Triple Neg BlogSpot...

lexislove

Triple Neg BlogSpot...

lexislove

Here's something I thought you Triple Neg woman might like...

http://www.hormonenegative.blogspot.com/

FloridaLady

I just talk to Mayo and MD Anderson Houston this week and I have two friend here online that are TN and are treated at MDA and John Hopkins.  We have all done nine different chemos without making remission.  We've all been told that they have NO known treatment that has been proven to treat TN.

I spoke to Operational Mgr of Clinical Trials at Mayo today and she said they have very little in the works for TN.  Everything still is Her2. I don't see anything positive about TN.   We TN ladies need a lot more vocal about research and our disease. There are a few new very early trials that are working with inhibitors of protein and enzymes not chemos. These are a good two to three years out.  The one thing to remember is you may have different disease than the next TN lady.  This is what we need to know.  Do you have a basel tumor? The key to aggressive disease.

Flalady

lexislove

Florida Lady,

I'm actually Triple Positive. A friend of mine that I met when I was diagnosed was on my computer and she was looking at the blog since she is Triple Neg.

I just thought I'd post ..maybe someone might want to check it out. I haven't personally read throught the whole thing.

Estepp

You know, I am not triple neg.. but I don't get it either. Where is the research for this one? Are you kidding me. It seems so aggressive and yet, where is the research??????????????

tos

I do not know if my tumors were basal.  They were never tested for this but I think everyone should have this test along with the p53 at the original pathology time.  Some docs do some don't.

I fired my Onc.  One of the reasons I did was because when I asked him if my tumor had been tested for basal the second time he scrunched up his face and said "what is basal"?  Huh?  He didn't even know anything about triple neg nor even what basal meant.

I would take in studies, he would brush me off.  The last straw was when he suggested I get a job.  I had a job, finding a new Oncologist and continuing to educate myself and advocate for this disease.

I'm very worried about the lack of the medical/research field and their studies although it is getting better.

ddlatt

thank you so much for bringing this blog to our attention. it's the most thorough, educational, and helpful info i have found to date. 

tibet

I don't know either if mine was basal or not. I had DCIS which was 50% ER + an 30% PR + and the IDC was 100% TN. I guess the IDC was evolved from the remaining 20% of the DCIS which was TN. So probably mine tumor was not basal since it came from DCIS which the DCIS itself was not all TN. I don't know. Anyone has DCIS and IDC like this? I heard some ladies had DCIS and IDC both were TN. And TN DCIS is more likely leading to Basal type tumor. But mine was a little different that the DCIS was not all TN, but 80% receptor posive so the remaining 20% DCIS was receptor negative and that part probably broke out from ducts and became IDC.

tibet

Flalady

When you say there is no remission for TN sisters you know, are they all in early stage? You told me before that you don't think there is any higher recurrece rate for TN than for other subtypes. So for early stage, I thought you mean there is not so much negative for being TN than other types. Right?

PatriciaPrijatel

Thanks so much to those of you who have visited my blog.  It is a labor of love, created because I was extremely confused and frustrated when I was diagnosed.  I do hope the blog helps others gain control of their disease and treatment.  I got a good deal of contradictory information from doctors, so I worked hard to educate myself.  The good news, though, is that doctors have started working harder to find cures for triple negative disease--for all forms of hormone-negative breast cancer.  And there is more and more research out there.  Some of it seems a bit esoteric at this point, but I feel sure it will eventually lead to new treatments and new ways of diagnosing and providing prognoses.   A low-fat diet has been shown to be successful against hormone-negative in several studies, as has been exercise.    And chemo is far more successful at combatting hormone-negative than most forms of positive.  I would love to hear from any of you about issues you would like more information about.  I am writing a book on this disease, scheduled for completion in August 2010.  I eventually will post a poll on my blog asking for information.  But I would absolutely love to hear from long-time survivors, as I want your stories to be an important part of the book.  I would love to interview you now and post your stories as encouragement to the women who get the daylights scared out of them with this diagnosis. We do survive.  And often thrive.  Take care.  Pat  (www.hormonenegative.blogspot,com)

