Calling all TNs

NavyMom

Thanks, Cocker.  My boy is coming home in 2 weeks (at least that is the plan so far)  Its been a long 6 months.....

Titan

this living/dying conversation really interests me...I dunno...not sure if I want to be 90 years old drooling and wetting myself in a nursing home ..not knowing who anyone is...now...if I could be 90...still look ok..and still be have my mental and physical health..well...now that is a different story.

Guess..I am talking about quality of life compared to quantity...guess we don't have much choice though really do we?

Oh and Navy Mom..welcome home to your son...I'm so excited for you to see him..give him a huge hug from me ok.....so amazing to have him home..safe and sound with you...

OBXK

Slow - gemzar is very tolerable. Hair thins, but not total loss.



Kathryn - I had taxotere/cytoxin for my recurrence. With mets, they started me on gemzar/carbo.

slowloris

OBXK, sorry to hear of your progression. I see you are are starting xeloda. After meeting with my 2nd opinion, I too am starting xeloda. tomorrow, in fact. She thought it would be better for me than carboplatin and gemzar with toxicity since i am only 8 wks out of initial treatment. keep me updated on how you tolerate it, I will do the same. I do not have mets, but apparently my TN is extremely fast growing and aggressive.  Good Luck.

Lovelyface

Dear ldawson01 - Wow, I can't believe that Hospital A did that to you.  Of course, the standard of care is that when doing a biopsy, they put a marker in the tumor area, it is a must.  I had two biopsies done, and both times had the marker put in there.  What do you mean, it is just a breast?  I don't think that way at all.  Saving that one breast mean how I would feel the rest of my looooong life and I mean long life.  I intend to live a full long life of 80plus years, with both my breasts, even if one is deformed with a big dimple.  If it makes you feel any better, my cancer breast is deformed due to a doctor negligence who did not see me on time when I had a severe infection. It is forever deformed.  The only way it can be repaired is if I agree to put in an implant in the cancer area, which I am not prepared to do yet.  So I live with it. Your story brought my anger back, I am so mad to hear that this happened to you, since a similar thing has already happened to me.  Heard later that the surgeon was "not" board certified.  She no longer practices with the hospital she was connected with before, which is where I had met her.

Lovelyface

Melissa114 - In response to your post - I experienced that when I had done a biopsy, my next tumor marker test number had gone up to 20.  My Onco. explained that happens.  Did you get any biopsy done, either of breast or thyroid?  Anyway, I have a spreadsheet where I mark down my tumor markers, all three of them.  My Onco. had also initially done a baseline, but just of the CEA and CA15-3, not of the CA27-29.  My CA27-29 numbers since radiation has been 9.2, 7.6, 11.6, 17.2, 20.2, 12.5, 9.9, 11.3, 13.5.  I just did one yesterday and don't have the results.  Do you see how once it had reached 20.2?  Yours is 24, which is pretty close to 20.  Unless you have other symptoms going on, please don't worry too much.  Somethings does affect the CA27-29, not sure what.  My other two tumor markers are always very low number.  But CA27-29 jumps around as you can see.

Grammy98

As far as mets and recurrences...I cannot provide global stats although my onc said my chances are less than 10% based on my staging and treatment.  However, there may be a perception by those who participate on this board that mets and recurrences are more frequent than the stats support.  This is logical because we would expect and hope that women in need of support would participate more versus those who are years out with NED.  My heartfelt thanks to those of you who are years out that encourage us and also to those with recurrence that aid us on your extended journey.

PeggySull

Lawson,



I agree with lovely face about the standard of care being to leave the biopsy markers in. This is probably a stupid question but cannot they do an MRI of the breast to find out if there is any evidence of a tumor that has shrunk? If they can, why couldn't you have a lumpectomy then?



I went for the double mastectomy (my cancerous breast was multifocal and lumpectomy wasn't an option for me) but I totally support any wishes others have about their reconstruction. After the shock of being diagnosed, the emotional upheaval. The SEs from chemo, we deserve an ending we feel good about.



