Follow up chemo for Triple Neg?

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walstib123
walstib123 Member Posts: 11

Hi All,

I have been reading more and more about possible follow-up chemo for Triple Negative Cancer.  Carboplatin and Avastin are the two that I have come across the most.  Has any one had any experience with this?  I was diagnosed with stage III Triple Negative cancer with node involvement.  I did dose dense neoadjuvant chemo (AC followed by weekly Taxol).  I have a double mastectomy (BRCA1 positive also) scheduled in two weeks.  My most recent PET scan was clear (even in the affected breast!) and my tumor markers dropped to the 20s.  I asked my oncologist if he would recommend any more treatment if they found any leftover cancer after surgery.  He said that it was not really standard treatment but we would re-evaluate after surgery.  He mentioned that side effects should be seriously considered especially when additional chemo has not been shown to make a difference.  Has anyone had any experience with this?  Thanks so much!

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Comments

  • StefS
    StefS Member Posts: 157
    edited January 2009

    I don't have experience with this, but I'm also a Stage 3 triple neg with positive nodes and am in Hamilton. Feel free to PM me if you wish.

    Hopefully after your double mast, it will show no cancer left. That is great news that the PET didn't show anything.

  • kelty
    kelty Member Posts: 80
    edited January 2009

    No experience. My Onc suggested me to attend Avastin clincial trial, but then found out my rpevioud low platelet problem and told me that I don't qualify.  He said it's still not clear how effective Avastin will be, if in a year or two, there is definite positive result, he will consider to put me on Avastin.

  • TNhusband
    TNhusband Member Posts: 24
    edited January 2009

    My wife (stage 2b) finished neo-adjuvant chemo (Dose Dense AC/T), had her surgery and although a great response (~80%), had some cancer left in 2 nodes and a small amount in the breast (removed w/ lumpectomy) so not pathological complete response.  The onc now has her starting Xeloda, Zometa, and Navelbine prior to radiation due to the residual cancer and TN status.  It sounds like this is a newer approach and more aggressive, but we certainly want to be aggressive with this type of cancer.

  • sftfemme65
    sftfemme65 Member Posts: 790
    edited January 2009

    Hi there.  I did 4 DD A/C with Avastin, then 12 weekly taxols with Avastin every 3 weeks, then I did 10 Avastins alone every 3 weeks.  It was a clinical trial.  I had my surgery first then treatment.  I hope Avastin proves to be very beneficial for us.

    Teresa

  • tibet
    tibet Member Posts: 545
    edited January 2009

    TNhusband

    Did your wife have 2 nodes positive or more prior to the neo-adjuvant chemo? I am on DD E/C and 12 weekly taxols and Carboplantin. I don't know if it would be beneficial to have  xeloda, or sthelse afterwards. I had surgery before chemo and I had 1 cm tumor and 1 micro mets in one sentinal node.

  • TNhusband
    TNhusband Member Posts: 24
    edited January 2009

    Hi newalex: we just had a node biopsy done on one node before the chemo so only know that she had at least one positive node (obviously, now we know it was at least two).  She had one small tumor remaining in one sentinal node and micromets in another post chemo.  If the chemo would have wiped out the cancer, she would not have had the recommendation for add'l chemo.  But, since there was some remaining cancer (although much smaller) the onc recommended the xeloda (chemo),navelbine (chemo) & zometa (bone strengthener - see studies from the San Antonio conference on it).  It sounds like there are various types of add'l chemo people are taking and I think it can't hurt to ask your oncologist if they think you may benefit from more after you are done - i think it depends how aggressive your cancer is viewed.  But I've also heard of many successful TN cases from just the original round of chemo.  My wife tolerated the first round fairly well, so we thought we should be aggressive and hit it again after surgery, as the oncologist recommended.

  • walstib123
    walstib123 Member Posts: 11
    edited January 2009

    Thanks TNhusband,

    This is exactly the type of info I was looking for.  Sounds like your oncologist is really on top of things.  Mine also put me on Zometa based on the recent findings that it might prevent reoccurrence in bone.  How often is your wife getting the Zometa? 

  • TNhusband
    TNhusband Member Posts: 24
    edited February 2009

    My wife gets Zometa once per month for 12 months, then every six months for several years, if I remember correctly.  The Navelbine is once per week for 12 weeks and the Xeloda is daily (pill) on weekdays (for 12 weeks).  How often are you receiving Zometa?

