Calling all TNs

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


    Gillyone great news that all is well. Yep another one down. Soon they will be a passing memory.


    With the Emend, my onco gave me them for three days each time I had chemo. I also got Ondansetron and Stemetil if I needed a top up which I didn't need as the Emend was so good. The ondansetron gave me nothing but constipation which I still live with even now yet never had it before chemo.

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


    3 month ck up yesterday and all looks well!! Tumor markers were at 0 (ctc) and I have graduated to check ups every 6 months!


    Maggie

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  • Jianchi
    Jianchi Member Posts: 352
    edited November 2013


    Thank you everybody for the emend advice. I will talk to my MO. Gilly and Maggie, congratulation on your good results!

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited November 2013


    Lovinmymom what a great tribute to your mother. She is deifinatly missed on the boards. May she rest in peace.


    I was just wondering if anyone has been diagnosed with costochondritis? I have been having pain in my breast and chest and my bs tells me this is what is going on. He said it could have been caused from radiation, but I did radiation 2 years ago. Just wondering what your comments are. Thank you!

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  • ALHusband
    ALHusband Member Posts: 344
    edited November 2013


    mags that's awesome news! Congratulations! Celebrate somehow!

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  • ALHusband
    ALHusband Member Posts: 344
    edited November 2013


    Gilly...also great news! Glad to hear when people are doing well! It's uplifting!

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  • ALHusband
    ALHusband Member Posts: 344
    edited November 2013


    I was told by our Pharmacist that Emend, in pill form, works better than anything, but is extremely expensive so insurance rarely wants to pay for it. Pharmacist says insurance wants the docs to use compazine...which is cheap. Same with Zofran, kind of expensive. However, my wife's insurance did agree to provide 15 Zofran pills every 23 days. Where the hell they come up with 15 for 23 days is beyond my pay grade.

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  • encyclias
    encyclias Member Posts: 302
    edited November 2013


    ALHusband,


    I priced the pills last year and if my memory is correct, it seems ones like Zofran cost about $1-2 each. Emend costs about $100 per pill, and you need three of them each time. Merck Labs does have an assistance plan for those who qualify.


    Carol

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  • TifJ
    TifJ Member Posts: 1,568
    edited November 2013


    I remember having Emend in my IV, but I just now remembered (damn chemo brain) that I was also prescribed an Emend patch for each chemo. I put it behind my ear the day before and took it off the day after- worked very well. I don't know what it cost, my co-pay was $30 for it.

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  • adagio
    adagio Member Posts: 982
    edited November 2013


    mags - great news. Just curious what tumour markers you get done. I have asked my MO about these and she told me there are none for triple negative. I know every oncologist is so different in their treatments and testing afterwards - wonder why this is?

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

    Gotta add to the good news.  Had my 6 mo Onc appt on Monday.  Exam was fine and labs were drawn including the CA 27-29.  My MO will mail me a copy of the results in about a week.  And as I predicted, she offed me a PET scan.  I declined.  I am feeling good and can't justify the radiation exposure or the cost.  So I will continue to live life as fully as possible and try not to second guess my decision.  She said that she wants to see me in another 6 months and then I be RELEASED!   Holy cow....never thought I would see the day. 

    Hugs to all our gals that are in treatment.  I know you are tired of hearing this....but there are better days ahead and right now you just want to kick cancer to the curb.

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


    adagio--she alternates each time...this time was the ctc and next time it will be the ca 27-29


    Mags

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  • TifJ
    TifJ Member Posts: 1,568
    edited November 2013


    Congrats to all with good news!! Nice to hear!

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  • ksmatthews
    ksmatthews Member Posts: 812
    edited November 2013


    Navymom you will be getting released at 1 year? I am 2 years 8 months out and I am still on every 6 months. I think in March I go to a year, but I was told with TNBC i would be coming for 5 years. Thats awesome news though! I know I am ready to be done. I still see my bs and onc and I always schedule them the same day.

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  • Titan
    Titan Member Posts: 2,956
    edited November 2013


    Navy Mom is almost 5 years out as I am....released is such a wonderful word...! I'm 56 months out as of today....! 60 months in March...time really does go fast ladies...can't believe almost 5 years

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


    Yep, Titan is right.  I will be 5 yrs out next May.  I think that I have been on the 6 month plan since somewhere in year 2.  Still see the BS every six months and  I would like to stay no less than once a year with her....she gives the best breast exam.  Plus I just like her as a person.  I also see the PS once a year, but after my appt in 2014, that will change to every other year unless I have some type of problem.  I am Grateful to see some  of the appts come to an end....ya know, by the time ya get the gyne, dermatology, dentist, ophthalmologist and PCP it just seems like enough already!  A girls gotta make time to get her hair and nails done once in a while, too.SillyHeart

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


    Congratulations to Mags, NavyMom and Titan. You are all doing so well. It's give us all hope and encouragement. Keep it up Ladies.


    Adagio my BS does the CA15-3 but I don't know whether it is particularly reliable. I hate it when he gives me a blood work form to get it done. Raises my blood pressure something terrible with the anxiety, makes you wonder whether it's worth having it done.

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  • adagio
    adagio Member Posts: 982
    edited November 2013


    cocker - I get what you mean about the anxiety of the tests. I get no tests whatsoever and I am not too bothered about that, but I do ask every time I go for an appointment about tumour markers and I get the same response - not reliable and not necessary. Who's to say what the right thing is?

