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Triple Negative Stage IV

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Comments

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited September 2015

    Thank you Bosco and Lauralind! I am celebrating! Did a little shopping and enjoying a glass of champagne on my back porch looking at the stars! Celebrating life!

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited September 2015

    Texas love that !!

  • Nanita_daughter
    Nanita_daughter Member Posts: 13
    edited September 2015

    I am writing on my mothers behalf…

    She is 59 recently diagnosed with Stage IV TNBC to bones (L3, T10) and multiple lung nodules. It has been a long road since suspicion. All this was found incidentally when she got a CT scan of her abdomen and found the lung nodules.

    She had stage II TNBC in 2011, T.M. and mammo were always normal.

    Mom had to get repeat biopsy of lung nodules to confirm she was still TNBC. Found out begging of September that it is again TNBC. She is being considered for a clinical trial with new medication and paclitaxol weekly. She just had another week of test, CT scan of abdomen pelvis again and MRI of brain. I have been reading your stories, don't have a profile yet, but your stories give me much hope!

    Praying to God everyday that things will move in a positive direction soon…the waiting for test results and starting treatment is very stressful at times, we are upset, we cry, then laugh, say positive things! quite an emotional and difficult time. I always tell her I come to these forums and find Hope with all of your stories.

    Thank you all for sharing and praying for every lady that has to go through this….


  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited September 2015

    Nanita daughter

    Saying prayers for your mother. It is a hard road we are on. I am on my second drug but it is working and hoping for the best for your mother. Love Barbar

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited September 2015

    I saw my oncologist last week after three rounds of xeloda and his view is that it is working. Not NED but cancer definitely smaller so good news at least Barbar

  • lbgal
    lbgal Member Posts: 64
    edited September 2015

    Yaay Barbdenise! This is really great news!

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited September 2015

    Yay Barb ! that's great. how are your side effects?

  • lbgal
    lbgal Member Posts: 64
    edited September 2015

    Nanita, sorry about your mom. You will find lots of support from the amazing ladies here. There is also a thread for bone mets specifically (triple negative or not) and the ladies are very knowledgeable and supportive.

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited September 2015

    Barbar...Such awesome news!! Praying for continued success!

    Nanita....I am on and have been on the weekly Taxol since May of this year. After 8 weeks there was shrinkage and then after another 8 weeks I went NED. I had 1 lung nodule, 2 nodes and 1 met on my sternum! There is Hope! Prayers being sent for your mother and you!

    Julie

  • Adnerb
    Adnerb Member Posts: 727
    edited September 2015

    Yayy for BarbDenise!!!

    Love and hugs,

    Brenda

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited September 2015

    I think I'm going to put the taxanes on the shelf for a while. These side effects just aren't getting better. 

    What other chemo drugs have yall been on and what were the side effects?  I go back Thursday and we will be having a drug change discussion. 

  • Bosco19
    Bosco19 Member Posts: 177
    edited September 2015

    Laura

    I had 6 months on Xeloda w v few side effects but progression so switched in February to Gemcitabine and Cisplatin. Main side effect is to knock my blood counts, particularly platelets so I get fatigued easily.

    I also currently take Avastin (for brain), Zometa for bones and Keytruda which is an immunotherapy drug.

    You'll see other drugs below. I know that for the next stage my onc is already considering possibly another go with CMF, or enzulatimide or Ibrance although he's not changing drugs yet.

    Hope you have a good discussion.

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited September 2015

    Thanks Bosco, it seems I remember Xeloda being next on her list but I not sure of memory or if that still stands true. Avastin for brain? Interesting, that's not been brought up to me. Ive been having some slight issues with balance etc, and at first I thought it was the increasing neuropathy that is worse on the left side but now Im wondering (ie paranoid) that I have another brain tumor. I don't have scans for another 3 weeks, I will probably ask to have that moved up. Should be an interesting afternoon !

  • BarbDenise64
    BarbDenise64 Member Posts: 98
    edited September 2015

    hi. Side effects are certainly increasing. My eyes are sore and feet are almost unbearable but am trying to stick it out until I see the oncologist after this next three rounds. Best wishes to all Bar

  • Lauralind5
    Lauralind5 Member Posts: 158
    edited September 2015

    As I suspected no chemo today. Scans have been moved up to next week and then I'm scheduled to start havalan/eribulin. My Onc said since I had such a great response to the taxanes she wanted to stick with something that works in s similar manner. I also got an rx for lyrica for the neuropathy etc 

    I'm ok with this plan and if I'm still NED we will talk about a mini break. So it's all good ! 

  • Bosco19
    Bosco19 Member Posts: 177
    edited September 2015

    Barb - my eyes got really gritty and it was diagnosed as blepharitis. Much better if I use a warm compress on them for 5 mins in the morning to soften the crust, then use baby shampoo in hot water and a cotton bud to wash away the debris

  • lbgal
    lbgal Member Posts: 64
    edited September 2015
    I was on Xeloda daily pill for a year with minimal side effects just my feet being a bit sensitive and peeling. Then carboplatin and gemzar Infusion once every 3 weeks and I had moderate nausea and tiredness which was tolerable but it stopped working. Now I am on halaven. Is anyone else on halaven? What side effects do you have? Mine are all over the place.
  • Beachbum1023
    Beachbum1023 Member Posts: 364
    edited September 2015

    TexasRose, great news, I hope I hear the same! Cheryl

  • fhaido
    fhaido Member Posts: 10
    edited October 2015

    I would also like to learn more about Halaven. My mom had progression with Gemzar and it looks like the onc wants to use Halaven next.... This will be her third chemo. Thanks!!

