TNBC Metastasis/Recurrence Users - Diagnosed with Liver and Lung Mets

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Diagnosed with Liver and Lung Mets

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Topic: Diagnosed with Liver and Lung Mets

Posted By: snickers
Subject: Diagnosed with Liver and Lung Mets
Date Posted: Jun 13 2012 at 9:07pm

I am in a total shock. I had a bi-lateral mast. did 6 months chemo (a/c + taxol) and went to the doctor yesterday to start radiation on my chest wall to reduce chances of re-occurrence. I asked the doctor to do a full ct scan as I was experience some small pain in my lower sternum. Found out today that my cancer had metastasized to my liver and lungs. My chemo doctor is shocked as no one has re-occurrence or metastasized so quickly after chemo (I finished my last chemo in May). Chemo did not touch/stop my cancer. So, chemo onc. is going to try and find me another chemo treatment to stop the continual growth of my cancer to liver and lungs. I know that my days are numbered and am so shocked as I am only 49 years old and have done EVERYTHING I could do to stop this nasty disease from spreading. I am not sure if anyone knows of any drugs/treatment/chemo that can help me at least live for another year or so.

thank you
Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Replies:

Posted By: 123Donna
Date Posted: Jun 13 2012 at 10:52pm

Snickers,

I'm in shock too. I can't believe this after just finishing chemo. I'm not sure where you are being treated, but can you get a second opinion regarding treatment, maybe from MD Anderson (Dr. Gonzalez), Dr. Carey or Andrews and UNC-Chapel Hill? There are lots of other chemos you can try. What about clinical trials? My friend has a gynecological cancer and she had her tumor analyzed for chemo sensitivity to identify which ones would work the best. She's been stage 4 for two years now and her tumors are stable.

Here's a link to clinical trials for metastatic TNBC. You can further refine the search to the state you live in or facilities close by.

http://www.clinicaltrials.gov/ct2/results?term=metastatic+triple+negative+breast+cancer&recr=Open&no_unk=Y - http://www.clinicaltrials.gov/ct2/results?term=metastatic+triple+negative+breast+cancer&recr=Open&no_unk=Y

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Grateful for today
Date Posted: Jun 14 2012 at 12:59am

Snickers,

Just wanted to send some caring and supporting thoughts to you.
You got thru the shock of the initial TNBC diagnosis.
You will get thru this new shock......and what a shock......so hard to fathom life.

You have a lot of strength and you know how to research info........as you did about radiation.
Have your consults.......gather the information.

With a warm cyberhug and plenty of good thoughts,
Grateful for today..............Judy

Posted By: turtle
Date Posted: Jun 14 2012 at 1:22pm

Oh Snickers,

I am so sad to hear this. This just seems so unfair right after ending chemo, and offering yourself up to yet more treatments. I echo what Donna and Judy have said, particularly with respect to looking for clinical trials, and being prepared to be as aggressive as you care to.

We are here for you, please feel free to vent if you need,

cyberhugs

-------------
DX IDC TNBC 1/15/12 @ 46; MRI 2.4cm gr3 BRCA2+ 6174delT; LMX 1/31/12 2.5cm, pT2pNO(i)pMX, lymphovascular invasion present; 2/20/12 TAC X 6; 7/2/12 Rad X 25; 9/27/2012 2nd mastectomy & BSO surgery

Posted By: TriplePositiveGirl
Date Posted: Jun 14 2012 at 9:33pm

Dear Snickers,

It is hard to know what to say. I can totally feel (and understand) your shock and despair. I am your age, and this really hits home for me too. I know the idea of more chemo is unsettling to say the least, but hopefully, your doctors will find the RIGHT combination that will get you back to NED. Don't give up hope. From what I have been reading, there are many new and effective drugs in trials that have fewer side effects and offer much hope to cancer patients experiencing recurrences and mets. Celldex is one drug that is showing great promise.

I will be thinking of you often, please keep us posted with your progress.

Love and Hugs to you,

Lisa

Posted By: Tonya98
Date Posted: Jun 14 2012 at 10:46pm

Snickers,

This is competely unfair and I understand your shock. But I want to tell you my story to give you some hope. I had a recurrence 3 short months after finishing rads. My doctors were very concerned for me. I thought I was dying. Well, that was over four years ago. At this point, I'm considered stable and have been for two years.

I agree that a second opinion is in order. AC/T didn't work for you and it didn't work for me but there is lots of other treatments to try. Please let us know how you make out. I'll be thinking of you.

Tonya

-------------
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016

Posted By: rmichaels
Date Posted: Jun 15 2012 at 12:27am

hi There,

The same thing happened to my mom but much earlier in the chemo protocol. It just plain sucks.

She going to do her third round of Cisplatin + Vinorelbine and then a scan to check progress. The Onc Doc says this is an aggressive round so I'm hoping it's the magic cocktail to get some tumor shrinkage.

Stay strong!!!

Rachel.

-------------
Mom dia 8/11 with IIb - IV by 11/11 with mets on liver. 17 rounds Taxol/Carbo then Taxotere, Cisplatin + Vinorelbine, 2 tx of Doxil, Xeloda all unsucessful. 10/12/12 Hospice @ home. Passed 11/7/12.

