are just so low.  We have a 10 year old daughter with autism and a very sensitive fifteen year old daughter who as a teen isn't being that close to her dad right now. 

I'm scared so bad.  She's had two rounds of Gemzar, Carboplatin and Avastatin. But we haven't gone to that appt where they assess any improvement.  I read so many of these places on the web that are very pessimistic.  I just would like to hear some stories where the chemo treatments did beat back the triple negative for a good while.  I almost can't work, I just want to be with her every minute.  But have to work because our youngest's autism theapies are so expensive.  Could anyone just give me a small bit of hope?  The internet can be cruel with these search engines. I want to hear something good and positive.

Very Grateful.

PM

 

I know how scary this is and understand what a daunting feat it is to stay positive.  When I found out that I had mets, I purposely refused to look at prognosis statistics.  I am not a statistic -- I have NEVER been normal a day in my life, so I assume that I won't be with regard to the prognosis statistics.  There was one day that a statistic slipped into my view and I was a mess for the rest of the day.

 

I was reminded that those statistics are OLD -- about 5 years old.  They have made MANY strides in triple negative.  True, they all revolve around chemotherapy and luck, but they are working on treatments now that could help make triple negative disease a chronic one.

 

I will tell you my story, to offer some hope, but I am only cautiously optimistic because it hasn't been that long.  When my mets were discovered, we did radiation on the tumor in my axilla and Taxol, Carboplatin, Avastin, and Erbitux for the mets.  In November, my PET/CT showed no evidence of disease.  It's been that way in subsequent test and my tumor markers are now within normal.

 

True that this could change at any minute, but someone did tell me that if they can get you to NED once, they can do it again.

 

I pray that this is true. 

 

I have to say that I am bolstered with the hope that I get from Cancer Treatment Centers of America.  They do not believe in 'incurable' and they go for cures.  They don't get them more often than not, but they go for it, which is more than some cancer centers.

 

Best wishes,

Caryn

 

It doesn't happen a lot, but it does happen.  And there is new research, and a new focus in the last year or two on triple negative disease. 

 

I was dx with mets in December and I have just finished my first chemo series with a complete response.  Currently no evidence of disease, and I'm off chemo with follow up scans in early August.  Already I have fuzz on my head.

The treatment will come to the end and there will be some good time!

 

I was on chemo for 6 months, unable to even get up and go to the bathroom!

 

I am lucky to have a great husband, strong and sound, he goes to work every day; somebody has to keep it up! I was so dissapointed, when he did not want to stay with me when I was after surgeries and when I was sick with chemo... but we are here alone... no relatives to help... two kids also... I found tons of support from other victims of this disease, co-workers and social workers at the BC centre. Hang in there! And keep fighting!

 

My goodness yes, the emotions play a huge part in all of this and it does affect loved ones.  I don't know about most husbands but I would guess that alot of them don't show their feelings but reading your posts have given us a peak inside the caregiver's mind who loves his wife very much and thank you for that.

 

I'm so glad progress has been made with your wife's treatment.

God bless you dear and she is very lucky to have you by her side.

 

My best wishes and keep in touch with us,

 

I have a friend: mets to kidney, lungs and brain, he is on oxygen now. They found out too late, he had problems with balance... it's not even a year...

 

I read an article somewhere, how people just dissapear from chat rooms, because they just... are not between us anymore...

sorry, but it is with me all the time...

 

http://www.tnbcfoundation.org/tnbc/forum/member_profile.asp?PF=990&FID=5 - danikunz77 has a thread about nutrition. She posted excellent sites: http://www.thedailyplate.com/ - http://www.thedailyplate.com/   http://www.cancerproject.org/ - http://www.cancerproject.org/ I think it's a great idea!!