FloridaLady

If you look at this site or any article about triple negative it does note that there is NO proven treatment at this time for TN.  Also notice that they note chemo works well because the medical industry has nothing else to use at this time.  The only breast cancer survival that is improved in the last ten years is breast cancer's that can be treated with non-chemo drugs.  Chemo never brings people into remission except when treated with hormone or Herception inhibitors. This is also the only proven way to slow disease.  This is why you can find hormone positive patients in treatment for l0 to 20 years because the disease is moving so slow.  If your tumor is basal you have a very high chance of recurrences and a poor chance of disease control.  All doctor's need to tell their patients if they have a basal tumor.  Remember not all TN ladies have basal tumors.  

This site also notes that TN has the lowest survival after three years.  Where is the positive stuff?  I don't mean to scare anyone.  Yes if you have early disease that can be cut out you have a higher chance of NO recurrences like any other cancer.  The key is like other bc you don't have any other options that will treat your recurrence with any efficacy.  This is just not fair.  I talk to Operation mgr and Mayo this week and just was very upfront that there is very little in trials for TN.  Her2 is still were they are spending their time and money on trials.   What trials are open for TN is only for early disease because they are running down the chemo's to see if any work any better.  This scare's me because after seeing how many of my TN friends including to myself that received Ixempra the save all drug for TN.... we all had our disease return extremely aggressively after three months on the drug.  Did this help us? 

Ladies like other and me on the Stage IV site are the rats that are being experimented on right now.  The past three weeks I've spent trying to find my next treatment options. I still have chest wall/skin only disease and there are NO treatment options open to me.  I'm getting to the point they may not let me in trials because have had so many chemo's that they can get a good reading for the trial.  Bottom line I've been put out to pasture even by the drug companies.  Boy they loved me the last three years getting all my insurance money.   I now looking outside of normal medical treatment because of my limited options. 

The one good note is a small trial of 90 patients who are doing a trial for TN that is using a new inhibitor drug that goes after proteins and enzymes instead of cells growth like chemo.  It very early but I have a friend in it that is doing well so far.

Triple Negative needs more research and dollars going to research just for us.  I see all the time where so and so is the TN geru...I've yet to meet someone who knows anymore that a well researched patient can find online.

FloridaLady

positiveaboutnegative,

Do you have a medical background?  I'm curious how you know what TN options are with only early stage disease?  How many Stage IV patients have you spoken too?  Have you stood infront on a doctor have been told they don't know how to treat you?  I have by four different oncologist. Going on number five this week. I've been to some of the top clinic's in the country and was told point blank they are only experimenting at this point in time with TN. There is No set protocol's for TN patients at this time for any stage disease.  How do you write a book about a disease that has no set protocol and so little is know about it?  I've study and watched and experienced very expect of this disease and know that there is no hard fact's know about TN other than a higher rate of basal tumors.  Just look in this area and see the numerous different ways ladies are receiving treatment.  This is because there has been failure with many of the early protocols so different doctor's are just search for any way to test what will work with out even going to trial.  We are the only bc that is treated in this manner.

There is so little know about TN that the information is changing daily as the medical industry tries to pin down why so many of us respond differently to treatment.

Flalady

It's great you started a site for TN but do not make ladies passive about their disease or that they need to do their own research to know that their current treatment options are.  The date next to the articles is not the article date but this website date posted online. You need to make sure everyone knows what date the article was published. Triple neg info changes to often.

PatriciaPrijatel

Florida Lady:

You ask good questions and I understand and respect your frustration.  Yes, what you are going through is not fair, and it is appalling that research in the past has focused so much on hormone positive forms of breast cancer.  I am still amazed at how few people understand that this disease even exists.

You are right that I have not stood in front of doctors who have told them they could do nothing for me.   I have stood in front of doctors who told me there were therapies for this disease--tamoxifen--when in fact the research proves differently.  I went through four oncologists.  None seemed to know as much about hormone negative as they should.

