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Triple Negative Stage IV

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Comments

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited January 2015


    Hi. I have scan tomorrow and am really scared. Encouragement much appreciated!! B

  • smiley47
    smiley47 Member Posts: 91
    edited January 2015

    BarbDenise64

    Will definately keep you in my thoughts and prayers, I totally understand the anxiety you are going theough.

    Hugs

  • ReadingMama
    ReadingMama Member Posts: 338
    edited January 2015

    B - ((((hugs)))) for an anxiety free scan and good results.

  • keldel
    keldel Member Posts: 83
    edited January 2015

    Hello BarbDenise64

    Best wishes for a good scan. Sending love and positive thoughts your way.

    I get the anxiety with them too. (((((HUGS)))))

    K

  • Adnerb
    Adnerb Member Posts: 727
    edited January 2015

    BarbDenise, hope your scan went well!!!

    Kelly: Lotusblossom posts here, I'm sure. I did just see an update on tnbcfoundation.org. She has been living with TNBC mets for more than 5 years and has had NED for almost a year now.

    http://forum.tnbcfoundation.org/5-years-with-mets-and-counting_topic12038.html

  • keldel
    keldel Member Posts: 83
    edited January 2015

    Hello BarbDenis, just checking in - I know sometimes one has to wait a few days to get the report. Hoping it went well,

    Thanks Adnerb about Lotusblossom! I do follow her as I find her story inspirational. Sounds like she has a good oncologist and was a good patient to be persistent. (Sometimes my husband says, "why do you always have to challenge the doc?", S/he went to school for this. I say because it gets them to look at me as a person, not just a "case". It also helps me to buy into the recommended treatment more.) I believe LotusBlossom was stage iv from the first dx too.

    K

  • lotusblossom
    lotusblossom Member Posts: 21
    edited January 2015

    Hi all,

    I was diagnosed with mets from the get-go in June 2009. At the time of diagnosis, my mets were so extensive that the PET scan report was 3 pages long. My onc told me I looked like I had been in a radioactive accident. Mets included axilla nodes, neck nodes, hilar and mediastinal nodes, lungs, biliary tract, spleen, pericardial sac, pancreas,spine, muscles and soft tissue.

    I started treatment with Xeloda/Gemzar for 8 months. Initially there was some response but then eventually progression. I was switched to Caelyx(Doxil?) which failed. I then was switched to Taxol for 16 months. Again, initial response to progression. Then I was switched to Navelbine as a last resort. Navelbine kept me stable for 20 months. Then, quite suddenly, I began to show rapid response which brought me to NED. That was in February 2013. I have been without treatment since.

    Throughout my treatment, I never took more than a couple of weeks of chemo holiday and was diligent in all health matters. I exercised regularly and continued to work until the day my employer forced me onto disability (that's a whole other story).

    It has been almost 6 years since my stage 4 diagnosis. I am doing well.

    Here is a video that I did with the Canadian Breast Cancer Network called "Living Legacy". We are 3 participants in the video, 2 of us are stage 4 TN. I am the red head with the Chinese name, which in English means lotus blossom. I hope the link works.....

    http://www.cbcn.ca/index.php?pageaction=content.pa...



  • keldel
    keldel Member Posts: 83
    edited January 2015

    lotusblossom

    Thank you so much for sharing.  I really appreciate knowing the details. 

    Kelly

  • smiley47
    smiley47 Member Posts: 91
    edited January 2015

    Great you made it over to the group, thank you.

  • ReadingMama
    ReadingMama Member Posts: 338
    edited January 2015

    lotus, thank you so much for sharing your story! Very inspirational and hopeful for me. I have not heard of a TN over 5 years, so that is very exciting.

  • Beachbum1023
    Beachbum1023 Member Posts: 364
    edited January 2015

    Hi Lotusblossom, Thank You for telling your story. I so want to be like you, Stage 4 and living life! I have a lot of living to do yet, places to go, and hearts to break before I leave this earth. :)

    I am waiting to start rads or chemo, depends on the decision of the Tumor Board on Tuesday. So I feel really good right now, so I hope the rads then chemo. I would prefer to skip it all and be cured, but I'm just making lemonade out of all of these lemons.

    Have a peaceful weekend!

  • keldel
    keldel Member Posts: 83
    edited January 2015

    Well Thursday I came down with something a flu or bug.  Slept all day despite being on decadron steriods.  Had a fever around midnight of 34.8c.  Had chills, nausea, dehydration,  diarrhea,  fatigue.  I have also been losing weight - dr hasn't used the cachexia word - but that what it looks like to me.  My thigh muscles are floppy and about half the size they were a month ago.  My temperature has returned to normal in the last 24 hrs but I am still on liquids, lots of clear jjuice,  chicken broth and water.   I have also managed some hard boiled.eggs, whey isolate protein shake and almond coconut milk. The diarrhea may be over.  I will try a little gluten free toast today (sunday).  Ofcourse I just spent tome with Dr Google and learned that patients that develop cachexia have poorer prognosis.   Any advice?

  • smiley47
    smiley47 Member Posts: 91
    edited January 2015


    Keep your strength up by doing what your doing with all the great foods and keep us posted. I believe there are some very sick people with the flu, when I went to the jospital today for my taxol the volunteers were at the door making sure we wore masks and washed our hands. Im following your progress on FB too

  • Adnerb
    Adnerb Member Posts: 727
    edited January 2015

    I have the flu. Kelly, I just had wheat crackers with strawberry cream cheese and Campbell's Italian Wedding soup. Yum!

    Hope you don't lose any more weight!