 

I don't know if I'm repeating myself, but the first CT scan after months of chemotherapy showed and this is direct dr.'s words, "Significant decrease in the entire lymph node system... in some places, such as the neck where they did the initial biopsy they said they found none.  My wife and mom in law were disturbed the doctor didn't seem the least interested in the tumor in the breast (taking action, etc). But as a medical professional who speaks this stuff for a living I voiced what I could tell was their questions that the doctor wasn't hearing.  Since she is stage IV, a masectomy is not even considered..since the goal is to beat the cancer that has spread outside of the breast and into the lymph nodes. They found no new growth and only "significant' depletion of the cancerous cells that had infiltrated almost all of the lymphatic system. 

 

My fear now is that once I heard that the first treatment is always the most effective; that after that the CT scans to follow will not be so dramatic and it is then that things start to level out. I am scared because I worry that even shown to be a wonderful responder that somehow these cancerous cells find a way to avoid being annhiliated; thus shooting down my greatest hope that we can beat them back...out of the lymphatic system and since there are none in the organs, I would hope that the tumor would someday be contained to the breast.  Am I just wishing?  Has this ever happened to anyone or have you ever heard of it happening. At 40, my wife is vital to our household with our youngest child having profound autism and my oldest daughter the tender age of fifteen.  It is a nightmare to me to even think of losing her; because I'm just a clumsy father who would feel so scared of the worst scenario.  But, I am grateful for that first CT SCAN.  What if they had come in the room and said, you are not a responder.  The chemo didn't move the existing cancer cells in your lymphatics.  I am grateful. But I will not lie in that I am desperate in disguise.  I would trade with her.  Anything.  I'll pray for good things, and I most sincerely wish for all of you nothing but the best of news and progress and FIGHT!   Much Love, PM

 

How wonderful, wonderful to know Susie has responded so well to the chemo. They have been changing their thinking regarding mastectomies for stage-IV disease. There has been another school of thought emerging that by possibly removing the tumor in the breast it would lessen the tumor burden in the body.  I wish I had remembered to mark the article discussing mastectomy for stage-IV disease but I unfortunately cannot find it readily to let you read.

 

I will keep looking.

 

Connie

 

P.S. I felt better once the tumor was removed including the breast - but that is just my opinion.

 

 

Thank you for letting us know.

 

So, it's been three weeks since you found out that Susie is responding to chemo.  How long until they test again?  I believe that they will use chemo until the cancer becomes "refractory" to it (meaning that the cancer has mutated to where it is resistant) and then switch to another chemo.  Unless the cancer is vanquished and she becomes NED, in which case she will have a chemo break until it comes back.  I'm hoping that she will get to that point at some time!  I'm hoping that I can last until treatment is developed that will target our cancers, but that seems a long way off.

I was giving out hope until I met with several women who lived past 10 years!!!! They all had tumors in BOTH breasts AND LYMPH NODES!!!!

They are still around and healthy!

Do not give up!!! Believe!

 

But they are still comming up with the stats, that it doesnt's matter, BC is systemic disease; and that ... TNBC is aggressive, so it spreads into the other organs, maily lungs and bones... 

After what I have read about genes and proteines, they will find cure, eventually, hopefully soon enought for my daugher.  Counting my mother died in 2003 and I got diagnosed in 2007.  That's only 5 year span, at least my mom did not know about my diagnosis!

 

I do not think it's anybodies fault: not exersizing, eating chocolates or drinking red wine,...

 

I went back to work...

They did not expect me to make it! ...

Two people told me about their sisters passing away...

Where is this comming from?

 

 

Or telling me: Why did YOU make IT?

 

My aunt has been battling tnbc for a year and a half now - chemo, mastectomy, radiation - mets to her lymph nodes and lung.  Nothing has been effective.  We are considering alternative medicine - has anyone heard of the Orange County Immune Institute in California or any of the centers found in Mexico...  Thanks.  Strength to all of you! Milaine

 

I do not know anything of these institutions but look at http://www.quackwatch.com - www.quackwatch.com and see if they are listed. Perhaps get a second opinion from a NCI accredited hospital before somewhere unsubstantiated.