My motivation for the site was to actually empower women to educate themselves so that they could have more control over their treatment and disease.  And, yes, doctors are learning things daily.  All my posts have dates, and I try to link the the actual research, which also has the date.  I will try to make this clearer in the future, though.  Thanks for the suggestion. 

And I am sorry that I must not have been clear about the three-year recurrence information.  In fact, it is true that most cases of TN recur within three years.

As I explain on my site, I am a medical writer.  My expertise comes from understanding research studies and knowing how to interpret their findings.  The book is being written with a Harvard oncologist because I wanted to make sure it has good medical underpinnings.  She watches my blog to make sure I am accurate.

I felt the need for a book that explains this disease and shows what works and what doesn't.  There are protocols--chemo is more effective, a low fat diet had been shown to help.  But the fact that my oncologists tried to lump me into a one-size-fits-all treatment proves that this information needs to be out there.  There is a great deal of information about this disease, and the more we write and question and challenge, the more answers we will find.  

Have you checked out the Triple Negative Foundation?  It's at http://www.tnbcfoundation.org/index.html/  

They, along with Komen for the Cure, just gave $6.4 million to the University of Alabama at Birmingham to research triple negative.

Take care.

Pat 

FloridaLady

Pat,

I thank you for addressing my concerns.  I glad you are working on keeping this site up to date.  Triple negative ladies need a more powerful place to see up to date information.  I hope you can get some of these so call geru's to become active on this site.  Example Dr Lisa Carey and Mayo and a someone they consider too really understand TN.  Also I just read about a doctor at Emory in Atlanta research the ethic connection to TN. 

I have visited the TN Foundation site but they only address early disease. I'm so past any information they have to offer.  No one really address stage IV we rarely survive long enough to go through a lot of drugs.  I'm part of a rare group that has IBC or chestwall only mets for three or more years.  We all have done nine plus chemo with no real response....,except Ixempra.  Please have someone look into this drug that many doctor's feel well be a good drug for TN.  This drug has caused a lot of eye disease in patients and we all came back with very aggressive disease that has a different make up. (large hard tumors)

I wish you the best with your site

Flalady

PatriciaPrijatel

Flalady:  I hope to soon be able to spend more time on the site, and your suggestion of getting some gurus involved is excellent.  I have been attempting to build readership and, once that happens, I can get more docs on board.  I haven't written about some of the most recent research because it is sort of complex and theoretical at this point.  I am rethinking that position, as it seems women need to know what is happening, even if the results are not yet available to them.  I will see what I can find out about Ixempra.  

 One serious frustration I have with the media--of which I am a part--is that they really don't want to write too much about TN, preferring more general articles.  So pieces I pitch on this topic generally get ignored.  Sigh.  

Again, best of luck to you and to all women who are faced with this disease.  

Pat

FloridaLady

Pat,

Your right about needing to know what's in the wings.  TN research is soooo slow that many of us are just do chemo's with no rhyme or reason just waiting to find a better treatment.

I've read the new trials information in the wings and it is complex reading when it comes to the new inhibutors.  I'm really only interested in inhibitor now because chemo's do not work with a TN recurrence...or for that matter any recurrence.

Flalady

PS the TN specialist at Mayo is Dr Edith Perez.

CaroleAnn

My sister went to her GYN to talk to him about me being dx as triple negative. He laughed and said there was no such thing. I told her to find a new Dr. but this shows that Dr.'s do not know enough about TN and some know nothing. So sad

PatriciaPrijatel

Wow.  Any doctor who laughs at any patient's diagnosis loses complete credibility.  Yes, your sis needs a new doc.  This is beyond sad--it is ignorant.  And that is the last thing you need in a doctor.