  • SpiritBlessing
    SpiritBlessing Member Posts: 552
    edited October 2015

    Hi Peeps,

    Haven't been on for a bit. Been busy with my DH and his medical issues. Now we are dealing with him being dx with pancreatic cancer that has mets to the liver and stomach lining (small spots). Just amazing that this is all happening right now along with my dx from 2 years ago.

    So I was on Xeloda and had to come off as it was so hard on my feet. They were like on fire by end of 2 months. They looked like they were burned and it was hard to walk on them. They lowered the dose and it got a little better but after a scan it didn't do a thing so they took me off did a wash out and I am on Eribulin now and have been for 3 cycles. SE's are more fatigue and my appetite is challenged. No issues with neuropathy on my hands and feet as of yet.

    Glad to hear the news Barbar...I hope to hear NED. I just had scans yesterday so praying it is working.

    Stay strong ladies...We got this, right?

    Lucy

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited October 2015

    Hey Lucy, Glad to hear from you! Was starting to worry about you. Praying for you and your husband! Make sure and let us know what your scan results are!! Praying you get GREAT NEWS!

  • Rosieo
    Rosieo Member Posts: 200
    edited October 2015

    Bosco

    I had my first chemo of Gezmar and Carbo on Oct. 1. Second one was to be Oct 8. When they checked my blood they said it was only 102 and should not be any lower than 150. I really wished they gave me a paper showing what these figures were, however I could not get my second treatment.

    Could this be number for blood platelets. I must be more aware at my next visit.

    As much as I did not want this chemo journey, I was disappointed to not be able to get my 2nd tx.

    :-) Rosieo

  • Bosco19
    Bosco19 Member Posts: 177
    edited October 2015

    Sounds like platelets where the "normal" range is 150-400. Normally they test platelets, white blood cells, neutrophils and haemoglobin. I would ask them to give you a copy of your blood results each time they do tests? Worth discussing with your onc what you can do. There are various treatments to bring them up (transfusions of platelets, immunoglobulin, romiplostim etc).

    My platelets were 80 last week but onc went ahead w treatment. I think my onc is prepared to treat at low levels because he knows they are not unusual for me. Tioday they are 31 but hoping they will come back up before Mon when my next treatment is due. I don't think he will treat if below 50. I knew the new drug I started 2 weeks ago would take a month to kick in so not surprised by this. They have dropped as low as 5 before!

    I know how upsetting it is when you're psyched for a treatment and it doesn't happen. What 's the onc saying about next treatment?

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited October 2015

    Hey ladies...just checking in! Been busy 2 weeks. I had a wreck on the way into work last Wednesday...sandwiched between 2 cars on the interstate (we were bumper to bumper rush hour). Started experiencing breathing issues that next morning and ran fever. Called the ONC she thought maybe a PE but I am already on Xarelto to control those. Anyway after 2 days fever broke. Labs did not show anything that would be of concern. Thinking the breathing issues were actually some bruised ribs from the accident, and when I inhaled deeply it hurt from that. Was still able to do my Taxol treatment last Friday. Had an enjoyable evening last night...we went to a Don Henley concert. Some of the songs brought back so many memories of how things were so many years ago (80's), it brought tears to my eyes. Wishing life was as simple as it was back then!

    Prayers for all of you lovely ladies!

  • Rosieo
    Rosieo Member Posts: 200
    edited October 2015

    Texas Rose

    So glad to hear that you are ok after your accident. And yes you are so right. Too bad things can't be as simple as "back then".

    May I ask do you only get Taxol.? Weekly?

    Thanks

    Rosieo

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited October 2015

    Hey Rosieo.

    Well I get Benadryl and steroids prior to the Taxol weekly. And I do get every 4th week off. So far Taxol took me to NED after 16 weeks. Scan in 3 weeks......hoping I am still NED.

    How are you doing

  • Rosieo
    Rosieo Member Posts: 200
    edited October 2015

    Texas

    I pray your scan will still be NED

    I only had one treatment of Gexmar and Carboplatin on Oct 1. Then the next week that I should have gotten another treatment my platelets were too low. Last week they had come up so I will probably have another treatment on the 22 nd. With all the time that has passed since I found out that my bc has metastazied and I have only had one treatment, I fear it has gotten worse. I know the pain in my back is worse. It is always on my mind.

    Rosieo

  • Texasrose53
    Texasrose53 Member Posts: 290
    edited October 2015

    Rosieo,

    Thank you Rosieo! How often are you suppose to have your treatments?

    Julie

  • Rosieo
    Rosieo Member Posts: 200
    edited October 2015

    Texas

    I am not sure :-( I think Gezmar & Carbo one week, then one week of only one of them (I don't know which one) and then one week off. I think :-(

    Scheduled for Thurs the 22nd.

    Rosieo

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited October 2015

    Many here have donated . Thank you !........Wandering around and cheerleading again :)


    Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs :)

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    https://community.breastcancer.org/forum/110/topic/834331?page=1

    Link to the mainboard donation page

    https://secure3.convio.net/bco/site/Donation2?df_i...


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