Triple Negative Mets

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited December 2008

    Yes! Taxotere is a good drug but it is the same family as Taxol.  Why do the same family of drugs if you already have a recurrences after taking it? That is my concern.  All NEWLY diagnosed ladies get Taxol or Taxotere.  But VERILY rarely do you get it for a recurrences. (I've only heard of it one other time.)  This is why I question this.

    Flalady

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    Wow, you are in the exact same place I am.  Did you mother have a lumpectomy or a Mast?  I also feel regretful becaus we encouraged her to just have a lumpectomy.  I guess we felt that they caught the cancer early, no lymph nodes were involved and the surgeon felt really good about the surgery that we just felt the lumpectomy was the way to go and her Onc. said that if it was his wife he would opt for the lumpectomy.  I wish now we would have encouraged the mast.  I know that my mom would have went with whatever we thought was best for her.  That is just the way she is.  We will always wonder if we pushed her to make a deadly decision. 

    My mother's hair has not fallen out yet but we have been told that it will probably start within the next month.  We did order her a wig and it should be coming any day now. 

    It really is so helpful having you to talk to since we are pretty much in the same place with our mother's cancers.  I would love to continue conversing back and forth with you regarding what we along with our mothers are going through if you are up for it.

    Do you mind me asking where you are from?  I am living in Montana. 

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    FloridaLady

    I will be asking the Onc. about the taxotere and why he has chosen to use it when apparently it did not work the 1st time.  I wonder sometimes if the onc just experiements with the drugs since there is no defined protocal on what is the best treatment. 

    Stacey

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited December 2008

    My girlfriend got Taxol with Carboplatin for mets. She had only had AC the first time around.

     They are giving the Taxanes now for triple negs right from the start. It's VERY new here in Israel and I was actually the pioneer in our areal of Israel to get Taxol following AC. I had to change doctors and hospitals in order to get it. Today they actually talk about me in the first hospital. I'm grateful. Part of this is because of these boards! I learned so much!

    The "A" is bad for the heart and so they are trying not to give it, I think.

    Survive..why are they doing a regular x-ray for the lung mets. My girlfriend was getting a PET and CT for that...Just wondering.

    cmb35...I'm glad your scan came out good. I wish you the best of the best on the next one. I had my breast mri. I have to wait about 10 days for an answer in the mail and then I have to call the onc for an interpretation and appt. They do things backwards here. :-(

    I can't remember who said this..but this spot on the other side is unrelated to my cancer from 2005. It seems that my left side (cancer side) is clear and two spots were found on the opposite side.

    I've read also (this is to whovever mentioned mastectomy) that not only is lumpectomy + rads the same as a mastectomy (survival rates) but that for triple negs, in many or most cases, it would make no difference. Not sure if that is true. Wonder if anyone else read that. Since I just may have a new primary in the other breast (hope NOT!) I am considering mast and have planted that in my brain "just in case". Preparing myself. The spot is close to the chest wall. I've chosen not to know anything about mastectomies (Tongue out) so IF (BIG BIG IF) this comes up, I'll be coming to you all for HELP!

    Stacey..it will be interesting to hear why he chose Taxotere.. We need lots of opinions here!

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    I am not sure why they have chosen to just do a chest x-ray.  The onc just told us that they would be able to tell after about 3 treatments if Taxotere and Avastin is working for my mom.  I guess the x-ray will show if more spots show up or if the ones she already had have changed. 

    ravdeb:  I will be asking why just a chest x-ray is being done and not an MRI or Pet scan.  I hope there is a good reason and it is not tied to insurance and money!!!! I will be saying a prayer for you that you get a good report from your MRI.

    So many of you pose some great questions that I would never have thought to ask and I thank you for that.  

    Stacey 

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  • ddlatt
    ddlatt Member Posts: 448
    edited December 2008

    dear ravdeb, many of my docs told me that the survivability factor is the same with lump/rad and mastectomy, but that the chance of BC recurrence is less with a double mastectomy.  that was one reason i chose double mastectomy. but also the tumor was 1 millimeter from the chest wall and in order to get clear margins, most of my breast would have been removed anyway. it was just a personal decision for me not to want to have just one breast, and i had always wanted a flat chest anyway, so the double mastectomy was a very easy decision for me.

    bravo on your pioneering work in israel! we need more people like you in the world! 

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  • Fllorik
    Fllorik Member Posts: 1,351
    edited December 2008

    You can have a preventive double mast. since ther is now a "history" in your family. Just check with your insurance for coverage.

