Is there anyone out there that can advice me?

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swinnie971
swinnie971 Member Posts: 3
edited June 2014 in Triple-Negative Breast Cancer

Hi, i was diagnosed May 2010 with TNBC i had a 8mm lump removed, also 4 lymphs which tested negative. I had 3 lots of FEC & 3 lots of taxotar chemo, then 3 weeks of radio. 3 months after finishing radio the cancer was back in 10 out 18 lymphs they removed. They have now told me i have already had the best type of chemo i could have which hasn't worked. They have offered me carboplatin & gemcitabine chemo but said it is a stab in the dark to whether it will do anything!! I've been told the cancer is highly likely to come back & if it does i will have a few years left at the most. I'm so scared i don't no what to do, surely theres something better they can do than have a stab in the dark. Is there anyone else out there that has been in the same situation as me or can offer any advice? I have said i'll go ahead with the chemo and hope it does do something. hope someone can help.

Sarah.

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  • ma111
    ma111 Member Posts: 1,376
    edited June 2011

    Sarah,

    I am sorry you have to go through this crappy disease.

    I also had Taxotere and Carboplatin with Herceptin and it failed. I also have had some disease reduction with vaccine. The trail I am on you would not qualify for because you have to be a year post Taxotere. In July the NIH is starting a new vaccine trail, Dr Madan 301-496-3493. There are a few trails out there you may qualify for, clinical trails.gov, type in breast cancer vaccine.

    One in dallas is making vaccines after they take some tumor from you. It would only be a couple of trips there 972-566-3000.

    Let us know how things go, I will say a special prayer for you.

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  • Suze35
    Suze35 Member Posts: 1,045
    edited June 2011

    Swinnie - I'm so sorry you have to be going through this again.

    Have they given you a PET scan, or any other scans, to make sure the disease is still localized?

    I have an unusual case, but it might be helpful for you.  My cancer became resistant to chemotherapy at the end of my treatments, and at surgery I had a lot of disease left.  I had a PET scan after surgery, and they found 3 more nodes (infraclavicular) that had been missed, so more surgery.  When I started rads, we found another node (supraclavicular), which was included in my rads.  3 weeks in to radiation, ANOTHER supra node popped up, which we added in.

    Throughout all this, my scans for distant mets have been clear.  I am scheduled to start more chemo on July 6th, Xeloda and Ixempra with Avastin.  My oncologist has never called it a stab in the dark, although it might be - we are realists because we know this disease is tough one, but so far I am clear.

    Gemzar and Carbo are good choices to try - the platin family (Carboplatin and Cisplatin) has been shown to have good results with TN.  And if those don't work, there are still others to try.  Sometimes it is just a matter of finding THE chemo that works.  Every cancer is different.

    I know in the UK doctors are a little different.  But just because it is back in your nodes doesn't mean you can't beat it. 

    Please keep us posted.

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  • Suze35
    Suze35 Member Posts: 1,045
    edited June 2011

    Also, there is a great thread for TN women in the UK - the ladies there are very knowledgeable about the system, and can maybe help you out also.  I would recommend also posting there, they are very sweet.

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  • kidzrn
    kidzrn Member Posts: 28
    edited June 2011

    carbo taxol and avastin got me NED and Ixempra, Xeloda and Avastin got my friend NED...we are both triple negs.....christi

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  • mollynminnie
    mollynminnie Member Posts: 86
    edited June 2011

    Hi swinnie!

    I just wanted to chime in here and offer you encouragement.  I too was triple negative with a HUGE tumor and positive nodes.  I had dose dense chemo, radiation, Avastin- the works! I am coming up on my 5 year "cancerversary" in July! 

    There is so much hope out there!

    Please keep us posted!  Sending positive thoughts....

    Molly

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  • jloon
    jloon Member Posts: 30
    edited June 2011

    Gemcitibine and Cisplatin (plus Avastin) got me to NED (and I had several sites of distant metastis) but as soon as I stopped it, it came back worse - starting it up again but with Parps instead of the Avastin. If I had to do it over again, I would do the Gem'Cisp (or Carbo) right away as soon as the AC wasn't working to shrink my tumor.

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  • tibet
    tibet Member Posts: 545
    edited June 2011

    Hi jloon

    Was your original ex a stage iv or was it a recurrence of early stage? I heard to switch between chemotherapy combo can help.

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