  • Adnerb
    Adnerb Member Posts: 727
    edited January 2015

    I just found out that lostinmo died in November of 2014. It's shocking to me because her last post said she was in remission. That was in August of 2014. I will miss her posts. May she rest in peace.

  • ReadingMama
    ReadingMama Member Posts: 338
    edited January 2015

    Kelly, hope you are feeling better??

    I don't even know what cachexia is, will have to Google it.

  • keldel
    keldel Member Posts: 83
    edited January 2015

    Well this morning my symptoms changed and I had a tight chest. No cough, no fever but felt like my breathing was weak. My husband said I am taking you to the ER. I called my radiation oncologist and he said yes go. So we went. The ER doctor did ekg, bloodwork, vitals, chest xrays and a chest ct scan. His concerns were pulmonary embullism, pneumonia or blood clots in the lung. Results? All clear and sent me on my way. Told me if anything worsened or I had pain, nausea, fever, cough, pink flem, then come back. Bloodwork, kidney functions all good. So we left and have checked into a hotel down the road just in case we have to go back tonight. (Cause everything seems to worsen in the middle of the night!) On the plus side I feel like I am OK and we get to relax in a hotel room and pretend like we are normal.

    Adnerb - sad to hear about lostinmo.  I too though she was in remission.   I like your flu therapy- hope you feel better soon.

    (((Hugs)))

    Kelly

  • smiley47
    smiley47 Member Posts: 91
    edited January 2015

    How very sad we have lost another lady to this disease, hoping her family and friends find peace and comfort


  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited January 2015


    just to let everybody know I finally saw my oncologist today for my review and results of my last scan. He was very pleased -blood tests normal, no spread and neck tumour much reduced so not quite NED but much better than I thought. He is giving me 2 months off treatment so small celebration tonight

  • Beachbum1023
    Beachbum1023 Member Posts: 364
    edited January 2015

    BarbDenise64, Party like it's 1999! That rocks 2 months off and no spread, BIG celebration for that one.

    Congratulations, enjoy every day.

  • keldel
    keldel Member Posts: 83
    edited January 2015

    Hello BarbDenise64 - WOW! That IS great news. Definately celebrations are in order. I am so happy for you. :)

    Kelly

  • ReadingMama
    ReadingMama Member Posts: 338
    edited January 2015

    BarbDenise, congrats, that is great news!! Enjoy your chemo break, I hope you can fit in special fun things, as well as daily living well.

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited January 2015


    Kelly

    Hope you are feeling better. We have enough to cope with without those sort of extra things. All the best. B

  • lbgal
    lbgal Member Posts: 64
    edited February 2015

    Hi all,

    I'm TNBC stage IV too. I just joined and I've been posting in the stage IV forum. I'm glad I found this thread which is for TNBC. I'm not sure how this works, how can I post to the TNBC group? Especially if I have a question?

    Thank you

  • Beachbum1023
    Beachbum1023 Member Posts: 364
    edited February 2015

    Hi lbgal, you can post here, this is triple negative. I post in a lot of different forums also. I hope you are well.

  • Adnerb
    Adnerb Member Posts: 727
    edited February 2015

    Very quiet here. This is still one of my favorites because my first dx was TN. Plus, my MBC has yet to respond to an anti-hormonal. I've tried 3 and they all failed. Chemo has worked well for me, so I'm thinking that my cancer is still behaving like TNBC.

  • smiley47
    smiley47 Member Posts: 91
    edited February 2015

    hi:

    I've noticed how quiet it is too. I would like to know if anyone has any experience with navalbine, taxol has stopped working. Progression noted and possible brain met 8mm, wondering if there is anyone out there with advice on mets to brain that small. Will they stop me from driving? Is it better to do whole brain radiation or just the one.

    Thanks

  • Beachbum1023
    Beachbum1023 Member Posts: 364
    edited February 2015

    Hi Smiley, I do not have any history with that yet, but I am finishing rads now. I will be seeing the MO after I finish rads, and probably back to chemo. I cannot do any Adriamycin or Taxanes. I have heart damage from the Adriamycin, and my tumor grew back quickly on Taxol. But being triple negative, it will be challenging.

  • keldel
    keldel Member Posts: 83
    edited February 2015

    Hi smiley47

    They found brain mets in early December 2014. Two in my cerebellum (back, bottom, also called little brain) and a number of small lesions throughout. I had 10 whole brain radiation treatments ending December 31. I tolerated them pretty well, brain fog, lots of fatigue but no nausea. I am still on steriods for swelling issues. (Oh and yes I lost my hair and it is starting to come back now.)

    I was told not to drive and I feel that I couldn't - I can't make a decision as quickly and my short term memory is pretty funny. Like I will take something out of the cupboard and then go looking for it in the cupboard again. (LOL) If you just have one met, they can probably do a more targeted treatment. All my sites have shrunk, some as much as 30% and apparently they continue to shrink for as much as months. Overall the consensus is that radiation is very effective for brain mets.

    There is a brain mets thread you should check out. Ask lots of questions of your oncologist and make the decision you are comfortable with.

    Good luck.

    Kelly

  • smiley47
    smiley47 Member Posts: 91
    edited February 2015

    Thanks Beachbum102:

    Hope your treatment is successful for you, I find it scary how quickly the cancer can grow. I have progression in about 4 wks when a treatment is no longer working to a new organ. I did very well on taxol for the se's and my doc told me in frustration that I am her only patient ever to be on taxol and have good blood counts and no SE's. We had both hoped to get more time out of taxol but now I'm trying navelbine and just hope it works.

    Keldel: Thankyou for your input and experiences with radiation, i have been following you for a while on this forum and a few others. Your personnal strength and sharing to our community is very much appreciated

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