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Triple Negative Stage IV

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Comments

  • kaayborg
    kaayborg Member Posts: 576
    edited December 2015

    Hello, Rossileo! This is not a welcome but just a hello, as I'm hoping your scans show a great big nothing and you can get on out of here! I think your doctor is wise to go ahead and treat as mets in the interim. No reason to give a potential enemy any time to gather more troops. Keep us posted on your results. Praying!

  • rossileo18
    rossileo18 Member Posts: 55
    edited December 2015
    Thanks Kaayborg,
    I hope it's still local, but a persistent cough and dull ache around my chest that have gradually worstened over the past week have me worried it's in my lungs. Trying hard to be positive but the fear can be overwhelming. First chemo didn't work -- some areas responded, but some developed new tumors. TNB is so scary.
  • Homehelp
    Homehelp Member Posts: 64
    edited December 2015

    Being in the medical field , if there is progression can you be considered for any of the new trials ?

    Mayo clinic trial with a vaccine

    Immunotherapy with chemo is having a response of 91%!

    may other trials out there, I think it is worth having that conversation and seeing if your MO can get you in based upon your previous treatments and if you qualify .. but after the meeting in San Antonio there seems to be many new drugs and treatments on the horizon , so hopefully a new approach will help

  • rossileo18
    rossileo18 Member Posts: 55
    edited December 2015
    Homehelp,
    Thank you for your helpful suggestions. I'm just starting xeloda and can still hope that it will keep things under control. However, as i am recently diagnosed I am still quite depressed and pessimistic about the whole situation.

    On the other hand I did see the summaries from SA conference and was gratified to see that there are alternatives if the xeloda doesn't work. I'm at a university hospital and my MO did mention that possibility.

    I will look at the Mayo trial. Best to you for the holiday season.
  • Rosieo
    Rosieo Member Posts: 200
    edited December 2015

    Kaayborg

    Thanks for your input. Yes I think my RBC so low, is why I feel like a dishrag :-)

    I guess I don't want to complain to my MO because I am afraid he will prescribe a transfusion. but I am very exhausted, can't really do much of anything and I even feel the exhaustion to the point of not feeling well. I went for my CT scan today and am scheduled for chemo on the 28th. Maybe I can hold out till then. I just pray my CT scan shows some improvement.

    rossielo Sorry to hear of your recurrence and prayers that there are no mets.

    MERRY CHRISTMAS AND HAPPY HOLIDAYS to all you wonderful ladies. Let us prayer our new year will bring us NED.

    Rosieo

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited December 2015

    Happy Christmas to all my fellow battlers. Love Barbara

  • rossileo18
    rossileo18 Member Posts: 55
    edited December 2015
    Rosieo,
    Thank you for your prayers and hoping that your CT scan results are good.

    To all the brave women in this board -- I am thinking of you and wishing you the best of the season.
  • Texasrose53
    Texasrose53 Member Posts: 290
    edited December 2015

    Wishing everyone a belated Merry Christmas! Hoping the new year brings everyone some comfort as we continue on our journey!

    Prayers for all you wonderful ladies!!!

  • Rosieo
    Rosieo Member Posts: 200
    edited December 2015

    Good morning to all the wonderful ladies on this forum. Today I go to the MO to get the results of my CT scan last week. I am so afraid. My husband is going with me although he is just starting to get his strength since his open hear surgery last month. I pray for some change for the good.

    Rosieo

  • rossileo18
    rossileo18 Member Posts: 55
    edited December 2015
    Rosieo,
    My thoughts are with you. Hugs and hoping for good results.
  • Rosieo
    Rosieo Member Posts: 200
    edited December 2015

    Hello Ladies Well back from oncologists. My cat scan showed that one of my lung nodules (the largest one) has increased in size. The old one was 3.5 cm craniocadad and a maxium transverse diameter of 2.1 cm.

    Old one 2.1 x 2 x 3.5 . New one 3 x 4.2 x 4.8

    I am sending this as I copied it off my report hoping someone knows more about what it means other than it got bigger.

    What is the difference between an inch and a centimeter? Would this mean that in inches that it increased from 3 and 1/2 inches to 4 and 8/10 inch?

    Dr said now he wants me to go for a Pet Scan!!

    Rosieo

  • kaayborg
    kaayborg Member Posts: 576
    edited December 2015

    Rosieo, I was anxiously reading through new posts to get to your results and am very sorry you did not discover the shrinking of your tumors. I like you tend to dwell on the numbers...exactly how much bigger or smaller did they get? I even have sketches in a notebook. I do think, however, that it is not the actual numbers that matter most, rather simply the fact that your current treatment is not shrinking or keeping the tumor sizes stable. Praying that your PET gives good direction for your doctor in deciding what is your best treatment course. Hang in there. Sending much hope and prayer your way that the right drugs find you and soon.

  • Rosieo
    Rosieo Member Posts: 200
    edited December 2015

    kaayborg

    If you have sketchs how much larger do you think this tumor has grown..:-)

    The dr said perhaps because we did not start chemo till Oct 1 had cat scan 7/20/2015

    but I don't think I agree with that.

    Thanks for your help

    Rosieo

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited December 2015

    Hey Rosieo...I could actually understand his thoughts in regards to the time between the CT and the date you started Chemo. Are they going to change your chemo? What are you on now?