Posted By: snickers
Date Posted: Jun 17 2012 at 9:26am

Ladies

Has anyone else out there who have just finished chemo have come down with mets? I need your advice!! Has anyone also had mets to the lung and liver that was "controlled" or had shrinkage? I am trying to be hopeful, but also realistic. I am not looking for a miracle cure, just one that will give me a few years. Please help!

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: TriplePositiveGirl
Date Posted: Jun 19 2012 at 1:12pm

Hi Dawn,

I was just reading on another thread today about how Gemzar/Carboplatin got rid of lung mets for another woman who had a recurrence only 4 months after her bi-mast. Maybe this could be a helpful chemo combo for you. I too had gemzar/carbo neo-adj for my tumor. I know that it did reduce the size of my tumor prior to surgery significantly (I only did half the cycles before surgery, then the other half after the surgery). I know that Gemzar is used often for pancreatic cancer as well. Another positive is that there were fewer side effects to this combo.

Lisa

Posted By: TriplePositiveGirl
Date Posted: Jun 19 2012 at 1:13pm

Dawn - the members name was Kita who just posted today...maybe you should connect with her?

Posted By: Kita
Date Posted: Jun 19 2012 at 6:34pm

I also had a quick recurrence after my bmx and chemo. The lung mets are gone now but I didn't respond to my last chemo do now it's on to another one. My dr reminds me we have many choices, I've used quite a few already but I don't give up hope. Try to get on a parp inhibitor trial there are some all over. That's my next try if this Abraxane doesn't do the trick.

Posted By: snickers
Date Posted: Jun 19 2012 at 7:58pm

Kita
Can you tell me a little more about your treatment, including dates of orig. diagnosis, what orig. treatment you had, etc? What chemo did you not respond to on last chemo?

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: Kita
Date Posted: Jun 19 2012 at 10:06pm

In oct 2010 had a lumpectomy to remove a mass that they thought was fiber. Turned out to be cancer that had already gone to my internal mammary nodes (non operable) had taxol/avastin for 16 weeks followed by 8 weeks of a/c. Then pet scan was Ned in April 2011 so u had a bilateral mastectomy. In aug 2011 I was having scans for radiation and found out the cancer was back in the same place plus 2 spots on my lung. Went on a clinical trial with gen/carbo and a kinase inhibitor which worked for about 6 months and got rid if the spots in my lung. My blood counts went too low too many times so I had to get off the trial and I went on xeloda/Ixempra which didn't work. After 12 weeks in that I had progression so now I'm on Abraxane (similar to taxol) and might go in a clinical trial of parp inhibitors if I need to after this.

Posted By: denise07
Date Posted: Jun 19 2012 at 11:33pm

Snickers,

I am so very sorry you have to deal with this. I am praying your next line of chemo will knock those darn cells to the curb. Did you ask about the parp trials? There are some promising treatments out there, I am sure your onc will treat you aggresively if not may be a second opinion is in order it never hurts. I am praying for NED for you. I am here for you.

Hugs,

Denise

This tnbc sucks!

-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes

Posted By: denise07
Date Posted: Jun 19 2012 at 11:37pm

Kita,

I am also sorry you are dealing with this also, the good thing is that your lung met is gone don't give up keep the treatments going, praying for NED for you also.

Hugs,

Denise

-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes

Posted By: denise07
Date Posted: Jun 19 2012 at 11:40pm

rmichaels,

Praying for your mom also. I hope this one is the magic cocktail too. Hoping for the best.

Hugs,

Denise

-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes

Posted By: Grateful for today
Date Posted: Jun 20 2012 at 12:57am

Rachel and your Mom, Tonya98 and Kita,
        Sending lots of caring and hopeful thoughts.
                      Grateful for today...............Judy
======================================================

snickers,

Sending you caring thoughts for your Tuesday appointment.

Do not have any specific info on sunitinib (sutent) and laptanib (Tykerb) which you had asked for
info on another thread.

Had some thoughts...................
- When you consult with your physicians on your plan of care, consider the input of all -
    the medical onc, surgeon and rad onc. Mentioning this as somewhere on a prior thread,
    someone mentioned not to forget the surgeon and rad onc for what they have to offer for
    the plan of care in addition to the med onc.
- When there is distant disease (lung and liver), one works with one's physician for the best
    plan of care for one's particular situation.   The input of additional consults at Comprehensive
    Cancer Centers with TNBC expertise is something to consider.
    Think your rad onc had access to several experts re: radiation plan of care. Hopefully, your
    med onc also has access to other experts for exploration of all and the best options for you.
- One might consider asking the medical oncologist:
             Would having any particular chemo drug now exclude certain chemo drugs in the future?
               (Believe there is at least one chemo drug that once one has that drug, there is another
                  chemo drug that one would not be able to have in the future.
                  Cannot remember which drug it is.
                  Hoping this matter will be a non-issue for you in that the first plan has good results)
- One might also consider asking the physician:
           Specifically, the pros and cons of each option given.
- Donna has already put the link for clinical trials in an above post......which you may consider
    printing and bringing to your appointment.
    You may have already noticed that Tanya (had lung nodules) had posted on http://forum.tnbcfoundation.org/taxol-avastin-metmab-trial_topic9662_post101825.html?KW=#101825 - http://forum.tnbcfoundation.org/taxol-avastin-metmab-trial_topic9662_post101825.html?KW=#101825
     about her results with a clinical trial.
     Think the clinical trial is: http://www.clinicaltrials.gov/ct2/show/study/NCT01186991?term=breast+cancer++MetMab&recr=Open&no_unk=Y&rank=1&show_locs=Y#locn - http://www.clinicaltrials.gov/ct2/show/study/NCT01186991?term=breast+cancer++MetMab&recr=Open&no_unk=Y&rank=1&show_locs=Y#locn

