Calling all TNs

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  • Hope60
    Hope60 Member Posts: 223
    edited January 2012

    Mccrimmon - great news! Yay for NED!!!

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  • Reality
    Reality Member Posts: 782
    edited January 2012

    That's great Mccrimmon!

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  • riley702
    riley702 Member Posts: 1,600
    edited January 2012

    Luah, my onc. uses paper gowns that are open in the front. My primary care doc, however, has cloth gowns because she always hated the paper gowns, too. They're more like ponchos - just a rectangular length of soft cloth with a hole for your head, and with ribbon piping on all edges. It covers you completely front and back, and is wide enough for the sides to overlap as you sit there, but she can easily slip her hands through the open sides for an exam that doesn't leave you exposed. I've complimented her on it and she said she's been surprised how many patients notice and like it better than the paper gowns.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited January 2012

    McCrimmon - that is great news.  I noticed that you used the term "NED".  My Onc. told me that since my BC had never metasized, that term cannot be used.  It is only used when someone's cancer had previously metasized and now is in remission - then they use the term "no evidence of disease".  I didn't notice any mets in your ID.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited January 2012

    Suze - are you home yet?  How are you doing?  Hoping you are comfortable in your own home/bed today.

    Has anyone heard from MBJ?  Girl, where are you, what are you up to?  I have been missing your wisdom on the boards lately.

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited January 2012

    McCrimmon yeah for good news!

    About the gowns, my BS, My RO always use gowns, except when I did radiation, then I was given a small towel to cover up with.  My MO never uses a gown and just has me raise my shirt and bra.  I have never had any of them have me unzip my pants and check anything.

    Funny how all our stories are different. 

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited January 2012

    Lovelyface, thank you for explaining NED, I didn't know what to put.  I feel funny using cancer-free like I might jinx myself or something. LOL

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  • TifJ
    TifJ Member Posts: 1,568
    edited January 2012

    Heather- so glad to hear everything went well. My onc also was concerned about the coma thing and the drop in glucose while sleeping although I've seen reports (thank you Michelle) that state otherwise. He won't presribe it for me though.

    Suze- any news? Hope you are feeling better

    Bak- how is your infection?

    Yes, where is MBJ? Hope she is just enjoying getting settled in her new home and state!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    Heather - excellent news!  Those tumor markers are great, by the way.  I don't think anyone tests at "0"...mine were still in the low 30's as of late October. 

    I have to LOL at MOs who talk about metformin putting someone in a coma.  It doesn't cause glucose lows, like many other diabetic drugs.  That's why they can use it safely in the clinical trials regardless of the person's weight or glucose levels.  How could they give it to almost any woman if it actually did cause all those problems??? 

    Your primary physician will be more familiar with the drug.  It's one of the oldest, cheapest and safest diabetic drug on the market.

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  • Titan
    Titan Member Posts: 2,956
    edited January 2012

    Well..sounds like most of us experience the same thing...as far as exams...I just think it would be more professional to gown us...ah well..whatever...

    I got felt up 3 times in one day in November...the Onc, BS and the PA...

    My BS was so proud of his work he had to show the PA....so I was like laying there like an exhibition...lol

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    mccrimmon- everyone has tumor cells circulating in their body. It's how one's body handle them that determines if/when cancer occurs. So no, the tests should not be zero.

    People who actually develop cancer do so because their body has lost the ability to expel the cancer cells due to genetic mutation or anomaly i.e. a defective p53 marker, etc.

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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited January 2012

    Hi fellow Tns.  Another setback.  I had my port put in last Wednesday and by Monday still wasn't feeling right and breathing problems. Went for an xray.  Found a partially collapsed lung from a nick from port placement and was hospitalized. I had a VERY painful tube put in my lung yesterday.   I just got out of the hospital.  Boy, this disease throws all kinds of things at ya.  I don't know what is happening day to day it seems.   I'm very tired.  Hope to catch up with posts when I'm stronger.

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited January 2012

    I'm so relieved to have had a good check up with my onc today.  Like Luah, I get the cloth gown. It feels very clincal way and I prefer it that way.  I asked about Metformin and he said I don't qualify for any clinical trials but that it's worth discussing with my GP and having her monitor my blood sugar levels.  My bloodwork for that is always fine. He once again reminded me that ER negative tumours are "front loaded"...meaning if they are going to come back, they will generally do so sooner than in our ER postive counterparts.

    Lovelyface - re: NED....when I have had my mammograms, the radiology report has stated "no further evidence of disease" so I'd say that means NED. Hope all goes well with your upcoming checks on your neck. 

    I hope everyone is having a good evening.  I think I'll sleep better tonight. 

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited January 2012

    Congrats, Sugar!!!

    Tina - ouch!  So sorry your port placement caused so much trouble.  Hopefully everything is resolved and you are feeling better!

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited January 2012

    Tina so sorry you had problems with the port placement.

    I am feeling 75% better.  This muscle thing is something else.  Did go to my primary and he did alot of bloodwork, results will be back today.  So should know more, he said even after chemo this muscle weekness is not normal..  So we will see whats going on. 

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  • TifJ
    TifJ Member Posts: 1,568
    edited January 2012

    Yay Sugar!!