 

Please let us know what chemo has been tried...and if you want to look at complementary treatments along with mainsteam medicine(unfortunately I know one very knowledgeable lady is on a cruise one and she has a wealth of information regarding stage-IV disease) and goes to a Cancer Center of America. See what they may have to offer. I know that they do not accept all insurances...but I do know they have mainstream and other supportive treatments along with the usual medical protocols.

 

I just fear that your aunt and her money leaving her will have more activity than her cancer spread being halted or improved if the alternative therapy place is not giving effective treatments.

 

There are many women who have battled stage-IV metastases for years...please do not give up hope or your money too quickly.

 

Connie

 

 

I am also a caregiver. My wife dx 08/01/2008 tnbc grade 3. It is so important that we are ever so strong for the ones we love. I can tell you that what ever path our lives lead it is so much stronger to do it with the ones we care about the most. I have cried with her and with out her. But I make every attempt to not let her see it getting to me. I have got to be strong and positive for her and the children. As you do for yours. We completed the bone scan last week and got the first bit of good news since the dx. Bone scan clear. :):):)We did the cat scans today and are awaiting the info on that. She is scheduled for the bilateral masc on Friday . I am on pins and needles right now just waiting to her about the cat scan.  The journey is just beginning for us. Stay strong and god bless.

 

 

Bill

 

Good news on the clear bone scan. Many people do not realize how with each scan...our stomachs migrate up to our throats and we seem to hold our breath until we get the results.

 

Just keep holding her hand Bill and your wife will feel the strength and love pouring into her.

 

It is very exhausting being strong for everyone...so if you are overwhelmed please come here, speak all your fears, ask all your questions and we will try to help you through your wife's treatments.

 

 

Connie

 

Thanks so much for the support. All of you are incredible women. While I am sorry that there are so many of us it is awesome that there is a place for open communication and support. The internet can be a scary place but a wonderful place when put to good use like this forum. All of you are in my thoughts and prayers. Booboo has been discussing wether to cut her hair or just let the cards play out when she starts chemo in 3 weeks. My advice to her for what it is worth and to all would be not to allow bc or chemo take their hair from them but to do it on your own terms. She decided it was going to be her decision to cut her hair and was going to do it on her own terms not because of chemicals. She looks great.

 

 

Bill

 

When you look at her remember the moment you fell in love with her and that will show on your face and in your eyes...because even though my husband has not made me feel different in any way....I saw in his eyes the 1/millionth of a second look that passed through his eyes the first time he saw the mastectomy incision. Women are really quick to pick up on those kind of things...I saw the pain in his eyes.

 

 

It is not intentional but it is more a physiologic response - so just take a walk back through your mind and get that image right up front.

 

Good for you for making her feel empowered to cut her hair on her terms!

 

Connie

We must believe.

 

She was given platletes through tranfusion to keep them up.  They were 9,000 and now are up in the 50,000 range. 

 

Prior to the hospitalization, they had to give her platelets as well so that she could continue with chemo treatments.  You should ask if your wife can have platelet tranfusions.

 

How low are her numbers?

 

Even if her platelets are ok, keep an eye on them because the normal is above 100,000, and below 50,000 is considered critical in the medical field.

 

You two are sure having a tough time right now and it is certainly understandable.  You sound like you are just worn out.

Do you know that it is important to the patient but also for the caregiver to get much needed rest?

 

I hope things improve for your wife soon, let us know how you are both doing.

If you are at any time concerned about your wife's treatment you can always get another opinion.

 

Is there someone who can share a bit in the care and support for your wife so that you can take a break occasionally?

 

I wish I had answers for you.

 

Prayers will be said in OK,

 

 

 

 

 

 

 

 

 

 

 

That is good news that Susie's counts were good enough to get her chemo.  I'm so glad she is feeling better.

 

Paul going thru this rocky time I am sure you have found out there will be good and bad times until the treatments have accomplished their goal.

Sometimes one day at a time or even one hour at a time is all that we can do so don't be so hard on yourself.  Things will work out. 

 

It is also hard not to look off into the distance and wonder about what will be.  We don't know that so do the best you can to save your energy and focus on today and yes it is very hard at times!!