With thoughts of strength and care for you,
Grateful for today...............Judy

Posted By: snickers
Date Posted: Jun 20 2012 at 7:24pm

Judy and others....
I met with my med. onc. today and he said I had no mets to brain, small mm nodules in both lungs, a few "suspicious" but can't confirm activity in my upper left rib and right hip, but can't confirm if it is mets. The biggest concern is the mets to my liver, which are numerous, largest being 8.5 cm. He said if we do not get that under control soon, I am not long for this earth. He will be starting me on Carboplatin and Gemzar this Friday and will do 2 cycles (6 weeks), re-CT scan and see if chemo is doing any good. If not, he will switch me to Xtempra and Xeloda and if that does not work, Carboplatin and Avastin. The curious thing about all this is my liver tumor shows 10-15% estrogen receptor positive....weak to moderate reactivity. With that said, the pathology report still support a dignosis of metastatic breast cancer from my left original breast tumor, so this is not a new cancer. Has anyone had mets that came back positive for estrogen or progesterone and if so, what does that mean?
I am going to seek a second opinion at University of Washington, who has an expert on TNBC. Won't change my prognosis, but maybe shed some light on my situation.

thanks for all the support and cyber hugs!!!
Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: Grateful for today
Date Posted: Jun 23 2012 at 2:10am

Hi Snickers,

Thank you for taking the time to update us with your treatment plan.
Hopeful thoughts for the carboplatin and gemzar.
So good to hear you will also get a 2nd opinion at University of Washington.
There is a thread on gemzar-carbo treatment that may or may be helpful:
     http://forum.tnbcfoundation.org/gemzar-carbo-treatment_topic8136.html?KW=gemzar - http://forum.tnbcfoundation.org/gemzar-carbo-treatment_topic8136.html?KW=gemzar
There are 2 threads on gemzar:
     http://forum.tnbcfoundation.org/gemzar-and-gamma-knife-treatment_topic9903.html?KW=gemzar - http://forum.tnbcfoundation.org/gemzar-and-gamma-knife-treatment_topic9903.html?KW=gemzar
     http://forum.tnbcfoundation.org/gemzar-any-familiarity-with-this-chemotherapy_topic9900.html?KW=gemzar - http://forum.tnbcfoundation.org/gemzar-any-familiarity-with-this-chemotherapy_topic9900.html?KW=gemzar

A few others have posted that their receptor status changed.........some had the change
on the surgery path after neoadjuvant chemo and some had the change with distant recurrence.
Don't remember the specifics.....but maybe if those members see this post, they might also post.
The issue of possible heterogeneity of a tumor may explain some of the receptor changes.
The initial diagnostic biopsy only checked part of the tumor......? if the entire tumor had all the
same receptors.   There could be the question on some cases where the path report after surgery
was not inclusive for all the receptors thruout the entire specimen.
There are a few articles on tumor heterogeneity on page 7 on 3/8/12 11am on:
        http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440_page7.html - http://forum.tnbcfoundation.org/open-access-links-articles-tnbc_topic9440_page7.html
Note: Others please post any additions or corrections to what I said about receptor status change. Thanks.

Sending you lots of caring and supportive thoughts with plenty of cyberhugs,
Grateful for today............Judy

Posted By: TriplePositiveGirl
Date Posted: Jun 23 2012 at 2:37am

Hi Snickers,

I hope the first cycle of gemzar/carbo went well. I was just thinking about you and hoping this gets this stinkin' disease under control for you.

Big Hugs -

Lisa

Posted By: snickers
Date Posted: Jun 23 2012 at 10:40am

Judy, Lisa and everyone else...
Yes, I had my first treatment of carbo/gem yesterday and no side effects as of yet. I am a leader for Guide Dogs for the Blind and we train puppies in socialization, basic obedience and good house manners and I am off this morning to meet with my puppy raisers at the local cemetery (lol got to find some humor in that!!!!) to practice dog training. I feel great this morning and am so glad I am alive and am very thankful of everyday I wake up. I have quickly learned that one MUST live for the day, do not wonder about tomorrow.
Eleanor Roosevelt said: "Tomorrow is a mystery, today is a gift, that is why it is called the "present."
Living with metastatic breast cancer changes your whole outlook on life and truly makes you more appreciative of TODAY!!!

God bless all of you wonderful women, with your strength, humor and WILL TO LIVE!!!

cyber hugs
Dawn "aka Snickers" (my beagles name)

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: TriplePositiveGirl
Date Posted: Jun 23 2012 at 2:37pm

Amen sister. Those are words all of us need to live by!!!

PS - I have a beagle too...:)

Lisa

Posted By: turtle
Date Posted: Jun 23 2012 at 4:47pm

Hi Snickers and all!

Just got back from a great week at the beach with my family. Lots of quality time with the kiddos...that's what it's all about right? The QUALITY of our lives, not the QUANTITY!

Really glad to hear you are feeling well after the carbo/gem treatment, snickers, and are up, about, and doing things that make you happy. I am so worried about you...