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  • TifJ
    TifJ Member Posts: 1,568
    edited November 2013


    I am 3 years 3 months from diagnosis and see my BS every 6 months now (started at 2 years) and still see my MO every 4 months. My regular MO retired so I will be seeing an associate of his in Dec. Maybe he will switch me to 6 months since I will be 3 years from end of chemo Dec. 30! I saw my PS once after I had the exchange surgery and he never asked to see me again. I hope I get to hear the word "released" someday!!!

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  • Worrywart9390
    Worrywart9390 Member Posts: 101
    edited November 2013


    So happy to hear the good news for everyone!! Yay!! I just had all my checkups and even though they didn't do any testing I am free from doctors till February when I have my first mammo to give a new baseline. Scary without tests, but I'm trying to put it out of my mind the best I can till February. Have a great day ladies.

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  • Worrywart9390
    Worrywart9390 Member Posts: 101
    edited November 2013


    Lovin, I just watched the video, wonderful wonderful tribute to your mom...Love all the smiles from her and how she truly seemed to enjoy her life.

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  • adagio
    adagio Member Posts: 982
    edited November 2013


    mags - what is ctc?

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

    Circulating tumor cell

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  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited November 2013


    My MO wants all the following done every 6 weeks.


    CEA


    CA 125


    CA 15-3


    CA 27.29


    She covers the bases.


    Does anyone else get all these done?


    Marsha

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  • JAN69
    JAN69 Member Posts: 947
    edited November 2013


    OMG , Marsha, that's a lot of tests and so often compared to my MO. I get a CEA and a 27-29 at my 3 month check ups. Visits are due to go every 6 months soon. I like the idea of testing frequently; it gives me a sense of security. I'm interested in what others respond. Jan

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  • belleeast
    belleeast Member Posts: 653
    edited November 2013


    No,wish I did! All I get is felt up every 3 months(probably going to 6) after this next one. Once a yr, blood test like the kind during chemo-no cancer markers at all. Once a yr-mammagram. No scans unless I present symptoms,so far 1reg X-ray of hip. I would feel a lot better if I did get those tests even if they aren't reliable for some people.

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  • christina1961
    christina1961 Member Posts: 736
    edited November 2013


    I get the CA 27.29 every four months.


    Ksmatthews, I still have pain on the cancer side. I had a mastectomy and rads, too. It seems to come and go.

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  • KSteve
    KSteve Member Posts: 486
    edited November 2013

    I go to my onc every 6 months and do not currently receive any blood work at these appointments.  I trust my onc and we discussed this approximately one year ago.  His philosophy is that there are so many explanations for changes in blood work that are not related to cancer which can add to the anxiety and stress that we already feel.  In most cases, additional tests and scans result.  He's not worried about the cost to the insurance companies as a result of these tests, but is very in tune to the patients mental health.  He explained that in most cases, a reoccurrence would be detected due to symptoms I would report, not blood work.  That, he feels, is more reliable information than the blood work, especially for triple negative.  He left the choice up to me, and I chose no blood work.  If I had wanted to continue with it, he would have done it.  In my case, I had some elevation in blood levels one year after finishing chemo which resulted in a petscan and 10 days of extremely high stress and anxiety during the holidays.  I was very fortunate to have been NED, but it consumed me and my DH until I got the result.   Just another viewpoint.  Not sure there is any right or wrong for TNBC blood work.

    Kathy

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  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2013


    Just want to wish you all an early Happy Thanksgiving. I tore the miniscus in my left knee cleaning the ceiling fan above my bed. Had to stand on the mattress to reach it. Took me about 3 hours to get on it and to stand steady, lol! Then I couldn't figure how to get down since I tore the miniscus in my right leg same time last year and had surgery for that one too!. The only way I could get down and off the mattress was to drop to my knees. Since I was so afraid to land to hard on the "fixed" knee, I put all my weight on the left knee and tore that miniscus! Going in Monday for my arthrascopic knee surgery.


    Going to be 5 years for me too in February. If the cancer doesn't get me, I think I'm going to die from my knees. Thanking the man above I only have two legs.


    KS - I too have the chondritis. My BS said I would have it forever. It's from cutting through muscles and nerves that don't always grow back together exactly as before the surgery (especially the nerves). She didn't feel it was from the radiation, but I think that definitely contributes to it. I don't have the pain often, but if I move a certain way - ouch - it takes my breath away. Fortunately it doesn't last long, but before I knew what it was, it scared me when I felt that pain.


    I read all of your posts just about every night, but don't post as much as I now seem to use the extra time for injuring myself in some way or form! Be well and know that each of you is always in my thoughts and heart.


    Hugs to all,


    Linda

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  • LanaM
    LanaM Member Posts: 142
    edited November 2013


    Looking for opinions. Had my RO consult today. He said I didn't technically fit the protocol for rads, but it was debatable. Said they look at three things w/mastectomy - positive nodes (I had none 0/4), margins (I was 7mm uninvolved), and tumors over 5cm (mine was 4.6cm). 4.6 is awfully close to 5, I also had lymph/vascular invasion present, it's TN, and my ki67 was 96%. I'm leaning towards going ahead and having rads, and I think RO was too. I think it would give me more peace of mind and help me feel like I've done everything I can to kick cancers butt! Any thoughts?

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