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    Fllorik

    Thank you!  I had my regular full physical yesterday and have now been scheduled for a mam on Jan. 12th.  I have pretty much decided that I am going to talk to my Dr. and let him know that I am really considering having a dbl mast for preventative measures.  I did dbl check with my insurance and they do cover it. 

    Do you know of anyone that has opted to have a dbl mast just based on family history?

    Stacey

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited December 2008

    i had dose dense A/C and dose dense Taxol.  4 treatments of each.  i know that if i get a recurrence - i will opt for dbl mast.  i worry every day.

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited December 2008

    Stacey..thank you for the good wishes and I send them right back to you! good luck with the mammo..etc..and good luck with asking the doc all the questions.

    ddlatt..I would probably have done what you did. I'm still waiting for MRI results but anything close to the chest wall, in my head, calls for a mastectomy. You are funny..always wanted a flat chest. Me too! I hadn't thought that I'd need bc to get one. I had a lumpectomy and am hoping for no more treatments!

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  • tos
    tos Member Posts: 376
    edited December 2008

    Survive,

     I was 56 at my first diagnosis of TN and 61 the second time which was last year.

    We do have alot of family history.  My daughter 39 was also diagnosed last year

    so I began to realize maybe we should test and sure enough I had a mutatation and both of

    my daughters also have my mutation, brca 1+.  We are not Jewish. 

    Last year I had what they call a second primary on the other side and had Taxotere x6.

    good luck to your mother,

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  • guitarGrl
    guitarGrl Member Posts: 697
    edited December 2008

    Ravdeb - sorry for the bad news. I'm one of the few others on these boards who went with the lumpectomy because of what the doctors said. But the onc also said that if it came back, there was no choice. I'm still glad I made that decision - don't second guess yourself - you did what was right for you at the time.

    Add me to the list of people who always wanted to be flat chested - I was the first of my friends to need a bra, and I still resent it! I know I'd never have only one mast. because I would be so asymetrical it would be silly. 

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  • HollyHopes
    HollyHopes Member Posts: 497
    edited December 2008

    Dear Deb - i am hoping and praying along with you that there is no new primary or anything else that you have to deal with...you always share so much good info and support with so many others.

    Gentle hugs for you now sister,

    Holly 

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  • tibet
    tibet Member Posts: 545
    edited December 2008

    What has happene to Ravdeb? I could not see her post. I hope she is all well.

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  • ravdeb
    ravdeb Member Posts: 3,116
    edited December 2008

    Thanks Holly. I keep making my way to the mail box for some kind of letter that translates into...go live your life! Nothing there! We'll soon find out.

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  • Raye99
    Raye99 Member Posts: 1,350
    edited December 2008

    Ravdeb - Thinking of you and hope you get good news very soon!!!

    ddlatt - I had both breasts removed as well because I personally felt it would decrease my chances of developing bc in the other breast and a lumpectomy was out of the question due to the large tumor and tiny breast situation I had going on. Good thing I had the mast, as there was yet another tumor hiding in there. BTW, I LOVE your avatar - you look so cute!  

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    galnok

    I am so sorry to hear that you and both of your daughters have tested positive for the gene.  My sister asked the Onc. last Friday about the gene and if mom should get tested.  He said that she could but it was really expensive.  I am pretty sure insurance will cover it so I believe she will be getting it done after Christmas. 

    You said that one of your daughters was diagnosed with BC which I am very sorry to hear as well.  I hope and pray for both of you.  Your daughter that also tested pos for the gene, has she made any decisions as to what she will do? 

    Stacey

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    HollyHopes

    I hope all works in your favor and you never see a re-occurance EVER!!!!!!!  You are in my thoughts!

    Stacey

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    Ravdeb

    Thank you for your warm wishes. I am sending you hugs and hoping for good news for you.

    Stacey

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    Update!

    My mom's appointment on Friday went well.  The chest x-ray showed that the tumors in her lungs have shrunk! Finally some promising news!  In January she will have a scan done of her body to see if the chemo is shrinking the tumors in her liver.  (Not sure if this will be a PET scan or what).

    Last Friday was her 4th chemo treatment which is the big one since it is the Taxotere, Avastin, and Zometa.  She is feeling very tired and her bones ache.  Her hair has also decided that it was a good time to start falling out.  I was hoping she would have her hair at least through the holidays to help keep her spirits high.  Now I am just hoping the darn wig we ordered get's here soon! 