  • Rosieo
    Rosieo Member Posts: 200
    edited December 2015

    Texas

    I am on gemzar and carboplatin. The first few were only Gemzar (3) but then becasue of my platelets going down the decided to give m gemz and carbo once together every three weeks. I only had three treatments of all three. Had the Cat scan and now scheduled for July 7th for pet scan.

    Worried.

    Rosieo

  • kaayborg
    kaayborg Member Posts: 576
    edited December 2015

    Rosieo, in my crude 2d drawings which aren't entirely accurate, I'd say your tumor went from a large supermarket green grape size (think about the biggest ones in the bunch) to the size of a medium to large egg. My onc said that small progressions wouldn't necessarily change the course of treatment as you want to get the most out of every drug you're on before switching. Unfortunately, I have no idea what is a small versus large progression. I suspect it might matter where the met is and how you are feeling. My mets are all liver and they are all much larger than yours but I again, I think size might not matter as much in the liver. It can function on such a small percentage of health...less than 50% for sure I can say based on my reports. Praying for your scan. You do mean Jan. 7, correct?

  • Rosieo
    Rosieo Member Posts: 200
    edited December 2015

    kaayborg Yes Jan 7th (Duh)

    My mets are in the lung and the lymph nodes in the middle of my chest probably from the radiation treatments that I had primarily to my chest for Hodgkins 35 or more years ago. That is why when I got the first breast tumor I could not have lumpectomy with radiation. It is almost a definate that anyone who had had radiation for Hodgkins will end up with breast cancer. My oncologist also agreed.

    Rosieo

  • Rosieo
    Rosieo Member Posts: 200
    edited January 2016

    HAPPY NEW YEAR TO ALL THE BRAVE LADIES ON THIS FORUM.

    LET'S ALL PRAY FOR NED FOR MANY YEARS. IT IS POSSIBLE.

    ROSIEO

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited January 2016

    Happy New Year to you too Rosieo

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited January 2016

    Hi everyone. Happy new year !  Sorry I've been absent. So much going on ugh. 

    I just finished 14 WBRT.  It hasn't been fun but dl far not as bad as I anticipated. Now comes the hard part, waiting for the crash and recovery. I meet with my onc Thursday to decide what chemo to start.  She had last mentioned carbo but i don't think a decision was reached. I'm kinda curious why not xeloda as I see so many of us TNBC on it. 

    I hope the new year finds us all a cure !

  • Purplegurll
    Purplegurll Member Posts: 89
    edited January 2016

    Hi ladies,

    Iwould appreciate hearing about your experience with xeloda. I just learned that my triple negative breast cancer has spread to two spots in my spine and to lymph nodes in my chest. I have read that xeloda can be effective for stage IV, but what is its effectiveness for triple negative Stage IV? If you are on or were on xeloda, how long did it work for you? It has been about a year since I finished prior chemo for triple negative Stage II and with this new diagnosis, I'm trying to understand what to expect. Thank you for your thoughts.

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited January 2016

    Good Morning Ladies....so a little good news yesterday. My TM's have gone down again. Last reading for my CA 27-29 was 26.2 three weeks ago. This week they are 19.6. I will have another CMF treatment on the 22nd then we will do either a CT or PET to see how effective the CMF has been. Tolerated it very well so far.....my eyelashes are actually growing back. In a few weeks I think I can ditch the fake ones (WHOO HOOO). Hair is still pretty thin so the wig has stayed on my head. Anyway....hope everyone has a good day today.

    Much (((Hugs)))) to you lovely ladies!!

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited January 2016

    This is great news Texasrose !!!  Woot 

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited January 2016

    Barb what was the outcome with your onc visit??? Hope you're doing ok. 

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2016

    So glad to hear it, Texasrose!

    Still doing gem/carbo here without delays, though they are sure to come soon. I technically failed platelet count yesterday but just by one (74) so they let me slide. RBC and WBC were at the minimum as well.



  • kt1966
    kt1966 Member Posts: 1,021
    edited January 2016

    Hi Purplegurll,

    I was on xeloda last year for my mets. Although I was ER/PR+ they'd become resistant to hormonal treatments. Xeloda worked for 9 months for me before I had progression, but I know some people get years out of it.

    Check out the All about Xeloda thread for more info....

  • rossileo18
    rossileo18 Member Posts: 55
    edited January 2016

    purple girl,

    I'm not officially stage 4 yet -- I'm TNBC stage 3 with recurrence In chest wall and suspicious area in bone scan -- but I'm being treated same as stage4 and am on xeloda. I did some searching on the net when I was prescribed and Mayo clinic site says it can be effective especially for TNBC/BRCA. The university where I'm being treated has experience with TNBC, so I hope they know what they are doing.

    Good luck with xeloda.


  • Lauralind5
    Lauralind5 Member Posts: 158
    edited January 2016

    Well I'm starting carboplatin next Thursday. Weekly infusions. There's some evidence that it crosses the bbb so we are starting with that. Any one been on it ?

  • kaayborg
    kaayborg Member Posts: 576
    edited January 2016

    I do both gemzar and carboplatin, two weeks in a row, then one week off. They've both been good to me and bad to my liver mets thus far. Best wishes to you Lauralind.

  • Purplegurll
    Purplegurll Member Posts: 89
    edited January 2016

    Thank you kt1966 and rossileo for the replies on xeloda and for mentioning the xeloda thread which also has lots of good info. Lauralind, I had Carboplatin and taxol together. One or both gave me some neuropathy and I take gabapentin nightly for that.

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