Debonthelake

Hi, everyone,

I'm just joining this site.  I'm very interested in staying up to date on treatment options.  I'm being treated in Nashville, TN at St. Thomas.  My Oncologist was trained at John Hopkins and seems to be up to date on triple negative.  I think the most traumatic day of this whole journey so far was my first day into see the Oncologist.  He was so nice and bright and optimistic.  My oncogenes were missing from the chart.  I handed the report to him from my notes.  His face fell.  He said "oh, this changes everything".  He used words like nasty and aggressive and I was terrified.  My positive mammogram was in November and my lumpectomy in December.  I started Taxotere and carboplatin in January.  I'm just about to finish my last round of chemo.  I received 6 cycles.  There were a couple of trials I could have taken part in.  There is the TIC TAC experiment where you alternate Taxotere and tamoxifen every 2 weeks and Avastatin.  My husband was so traumatized by the whole thing and we live so far away that I didn't fight my husband on his reluctance to be in trial treatments.  But, I do wish I had taken advantage of the Avastatin trial now.  My radiation starts the middle of May for 33 sessions.  My Oncologist assures me that because of the very early detection and the combination of chemo and radiation that my cure rate is 85%.  I hope he is right.  I'm not angry or bitter.  I've lived too much life to feel like life should be fair.  It's not.  I got over that years ago.  I can not control the journey that I'm lead down.  I can control how I react to it.  I'm committed to making some life style changes.  I just planted an asparagus bed and will soon be putting out vegetables in an organic garden.  I lost 20 pounds at weight watchers prior to my diagnosis and I plan on attending again when my radiation starts and maintaining my weight and perhaps shedding another 5 to 10 lbs.  Exercise has always been a pretty important part of my life but I plan on vamping up my activity level as well.  It's the prayer of serenity that I am trying to live.  The courage to do the things that I can to fight this terrible disease, peace of mind to accept those things that I cann't change( like my diagnosis, among other things and of course the wisdom to know the difference. Do keep me posted.

PatriciaPrijatel

Debonthelake:  You seem to be doing many things right. Losing weight and exercising are essential.  And you benefited from early detection.  For that you can be eternally thankful. We need to continue encouraging women to do breast exams. I, for one, was really bad about my monthly exams--I was terrified I would find something.  Well, duh, it was there even if I wasn't looking for it.  I ran into simple dumb luck--the tumor chose to pop up about the time of my year gyno exam, so that doc found it and it was sliced out in no time.   Once diagnosed, though, it is essential to take care of our entire body, mind and spirit.  The serenity prayer and an organic asparagus bed are wonderful ways to do that.  Yum.  Good for you. I am watching the Avastin trials in hopes that the drug may eventually provide  effective treatment for TN.  Best to you.  Pat

melwasson

Hello.  I too was diagnosed with Triple Negative June 12th, 2008. I was only 28 years old.  I feel very fortunate that my cancer was found early and that I was extremely aggressive when it came to my treatment.  Within 5 weeks of my diagnosis I had a bilateral mastectomy followed by four months of chemotherapy at Siteman Cancer Treatment Center in St. Louis, MO.  My oncologist is one of the top breast research doctors in North America.  I would also like to point out that my mom is a 20 year breast cancer survivor and although the term "Triple Negative" was not being used at the time, my mom's cancer was negative for hormone receptors, leading us to believe that she too was triple negative.  One of the most important things that my oncologist told me was that number 1: Triple negative has an incredible response to chemotherapy and number 2: with triple negative, the highest risk of recurrence is in the first two years and then after that, the risk of recurrence is less than those who have never even had breast cancer.  In addition, he stated numerous times that a low-fat diet (with each item eaten you only consume 20 - 30% fat calories) and vigorously exercising 20 - 30 minutes for 6 days a week is just as effective as chemotherapy once a person has already had chemo.  I hope this provides some encouragement to other Triple Negative breast cancer.  Just remember, you are not a statistic.  God is bigger than any number!

PatriciaPrijatel

Melody:  Sounds like you have an excellent oncologist!  He is telling you all the right things.  You are indeed fortunate.  As you can see from the posts on this and other sites, many of us have not been than pleased with our oncologists.  I hope the good news continues.  Take care.  Pat  [www.hormonenegative.blogspot.com]

FloridaLady

I saw my fifth oncologist this week. I learned something new.  He is investigations research pharmacologist for some part of the FDA.  He said that triple negative patients have a higher chance for blood clots.  Has anyone beside me already have had blood clots?