  • Rovergirl
    Rovergirl Member Posts: 194
    edited February 2009

    I didn't progress as well as my doctor would have liked w/ my original chemo treatment (T + AC) and am now on Dasatinib and Xeloda - which is part of a clinical trial - both drugs are oral so it's nice not to have infusions.  Not sure how long I'll be on these drugs depends on my response but I've just completed my first week.

    Rover

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Rovergirl

    How big was your tumor and nodes involvment from MRI ?

  • Rovergirl
    Rovergirl Member Posts: 194
    edited February 2009

    Newalex -

    My original diagnosis was a tumor 6 cm and 8 nodes.  I am on neoadj. chemo and showed a significant reduction in tumor size and node involvement w/ Taxol and a investigational drug called Sutent and then I switched to AC - and did not have a good response.  Hoping the new drugs will get things back on track.

    Rover

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

    Dasatinib the original version was called Gleevic.  They did discuss this with me...you must have a c-kit receptor for this drug to work.  This is a old Leukemia drug.  Did you ladies have your receptor check? what were your percentages?  Mine was only 4% so I refused the trial.  I know someone that had a receptor of 40%...why would I do it for 4%?

    Flalady

  • walstib123
    walstib123 Member Posts: 11
    edited February 2009

    TNHusband,

    I am getting Zometa once every six months for I think the next three years or so.  Not sure...

  • tibet
    tibet Member Posts: 545
    edited February 2009

    I met my onc today and he said Zometa is ony proven to be useful for bone mets, He would not give me Zometa or xelodex or dasatini or navalbine outside a clinic trial but what he said he could give me is daily pill of CM for a year (in a study). The CM stands for CM in CMF and I will by then have a 4 cycle DD EC and 12weekly taxol/carboplantin and then 1 year daily pill of CM. So they chemo span would be for 1 and half year.  What do you guys think if these make sense and do you think it is aggressive treatment to fight early TN? I had 1 cm tumor and 1 micromets in one sentinal node of 1mm. Had mastectomy and full node dissection and all clear except that tiny spot of 1 mm micromets in the sentinal node. Onc and radiologist don't suggest me to have rads as they said I had mastectomy and had one micromets in one sentinal and had clear margin, i.e. tumor was more than 0.5 cm away from skin and 2 cm away from the chest wall. He also said I won't get rads on the neck because it is unlikely anything in the neck since my axiliary nodes were clear.

    What do you think? Should I get more oppinions or if the above make sense?

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

    I vote stay with this program.  I rarely get a "maintain drug" with early stage TN.  It sounds aggressive but doable. 

    Let us know what you decide.

    Flalady

  • Rovergirl
    Rovergirl Member Posts: 194
    edited February 2009

    Newalex -

    I'm not an oncologist but here's my two cents ....... get through your first round of chemo and then re-evaluate on whether you need more.  Not sure I would sign up for the CM study if the EC & Taxol was sufficient.  EC & Taxol is a very aggressive treatment and it's tough but doable - been there done that.  I agree w/ Flalady about using a maintenance drug w/ early stage TN - it's rare.  Why subject yourself to more chemo, if you don't have to.  Good luck w/ your decision.

    Rover

  • walstib123
    walstib123 Member Posts: 11
    edited February 2009

    Newalex 

    I agree with Rovergirl.  This is a big advantage to getting neo adjuvant chemotherapy.  The main reason I started this thread was to see if people were getting additional treatment if they do NOT achieve pCR.   The more reading that I do it seems that new ground is being broken with regard to TN disease.  The standard of care "off trial" in the US seems to be Dose Dense A/C followed by weekly( x12) Taxol.  I think you are in Canada so the standard might be different but it sounds similar.  I think the E in your EC is epirubicin?? which is similar to the A (Adriamycin) In my AC.   There are a couple of large clinical trials testing Avastin, Capcetabine and Gemcitabine in early stage cancer in both the adjuvant and neo adjuvant setting.  Carboplatin is being studied rather intensely in the metastatic setting but it seems that some doctors are also trying it in early stage TN.     My opinion (and that is all that it is) is that this TN disease cannot really be lumped into one category since there is so much variation from person to person.  If I personally do not achieve pCR (my surgery is in two days!!) I would be inclined to take on the risk of additional chemo even for a small benefit given the aggressive nature of TN cancer.  However everyone is different.   Your doctor seems aggressive and on top of things so that is good.  You need to stay informed but you need to also trust your doctor.   