BTW, we adopted a dog this past Christmas from our local 'kill' shelter. My kids had been begging for a dog for years. I'm so glad I did it, she's a great dog. Her name is Alaska, and she's a beagle/huskie mix (mostly beagle, but with the blue eyes of a huskie). If I can figure out how to do it, I'll try to post a pic, or maybe use one as my Avatar.

Hugs

Posted By: miffyjones
Date Posted: Jun 23 2012 at 5:57pm

dear snickers - i read your post and just had to let you know about my story in the hope that it will maybe provide you with some help through this rough time. i was in a very similar situation to where you are now in september last year. like you i had just had bmx, 3 x fec and 9 weeks taxol followed by 5 weeks daily radiation. that did absolutely nothing to stop my cancer as it had spread to both lungs, internal mammary nodes, liver, bones ... it was everywhere - lots of tumors, large and small - aggressive growth rate in the 90s - and my onc told me i had months only. after talking to lots of women on this site and gathering as much info as possible from here, i challenged my onc's initial treatment proposal of capecetabine only and instead underwent cisplatin / gemzar / avastin combo on a 3 weekly cycle. Multiple tumors disappeared, i got shrinkage of +50-80% on the rest, and i'm now taking a break after 6 rounds to get my white blood cell count back up. I'm not sure where i'm at at the mo but i have another ct scan next week but i'm feeling well and praise god i'm still here. HOpefully this new drug regimen will work magic for you too. In my thoughts and prayers. M

-------------
11/10 TN Multi Focal Tumor RBreast DCIS left. 2/7 Nodes. BRCA2+ 3 x FEC 9 x Taxol 5wks rads. Nov '11 Multiple Mets lungs, liver, sternum, mamary nodes. Cis/Avastin/Gem 3 wk cycle. Jun12 stable disease

Posted By: Grateful for today
Date Posted: Jun 27 2012 at 3:08am

Dawn "aka Snickers",

Good to hear the first carbo/gem went well 6/22/12.

Admire people who are involved with the dog training programs for the Guide Dogs for the Blind.
What a worthy program you are contributing to.

Thank you for reminding us of that great quote of Eleanor Roosevelt's.....which is so true......
"Tomorrow is a mystery, today is a gift, that is why it is called the "present."

In addition to what I posted above (on 6/20 and 6/23), thought of 3 others things you might want to consider asking your MD and on your consult.
These may still be in the research stage......mentioning just in case your MDs know of ways to
get info on/get your specimens tested for: (to help with chemo decisions/clinical trials considerations)
-     Platinun response markers:
Prior thread: http://forum.tnbcfoundation.org/dna-marker-could-predict-response-to-platinum-chem_topic9764.html?KW=carboplatin - http://forum.tnbcfoundation.org/dna-marker-could-predict-response-to-platinum-chem_topic9764.html?KW=carboplatin
which includes: http://news.harvard.edu/gazette/story/2012/03/insight-on-triple-negative-breast-cancer/ - http://news.harvard.edu/gazette/story/2012/03/insight-on-triple-negative-breast-cancer/
-    Avastin markers:
Prior thread: http://forum.tnbcfoundation.org/genetic-marker-test-for-avastin-patients_topic9761.html?KW=marker+avastin - http://forum.tnbcfoundation.org/genetic-marker-test-for-avastin-patients_topic9761.html?KW=marker+avastin
Seems like drug company started study only around March.....but maybe your MD might know if
anyone was doing work on this prior and has some info???
-     28 gene tumor panel:
Beth mentioned about sequencing of a 28-gene tumor panel on my tumor sample at the Siteman Cancer Center/Washington University Med on the thread:
    http://forum.tnbcfoundation.org/ct-scan-this-morning_topic9532_page5.html - http://forum.tnbcfoundation.org/ct-scan-this-morning_topic9532_page5.html

With caring and supportive thoughts and plenty of cyberhugs,
Grateful for today..........Judy

PS: Do you prefer.....snickers.......Dawn........Dawn "aka Snickers" ?

addendum PS2: Donna posted today this article link:
                             http://www.cancer.gov/ncicancerbulletin/062612/page3 - http://www.cancer.gov/ncicancerbulletin/062612/page3

Posted By: snickers
Date Posted: Jun 27 2012 at 11:01am

Thank you everyone for giving me such wonderful support. I am hanging in there. My husband and I threw a pizza and movie party yesterday for any child in our town who wanted to attend. We live in a very small rural town of about 1500 people. My husband and I are retired aerospace workers who moved to Washington State five years ago and decided to substitute teach. During our teaching we got to know the kids very well (graduating class each year is about 30 students) and many of them call us "mom" and "dad" and come to us for advice.
Needless to say, about 60 kids showed up yesterday for 4 hours of fun with lots of laughter in the house. Again, I am so blessed. I have been praying to God to give me a few more years as I have a bucket list I want to finish.
Bucket List:
#1)start up and sustain a "Read With Rover" Program. I have a retired Guide Dog for the Blind, Smitty, that recently retired and came back to us and he just received his certification to be a therapy dog. I want to take him into the Manson Elementary School and have the kids that are having difficulty reading, read to him. This gives the kids the confidence to read out loud without feeling intimidated by others.
#2) I am a leader for Guide Dogs for the Blind, and I help raisers train their 8 week old puppies in obedience, socialization and house manners until they go to "college" at 15 months old. Before I die, I want the club, Pups 4 Partners, to be strong and have someone take over for me as leader. I have not found that person yet, as our club is only 6 months new and no one has ever raised a puppy before.
#3) See my "adopted" daughter, Yesenia Escoto, (one of the Manson kids who my husband and I have mentored for years) graduate from college next year. I am so proud of her. She is home for the summer from college and comes over everyday to make sure I am not working too hard around the house. She works 15 hours a day, working two jobs, to help pay for her college tuition (straight A's) so she does not have to take a student loan out. She is an amazing young lady.

