Where are the tri-negs!

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  • deb6563
    deb6563 Member Posts: 179
    edited April 2009

    I had surgery on March 24th, then re-excision on April 8th.  I will be doing dd A/C x 4 then Taxol x 12  on top of that I will be in a clinical trial.  Because of the clinical trial, I have to wait 28 days after my last surgery to start chemo.

    I guess it is really starting to hit me now.  I ordered some scarves and hats and have an appt to be fitted for a wig.  Up until now, it seemed like something that was happening to someone else, but now,  it feels like it is actually happening to me. 

    I have laughed my way through life, so I am going to laugh my way through chemo.  After all, laughter through tears is my favorite emotion.

    Deb - thinking of my treatments not as chemo treatments but as bikini waxes

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  • LRM216
    LRM216 Member Posts: 2,115
    edited April 2009

    Hi - I am Linda. Turned 62 one week prior to my diagnose Had my lumpectomy on 3/25 - re-excision on 4/8 (still suffering from it!) and will begin my chemo on 4/30.  I am having A/C x 4 (every two weeks) - then Taxol x 4.  I am triple neg, and I told her I wanted to be aggressive (hope I live through it!), but not flat on my back as I have to work and I also raise my 13 year old grand-daughter.  Not looking forward to any of it, but I do want to stay on this planet for some years to come.  Best of luck to everyone.

    Linda

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  • rinna40
    rinna40 Member Posts: 357
    edited April 2009

    Deb

    I know what you mean. I've been through two surgeries now, and numerous doctors visits. I'm on a sick leave from work. Yet it was yesterday when my friend form grade eight went with me to be fitted for a wig, that the seriousness hit home. Also had a meeting with a drug specialist about drugs covered in my health plan, and what they can do for side effects. That was a little sobering. But I like your bikini wax image. I'll hold on to that one. 

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited April 2009

    Rinna,

    My surgery was December 11th and I started chemo the middle of January.  I think they like the surgical site to be healed pretty well prior to starting chemo.

    Laugher is definitely the best medicine.  It is heart breaking when your hair first falls out.  The wigs are cute but I really prefer to use a long scarve and wrap a nice bright colored turbin on my head.  A kind lady showed me how to do this and I find it much more comfortable than the wig.  I laugh and tell everyone that the bright side of chemo is how simple life becomes.  No hair to wash or fix, no facial hair to wax, no leg or underarm hair to shave, it's really easy.  I need to check out the humor sites there is sure to be some good stuff there. 

    God Bless all of you

     Deb

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  • Janet22664
    Janet22664 Member Posts: 155
    edited April 2009

    Hi All:

    I just my pathology report yesterday which indicated that I am joining your club.  I must admit as I looked on other threads, I was feeling like I was the only triple negative and Grade 3 out there and was feeling quite sorry for myself.  I'd like to hear from anyone who can give a glimmer of hope as I begin to travel this path.  I'll probably begin chemo in a few weeks then have a double mastectomy.  I am meeting with my oncologist this afternoon so I'll know more after that.

    Deb:  It looks as if I'll be right behind you in terms of chemo. Where are you going for a wig?  I'm thinking of getting my shoulder-length hair cut short and a wig to match, that way, I'll be back to the way people remember me that much sooner. 

    liven42day:  I noticed you live in East Stroudsburg.  In the Poconos right?  I'm in Bucks County, PA. 

    Janet

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  • NanaOfTen
    NanaOfTen Member Posts: 191
    edited April 2009

    Hi Janet,

    I am guessing we are close in our path ... grade 3 ... trip -

    I just finished my 4th Taxol treatment yesterday. My chemo plan was/is four Taxol for 4 cycles three weeks apart then 4 cycles of AC three weeks apart.

    I had a unilater mastectomy and an expander put in. So far it is half filled. I am not too concerned with the filling of it right now, more with the taking care of me and the side effects of the chemo.

    I had my hair cut short after my first treatment - was almost to my waist - to a pixie type style.  After the second week it really started to fall out and I ended up having my son buzz my head with his electric shaver. Too emotional for me to lose it in clumps in the shower while it was falling all over me. I mostly wear a turban type cap around the house. The hospital I am with gave me a coupon for a wig and I do have one that is long but soooo uncomfortable I seldom wear it unless I am with people - for doc visits I wear my hats, lol - even tho they are people, lol.

    I hope this helps a bit. let me know how you do.