I have a younger acquaintance who had to go the mastectomy route and she is extremely happy with her DIEP reconstruction. Feels like her own body there (because it is). I a happy with my implants but am a little regretful I didn't go the DIEP route.



Hang in there, you will be able to come out of this feeling good about your breast (as good as any of us feel). A second opinion may be worth getting for peace of mind.



Hugs,

Peggy

Cocker_Spaniel

NavyMom just had to tell you.  My daughter brought tickets for us all to go to a concert tonight.  We also went to it last year and it was fantastic.  It was the entire Royal New Zealand  Navy Band and it was just a fabulous as last year.  We sang, clapped and had a ball of a time at all of the wonderful music.  They also did lots of funny stunts to make us laugh and it was great and if a tear rolled down my cheek when they played Abide with Me it was in the hope that your wonderful boy comes home safely soon. They also showed on a big screen the ships in convoy on the sea, the training that they go through, the places they live in on the ships and all the fun they have and lots more. xx  

NavyMom

What a nice post, Coocker.  Here in the USA it is Memorial Day weekend.  It was meant to remember those we have lost.  Most folks look at it as the start to the summer season.  But for those of us who have loved ones serving in the Military, this weekend is quite emotional. I can relate to your love of the Navy band. Patriotic music always makes me cry.  A Mother's worry for all of our soldiers near and far and missing my own son with all my heart.  So ladies, enjoy your holiday and remember to thank a vet and any active service members that you make come upon.

lizlori

Hi Everyone.

Today is a sunny here is wisconsin but a bit brisk....doing ok, leaving to go to my sons High School graduation ceromony, and then to Northern Wisconsin for a Hillbilly Wedding.....should be interesting, I told my husband I refuse to socialize with a bunch of sloppy drunks. ( I am not a snob, but can't stand it when people get out of control from alcohol.)

Stupidboob....you are a supportive caring woman ....always having words of encouragement. I appreciate your honestly and am glad you vent here....that is what makes this site so cool....its ok to be where we are at, however when we are down, it is necessary to have someone nudge us and remind us to have hope....

I hope everyone has a great holiday weekend..................

Luah

Lawson: I'm so sorry that happened to you! Either Hospital A should have left a biopsy marker or Hospital B should have checked for one before chemo started (I can't understand why they didn't).

I am fairly certain my biopsy did not have any marker, but then I wasn't doing neoadjuvent therapy... I went right to LX and my BS relied on MRIs for location/size etc. At the time of biopsy, was Hospital A planning to offer the neoadjuvent route....? 

5andcounting

Congrats navy mom, thank your son for protecting us.



Recurrence sucks. I do think its skewed here. I know that for the past 3.5 years., I got on less and less. I didn't eat as well as I could. I was in decent shape but nit under 25 percent fat intake. I drink wine. And bourbon in the winter if I feel like it. I had all 8 chemos and did great. My onc thinks chemo killed everything but that I had more cells lurking in my breast that turned for unknown reasons. No mets. Just another damn lump. Breast tissue all gone now. DIEP flaps. Will not be drinking if eating bad anymore. But know that could still get mets and that scares me most. Pet negative but my onc always does baseline ct of Ab, chest, liver, and bone scan. Sees smaller lesions. So please pray it sees nothing. I don't like doing this again. Carbo and taxotere for 18 weeks but I do not want to be stage 4

I'm not very brave this time , was a lion last time, have to find my courage again:)

Worrywart9390

sending prayers and hugs and positive thoughts!!

angie

Nettie1964

Thanks for all who responded to my question!  Makes me feel better!  I keep talking to my ONCO about it and he says not to worry!  But it is so hard!  I just had Taxol # 3 yesterday, May 23, with 9 more to go, then on to RADS!  So far, none of the treatments has been terribly hard on me, I've only missed work on the day of treatments!  

So all in all I'm lucky, just wish all this "other" little pains would go away!  I'm so tired of worrying!  But I guess this is how it's going to be!

