Since there is not too much research on the tnbc, it is difficult to know where they are getting the stats.  Let's just pray for more research and more remissions...

 

Bless you, your sister on the journey, Helen in NS

get the follow up "treatment" after rads.  Many/most of the trials limit in so many

ways--neo-adj.--stage--  I understand, but for someone with stage IIIA it's also

discouraging.  My oncologist said not to bother to even dwell on the stage--claims

it makes little difference.

interesting forum on breast "density" and how having dense breasts

can lead to vague and even inaccurate mammograms.  If I were a

scientist (which I am not) I would hypothesize that there may be

a high incidence of bc dxs in patients with dense breast tissue.

 

The comments on the forum are leading patients toward requesting an

ultrasound and/or MRI if they have "density" problems. 

 

I wonder how many people here on TNBC have density issues ?????   And,

more importantly WERE they ever told they were at higher risk

for breast cancer????

Yesterday I had a blood transfusion pre my chem ( low hemoglobin)--FIRST time ever!!--BUT I'm fine!!

...hope your dad is getting over his wife's passing....

Please erase your PMs.

I think WE are too concerned with some of these stats./%

HOW/WHO can publicize tnbc more?

Janice

On this site there are, I think, many PM communications  (some boxes are often full)

I wish everyone well.  Take care.

Janice

say East/West differences as well. 

I was always told about having fibrocystic breasts as well.  Wonder how many Triples

here have that condition?  Maybe there should be some way to do preventative intervention

on the density (short of major surgery)---there is so much to know/do/research with this.

Take care,

Hummie

Bonnie

Thanks for offering the info on the parp inhibitors.  I would be very interested in knowing

if your daughter is in a clinical trial and which one.  From what I have read and heard at

the onc's office the parp meds seem to be what the excitement is about for us.  If the

pharmaceutical companies would just hurry up and get it to market.

Good luck to Ashley in her treatment. 

 

Hummie

more and more women are getting neoadjuvant therapy....they are dx with TNBC...normally a large tumor and then they have treatment to see if the chemo works and shrinks the tumor...hopefully pCR...if that is e.g a two month process that starts one month after diagnosis that's three months since treatment started and 9 months later (either post-lumpectomy or mastecomy/ies)  you are one year out...

anyhow that's how one oncologist explained and again the printed word on a message board can be taken the wrong way..Donna and all, I mean no harm...just one way to look at things...

hugs,

Steve

Thank you very much for sharing with me Ashley's message. Please tell her I am

rooting her on, and that the PARPs are THE best from everything I've read and

from one of the docs I've discussed it with a lot.  Good for her and good for

Bi-Par!!!!!!!!!!!   Tell Ashley we have some things in common, also:  stage III,

nodes involved.  I haven't started chemo yet, go for the mediport tomorrow and

them shortly will start ACT.  But, as I believe strongly PARPS are the way for us!!!!

God bless Bonnie and Ashley.

Love,

Hummie

Why would you do it from the surgery date, not everyone gets surgery...right?

I agree with you.  The day of diagnosis. 

My onc briefly mentionned 3 months of neo-adjuvant and then surgery

OR mastectomy in 2 weeks.  You can guess what I chose.  I was

totally scared---I jumped at the total surgery--I wanted to take

no chances at a breast (that had "failed" me)---that's not everyone's

decision, but it worked for me.  I couldn't sit around for 3 more mos.

thinking about this tumor growing bigger inside me even with neo-adj.

The tumor ended up to be 3 INCHES!  I think I made the right decision.

The did get clean margins so that was one good thing.  Ax. dissection with

nodes involved and 17 total removed----that has been the most painful part.

 

Hummie

 

Did Ashley get her treatment in Florida (saw you are in St. Augustine)?

Was the parp part of it put in the IV ?

2 years from diagnosis, in my opinion...

please send me a PM or email to let me know how you are doing...

my apologies for not writing...was at a loss for words..

all the best,

Steve

Bonnie

I did ask about the parp in one of the trials but was told that even with a

couple of nodes involved, the bc I have is  not considered "mets."  So, I don't

qualify for the open label trial with parp. 