 

Come here and talk to us anytime.

 

 

Dr. Carey accepted our request that she visit with us and for that I am grateful.  Yet I believe even before we bought our airplane tickets, Dr. Carey pretty much had in mind what she was going to tell us and the role she was going to play both for us and for our hunting that second opinion.

 

To skip right to it.  The meeting was a brief one.  No blood taken, anything for that matter.  She was polite enough to give some of her valuable time to speak to us, and her main focus was to be very truthful. Very Blunt. And that is what she was and that is how the entire meeting went. Barely lasted over 30 minutes after we got to see her.

 

The bottom line, Dr. Carey told us. Is there is no crystal ball.  Thus, the reason our Vanderbilt doctor cannot be more certain in selecting the chemotherapy.  In many respects it was almost identical to the first time the doctors at Vanderbilt came in and gave us the verdict; which is that this is an incredibly hard type of cancer to beat. There are no silver bullets, and she even took what I think she felt was necessary to remind us that for many with this level of triple negative with metastasis; two years seems to be the average.  It was almost a TOUGH LOVE type of visit. Kind of a message that you can travel all around the country, if you choose too, but the treatments are all known by all these good medical centers and none of these doctors have a "crystal ball" to tell whether one regimen or drug will work over another. 

     She did not do this to be cruel. Not at all. It was more face the reality of this disease state kind of tone.  But Susie's tears began to fall as we realized this little discussion was it. Our whole trip to UNC was for a half hour of a generous and smart doctor fighting triple negative to remind us that even with a variety of medical centers and different arsenals; the life expectancy is not good. And we are all trying to do the best we can.

     Of course we had a small piece of hope for something magic. That's why we flew to UNC.  She just was practical enough not to waste our time, run unecessary tests, etc.  But it was very deflating.  I would be lying to you all if I didn't say that. She used that 24 month number again as we've heard before. So, despite the fact this doctor was extremely kind to let us make this flight in order to hear this from another respected doctor, we left the medical center and headed back to the parking garage to our rented car extremely sad.  Feeling foolish even.  Our youngest child has an Autism disability and therefore neither of us wants to leave this Earth because we want to protect her for her life.  So its not just my wife or I. I would trade with her so my daughter could have her mother for a long time.  So, we went back to our hotel room and for hours without words, we just "spooned". Held hands. In relative silence.  We will not surrender, you can count on that.  But cannot some cases of remission occur just as mysteriously as when the cancer descended?  Forgive my mental state tonight. If we had not gone to UNC, we would have been at MD ANderson and I feel they would have given our Insurance a nice spin with tests and other things; only to come back with the same type of delivery.  In that regard, Dr. Carey performed that role.  I doubt we will go anywhere else.  It showed Vanderbilt is right there with all the other good centers.  But quality of life; given this terrible life span prediction, is important. Before we balked the first time at Vandy, they were going to give some of the harsher chemos to Susie right around her most important time of year; for her spirit!!!  Navelbine seems to be doing well, at least for now.  And nobody knows the future.  But I think our travelling is over.  We will work with Vanderbilt, and we will focus, pray and wait for an against the odds remission.  Sorry for going so long.  We just had to get bonked in the head to realize the doctors are smart, but cannot themselves know which chemo will cause which results for a particular individual.  I want to thank all of you for your support.  As the days go on, I will be still glad we made that trip.   Love to you all.. PM (zen)

 

Thank you for sharing your experience. I am sorry that Dr. Carey could not give all of us the name of "the cure drug" that we all are waiting to know they have discovered. It may not seem a comfort but it was wonderful of you to leave no stone unturned and remove any doubt regarding the appropriate treatment for Susie.

 

Please know we care.

 

Connie

She passed away on her birthday this past October 15, 2008.  February 2009 would have been two years since the diagnosis.  I pray that your wife makes it through this...but I am telling you this because I don't want you to run around trying to cure her so much that you forget to spend the moments and enjoy them with her.  Comfort her, love her, encourage her to speak of her feelings including the fears. 