Wrenwood47

Interesting info from Life Extension Magazine (November 2012)

 Nutrients that Restore Receptors that Enhance Standard Treatments

Roughly 70% of breast cancer cells depend on a continuous supply of estrogen for their growth, while a smaller number of cancers depend on the growth factor called HER2/neu. These cancers can potentially be treated by interfering with the receptors, making them (at least in theory) less dangerous.

Between 15 and 25% of breast cancers, however, are so-called "triple-negative" cancers, meaning that they lack any of the three receptors (estrogen, progesterone, or HER2/neu), and are correspondingly resistant to treatment. Among the most exciting discoveries in the epigenetics of nutrients for cancer chemoprevention is that many nutrients can restore one or more of those receptors to the surface of breast cancer cells, lowering the bar to effective standard treatments such as the estrogen receptor blocker tamoxifen.15

Other nutrients can modify at least one of the receptors, impairing the cells' ability to receive the growth signals they require, and triggering their early death.

Nutrients (and a drug) capable of epigenetic chemoprevention through modification or restoration of breast cancer receptors, or which have effectiveness against triple negative cancers include:

• Coffee
• Conjugated linoleic acid
• Curcumin
• Green tea polyphenols
• Melatonin
• Metformin
• Omega-3 fatty acids from fish oil
• Sulforaphane from cruciferous vegetables

Worrywart9390

i always thought coffee was bad for triple negative, i gave it up, so is it the coffee or the caffeine?? or it doesnt matter??? 

Lovelyface

Interesting Article, Wrenwood47.  Basically I am triple negative except for 5% positive for Progesterone.   Heard that only 15% of all Breat Cancers are progesterone positive.  Anyway, I just wanted to say that during the days I got the TN (2010), I was drinking a tall glass of coffee each morning, also since I am Indian, I eat curcumin (which is a concentrated form of yellow curry powder) almost every day of my life in my curries.  Disappointing that I still got it anyway.

Worrywart9390

Loveyface - I am 5% positive progesterone as well.....................my doctor is thinking of putting me on some hormone pill, were you offered anything????  Just curious since we are similar, I am stage 1 and grade 3 though.

Lovelyface

Worrywort9390 - Yes, I was offered Aridimex, which I took for 3 months.  I was thrilled as I had no side effects at first, but right around the 3-month mark, my side effects hit me so badly, that I was so disabled.  I had severe neuropathy in my hands, legs, arms & neck.  My blood test showed that my estrogen levels were really low, therefore, I feel that by taking Aridimex, it drastically reduced my ER levels even more, therefore, the severe side effects.  I stopped taking it after 3 months. I had tried accupuncture and other therapies, nothing worked.  I wanted to try Femara later, but doc. said it was dangerous to stop and take again, too much hormone fluctuation.  I ended up not taking anything after 3 months.  I was Stage IIA, grade 2.  I had IDC as well as DCIS close to each other.  Both you and I fall in a very small minority to be in the 5% PR positive group, but I call myself TN.  May I ask you - were you using any progesterone cream on your skin before the Cancer diagnosis?  I was using natural progesterone cream (hormone) from herbal store, on my skin for at least 6 years prior.  It helped me with hair falling and bathroom frequency.  My gyne also sold these creams in her office.  I was under her care and she knew I was using the cream.  Once when my blood test results came before BC diagnosis, the person who reads the blood tests, wrote a note to the doc, saying "is the patient using hormones, her levels are high"?  I should have paid attention.  Sometimes, I feel I imbalanced my hormones and caused my own cancer.  Not sure, it can never be verified.  I contacted the company who made these PR creams, she swore by it that it did not cause cancer.  The first 3 years these creams used to contain paraben, later they took it out.  But I used it a lot.  Later, I went into my finances, and wrote down exactly how many tubes of cream I had used and for how many years.  Dr. Lee recommends this cream in his book titled "What doctors don't tell you about menupause".  I believed him and used the hormone progesterone.  Sorry for the long post.