    About the Zometa, my onc told me that giving me that was based on very preliminary results.  However he thought that they were encouraging enough and the side effects were not too risky.  I did ask about carboplatin and avastin in the beginning and he did not want to give me either of those off trial. 

  • tibet
    tibet Member Posts: 545
    edited February 2009

    I am not on neo adjuvant chemo, I had mastectomy first and chemo. I just feel safer if I get some followup drugs after chemo. The daily pill is very low dose and is calculated so that the risk of other things are low per my onc.  

    Floridalady

    Do you suggest I should stay with the program and get the daily CM pills?

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

    Yes Newalex,

    I would give this a try.  If later you find research that say not to do this you can always stop.  But I think treating for the next year with a low dose chemo could have some advantages. Again if you find the side effects to much you can stop.  Just maybe you will not have any major side effects and so you may have some extra insurance. Just my thoughts.

    Flalady

  • tibet
    tibet Member Posts: 545
    edited February 2009

    FloridaLady

    With my dx, 1 cm tumor and 1 micromet in one sentinal node, do you think based on what you have seen so far, that my risk of relaps is really small and my chemo is aggressive enough?

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

    I do nexwalex....but none of us really ever know if it all gone or will organize and return.  Have you read any thing on alternative treatments?  There are ways to help rebuild your body after treatment and some help with not possibly have a recurrences. Many change their diet, use supplements and other options hoping to stop a recurrences.  (hopefully) Maybe you should read up on this and see if you feel that you might want to try these after treatment.  This does take a lot of reading there is so much info that contradicts each other.  But I have done alternative with my conventional treatment for the last two years.  I do believe it has kept me health even while in treatment. You can pop over to this section...but I would recommend you start reading on your own first.

    Flalady

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Floridalady

    Most I read is to take VD and calcium, eat veg and no fatty food. what kind of alternative med did you take?

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

    I take many supplement but I do not wish to them post here.  If you like I will send them to you privately.

    Flalady

  • tibet
    tibet Member Posts: 545
    edited February 2009

    ok. Could you pls pm me?

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

    I will PM you this weekend with my notes that are on my home computer.

    Have a great day.

    Flalady

  • Wink
    Wink Member Posts: 722
    edited February 2009

    I am in the Bisphosphonate trial.  I am in the ibandronate (Boniva) arm.  My onc said that recently he was at a conference where they presented evidence that not only did the drugs reduce occurance of bone mets, but also soft tissue mets.  I received 4 dose dense Taxotere & Cytoxan txs - last tx Nov 2008.

  • Darling1
    Darling1 Member Posts: 2
    edited February 2009

    Hi,

    I'm new here - was wondering if anyone here is triple negative and has had a local recurrance. I did a bit of chemo to shrink it, then I had a surgery - a partial mastectomy. What a disaster, the surgery caused aggressive metasticies to the skin and maybe inside other places. Lots of pain. Yikes. Am having pet scan later this week.

    I am doing carboplatin and gemzar - onc wants to add avastin. 

    Has anyone had anything like this? Would love some info. Thanks.

    Darling in NJ

  • tibet
    tibet Member Posts: 545
    edited February 2009

    Wink

    What is the drug called? Is it Bisphosphonate? Is it chemo, kind of Zometa?

    Darling1

    What is a partial mastectomy? Was your tumor close to the skin? I never heard surgery could cause mets....what did they do?

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

    Darling,

    I a multi chest wall recurrence lady.  My first question is did you have skin mets at the time of your surgery? I would ask the doctor if your surgery was in the last six mths to a year it means your tumor had already touched your skin.  I did Gemzar, Cargo & Avastin for four months and had a complete response my first time with IBC (inflammatory bc- skin mets). I stayed clear for the next two years. (I have very aggressive disease)  I am being treated with Ixempra and had a excellent response with this.  This time my skin was a lot more involved.  So if GCA does not work ask your doctor about Ixempra. 

    Let me know if you have any questions.

    Flalady.

  • Wink
    Wink Member Posts: 722
    edited February 2009

    Newalex - Bisphophonates are a group of drugs including Zometa, Ibandronate (Boniva), & another one that starts with a C - something like clordranate (sp?).  All but Zometa are taken orally - yes, they are using them to treat & prevent mets.

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