Tell Ashley I am rooting her on.  She can do it.  Go Ashley!!!!!!!!

Best,

Hummie

Here's a ques. to anyone who'd like to respond. 

I know "we" are a "rare" group, but when you

do for chemo/appts.  has anyone met another

triple negative patient to talk to?    I haven't, and I

go to a fairly large center.

 

Thanks and best to all,

Hummie

 

So many are not making it, too many newly diagnosed.  Who do we need to talk to put this research on the hot burner??  (your sister on the journey)

Helen in NS

not met one.  My request to the NCI to have someone with it call me has not happened.

(probably multiple reasons I imagine).

 

I firmly AGREE with our sister in NS---- what do we need to do to RAISE awareness?????!!!!

They (FDA) take our "Avastin" now what do we have?  It's time (pasttime) to organize,

picket, legislate, meet, whatever it takes. 

 

I had thought earlier that we could start with T-shirts and caps with the Triple Ribbons

and something like----"where's the research/where's the cure"---our sisters have waited LONG

ENOUGH.  I thought about wearing something like this to the chemo sessions----what do you

think.   Is this too "in your face"  ?

 

Sorry for the caps, but frustration/anger is brewing in this "bird"

 

Hummie/Hummingbird10 in Ohio

I am sorry to hear your family member recently diagnosed.  We here are all sad/

and MAD!  Where's the cure?  Millions spent on research, come on USA we can

do better!

 

One mad "Hummie"---and you know how lethal hummingbirds are with

their "beaks"---look out "we're coming"

 

I do Ultrasound for a living and do Sonograms every day on women who have "dense breasts". 

 

From what I understand, dense breast tissue is essentially a normal finding on the majority of women in 30's and 40's.  After that the dense breast tissue begins to be replaced with "fatty" breast tissue.

 

Having dense breast tissue in itself does not mean you are at higher risk for bc.  What it does mean is the Radiation used to image your breasts in a Mammogram has difficulty penetrating that kind of tissue.  If the Radiation does not penetrate all the way through, masses will not show up.

 

I found a lump (3cm) at age 44.  I had a normal Mammogram 6 months earlier but did have dense breast tissue.  The MD's agree that that the cancer was undoubtedly there at the time but was unable to be visualized due to the dense nature of my breast tissue. 

 

Where I work, the Radiologists automatically recommend an Ultrasound or MRI as an alternative if the patient has dense breasts.  Unfortunately where I had my Mammo, they did not.

 

Best wishes,

 

Kim

 

Also I always thought dense breasts were 'good' in that they weren't saggy and thin. But they mean 'radiographically dense'  which makes it hard to tell breast tissue from tumors.

 

In one of the many papers Pam posted, the median time to recurrence for TNBC independent of stage is 18 months. I didn't see that paper about Stage 2a being 24 months but I find that interesting as I was Stage 2a and it has been almost 23 months. No sign of recurrence so far but I am only checked for local recurrences. But as DMWolf pointed out, the longer you go, the more your risk drops.

 

I have a neice who had tnbc 1 year before myself.  She is now almost 10 years out, I'm almost 9 with no recurrene for either of us.  Praise the Lord!  I was 59 yrs old at time of Dx, she was 42.  We're different in our approach to prevention.  I'm very nutrition-minded, health-oriented, avoiding preservatives, additives of any kind.  Also, avoid chemicals in any products I use etc.  She is not,but focuses on enjoying life to the fullest.

 

Apparently, there is no one answer. 

 

Lorene 

 

I am so very sorry to read about your sil's sister being diagnosed with TNBC.  She will be fortunate to have you close by to help inform and support her.  Bless her heart.

 

 

 

It is so encouraging to read how long you guys have been out from treatment!

 

No at this point I don't think there is any one answer.  We all have to do what we feel

is best.

Thank heavens for this Foundation forming and increasing awareness, research, etc., to help us, it is a huge huge gift.