Titan

kinda off topic here..but on the eating thing..have you guys tried grilling romaine (little gem) lettuce.....it is awesome  and good for you!

Paintingmywaythru

Dawn that is really good news. Glad to hear they will do this.

fireagate

Hi,

New here. I found out today I am triple negative.  All I can say is cancer sucks!! I have a cat/pet scan and a biopsy on the other breast next week. Oncologist is suggesting I do chemo before surgery. I want to stay positive but right now I'm just mad! It's like every week the news gets worse. and I'm sorry I know everyone else has been through/going through this mess. :-(

GoWithTheFlow

Idawson, my surgeon put a clip in when he did my biopsy.  Another clip was put in near my nodes under my arm because he gave me an ultrasound frequently and it appeared that the tumors were going to disappear.  I turned down the lumpectomy option and went for a complete mastectomy because I wanted to do everything I could to prevent this from coming back.  The chemo worked so good there was NOTHING in my pathology report post surgery.

I would think since triple negative is so responsive to chemo, that it would be standard care to put a clip in during biopsy, but I don't know.  Sorry so many of you aren't as confident in your doctors as I am.  I've always felt blessed to have doctors who I trust, and reading other's experiences just reinforces that.

gillyone

Totally off topic, but I am in England enjoying a visit with family. And the sun is shining today!

NavyMom

Titan: Sounds interesting. Did you grill the lettuce as a side dish?  Put anything on it? 

Gilly:  Have a wonderful, wonderful trip.  Enjoy your family.

Hello to all the new ladies.  As you have already found out, there is a wealth of information and compassion on this board.  And those that have been here a while....Like me!   Will be 4 years out from DX on Monday.  Sending hugs and hope to all.

natL12

to CRS319 so sorry to hear you are having bad news reported. Sending hugs your way...and thinking...don't blame yourself for recurrences or think it's because of what you ate or drank.  Guilt trips don't help at all!  Nat

Lovelyface

Hey msjag, how did your MRI go?  Did you get the results yet?  I found it interesting that you said the third year is most crucial for TN's.  I hadn't heard that.  My Oncologist said after 5 years, in 2015, she will declare me cured.  I would take the 3 year anytime.....Also, I think it depends on when one is counting from, right?  From treatment or from diagnosis. From diagnosis, I am 3 years out in July.  From treatment, I am 2 years, 2 months out.  Regarding follow-up, the radiologist was writing me up to have MRI's almost every 6 months, until my BS interfered and told me not to do them.  She said I would "glow" in the dark as I would have so much radiation in my body.  I just follow the rule of thumb - which is only if you have any symptoms or lump, wait 2 weeks, and then get yourself checked.  Otherwise, no scans, no petscans, no nothing, except your normal checkups, such as colonoscopy every 5 years if you are over 50, pepsimeres every year at annual exam, etc.  Hoping your MRI result was great.

schatzi14

lovelyface....radiation from MRI? It is magnetic...no radiation that I know of. You sure it wasn't a CT scan? They say every CT scan is the equivalent of 6400 xrays.

Re: tumour markers...I had a marker put into my breast to mark the spot before surgery. It was like having another core biopsy...same equipment...same table...it left a long metal wire in the spot that was affected. It  was long enough that it was taped to my breast. The surgeon said it was spot on...easy for him to find the cells. I am assuming that wouldn't work if the areas are not close or are dispersed through out the breast area. If they are, I believe that is why a mastectomy is done.

Lovelyface

In response to Schatzi14 - Yes, radiation from MRI.  I thought the same way you did, until my surgeon told me that the injection they give you half way through the MRI, is radioactive material.  I thought MRI was the safest, most un-radioactive test, but for breast MRI's yes, that liquid they inject is radioactive.  The wire stuff you're talking about, I had that done too, I think it is called wire localization.  The wire sticks out, a you go into the surgical room, right?  Then when you come out of surgery the wire is gone. The little chip they put inside your breast, is the tumor area marker.