Reoccurrences and treatment?

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labpsb
labpsb Member Posts: 40

Lynne has had a very rough time.

IBC Triple Negative IDC Grade 3

She had all the nodes removed with the breast down to the ribs about 1 year ago, in the same arm pit a tumor has started graded as IDC Grade 3 its about 1 inch.  Diagnosed Monday she has scans again today and surgery Thursday.

I am wondering what drugs you all are using to bring up to her Oncologist after the surgery to combat this new occurrence.

She had high dose radiation

Her Chemo in the past 18 months has been

A/C for twelve weeks

Taxol weekly for 12 weeks

Taxol and Carboplatinum for 12 weeks

So incases of a reoccurrences what are you being prescribed?  And has anyone had radiation more then one course in the same area?

Thanks

Lynne and Paul

Comments

  • TammyLou
    TammyLou Member Posts: 740
    edited January 2009

    I think it is possible that she could take some Abraxane (also a taxane like taxol).  Abraxane does not contain the (irritating) preservatives that may cause reactions in heavily pre-treated patients.

    Avastin is also a possibility.

    It seems to me quite likely that the hospital/cancer treatment's "tumor board" may be consulted in order to come up with a recommendation.

    Xeloda or Gemzar are also possibilities.

    My best understanding is that doctors are reluctant to radiate the same area twice, but I do know of one lady who has had it.  The areas are more carefully targeted these days and the radiation doctor may be able to control the angles to minimize the possibility of damage.

    Did the doctors double check the pathology?  Still triple neg?  (I'm assuming so.)

     I am so sorry to hear about your recurrence...sounds like you're having a tough time.

    Please keep us posted.

    Tammy Lou

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    Hi Lynne & Paul,

    I'm a nine time recurrence to chest wall area lady.  The chemo's are the same as for any other met.  Except Abraxane...this is for only bone & liver/lung mets. They like to keep this to the side for later if needed.  You still have local disease that is a good thing.  Here are the list on my chemo in order.  Things have changed a little in the three years I have been doing this.  The new wonder drug for TN is Ixempra or Navelbine.  But...most doctor will use up the other chemo's before going  this route.  I would ask about Ixempra if possible.

    ACT (Taxotere)

    Gemzar & Avastin & Carbo

    Trail Drug MDA -- Aeroplatinum

    Gemzar & Avastin & Carbo - 2x

    Ixempra & Zeloda

    Next drug will be Navelbine

    Tammy Lou is right they will not rad twice until there is skin involvement and even that is every rare.  After I did not do well on chemo's and do a "trial" with surgery to see if they could take it out. They rarely do surgery on a recurrence.  Well...I had so much scar tissue they could not find anything. 

    I hope you two find the best course of action . Lynn I hope you get a complete response with your next chemo.

    Flalady

  • labpsb
    labpsb Member Posts: 40
    edited January 2009

    Hello and thank you for the drug input..I will put it t good use very soon.  We had a devastating day today.  Started at 7:00 am just got home 10:30 pm.  Surgery tomorrow is canceled Lynne's scans showed problems in her right lung.  They tried to biopsy them (I was able to watch and help) however the spots would move as the needle was attempting to enter.  Our surgeon in LA is going to talk the the DRs in Fontana to setup a Thoracic Surgeon to get tissue samples.  But time is our enemy.  I will discuss an immediate Chemo regiment with the Oncologist in the morning.  And I have asked the radiologist to review the exact type and amount of radiation given in that area and officially reject my request for radiation.  I am so upset I can't catch my breath.

    Paul & Lynne

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    Paul & Lynne,

    Prayer's that she does not have a lung met.  And that you get into treatment soon.  I have a spot on my lung for rads three years ago.  Let's hope that this is what Lynn has.

    Holding you both tight right now....I'm off to chemo number 43?

    Flalady

  • PineHouse
    PineHouse Member Posts: 416
    edited January 2009

    Paul,

    I'm sorry it's been such a difficult time for you and Lynne.  Like FlaLady said, we hope that the lung spot is not cancer.  And you are right, the first step is trying to figure out what it is.

    As far as surgical removal of the armpit tumor, I don't think it's as dire.   Yes, time is an issue when dealing with mets, but a couple of weeks delay (while you make arrangements to test the lung spot) shouldn't make a huge difference.  I can also understand the doctors hesitant to radiate the area for 2nd time.  There's usually a "lifetime" cap of the amount of radiation each tissue can get.  If you radiate beyond that, you're risking some complications e.g. Lynne can develop lymphedema which is going to drag down QOL for life.

    Also sounds like chemo is probably a good bet.  In theory it should take care of the armpit and the lung if it's cancer.  I agree with FlaLady again that you probably should ask for Ixempra+Xeloda combo given Lynne's chemo history.  But again, as TammyLou mentioned, there's plenty of other chemo to try next if for some reason Ixempra or Ixempra+Xeloda don't work out.

    Let us know how it goes with the Fontana thoracic surgeon.