 

The TNBCF does have a link near the top where you can shop for items with their logo.  I have bought a shirt and hoodie, both of which have been very nice.

I bought another shirt one time, it expressed my feelings about Cancer in two words.  I have become less shy after going thru all of this nightmare.  I decided to get red with white letters and proudly wear it.  I want people to read my shirt.  Nothing profane in the words just loud and clear!

did not see the mass in my left breast.  I do remember asking for an ultrasound or MRI for

people with density and was told it wasn't necessary---that was a lie in my opinion.  I did

call my "former" ob's office and gave the nurse an update of what has happened to me since.

They need to be educated from patients sometimes as well.  This was also the dr. who put we

on HRT since I had had a hysterectomy, etc.  It was an HRT compounded based on "spit test"

results.  Who knows if this caused any of this?  We will never know.

 

Hummie

Thanks for the permission to wear the message.  I think I know the two words that

you wear---excellent!!!!  Yes, we need to support the TNBCF and the hoodie is definately

very cute.  With fall coming up, that's a good idea.

Pam, where did you get your "letters" for the shirt?

 

Thanks,

 

Hummie on the Cure Path

Thank you very much for sharing the good news of out of treatment and feeling good.

It is inspiring.

Can you tell us more about where you shop or what to buy to avoid additives and preservatives?

Would that be all "organic"?  

Thanks,

Hummie

Interesting info on breast density.  Congrats on maintaining the 23-24 mos. of everything

going well.  Are you eating a special diet of somekind?  more fruits and veggies?  anything

in particular? 

Thanks,

Hummie

 

I ordered the shirt already pre-printed online, I didn't do it myself.  The first word begins with a C and the second with a S.

 

If you decide you want to take supplements you will have to discuss this with your Onc first.  They usually don't want you taking them while doing chemo.

There are some threads around here discussing diet and supplements.  Try using the Search feature, play with the words a bit and you should pull up some things previously said.

 

I eat foods in their natural state as much as possible, which eliminates the preservative problems.  I do buy some organic canned pintos at Krogers, which has only water and a litttle salt.  I don't buy much organic fresh fruits & vegetables, but do use a fruit & vegetable wash for all the produce.  I eat very little animal protein, but when I do, I buy the hormone-free, pesticide-free beef at Publix under the brand name Greenwise.  They also have a Greenwise section in the store with a variety of foods.  I basically eat what is now called an anti-inflammatory diet, including good fats, very little sugar, if any at all.  I also try to eliminate pesticides or toxins in all areas. . .personal products I use, skin care, and household cleaners.  I hope this will be helpful to you, and if I can help further, let me know.

 

Healthy Journeying,

Lorene

I shop at Krogers, will be looking for the pintos.

I believe they carry the hormone-free beef also.

What is the fruit and vegetable wash for produce?  I've never heard/seen this.

How long have you been on this eating regime?  all 9 yrs. since dx ?

 

Thank you very much,

Hummie

 

PS:  Would oatmeal and cream of wheat count?

 

I eat lots of veggies, raw and cooked, and fruit, and try to eat the fruit with low glycemic index...  I track every thing I eat,  for July, I had 192 servings of fruits and veggies,  I did have dessert twice, but of course the serving size of any dessert now is a sliver, compared to what used to be a two piece side, and today, for the first time in months, I treated my self to a root beer soda..  I have 29 yrs sober today, and really wanted a root beer.. so... I did..

 

I use Veggie Wash I usually find in the Produce dept, or a Health Food store.  My intention for a healthy diet was with me when I was first diagnosed, but the actual diet has evolved over time and I'm always open to changing something if it will be better.  Note the 2 posts about the canned pinto beans.  The dried pintos would certainly be the better choice.  And I do eat oatmeal and cream of wheat, especially like them with fresh blueberries.  Dr. Andrew Weil has a book entitled "Healthy Aging" that includes what type foods to include in each food group for the Anti-inflammatory Diet.  I have a small paperback.

 

I hope this helps.