    Cheryl

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  • deb6563
    deb6563 Member Posts: 179
    edited April 2009

    Hi Janet,

    We have a shop owner here locally that has a private wig shop in back of his shop, he caters to chemo patients. My hair dresser made an appt and is going with me on Thursday of this week.  Can't decide to go with my natural color,  or red,  always said I was a redhead, my hair just didn't know it.

    Told my daughter that I was going to get pink wig and dye our dog pink so we could go on walks together.

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  • Janet22664
    Janet22664 Member Posts: 155
    edited May 2009

    Hi again,

    Deb:  I went to the wig shop.  Not a pleasant experience.  I was going to cut my shoulder length hair short, and get a short wig. After trying them on, decided to stay closer to my current length and style.  Even the girl at the store suggested that way.  We are going to feel so unlike our old selves, to look in the mirror and see something we're displeased with would just add to our unhappiness. I('m going to send you a private message)  

    Cheryl:  Tell me about your chemo experience.  Seems you are ahead of me on the journey, so I'm very interested in your experience

    Janet

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  • Debonthelake
    Debonthelake Member Posts: 244
    edited May 2009

    Good morning ladies,

    Welcome all of you new comers.  It's not the best club to belong to but, the support of this site is wonderful.  Yes, we are a rare breed and that's why it is so great to be able to find each other on the web.  The advances in cancer care are wonderful.  Finished my last of 6 Taxotere and cytoxan infusions Monday.  It is such a relief to have that behind me.  Now I can prepare for radiation and living the active, nutritious lifestyle that is supposed to be as good as chemo.

    We can do this

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

    I've had a couple of ladies wanting updates on where I'm at and I thought I should also post here.

    I'm also most four years out.  I had a aggressive return of IBC in April last year after having my first six month break from treatment.  With this return we tried Gemzar,Avastin & Carbo a second time since we did get response the first time and I found this to be a very gentle treatment option because I still have Level II neuropathy.  This was not working move to off label use of Ixempra low dose weekly. ( at this time it was a every three week tx protocol)  This did a wonderful job for about four months and than my skin mets returned worst than ever.  This time my disease has large hard tumors under the skin and a couple of places breaking through.  (Ixemepra seem to really change the make of my disease and some of the other said their disease did the same thing.) 

    Even though I've done over 50+ chemo's and my blood, heart, liver & kidneys do not show any sign of toxicity, but my main oncologist does not want to give me chemo just for "skin mets"  he feels we should let the skin go and hold the chemo's for when I have bone/organ mets.  I don't agree and if you could see and smell my skin you would know why I don't want to set around. So I referred myself to another clinic in my state for Hyperthermia with rads to take a break from chemo for a while. I have disease covering my chestwall, right arm to my wrist?, my back and large tumors in my neck.  I do believe this treatment would work but the heating is making my lymphedema hugh and very comfortable. Also my disease that can't be research is continuing to spread so we  stop this today and I'm now looking at another Phase I trial with Thermdox with hypertherma/Doxil.  My concern with this is...again on treating locally and not the whole body but I'm very limited on treatment options.  So this maybe the way I have to go. I've only have two chemo left to try and after that they just start repeating again.   By the way I think this technology will be used in the future for early disease.  They stick a probe into the tumor area and heat to 108 and while it is soft do radiation or chemo depending on the protocol.  You can see this on YouTube from Duke Univ. 

    I will also be checking into a trial I have been watching a fellow poster on this site doing at MD Anderson that is working wonderfully so far for her with very little side effects...problem you most stay out there because it is weekly treatment and only 24 people are in this trial.

    This area has been quite lately I hope everyone is out enjoying their life with their love ones.  If anyone has any changes please update us.

    Flalady

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  • janinvan
    janinvan Member Posts: 83
    edited May 2009

    Flalady....All the best to you!

                  For lymphodema -- drink lots of water/exercise/ try a lymphopress pump treatment , as well as lymphatic drain massage/ try to avoid too many layers of  clothing, especially in the hot weather.....

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

    You got me jainvan I'm going to get on my exercises bike in just a minute. Your right abut the heat...it's killing me trying to sweat through my yucky chest wall.

    Flalady

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  • wayover20
    wayover20 Member Posts: 445
    edited May 2009

    Hello everyone.  I'm certainly not new to this board but here's my story. I was dx'd Jan 07 with trip neg ILC, clear nodes, and underwent right mastectomy with a close margin left but both surgeon and oncol said only do chemo, no rads needed. (hindsight says I wish I had gotten a second opinon but I knew and trusted both doctors implicitly).  So I did the AC/T and thought I was home free and went back to work.  Well 1 year and a month later I go to ER with trouble breathing and lo and behold, now have a "local recurrence of a 7x5 CM mass to the mediastinal area! And the trouble breathing was due to a pleural effusion that they tapped and removed I believe 850cc.  Thank God no cancer cells found in that.