    FlaLady, I'm so glad Ixempra has been able to knock out the skin mets dead!  Do you think you'll continue on "maintenance" Ixempra+Xeloda after going NED?

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    Pinehouse,

    I have a Pet scan next Tuesday. If it looks good... I will have to stop chemo due to neuropathy.  I will do Avastin and possibly Xeloda for a few months and than go back to Ixempra.  My onc say the early research showed that Avastin worked best you did it with no chemo for a while, and than throw in the chemo later and this would make the chemo more powerful.  He has been talking to the researchers about this.  So he feels the break will help me in two ways.  Kind of scary but I need the break or my driving days may be gone soon again. My onc. worked at the National Cancer Institute when he was younger.  He enjoys the research side...thankfully.

    What treatment have they decide on for you?

    Flalady

  • PineHouse
    PineHouse Member Posts: 416
    edited January 2009

    FlaLady,

    Crossing fingers for best PET result possible.  You deserve a chemo break!  Darn that neuropathy creeping back on you.

    I'm still on Doxil+Cytoxan which has been working great for lung mets.  Scan is not due for another 6 weeks.  I hope it works some bit more.

    The brain mets were supposedly already taken care of with Stereotactic.  Just waiting for follow up scan in 10 weeks.

    So in the meantime we're trying to arrange for a cruise getaway, hoping to forget about cancer business for a week... (by the way, I wish we're in Florida, where there are plenty of choices for cruises - it sucks on the west coast, not much is going on).

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    Pinehouse,

    I do wish you were sailing from Florida...so many islands in just a day or two away.  I was thinking the same thing about a little get away while not on chemo. I have to wait and see if my hands/feet will get worst after stopping chemo... like I did last time. It was worst two months later!  If they don't... I'm thinking trip time.

    What is Stereotactic? This is a new term for me.

    Flalady

  • PineHouse
    PineHouse Member Posts: 416
    edited January 2009

    FlaLady,

    Stereotactic Radiosurgery (SRS) or Gamma Knife or Cyberknife (same type of radiation machine, just different brands), are commonly used tumor (brain tumor, some liver, could be breast too) ablation using radiation.  No knife or scalpel involved.  High-dose radiation is delivered directly into the tumor, with insignificant doses affecting the surrounding tissues.  It was a loooong day, but at least it was just one day.

    Hope for your good result next week!

  • SoapMaker
    SoapMaker Member Posts: 157
    edited January 2009

    So sorry you Lynne having such a difficult time. Taxotere is pretty powerful. When I was diagnosed, it wasn't a first line treatment. At that time it was used only for mets. I did a lot of research and told my onc I wanted Taxotere, not Taxol, as was his plan. I told him that I did research and found that Taxotere has a 50% greater response rate than Taxol. I got the Taxotere. Not too long after I finished, Taxotere was made a first line treatment for bc. I know there are many new powerful meds out there, I just haven't kept up with them. Sending thoughts and prayers your way.

    -------------------------------------------------------------------------------

    Where is the cureCry

    www.truefacesofbreastcancer.org

  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited January 2009

    I was given Taxotere as first line of treatment three years ago.. ACT my "T" was Taxotere.  I was told I received this because how aggressive my disease.

    Pinehouse,

    I've heard of Cyberknife & Gamma knife.  I tried to get either one done at one point.  Insurance would not do it.  Did you have any problems with yours?  I was involved with a large cyberknife clinic on trying to get this over turn with Florida insurance companies.  I did not follow up to see the out come...by than I had skin mets again. I'm so glad it was just one treatment and not whole brain rads.  Does make me wonder if we should be treating other recurrences this way instead of more toxic chemo.  As stage iv we need chemo breaks.  I think we should zap easy to reach areas and save chemo for other mets.

    Flalady

  • labpsb
    labpsb Member Posts: 40
    edited April 2009

    We just can't seem to catch a break.

    Since posting this thread Lynne has started Taxotere and Avastin

    We stopped chemo for surgery under the arm (tumor removed) same type and aggressive grade

    Lynne went into surgery again a few days later and had both tumors in the right lung removed (same type and grade of cancer). 

    Back on Taxotere, then she noticed a change in the arm surgery area; we just got the results more cancer,

     She stopped the taxoter and changed to Xeloda and Avastin.

    Lynne is having a very hard time not giving in the process and the cancer

  • labpsb
    labpsb Member Posts: 40
    edited September 2010

    My love collapsed and passed away on my birthday in July...I thought I would be prepared (ha what a joke) I am missing Lynne more every day..

    Lynne Bedoe 08/18/58  to 07/12/10  If you would like to see a picture copy and paste below 

    www.legacy.com/obituaries/signonsandiego/obituary.aspx?n=lynne-ann-bedoe&pid=144206394

    Paul
  • Meggy
    Meggy Member Posts: 530
    edited October 2010

    God Bless you Paul.  May God take care of both you and Lynne.

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