Mestastatic triple negatives

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JerseyMom
JerseyMom Member Posts: 46

I have just been diagnosed stage 4 (lungs and spine). Have a pet/ct scan this week to see if it is in any other parts.

Just wanted to know other stage 4 triple negative sisters and what treatment they are in.

-Ren

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  • tibet
    tibet Member Posts: 545
    edited May 2010

    Ren

    I PMed you. I am so heart aching to hear about this. Did they do an open whole body MRI to find that out? I know you had a clean bone scan.

    Did they do a whole body scan during the past 3 yrs post treatment? You told me once you had only breast MRI once every yr in August.

    Love and hugs to you. Alex

  • angelsabove
    angelsabove Member Posts: 363
    edited May 2010

    Ren.....SO sorry to hear this.....I am going through a scary road right now myself. I was just 10.5 weeks post radiation treatment and I started having shoulder and neck pain. I called my Doctor and the nurse told me it sounded like a muscle. She said I have you down to do protocol scans middle of June and then see the Doctor. I said yea but IT REALLLLY HURTS....she said well if it will make you feel better we can move the scans up.....I said yea I would like to do that. Well FAST FORWARD.....scans revealed 4.5 by 1.5 cm tumor attatched to my chest wall. I do not have any breast. I did a double mastectomy 5/21/2009. I did ask my Dr. yesterday if it was ANYWHERE else and she said no. It is located under the clavical area above the first rib and on the chest wall........Husband and I are going for a second opinion to Cancer Treatment Centers Of  America. We fly out Tuesday evening.......I want you to know you are in my thoughts and prayers and I WISH YOU ALL THE BEST.....and as far as chemo....I am not sure just yet for me what that will be.....

  • Titan
    Titan Member Posts: 2,956
    edited May 2010

    Angel and Ren...thinking about you all the time...I'm hoping for some good news for BOTH of you..love you ladies...huge hugs to both of you...

  • tibet
    tibet Member Posts: 545
    edited May 2010

    Angel

    Did they do a scan before or right after your double mastectomy? Usually they should do that to make sure there was no tumor left in the breast or attached on the chest wall. Was your original tumor very close to the chest wall? Hope your second opinion will be good news.

    Love and pray for you.

  • angelsabove
    angelsabove Member Posts: 363
    edited May 2010

    Newalex.....I did scans prior to having my breast removed. We did the surgery. I took a three week break and then started chemo. I did 12 weekly Taxol and then Four Tri Weekly FAC. I ended chemo the end of November 2009. Before I started my 32 radiation treatments, My radiation oncologist wanted to do a pet scan. I said ok....We did that on December 14th 2009. I was given NO EVIDENCE OF DISEASE. We started and completed radiation. Only 10.5 weeks post radiation treatments the pain started. Now here I am with what they call a chest wall recurrence. Yes the original tumor seemed to be deep. My husband and I are flying out tomorrow to go to Cancer Treatment Centers Of America in Zion. That is right outside of Chicago. I have been in a GREAT deal of pain....and all the pain meds ares causing me to vomit. I am SO DISCOURAGED.....Ready to get to Cancer Treatment Centers so I just MAY GET SOME HOPE......

  • Nanalinda
    Nanalinda Member Posts: 826
    edited May 2010

    Hi ladies:  I have had mets since July 08.  My mets are to spine, and lymph nodes near clavicle and in mediastinum.  I started on Taxol/Avastin which worked for 10 months, then I started Gemzar and was on that for 6 months, next was Navelbine for 3 months (that did not work at all); I just started Ixempra/Xeloda and hope to see good results from this new tx.  In the middle of all this tx; I had rads to spine last December for severe pain.  The rads worked very well and I no longer have severe pain in spine.  I know this is a hard time for you being newly dx with mets, but you can continue on with good QOL.  I have been living with mets for nearly 2 years now, and really don't feel that bad.  I go to my grandchildren's ballgames, play golf, and garden.  I do suffer from fatigue at times and take a nap when I need to.  Please feel free to PM me if you have questions, or just need a shoulder to cry on.  Linda

  • HairSprayMom
    HairSprayMom Member Posts: 251
    edited June 2010

    Just wanted to say I THINK YOU LADIES TOTALLY ROCK! Kick cancer right in the booty!

     XOXO,

     Regina

  • mossybaby
    mossybaby Member Posts: 49
    edited June 2010

    Hello.  I didn't look into any old posts so I don't know what your whole story ot treatment but I can tell you already that you have already given me hope.  You have been kicking this things ass for 3 years now and have no doubt you will contine to do it.  My bad boy has had its reoccurances quickly so I've had quite a bit of chemos and radiations surgeries etc... Currently, my onc had me on gemzar/carboplatin and avastin.  It seems that this avastin does increase chemo's efficiency.  If these start slowing down, then we will look into parp allowances to give it another boost.  Good luck on your coming journey.  They have alot of different options for us , my wish for you is that they pick the one first that nips it in the bud so you won't have to run the marathon just the 50 foot dash.  Love and Happiness - Yvonne. 

  • tibet
    tibet Member Posts: 545
    edited June 2010

    Hi Yvonne

    May I ask, were you dx with IBC the first time or it was an IDC and had a recurrence in the skin that became IBC? Did you have nodes positive the first time dx or later ?

    Thanks and love to you. Alex

  • justpayton1
    justpayton1 Member Posts: 786
    edited June 2010

    I have mets..officially March 2010, my mets are in my mediasonial lymph node, supraclavcular, internal mammary, and a coulpe othe rnodes.

    I am being treated w/ Gemzar/Carboplatin and that is working for me. I have 2 more cycles to complete and than keeping fingers crossed to get a PARP for compassinate use.

  • angelsabove
    angelsabove Member Posts: 363
    edited June 2010

    Just u sound like me. I have mets to my mediastinal node, upper left mammary node, I am now under the car of Cancer Treatment Centers Of America. They are evaluating a small spot that lit up in the liver. No biopsy done for that. Counld be nothing, but My Oncologist started me on Chemo Last week. Actually one week ago today. My new cocktail is Taxotere, and Carboplatin. I will take these every three weeks. Then I dont know what. I assume we SCAN......I have heard about the PARP inhibitors. Are those for just the brca 1 or 2?   

    I am BRCA 1 and 2 negative.

  • justpayton1
    justpayton1 Member Posts: 786
    edited June 2010

    Angels- I am BRCA 1 but the Parps are showing promise w/ the TN's. I will send you a PM with the name and info of one that was discussed in Cure magizine. A couple are being "fast tracked" because they are showing great promise w/ TN and should be out late summer early fall for compassinate use. How many cycles of chemo do you have?

    I had 3 and than a scan which showed no progression..but I have 3 more to do..

  • stephanief
    stephanief Member Posts: 200
    edited June 2010

    H i guys, I was at the onc today, and will be starting taxotere and xeloda next week. I have mets in my underarm nodes with some mets under the skin that are popping up under my arm-very freaky. I also have a mass on my adrenal gland. not looking forward to starting chemo again! I will keep you posted on how this combo works and SE. oh yeah, and now they think I may have a blood clot under my arm, so I get daily injections of blood thinner. yikes!

  • angelsabove
    angelsabove Member Posts: 363
    edited June 2010

    Stephanief .......I am sending you well wishes and hoping that the blood clots get better. I also hope the chemo does wonders.....I love all of you.......Hang in there.......

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