board for everything :(  I play the sit and wait game.

    Have a good day my TN family.

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  • slv58
    slv58 Member Posts: 1,216
    edited April 2013

    Happy Birthday Jenjen1, may you have a happy, relaxing day filled with fun and love.

    I sense the worry about your back. I would insist on getting it checked out, as NavyMom has pointed out about being our own advocate. If you feel something isn't right then that is adding stress to your life worrying about it. I have read that most doctors like to wait 2 weeks to see if the issue resolves or not so maybe explain to your dr.that you are really stressed about this and compromise on a shorter wait period.

    Good luck with rads, I will be starting that in July, asi have 2 more chemos to go. I'm hoping that it will be easier, although for me it's a 2 hour drive one way, so that is going to be the hard part.

    HAPPY HEALTHY FUN BIRTHDAY Jenjen1

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  • washingtonwoman
    washingtonwoman Member Posts: 19
    edited April 2013

    Jenjenl~Wishing you what ever joys you can squeeze out of your birthday!! We share the same date:-) I'm getting a biopsy & chemo for my "special" day ha ha. Congrats on being done with chemo and hoping the SE start going away. Take good care and Happy Birthday!

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  • SherylB
    SherylB Member Posts: 450
    edited April 2013

    jenjen,

    I hear you about the hair. I find I avoid looking in the mirror because when I am home I don't wear any head covering because my head sweats alot. I refer to myself looking like a prisoner of war and I just realized that I am in a war for my life so a little time with no hair is a small price to pay to win this war. Finished chemo and start rads Monday so the first battle is in the bag and it was my victory.

    Hugs, Sheryl

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

    jenjenl...Happy Birthday and congrats on finishing chemo.

    I get the hair thing..I am PFC 15 months now and have had 2 haircuts but I am still taking Anastrozole and guess what? MY darn hair is falling out again. Because I am basically TN, I will stop the meds after my next mammogram in the summer. It's just NOT FAIR!

    At least most of the TN gals are spared the anti hormonals. Some gals have a really hard time with them. Plus the SEs can be dangerous ie: bone loss or blood clots. Guess it's the silver lining after all. Undecided

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

    hey schatzi: whatever you decide about the hormone therapy, please know the odds are not against you! Most TNs are grade 3 (it's aggressive), and most do not recur. Your stats are pretty similar to mine.

    Yesterday, I went for my annual check-up with my BS - she is my favorite doc... super knowledgeable, skilled, compassionate and reasonable - and she gave me another all-clear. For the first time ever (now that I am 3 1/2 years out, lol!), she told me that "TN is aggressive and if it recurs, it typically does so within a couple of years." Of course I already knew this, but it was nice to hear it from her.  

    jenjen: Congrats, nice to be finished chemo for your birthday, though it sucks you've had to deal with this at such a young age. May you enjoy many, many more birthday celebrations! It's true that chemo causes aches and pains.... but it's also wise to get anything unusual or persistent checked out. A pain log is a good idea, then insist on a scan if nothing improves. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2013

    jenjen and washingtonwoman, Happy Birthday! My birthday is today also. Today is the first day that I am 61 years old!



    Last year I had a bald birthday for my 60th. I just found out that I will start chemo again on April 22, so I will need to get used to bald again.



    I wish you each a beautiful, wonderful day with many more to come!



    Phyllis

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

    luah...you have the closest DX to mine that I have seen on these threads. I agree with all you say. I NEVER see my surgeon (except to have him drain a seroma and even then he was annoyed I was there). I see my MO every six months but until last week I had assumed I was doing everything possible to avoid a recurrence. Now I am thinking...I missed my 4th DD AC...only had 16 rads..no boost and taking a med that won't really do anything for me. I am sure if I asked for a MRI I would get the answer...we don't do that unless it is indicated.

    I am trying not to obsess about this but the questions are still there!

    Congrats on the all clear...that's great!

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  • adagio
    adagio Member Posts: 982
    edited April 2013

    Schatzi - I had my lumpectomy in September, had one follow up with my BS and she said she didn't need to see me again. This surprized me, she said that there is nothing more she can do for me - I took it that this was good news! Just curious as to why you missed your 4th A/C?  The number of rads is less important than the amount of radiation you receive - you most likely had a higher dose than those getting the longer treatments. It is so hard not to worry, and I know that I still do, but I am trying to learn to focus more on living than on cancer. 