I love receiving all your thoughts and prayers as it keeps me strong and focused. Life is full of challenges and human beings are so adaptable. When I first heard the news I had TNBC, I really thought I was going to conquer this disease. My onc. said I was metastatic from the beginning even though I was diagnosed with Stage 2A. No lymph node invasion, but lymphatic vascular invasion (those pesky cells traveled through the blood vessels vs the lymph nodes). So, here I am, praying for a few more years versus winning this battle. My faith and love of my family, friends and doggies keep me strong!
Thank you ladies for your support! I love all of you!

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: turtle
Date Posted: Jun 27 2012 at 11:21am

Dear Snickers,

Now and always, we hold you in our hearts....

wishing you all the best!

Posted By: 123Donna
Date Posted: Jun 27 2012 at 11:26am

Dawn,

I hope you have many, many more years to conquer that bucket list. I admire all you have done and are doing. You are an amazing person.

Hugs,
Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: Grateful for today
Date Posted: Jun 27 2012 at 11:48pm

Dawn "aka Snickers",

As I was reading your "Bucket List"........thought......hopefully Snickers has some things for herself on
her list! I try to respect everyone's privacy so am definitely not asking you what's on your list for YOU.
Just hoping as you are so good and generous to others......you are also good to yourself.

I love to hear the stories of people who keep adding to their goals.......to see a child graduate from
grade school becomes to graduate from high school....then becomes to graduate from college........
Seems like you may be one of those people who keep adding to their goals !
In the meantime, as you said, we have the gift of today, the present.

With lots of caring thoughts and cyberhugs,
Grateful for today...........Judy

Posted By: TriplePositiveGirl
Date Posted: Jun 28 2012 at 1:27am

Snickers,

Reading your post really made me smile. The world is such a better place with you in it, so I firmly believe you will have many more years left on this planet. That bucket list is great. I know you will achieve each item on that list. Can't wait to read about them in the future....

Much Love,

Lisa

Posted By: hydeskate
Date Posted: Jun 29 2012 at 8:41pm

I was dx out of the gate with Stage IV TNBC with mets to both Liver and lungs @ 29 in 2008. My entire left lung was cover is spots, had a few in the right, and several spots all over my liver the biggest the size of a quarter, the rest either dime size or pencil erase size.

I was immediately started on Chemo first it was suppose to be taxol and AC but I was severely allergic to Taxol so I was switched to Abraxane, then A/C, Scans came back NED, I was scheudled for a BMX, the next scan was still NED, had radiation and abraxane again for the hell of it. My last chemo was Oct 2009 I have been NED every since, I get either an x-ray or CT scan every 3 months.

I am also BRAC 1 positive.

-------------
IDC, 1cm, Stage IV, Grade 3, 2/20 nodes, mets, ER-/PR-, HER-
Mets Liver & Lungs
Sjogren's Syndrome
http://heidiy13.blogspot.com/
http://heidyplayscalediorama.blogspot.com/

Posted By: snickers
Date Posted: Jun 29 2012 at 8:58pm

wow what an inspirational story. My mets to my lungs are in the mm's very small, but my met to liver are very large (8.5 cm = approx. 4"). But I have had 2 other onc opinions and they both say same thing: if we can shrink or stop tumor growth all will be good since they caught lung mets very, very early. With my tumor size on liver I am not really feeling any pain, just very small amt of discomfort, but very liveable. Just today I had my second week of gemzar/carbo and will know by end of July if my tumor has stopped growing or shrunk.
thank you for your story!!
Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: 123Donna
Date Posted: Jun 29 2012 at 9:28pm

Snickers,

If they can get the tumor in the liver to shrink, ask if surgery would be a possibility? My friend has peritonneal cancer that spread to her liver. She had 2 tumors, but were in areas where they could remove them. They did chemo first to shrink them and then did surgery. I think that was about over a year ago.

Donna

Posted By: hydeskate
Date Posted: Jun 29 2012 at 9:37pm

I would also ask about using cyberknife on the liver. That is what my original plan called if you can call it that, really they where making it up as they went along.