    Anyway so onto IMRT rads (33) then abraxane and avastin chemo and I'm still on that since Nov. I ended up with rads pneumonits and was on high dose steriods and home oxygen since Jan 09 but in past couple of weeks have not needed the oxygen so progress is slow but sure and I'm thankful.

    I've not been able to work since this reoccurance so now I"m on SSDI, had to file bankruptcy but no other way to deal with things.  I'm single and my daughter is 24.

    I've had ct and bone scans  regularly and since the rads every scan has shown "interval decrease in size" of chest mass. While of course it's great new, I just wish I could hear that it's GONE!  But we're working on it.

    Oh yea, skin mets appeard in late nov 08 but have all resolved except for one less than a cm big and that report was in March 09.

    I went from a stage IIa to IV just like that, and when I asked my physician why not a III she said because the chest mass pushed it's way through the chest wall which qualified it as a IV.

    sorry to be so long winded but it's almost "therapeutic" to write this out and redigest it again so I can continue to deal with it.  This has been such a nightmare and there are SO many ladies with situations so much worse than mine so I feel like I'm whining and not appreciative of the positives.  I do keep praying for more faith and strength. 

    So as of today it looks like the abraxane and avastin combo are doing what we wanted and next month I'll have more scans if they continue to bring good news we'll decide to either stop chemo or decrease the frequency. 

    Good luck all of you as we fight this horrid thing.

    Pat

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

    wayover....What a Story!  It's never just about cancer...it's about all the cramp that comes with treatment.  I hope your next scan shows much improvement.  As one chestwall lady to another I know it is really hard to control this area. Glad you checked in.

    God Bless

    Flalady

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  • 2z54
    2z54 Member Posts: 261
    edited May 2009

    Flalady,

    I love reading your posts!  You're like the wise sage of the bc boards.  Hope you know how many of us are following your story, praying for you and marveling at your grit, determination and bravery! 

    sue

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  • RN2teach
    RN2teach Member Posts: 312
    edited June 2009

    Took a rather long break from this site. I'm 18 months out from diagnosis and doing well. I see my oncologist every 3 months for blood work (tumor markers, liver enzymes, etc). Last visit was a month ago and was uneventful. I had some scans done last October to r/o mets; all clear. Mammos every 6 months (due for one the end of this month). 

    I've been too preoccupied w/ my hubby's brain cancer to dwell much on my own dx and worry about recurrence. We made the decision last month to stop his treatment... he has glioblastoma, 6 tumors and was not responding to Avastin/Irinotecan. The last round landed him in ICU for a couple of days with prolonged seizures. He's doing well at the moment-- some fatigue, difficulty communicating, but otherwise able to take care of himself physically. The oncologist didn't give us a life expectancy (I like that about him). We just have to wait and see how fast these things grow and where they pop up next... he did say that we could expect some significant changes in function within a couple of months. We'll see!

    Anyway, we watched our oldest graduate from high school a couple of weeks ago. When dh's cancer returned last year, we didn't know if he would be around to see his son finish high school. So, we're thankful for that. 

    Taking it one day at a time, like the rest of my TN sisters. You're all in my prayers!

    Paula 

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

    Paula,

    Glad you dropped in.  Sending prayers your way for your hubby and you.

    Flalady

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  • Indomitable1
    Indomitable1 Member Posts: 253
    edited June 2009

    FloridaLady- Prayers continue to go up  for you as well.

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  • rinna40
    rinna40 Member Posts: 357
    edited June 2009

    Hello ladies. I had a question for my fellow TN. I had a lumpectomy in Feb, and my oc did not recommend mastectomy and said that the cancer was as likely to return elsewhere. I seem to notice that most ladies have had mastectomies (sorry if I am spelling that wrong - I am spelling chanllenged). Am I right to trust my oc - he seems very knowledgable and always has time to answer my questions.

    Rinna 

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  • ShondaE
    ShondaE Member Posts: 48
    edited June 2009

    I am one month out from my last treatment.  I go for a PET scan on Thursday to check everything out.

    I start my reconstruction on July 13th as long as the PET scan is clean,  so i'm keeping my fingers crossed.

    RN2Teach, sending prayers your way for your husbad and yourself as well as my fellow TN ladies.

    Shonda

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  • ddlatt
    ddlatt Member Posts: 448
    edited June 2009

    I hope this helps answer your question, rinna40:

    http://www.breastcancer.org/symptoms/diagnosis/trip_neg/treatment.jsp 

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

    There is no true way to tell if where your recurrences should it happen may be.  I've meet many TN ladies with local recurrences but many who did not.  They just don't know. 