    Tina- how crappy is that! Hope you get to feeling better soon!

    ks- hope the muscle thing is nothing major and your blood work is all good.

    Suze- are you home yet?

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  • Luah
    Luah Member Posts: 1,541
    edited January 2012

    Sugar: Congrats on the good check-up. Next week, I think my onc will say the same thing about metformin. My family doc did bloodwork at my annual physical and my blood glocose level came back at 4.7 - so very normal. 

    Tina: That sucks, but yes, there are so many little hiccups along the treatment journey; hope this passes quickly for you.  

    Ladies, I've often wondered if TN's pattern of coming back sooner (if it recurs) happens for any  innate reason other than we are not on hormone therapy - does anyone know?

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited January 2012

    Luah, good question about the pattern.  My uneducated guess would be a combination of the fact our tumours are generally grade three and faster growing coupled with no hormonal treatment.

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  • christina1961
    christina1961 Member Posts: 736
    edited January 2012

    Luah,

    I agree with Sugar - I think the risk for more rapid recurrence has more do with the grade. I'm basing this on some study I read somewhere that said after 5 years the grade 3 risk factor was no longer a risk factor.  The oncologist at Vanderbilt told me if I didn't have a recurrence by three years that would be a very good sign and if I didn't have one within 5 that I was most likely not going to have one ever.  I have 5-10% ER receptors and am going on tamoxifen (although the Vanderbilt oncologist didn't think the tamoxifen would do much for me.)

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  • michelleo13
    michelleo13 Member Posts: 342
    edited January 2012

    I also get a cloth gown when I see my MO. In fact, the one time the nurse forgot to get me to change into a gown, the doctor actually left the room to give me time to get changed. 

    Great news Sugar. Long may it continue!

    Tina, hope you feel better soon!

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  • khs113
    khs113 Member Posts: 105
    edited January 2012

    Hi Everyone---Thanks to all who have been posting their follow up schedules. I feel alot more reassured that this is the normal protocol. When I first was diagnosed with TN some of the reading suggested that we would have more frequent exams,etc because of the Grade. I'm also starting to appreciate the fact that I don't have visit the hospital for another six months.

    I have to say that I had a good experience all round with my hospital I'm lucky to live in a town with two great hospitals. The university hospital is known for treating the out of the ordinary situations. My husband was treated there for a particular kind of throat cancer this past year and he often had long waits and impersonal staff. I went to the other hospital that most breast cancer patients go to and never had to wait and the staff, on the whole, was very attentive. I only had one rad tech who initially was very aloof, but I killed her with kindness and after about two weeks she cracked. In fact, I finished before Thanksgiving and bought the staff mini cupcakes and she was the most appreciative.

    I love the t-shirt gown idea. Wish I had known about it for the rad treatments. I usually got the biggest gown I could find and the ones with velcro closures. Never did figure out the ties.

    Kymn-I know I'm new to this strand but I'm so happy for your 1st anniversary. My doc said to start counting the day of diagosis and I'm counting the days. Your news brought a smile to my face. My 65th birthday is tomorrow and I'm just glad to still be here. I'll try to never complain about how old I am ever again.

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  • TifJ
    TifJ Member Posts: 1,568
    edited January 2012

    Happy Birthday KHS!!!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Hi all,

    I dropped off the planet back last winter/spring while I was doing chemo. Then did the daily rads. Then took a couple of months to catch my breath.

    I'm really out of the loop and have been away so long that I guess I'll never catch up but I never stopped thinking about my bc.org pals, so I wanted to jump back in to say 'hi' and try to reconnect.

    I hope everyone is good and had nice holidays. I'm hoping 2012 will be a great year for us all!

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  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited January 2012

    Hi Michelle,

    What part of PA are you from?  I'm originally from the area. 

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  • Paintingmywaythru
    Paintingmywaythru Member Posts: 317
    edited January 2012

    Hello to all....Suze hoping you are home soon.

    I have been busy settling into our new house and doing the long commute.

    My sister is taking me ot HAwaii Saturday so I am looking forward to the beauty and change.

    HAppy Birthday KHS

    And I hope everyone has a wonderful day.

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited January 2012

    HeidiToo- great explanation, thanks, except I don't understand the P53 marker.  How can I get to check my levels?  I have never seen that term in any of my reports.

    Sugar & Luah - Love to hear that ER negative tumors are "front loaded" - light at the end of the tunnel!  You know I always mix up the terms "recurs" and "mets".  About ER negative tumors - do they recur or mets sooner than our counterparts?  Isn't there a difference?  Recur would be either in the same area or the other side and mets could be anywhere, including distant.

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  • KSteve
    KSteve Member Posts: 486
    edited January 2012

    Paintingmywaythru - So glad it's finally time for your Hawaii trip!  I'll be living vicariously through you.  How's your hair doing?  Please tell me that you're going topless to Hawaii (LOL - That sounds funny, doesn't it??).  I hope you have the time of your life!!

    Kathy

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited January 2012

    khs happy birthday!

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  • christina1961
    christina1961 Member Posts: 736
    edited January 2012

    Tina,

    I'm so sorry you had the awful problem with the port placement!  I hope you are feeling better soon.

    Christina

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  • Hope60
    Hope60 Member Posts: 223
    edited January 2012

     Tina,  I hope you're feeling better soon!

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