-------------
IDC, 1cm, Stage IV, Grade 3, 2/20 nodes, mets, ER-/PR-, HER-
Mets Liver & Lungs
Sjogren's Syndrome
http://heidiy13.blogspot.com/
http://heidyplayscalediorama.blogspot.com/

Posted By: miffyjones
Date Posted: Jun 29 2012 at 10:01pm

I've been liaising with a lady on TNBCF Forums who had mets to lungs and to give her a break from chemo she did the cyberknife - she has been NED for 13 months. My next CT scan is next week. If I still have any tumors left, and am stable, we are looking at doing the cyber knife option as well. Here is a link to the cyber knife website, and also the forum page where I was talking to the lady about the cyber knife. http://forum.tnbcfoundation.org/topic9691_post101890.html#101890 - http://forum.tnbcfoundation.org/topic9691_post101890.html#101890

http://www.cyberknife.com/ - http://www.cyberknife.com/

I'm off for a wee walk with my eccentric Bichon - it's a lovely winters day here in NZ - perfect for a stroll amongst the sheep - my Bichon thinks he is one!. Xxoo

-------------
11/10 TN Multi Focal Tumor RBreast DCIS left. 2/7 Nodes. BRCA2+ 3 x FEC 9 x Taxol 5wks rads. Nov '11 Multiple Mets lungs, liver, sternum, mamary nodes. Cis/Avastin/Gem 3 wk cycle. Jun12 stable disease

Posted By: denise07
Date Posted: Jun 30 2012 at 1:03am

Snickers,

Hang in there I know easier said then done, you may achieve ned with all of the prayers it is not impossible, I truely believe in the power of prayer and no doctor can give us an expiration date, that is in god's hands, I believe he guids our doctor's and I find it truely amazing with you dedicated time for dog guidence. I love dogs so much and always believed they are man's best friend. I will be here to hold your hand through all of this it has to get better.

Hugs,

Denise

-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes

Posted By: jjane
Date Posted: Jul 01 2012 at 2:48pm

I was diagnosed with stage 4 from the outset with liver tumours, largest 7 cm. I had eribubicin and cyclophosphamide dose dense for 6 cycles with neutropenia as just given birth. The chemo shrank the liver tumours and largest only 1 cm so had liver ablation. My breast tumour was 9 cm and did not shrin as well but had mastectomy. Recurrence was in scar 3 months later and cervical spine. Had 18 paclitaxol but then showed signs returning in liver and lungs. Had carboplatin which was good for first 3 cycles but stopped working last 3 cycles. Spread to axilla nodes and clavicle. Started on Capecitwbine but didn't work after 2-3 cycles and back pain very bad. CT scan revealed lower level sacrum disease, worsening in live and lungs. Started vinorelbine 6 weeks ago. Was 2 years since diagnosis 23 June and hoped I'd have some remission times but haven't really but have just kept going with 4 kids; 2,3,12,15. I live in uk and was tested for androgen receptor at royal marsden but didn't have it.

Just keep going as I'm on my 5 th chemo and still fighting.

Love Jane

-------------
Diag TNBC stage IV 9 cm, 7 cm liver 10/06 5 days post partum. EC x 6, RFA liver, recurrence nodes, liver, lung 11/04. paclitaxol weekly x 18, recurrence 11/10 - carboplatin/gemcitabine x 6

Posted By: ameg
Date Posted: Jul 01 2012 at 5:13pm

Hi,

Mine also metastasized to the lung, liver, lymph nodes, chest wall, kidney, pelvic and maybe bone. They all small except 2 large ones on the liver. Until now I was on single drug and things were getting worse as you can see. Now I'm on Xeloda+Ixempra. So far I had 2 cycles.

Its scarey to know that I have so many tumors in my body. Every time I'm in pain I feel down and have anxiety for not knowing what all these mean. I know all I can do is keep praying and hope this time it will work.

I have no choice but go on and keep fighting this terror and not give up. Its not easy at all but we have to. I cry and laugh and sometimes I do both at the same time. Cry

Posted By: Grateful for today
Date Posted: Jul 10 2012 at 12:52am

Hi Snickers,

Sending caring and good thoughts to you.
Lots of good thoughts for your plan with carbo/gem and scan at the end of July.......
as well as a 2nd opinion.
Hope all's well with the dog training program.

With cyberhugs,
Grateful for today............Judy

==================================================

hydeskate, miffyjones, jjane and ameg,

With caring thoughts and cyberhugs to each of you.

Grateful for today............Judy

Posted By: snickers
Date Posted: Jul 10 2012 at 10:40am

Judy
Thank you for thinking about me! I had my check up yesterday with my onc and will start my 2nd cycle this Friday. I had a blood draw yesterday that will tell me my liver count. Will know the results this Friday when I have chemo. I still cannot believe I have stage IV as I am feeling 90% "normal." It is funny, the only real ache/pain I have is in my right hip that is "suspicious" looking on my bone scan. My onc gave me a daily pain killer for that, so I can continue hiking, etc. I asked him about radiation to that area and he said to wait to see if my chemo is working first. He wants to tackle the big problem first, my liver tumors. I asked him yesterday if we can't find the right cocktail how much time do I have left and he said about 4-5 months. It shocks me that today I feel fine and I could decline that quickly. I told onc that I would be happy to have 2 years more as I want to see one of my adopted daughters (my husband I have mentored many high school kids who call us mom and dad) graduate from college next year and witness my guide dog puppy I am training graduate with a blind person in one year. Many times I feel like I will not make it past 4-5 months as my mom died within 5 months of getting lung cancer and my half-sister died of breast cancer (she lasted 3 years). I have had this premonition for many, many years that I was going to die young and here I am.
I asked my onc yesterday would taking cisplatin and gemzar be a better treatment than carboplatin and gemzar and he said "yes, by a little bit" but cisplatin is extremely hard on your body. Any thoughts on that? I mentioned the cyberknife technology and he shot that idea down, stating that with numerous mets in lung/liver it would not be logical. He thinks chemo is the best treatment for multiple tumors as it is systematic vs radiation just zapping individual tumors. Is he correct on this? He said you can zap them, but more will pop up so just stick with chemo which has a better chance of getting them all.
I mentioned to onc about diet change for my liver and he said, "no, there is no evidence that diet change will improve your chance of survival, just enjoy yourself and eat in moderation." "Eat what agrees with you, and if you wish, have a glass of wine each night." Sometimes I wish he would say, "do this, this and this" and you have a better chance of living longer, but he keeps telling me that finding the right cocktail is my only hope of living longer. sigh Confused