Also he said to me again like so many other doctors...triple negative means they don't know what we are and don't know really that much about us.  In his words...we are the left overs of the breast cancer world that no ones knows what to do with....I've yet to find a positive oncologist about triple negative...thank God we all don't have the same disease! That alone should make someone want to solve our puzzles in the future.

Flalady

VickiG

Flalady ~ no blood clots, but ironically had a doplar 2 wks ago to rule them out in my leg.  It was decadron SE-related, not from the disease itself, but I think it's interesting that your onc mentioned TNs & clots ~ hadn't heard that one.  Also, completely agree w/ him about the fact that they have no idea what we are, just what we are not.  So it makes me crazy to hear how lucky we are to be TN ~ sheesh, once they figure out how to deal w/ us I might believe it, but until they have some idea of what we ARE it's a little ridiculous for any doc to be spewing the joys of TN.  Ah, and like you, have yet to meet an onc who is positive about our disease ~ and I've consulted w/ quite a few, too.

Melody ~ I'm confused by what your onc means about a low-fat diet and exercise being as effective as chemo for someone who's already had chemo?  I'm sure he didn't mean that if you have a recurrence you don't need chemo but can just exercise instead, but I'm not sure what he DID actually mean?

jenniferb

Hello Everyone:

I am on Day 30 on Dose Dense AC/T and have not had any blood clots yet Thank God but I have met one woman in the Chemo Den who is also 3N and she was in the hospital for 8 days with a serious blood clot brought on after her second Chemo Session. I have a blog on my Chemo experience you are all welcome to follow. It's http://3nbreastcancer.blogspot.com/ and may help some 3Ns either decided to do Chemo or who are on the journey with me. My Oncologist said the Chemo treatment gives us 3Ns about a 50/50 shot at remission. Ha! What a crapshoot! 

Debonthelake

Hi, everyone,

 Is it just being Triple Negative that causes blood clots or the chemo treatment that causes blood clots.? Does anyone know?  My Oncologist is in Nashville, but, trained at Johns Hopkins.  I thinks he's pretty educated about triple negatives he seemed to know a lot of research.  He told me that because I was caught so early and my margins and lymph nodes were clean that my chance of being cured were 70 to 75 percent even without chemo.  With chemo he said my cure rate was 80 -85%.  I sure hope he is correct.  I'd like to think I had more than a 50% chance of beating this thing.  I'm sure motivated to get in that vigorous exercise and start really watching that fat intake.  That is for sure.

FloridaLady

Chemo or radiatiion can up your chances of blood clots while in treatment.  I do believe mine was from radiation per the radiologist. As many TN ladies I've talk to I have not heard much of this.

Flalady

ibcspouse

Came across this article on TN

http://www.cancernetwork.com/display/article/10165/1340727

LRM216

Geez, that was an encouraging read!  Makes a newbie wonder if it even makes sense to do anything about it once your diagnosed. Seems you're damned if you do and damned if you don't. I hate this freaking disease.

Linda

guitarGrl

Linda - don't do that to yourself - many of us have gone through treatment & had relatively few bad things happen to us. It's a horrible diagnosis, but don't let that prevent you from doing all you can do.

You caught the disease early and you had no node involvement. As a librarian, I hate to say this, but sometimes we can read too much. Yes shit-happens, but good things happen too.

susan 

Debonthelake

Linda,

Hi, the really good news is that you caught it early.  Yes, the burden of the triple negative is frightening but all of my docs tell me that early detection is still the best chance of being cured.  I choose to believe my docs when he says that my cure rate is 85% with early detection and aggressive treatment.  Exercise and a mostly vegetable based diet and maintaining a good weight reduce cancer recurrence by an additional 50%.  It's a shock.  Our bodies have betrayed us.  But there is much we can do to fight.  Anger is a natural emotion when going through the shock and grief of a life threatening diagnosis.  Use the energy it creates to fight the disease.  There is hope.

And guitar girl is right.  You can read too much sometimes.  The articles in general are pretty negative but I love hearing about women who have made it past their 3 year anniversary.  It's empowering.  We're here to support you.

God Bless

Deb