 

It's unfortunate that great people are hit by this devastating disease.  I hope that you would take my advice as being harsh or not hopeful.  Just make sure that things are set in place.  If she recovers and beat this disease, at least she would have less things to do as she gets older, and if not, well, your child would be taken care of.

 

My mom was positive the entire journey, she never drank, smoked, she was active, and ate really healthy.  The doctor was even shocked to find out that she got triple negative breast cancer.  I pray for the sake of your heart that you do not have to feel the way that I am feeling now.

 

I will keep you in my thoughts and prays.

 

I AM NOT DONE YET AND HAVE YEARS LEFT.  THERE DOESN'T HAVE TO BE EVIDENCE FOR THIS ASSERTION. 

 

CARYN (starting my third chemo, this time for EARLY leptomeningeal mets).

 

My prayers and love to you and your family.

What type of chemo will you be on and for how long?

personally, I can't stand stats-they mean nothing.

 

He's pulling out all the stops.

 

love,

caryn

 

I have been following your updates on your carepage, and since you have posted here tonight...actually morning...I will just tell you that we all love you and care deeply about and for you.

 

Much love,

Nancy

 

 

 

No offense taken.  Just that I'm facing this deal right now.  And that time line is too close for me and I need to complement that energy with strong possibility of healing and hanging in for when they make breakthru in making this as chronic as my hormone positive sisters.

 

Re your wife:  Have they discussed PARP inhibitors for her?

 

Caryn

 

Of course you are not a stat just as you and Paul say, that is so true!

 

You are one of the strongest women I've yet to know and have fought this monster and came out on the other side more than once.  You aren't going anywhere, this is just another bump in the road and you can handle it.

 

Hugs,

 

Now, I wonder if they want to pour it into my head.....LOL

 

Hugs,

Caryn

         How often have you heard the expression "you can't keep a good woman down".Girlfriend you are like that enegiser bunny.You just keep going and going and going.My goodness you are amazing.Each day I think that CarynRose will have to REST today and low and behold,everyday, there you are again.

        We are never to far from you as you are showing us every day that you are never too far away from us.

       I can see a  a circle of you holding hands,so many of you,along side you and zenrookies wife,too many NAMES for this old brain to remember,But I can promish you that around ya'lls circle is another circle and that is all of us joining our hands to try to give all of you the strength that is needed every day to continue the fight.

       So many cyber hugs that my heart sometimes feels as if it wants to jump right out of my chest.They are good cyber huggggggssssss   Billie

 You are so right and I am sorry about your Mom. 

I believe in miracles too and from what I have read here, the stats seem to be wrong alot!!

 

I have been metastatic since June 2006 and have been constantly on chemo since.  Different chemos, most didn't work.  But if you do your math, I'm already post my 24 months.  I don't want the 24month thing to become a self-prophecy for Susie.  A lot of us here are past 24months.

 

I, too, had a consultation with dr. Carey at UNC (I live in California) a few months ago.  We know that she is the leading expert in triple negatives.  However, I agree that she was pretty "conservative" when giving me treatment recommendations.  In other words, she didn't really step out too far from "proven data" and "statistics".

 

Fortunately, I have a "forward thinking" oncologist locally here.  He ordered tests that MAY help him making educated decisions regarding treatment choices.  We both believe that knowledge is power.  We sent in a biopsy tissue for a molecular profiling, where they tested what genes or proteins were making up the tumor.  Based on the genes/proteins on the tumor, the doctor may find a targeted therapy for the tumor (that's not necessarily a breast cancer drug).  If you'd like more info please feel free to pm me.

 

By the way, I think one of the next new drug that will be approved specifically for triple negatives may be Dasatinib (Sprycel).  My oncologist is anxiously waiting for reports on it at the San Antonio Breast Cancer Symposium next month.

 

There are so much hope out there.  Please tell Susie that and please give her my hug...

 

No one, absolutely no one knows.