 

Lorene

 

I'm curious about the incredibly wide variations I have seen with the CA 27/29 tumor markers. They range from the 20's to over 500 sometimes 1000. With such wide variations how is this a reliable indicator of anything? But it's the blood test my soon to be former onc chooses to run. I don't see why. I figure Steve has the info on this.

 

Thanks.

http://www.labtestsonline.org/understanding/analytes/cea/test.html - http://www.labtestsonline.org/understanding/analytes/cea/test.html

hugs,

Steve

 

No special diet. I try to eat as much fruits and vegetables as possible and take Vitamin D. I also take a baby aspirin. A study came out this year with 4000 nurses who had breast cancer. Of the nurses who had taken aspirin (no unified dosage or reason why they were taking aspirin), their recurrence rate was 70% lower than the nurses who didn't take aspirin. Even though this study wasn't controlled and I am sure someone somewhere will do a controlled study, it was enough evidence for me to start taking the aspirin. It can't hurt much, right? and plus there is a lower risk of heart attacks. The downside, hard on my Adriamycin shredded stomach lining.

There is evidence that there is a lower recurrence rate among TNBC ladies who are not overweight. Despite exercising quite a bit and trying to eat healthily, I am still overweight though I am losing a little.

The Wellness Center in my community has a Cancer Survivor cooking class which I go to and learn healthy recipes.

 

It sounds like you're into a healthy organic diet with multi-grain & sprouted grains, fish & chicken.  I eat cheese too (low-fat) & yogurt & don't think the anti-inflammatory diet excludes dairy.  I do drink soy milk, tho'.  I do eat beans (pinto, great northern, black-eye peas, etc.) & don't know about the acid issue.  I'll have to look into that.  Your raw veggies important too.

 

Personally, I don't think an occasional indulgence is harmful.  I keep on hand Lindz's dark chocolate squares (70 or 85% cacoa) & have 1 small square occasionally.  It's enough to satisfy.  I actually have a distaste for most of the highly seasoned, high fat dishes that seem to have diluted its taste, but I crave the taste of the simple, natural foods with its flavor intact.

 

Thanks for sharing.  Did you go 10 years between diagnoses?

 

Lorene

 

My soon to be ex-Onc, well her PA, actually told me a couple of weeks ago that they don't do marker testing.  Said they were too unreliable.

 

http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/ExamsandTestDescriptions/TumorMarkers/index?sitearea=PED - http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/ExamsandTestDescriptions/TumorMarkers/index?sitearea=PED

  http://breastcancer.about.com/od/tumormarkers/f/ca27-29.htm - http://breastcancer.about.com/od/tumormarkers/f/ca27-29.htm

 

 

http://www.mayomedicallaboratories.com/test-catalog/print.php?unit_code=81413 - http://www.mayomedicallaboratories.com/test-catalog/print.php?unit_code=81413

 

 

 

Messall

I agree that a baby aspirin shouldn't do harm.  I used to take full size ones pretty frequently

before this diagnosis.  I need to work on the weight issue.  If we eat healthy during chemo,

why do they say not to lose weight during it?  It's actually easier to lose weight, and I've got

some serious weight to lose. It makes me mad, too, because I come from a long line of skinny

family members on both sides, especially my mother's side.  She weighs 87 lbs. and my

grandmother and aunt were the same maybe no higher than 100 or so.  I finally did get on

thyroid awhile ago.  It does help.

I need to find a wellness center close to here. 

 

Thank you,

Hummie

I just don't think there are many of them out there.  I'm going to ask to be introduced to one

at my next chemo treatment or carry a sign "If you're TNBC too, tell me!" 

I do like the idea of somehow all getting together.  Maybe we should go to Congress and

address it about the concerns for Triples and needed research, especially when the FDA is

taking away Avastin.   I'm not much as a speaker, but I'd sure go there if a group could get

in to speak about the need for research for our subtype. 

 

Hummie/Hummingbird

Are you considering going to the Mayo for the testing (from your link above)?

Thank you very much for posting that link. It's good info. 

 

If you get the marker testing, based on the results, what kinds of treatment

are available? 