    Stacey 

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  • chumfry
    chumfry Member Posts: 642
    edited December 2008

    Stacey, your mom might actually prefer hats to a wig. I did, partly because my wig was itchy. I had a whole bunch of different kinds of hats. I had one fleece one that I wore around the house all the time. I also really liked a variety called Buffs. I'll try to post a link. They were good for sleeping.

    http://www.buyabuff.com/Buff.html

    Having no hair in the winter is really COLD. (Of course, I live in Minnesota. Maybe it's warmer where you are!) Laughing

    --CindyMN

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  • sfbaer
    sfbaer Member Posts: 24
    edited December 2008

    Stacey,

    I'm from San Franscisco.

    My mom's hair started to fall 15 days, i.e. about  days ago, after her first tx. She had it all shaved yesterday so she doesn't need to clean the hair that's all over the place, especially in her hat.

    My mom's lump/tumor is also shrinking. It's virtually much smaller than before treatment. Her appetite is back to normal (she actually ate more than I do). She'll have her next tx this Friday. Hope it'll be a breeze  so she can enjoy the Christmas a little better.

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    chumfry

    Thank you for the link for buffs.  We are in Montana and it is brrr cold.  -21 below this morning when I got up for work at 5:30 am.  My mom's initial diagnosis of bc 2 years ago she did not get a wig but wore hats and scarves.  This time however, she thought she may want a wig since she would probably be without hair more than once.  Her wig just came in yesterday afternoon and I am so excited that she will have it for the holidays.  I am guessing that she like many other women have a harder time once the hair is lost.  I can only hope and pray that her access to a nice wig that looks so much like her hair will make her feel so much more comfortable. 

    Thank you again for the link.  Please stay warm in MN and hugs and prayers are being sent to you and I hope that you have a most enjoyable Christmas and New Year!  You never know, 2009 may bring better cancer drugs or even a cure! 

    Stacey 

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    sfbaer

    San Fran Huh!  Nice!  Been there once and loved it many years ago.  Traffic was crazy but it was a great vacation with the family.

    I am sorry that your mom is going through the hair loss as well.  I am guessing that my mother will be having her hair buzzed off as well.  She does wear her hair short which does help but it is still very tramatic.  We purchased her a very pretty wig and am hoping it will make her feel better when going out in public. 

    My mom had her 4th treatment last Friday and it was the big one which was the Taxotere, Avastin, and Zometa.  She has not gotten sick (vomiting) but has had some slight headaches, and this time her bones ached all over.  So, last Sunday she pretty much napped throughout the day.  She does get tired easily which I understand completely.  The Onc. did tell her that after receiving the Zometa she could feel achey for a couple of days afterwards.  I hope she is back up and feeling better. 

    Has your mom opted to just wear hats and scarves?  Is she considering a wig?  I have heard positives and negs about wigs but knowing how much the loss of my mom's hair really bothered her I feel that her opting for a wig this time will help.

    I do so hope your mom continues to feel good and that the tumor's continue to shrink and that you, your mom, and the rest of your family have a wonderful Christmas and New Year.  

    Much thanks!

     Stacey 

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  • L0rna
    L0rna Member Posts: 3
    edited December 2008

    Hi Stacey,

    Sorry to hear about your Mom.  I was dignosed with mets to the sternum in August.  My doctor gave me 1 injection of Zometa (I'll have it yearly) and now I take 1600 mg Clasteon (Clodronate disodium) daily and will for life.

    From my research there's approx. a 70% chance your Mom has either the BRAC-1 or -2 gene mutation.  Myraid Labs in Utah does all the testing for North American women and it costs $3100.  I would suggest you look into it for yourself and your sister.

    Lorna

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  • Survive
    Survive Member Posts: 45
    edited December 2008

    Lorna

    Do you know if Insurance will cover this test?  I think my mom's onc said he could draw the blood and send it off but not sure of that.  It all becomes a blurr at times. 

    Were you tested for the gene?  I have not heard of Clasteon, is it new?  What type of bc were you diagnosed with if you don't mind me asking?

    Thank you for your response to my posts and your suggestion on getting tested for the gene. 

    Warm wishes, Good Health, and Happy Holiday's.

    Stacey 

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  • L0rna
    L0rna Member Posts: 3
    edited December 2008

    Hi Stacey,

    I have heard that some insurance companies will cover the cost.  I'm in Canada and there's about a 12 month wait for test results so I paid for it myself.  Still waiting for the results but anticipate will have them next week.  As for Clasteon, don't know if it's new or not - it's a bisphosphate.

    I was diagnosed with invasive bc, no nodes, grade 3, 2.1 cm August 2005.

    All the best for the holidays,

    Lorna

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  • Roya
    Roya Member Posts: 346
    edited December 2008
    Lorna, 12 months is a very long time to wait for test results! Frown
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