I have started going to church and becoming closer to God and am starting to accept I will not be around in 5 years and there are days I can accept this and some I want to cry and scream, "why me!" Then I stop and tell myself, "I am here now, I am alive today. Everyone from the day they are born are terminal. I just happen to know that my expiration date is sooner than later." I have had one close friend who passed away two months ago from a horseback accident, leaving young children behind, and I tell myself, "I am still alive, so stop feeling sorry for yourself."
I want to thank EVERYONE that keeps in touch with me a big, huge, humungous hug and say, "thank you for thinking about me." I look forward to receiving positive feedback from everyone.

lots of cyber love and hugs
Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: snickers
Date Posted: Jul 10 2012 at 10:58am

To add onto my comments, I was diagnosed as stage 2A based on tumor size and 0 lymph node involvement, but in talking with my onc and another onc, both stated, "the horse got out of the barn in the beginning." My concern from the first time I read my pathology report was I had lymphatic vascular invasion (LVI) and my onc shrugged it off stating most, but not always, cancer will exit via the lymph nodes. Well, in my case, the not always was the escape route. Oncology has not yet determined the importance of LVI in staging women. Well, my feeling from day one, was it is very important. Having LVI means that cancer cells were found in blood vessels that leave the breast area and get pumped through your system. Yes, chemo can take care of those little rascals running around in the blood IF chemo catches them before they metastasize in your organs/bones. In my case, I had my bi-lateral first of November and chemo started December 1st. I had a bone/ct scan end of November and every thing showed fine. My onc said I probably had mets already prior to scans but they were too tiny to show up. I asked him if we would have scanned me half way through my six months of chemo would that have helped my stage IV survivability and he said, "yes, in my case if would have, but you are the exception to the normal. Your case was highly unusual."
I wish I would have thought to ask for a ct scan half way through my chemo due to my LVI. I think many oncs place us TNBC patients in the same basket of treatment as the ER/PR+ women and have not changed their "standard care of treatment" for us TNBC patients.
Just my thoughts....

Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: turtle
Date Posted: Jul 10 2012 at 11:05am

Snickers,

I have no chemo advise for you, but wanted to send you well wishes from the other coast and tell you to continue to "seize the day"! Maintain your routine, that may bring comfort and help you to feel normal, and keep the demons of "why me" and "how long do I have" away.

As always, we hold you in our hearts, hugs, C

PS. I saw your additional post about your LVI...As I too have that on my path report, and even before that, saw the large blood vessel beating to the rhythm of my heart on the ultrasound they did of the tumor BEFORE any biopsy, I know that there are circulating tumor cells that are running around my body. The question no one knows is whether chemo got them.

Posted By: TriplePositiveGirl
Date Posted: Jul 10 2012 at 12:43pm

Hey Snickers,

Good to hear from you! Your posts offer a lot of information about LVI. I think you are right about the CT and the treatment TNBC patients get. I hope that this thinking changes for those who will face this awful disease in the future (or have recurrences), and more targeted, specific treatment plans are created for the individual patient. When I think back to my treatment and how long it lasted (10 months) - anything could have happened. I insisted on getting an ultra sound after 2 cycles of chemo to see if the breast tumor was actually shrinking from the neo-adj chemo. My doctor didn't think it was necessary - but what if the tumor had grown rather than shrank?? I dread to think about it.

It is a game of russian roulette - you never really know if the chemo worked or not until substantial time has passed. The waiting game stinks. My wish is for a post treatment "treatment" that ensures that this damn disease cannot return.

Posted By: debB
Date Posted: Jul 10 2012 at 2:30pm

Hi Snickers,

I am so sorry that you are going through all of this. I have followed the thread but somehow was so shocked I just couldn't respond. My heart goes out to you. It is amazing to me how unreal the whole cancer thing seems, even as we are in the midst of it.

I think that you are totally right that many of the docs lump TNBC together with all other BC and it certainly is not. We know darn well that LVI for us is bad, bad news. I opted to do neoadjuvant chemo, so have nothing in writing that says LVI but I think back to seeing my first MRI and it looked like a giant spider with legs branching off all over and them talking about how tumors establish their own blood supply and that was what I was seeing. I am glad I didn't know then what I know now! Not that it changes a thing.

I am not sure why your oncologist thinks that Cisplatin is harder on your body. Maybe it is harder than other drugs, who knows?! I just finished four rounds in a clinical trial. I know it is hard on your blood and kidneys. My kidneys were fine throughout but I had a delay due to low white counts but was not allowed to do any blood support (ie Neulasta) due to the trial. I didn't even lose my hair. I hope that they come up with a cocktail that starts working it's magic. If they can find a good combo, I think no one can guess how long you may have.

In the meantime, I think you are absolutely right in forging ahead and living each day as if all were fine and dandy! Do the things you want, enjoy them the best you can, take care of yourself, and keep looking to the future! Sending lots of caring and support your way!