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  • TINAMAE
    TINAMAE Member Posts: 106
    edited April 2013

    Anyone on here from Arkansas!!

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  • teresa008
    teresa008 Member Posts: 55
    edited April 2013

    Happy Birthday jenjen, washingtonwoman, and phgraham!! How fun to all share the same birthday!

    Jenjen, I've been dealing with lower back pain from an old injury for 22 years now. The main thing I would suggest trying is to only use wet heat on your back. It's fairly easy to do, just get a light rag wet and put it flat inside the heating pad cover in between you and the pad. I found a very long time ago that dry heating pads actually make my back pain much worse instead of better. I wish you good luck with it. Take care all.

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

    Happy Birthday Special Ladies:  JenJen, Phyllis, and Washingtonwoman!  Celebrate and let yourself eat whatever you want today!

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

    Adagio..I missed the 4th DD AC because by the third one, I was in a wheelchair. Had to sit down to brush my teeth or have a shower....totally out of breath. They did a CT scan on my lungs and I had multiple blood clots (Pulmonary Embolism) and the MO decided to stop right then and I went for 12 weekly Taxols instead.

    I had to give myself daily shots in the abdomen of blood thinner for 6 months. The Hematology Onc said it was due to the chemo. I have been fine since but if I were not post menopause, I would not be able to take Tamoxifen because of blood clots being a possible SE. That wasn't the case anyways.

    Last week my MO matter of factly tells me I now have some damage in my lungs. Jeeze Louise!

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  • gillyone
    gillyone Member Posts: 1,727
    edited April 2013

    adagio - I saw my surgeon for one visit after lumpectomy when he removed the drain and declared I was healing well. (he also delivered the devastating news-or so it seemed at the time- my stage was IIIc and so chemo was in my future. Up till then we were expecting lumpectomy plus rads as tx). Never saw him again which was fine as he had done his job.

    As a matter of interest, once I'd finished rads I did not see the RO again either.

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

    gillyone...was the same for me...well I had one final RO visit when he said "I have some bad news"...I nearly dropped on the floor. He laughed and said "oh I am leaving this hospital and going to Toronto to go into reasearch". That was a sad day for me because of all the Drs I had, he was the sweetest and most caring. I said to him...that's a shame because you have such a nice personality and it will be wasted in a lab.

    Never saw him again. Now the surgeon was a general surgeon...all he said to me was..."I think you will be pleased." What was that supposed to mean? I remember the next day when I took the bandage off......I ran out to the patio door and hollered at DH...hey I still have a nipple. Neighbours musta thought I was nuts!

    He didn't say what he did or what I should expect or anything. I had no drains which I blame for my lymphedema and seromas.

    It was my MO that pretty well insisted on chemo...DH said if it had been him, he wouldn't have chemo. Sure glad I can make up my own mind. Ya gotta do what ya gotta do!!!!!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2013

    Happy Birthday, birthday girls!  Celebrate!!!

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  • QueenKong
    QueenKong Member Posts: 154
    edited April 2013

    Happy Birthdays to JenJen, Phyllis, and Washingtonwoman!

    schatzi14 You have lung dammage from the AC? I hear you on the, "Ya gotta do what ya gotta do!" I am happy that there was chemo for me to have. I hope you and your nipple are moving forward.

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

    Hello to my TN sisters...I see I have some younger sisters just born joining us...welcome...we are here for you all!

    It has been a bit since I posted here.  Just had another try for recon(March 5th)...this time a gap flap for the failed diep on that side.  I am happy to report that mission accomplished.  I now have one belly boob and one butt boob.  The surgery was 12 hrs and I ended up in the hospital for 12 days on antibiotics because I got a terrible infection in the skin around the new flap due to previous rads.  But I am so grateful for an amazing surgeon who saw me through it.  Also the ct I had day before surgery showed no signs of cancer anywhere in my mid section!!! woot woot.  My next surgery to start perfecting the canvas on my chest is June 24th

    Maggie

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

    Please SHARE

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  • jenjenl
    jenjenl Member Posts: 948
    edited April 2013

    Yeah Maggie that's great, hope this one sticks!!!

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