    Flalady

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  • wayover20
    wayover20 Member Posts: 445
    edited June 2009

    Flalady, it's great to see you posting and I continue to keep you as well as Saint and Watson in my prayers. Man you are one tough lady!

    Paula, may God bless you and your family.....your plate is full!

    Rinna,  I ditto Flalady when she says they just don't know.  You will read just as many stories of women who had small lesions and had mastectomies and the dang thing still came back, as well as those that had larges tumors and haven't had a recurrence.  Crap shoot is all I have to say.  But I wish you well and this board is a wealth of information.

    Pat

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  • tibet
    tibet Member Posts: 545
    edited June 2009

    In most cases from what I read and heard on this board, ladies who are NED from TN, are most likely those with small lesions and no or 1 node positive and no vascular invasion if the path report said and did chemo. I think, the rule still applies for TN, to find it early and treat it aggressively.

    I had mastectomy because I had small breast and pretty big DCIS and within DCIS a small tumor of 1 cm. So I felt comfortablt to do a mast., and one can always reconstruct it later.

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited June 2009

    Hi

     What is triple-negitive? where do i find more info on the net, any particular web-site?

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  • pinkdove10
    pinkdove10 Member Posts: 80
    edited June 2009

    Just read all about TN.  I sure am a TN.  Almost at the end of my chem...last one due next week.  Took 4 cycles EC and now 4 cylcles Taxotere.  How come everybody takes AC instead of EC.  My drug was Epirubison.  Is that diff than AC? How?

    After the chemo...rads.

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  • Luv2sing
    Luv2sing Member Posts: 145
    edited June 2009

    pinkdove10  - Hello and welcome to the forum.

    If you haven't already done so, obtain a copy of your pathology report.  Unfortunately some doctors neglect to tell their patients and just continue on with tx.  Did your doctor say why you're receiving Taxotere?  Just curious.  Everyone's tx is different depending on the stage, number of lymph nodes involved, etc.  The drugs you mentioned are both similar and treat basically the same things.  Again it depends on your doctor and his or her tx plan. 

     Epirubicin (ep-ee-ROO-bi-sin) belongs to the general group of medicines known as antineoplastics. It is used to treat some kinds of cancers of the breast; lung; lymph system; stomach; and ovaries. It may also be used to treat other kinds of cancer, as determined by your doctor.

    Adriamycin or Doxorubicin (dox-oh-ROO-bi-sin) belongs to the general group of medicines known as antineoplastics. It is used to treat some kinds of cancers of the blood; lymph system; bladder; breast; stomach; lung; ovaries; thyroid; nerves; kidneys; bones; and soft tissues, including muscles and tendons. It may also be used to treat other kinds of cancer, as determined by your doctor.

    It has been my experience (myself and others) that they seem to throw everything at TNBC to see what sticks.  As others have mentioned, it is best to be your own advocate, stay educated, keep researching, asking quesitons and don't hesitate to get a second opinion if you feel uncomfortable with a particular process.

    Good wishes to you on this journey and don't let this diagnosis define you. 

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  • rinna40
    rinna40 Member Posts: 357
    edited June 2009

    Thanks for the response. My breast seems to have survived the three surgeries, so I think I am going to stick with just the lumpectomy. Just because this cancer is so darn aggressive, I wanted to make sure I am doing what I need to do. I've done one FEC treatment, two more to go. Then three treatments of D. A little different than what I see you ladies getting in the states, but my oc says they are in the same drug families.

    For those of you finished with treatments, what sort of follow-up and screening are you doing now? Just curious as this also seems to vary. 

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

    Your screening depends upon your stage and what your doctor's thinks. I would push for heavy screening the first year.  Every three months with a scan.  Early disease (node ++) does not eliminate all the risk of recurrences. The few TN ladies I've got to meet a long the way all had recurrences with early stage disease.  I feel TN ladies should be scaned by their Grade not Stage.

    Flalady

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  • rinna40
    rinna40 Member Posts: 357
    edited June 2009

    Thanks for the advice. I know I will have to advocate for myself. I had to remind my oc that I had never had any imaging done on my 'cancer free' breast. I found the tumor in my left breast. After surgery I had scans done of everything else other than my other breast. When I finally had my mamogram done on that breast, they found that I had dense breasts and now I am recommended to be screened by MRI. I wonder if they would do one of these every three months for the first year?

    Again, thanks for the advice

    Rinna 

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