This is very interesting info.

 

Hummie

That's what my oncologist said.  He said he's seen too many false positives and false negatives to do them.  He doesn't want to give people good or bad news when it isn't warranted.  I still wish he'd do something besides having me wait for symptoms. 

Lee in Denver

It is very strange your friend would get it also within a short period of time.

I, too, believe "environment" has a lot to do with it.  There is so much to

do in that arena it's hard to know where to start.  We can continue to

stay as close to natural foods and products and avoid any for of

contaminant is my guess.

 

Take care ---Hummingbirds on the attack of TNBC

 

Hummie

I'm scheduled for one of those event soon.  I'll see it I meet anyone.

Great comment! 

Will let you know if I ever find one.  Should I wear a sign on my back?

 

Hummie

 

It is more common to have the marker's done when one has metastatic disease to see how they are doing according to one of those links I gave you.

No I don't plan on going to Mayo, too far away.

 

Weight and chemo..     http://www.chemocare.com/managing/weight_changes.asp - http://www.chemocare.com/managing/weight_changes.asp

 

 

http://www.amoena.com/tbcs/InTreatment/Chemotherapy/WeightGain.htm - http://www.amoena.com/tbcs/InTreatment/Chemotherapy/WeightGain.htm

 

Have a good one,

thank you so much, dear friend...I will be seeing her in NY next week...can't wait..

hugs,

Steve

 

I guess I missed previous discussions, but what tests was your onc. speaking of there being too many false positives and false negatives?  I don't remember your story.  What symptoms are you watching out for?  I'm waiting to have a post-mammogram a month after my core needle biopsy.  Reading about the mistakes Drs. make raises the anxiety level!

 

Lorene

I have my sign ready for tomorrow.  Can't wait to wear it--

pink with bold lettering ----will let you guys know if anyone

says they are a "triple." 

 

My oncologist doesn't do tumor markers for breast cancer because he has seen too many false positives and false negatives to have too much faith in them.  He said he doesn't want to give women the wrong information based on them.  I don't really know what "symptoms" I'm supposed to wait for.  I felt fine before I discovered a golf ball size tumor in my left breast.  Of course I do breast exams myself and every doctor that sees me does, too.  I try not to concern myself about the everyday aches and pains since chemo.  I see the onc every 3 months for 2 years.  It disturbed me when he said that once you've had a mastectomy and chemo that your relapse rate isn't all that different from non TNBC!

Lee in Denver

The sign WORKED!!  Met TWO triples, can you believe it!!! 

It was great.  I think they were as amazed as I was.

More later. Just came back from chemo. 

 

Hummingbird10

I'm sure they were as excited to find you as you found them!

Lee in Denver

I was just involved in a photoshoot for my local Komen Affiliate which is on billboards at trainstations and I made a point of mentioning my TN status.  That has been my soap box for the last 18 months, and I will not step off of it.  Heres the link if you are interested, I am at the end (alphabetical by first name).

http://www.komencsnj.org/site/PageServer?pagename=SupportYourLocalBreasts - http://www.komencsnj.org/site/PageServer?pagename=SupportYourLocalBreasts

 

I was dx a week after a neighbor and within the last 2 years there have been 12 of us dx in my neighborhood and another close neighborhood.  We are all under 50, 4 of us are TN.  2 of us are BRCA+.  Very creepy. 

 

I also have always been told I had dense fibrocystic breasts, but never that it caused any risk other than its difficult to see anything on a mammo. 

 

Aside from the CA 125 (because of my BRCA+ status) I have never had a tumor marker test.  I see my onc every 6 months and she tells me all my aches are not cancer related, and that is it for me.  They tell me pain would need to be "persistant, profound, and worsening" before they will be alarmed.  So I try to use that guide to keep myself sane.  I am not always successful.

 

Best wishes to everyone.

 

XO

 

 

 

The sign worked!

 

Take it easy and listen to your body.  If you feel tired be sure and lay down and drink

plenty of water. 

 

Hope you do well after you infusion.