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial

Posted By: Grateful for today
Date Posted: Jul 20 2012 at 1:49am

Hi Snickers,

Just wanted to send some caring and supportive thoughts and wishes to you.

Also, wanted to share a few thoughts on what you had posted on July 10...........
(If thoughts not helpful, please just disregard.)
........ "I asked him(onc) if we would have scanned me half way through my six months of chemo
would that have helped my stage IV survivability and he said, "yes, in my case if would have,
but you are the exception to the normal. Your case was highly unusual."....................
Another thought: Yes, your onc MAY be correct.   At the same time, if your initial scans were too
           early to show anything, it is possible that scans half way MAY have not shown anything either.
You also posted.......
        "I wish I would have thought to ask for a ct scan half way through my chemo due to my LVI."
Another thought:
        Just remember not one of the 5 experts consulted about radiation recommended a scan prior
to treatment.
( You had posted: "I meet with my Radiation Oncologist, who then sent an email off to 5 well renowned rad oncs back east on their opinion of having radiation after a mastectomy with LVI (lymph vascular invasion), 0 lymph node involvement and this is what they said:
1 said no radiation
3 said yes on radiation chest wall only
1 said yes on radiation chest wall and lymph node area "
Snickers, what I am trying to say.........be gentle with yourself for not have asked for a scan half
way thru chemo........remember one of the expert did not even recommend any radiation be given
in your situation.

Snickers, now pat yourself on the back and be assured in your confidence and knowledge of your
body. You were the one who asked your physician for the scan due to the small pain in your
sternum. You were post bilateral mastectomy and chemo but you sensed and were aware that
what you were feeling in your sternum needed follow-up.    In one respect, the scan was done
because of you and your self knowledge.

One last thought.... maybe have 2 years to see the student you have been mentoring graduate
from college and have the guide puppy dog trained for the blind(as you said) be your short term
goal .........with your long term goals to see as many of your students graduate from college as
possible and train some additional puppies!

With lots of caring and good thoughts and cyberhugs,
Grateful for today...............Judy

Posted By: snickers
Date Posted: Jul 20 2012 at 9:56am

Judy
Thank you so much for you thoughts. I am crying as I write this. I was touched by your thoughtfulness and compassion. Sometimes I feel like I am on an island all by myself and no one knows how I feel. I know TNBC is aggressive and I feel like I have even MORE aggressive cancer than all the TNBC women because I did not respond to chemo. That is what is getting me down. I feel I am quad triple negative! Yesterday I got my port re-installed and my surgeon (who is very nice, but straightforward) said I have the deck stacked against me with my mets. He then said, but new medicines are coming out all the time. I feel I don't have much time because my tumor size in my liver. I am also scared mets will go to the brain as this is also common for TNBC.
On the positive side, I do not feel like I have cancer at all! My pain has gone away in my sternum, my one bone met in my right hip is not hurting and I can take deep breaths without my lungs hurting. I hope and pray my chemo is working.
I went on the "nosurrenderbreastcancer" website and there is an article regarding PARP inhibitor BSI-201 that:
Finally, on the regulatory front it also appears there is accelerated progress: the PARP inhibitor BSI-201 has been granted on Fast Track Designation by the FDA, very good news for patients: FDA Fast Track means that, against standard requirements, the agency will accept initial late-stage data instead of waiting for entire Phase III clinical trial results, something that is done when (1) a proposed agent is intended for treatment of a serious or life-threatening disease - a status now accepted by the FDA for mTNBC (metastatic TNBC) - and (2) demonstrates the potential to address unmet needs for such a condition. Based on this status and on a review of documents filed in the FDA regulatory pipeline process, it is now estimated that BSI-201 may actually become commercially available - and hence available to all mTNBC patients in clinical practice without being on any clinical trial - at year's end (mid November to mid December, best estimate).
CONSTANTINE KANIKLIDIS
DIRECTOR, MEDICAL RESEARCH
Constantine has some fantastic articles on new drugs, inspirational stories of women living met mets to live, lungs and bones that have gone on to live for many, many years. Please check out the no surrender website then click on "the cutting edge" tab at the top.

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: 123Donna
Date Posted: Jul 20 2012 at 10:05am

Snickers,

I just want to let you know that I'm here for you. You did everything right and it still came back. This stupid cancer is so unpredictable sometimes and it's just trying to find the right cocktail that will stop it. I hope the Carbo/Gemzar will do the trick as the platinum drugs seem to work well on TNs. I was able to be in the BSI-201 trial (Expanded Access) with my recurrence in 2010.

Donna

Posted By: Charlene
Date Posted: Jul 20 2012 at 10:27am

Snickers,

I have been praying for you every day. I hope that the right chemo regimen will be found and that it will put you into remission long enough for you to complete your entire bucket list and way beyond that, too! You are so right about living and appreciating every day and you are blessed to be feeling good. This morning I am thinking about the victims of the Colorado movie theatre massacre and remembering how very fragile life is for all of us. Wishing you the very best.

Charlene

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED

Posted By: turtle
Date Posted: Jul 20 2012 at 11:01am

Hi Snickers,

I'm so glad Judy posted to you (she is so good about reaching out and remembering everyone's circumstances and important dates), and was relieved and glad to see your response. Yes, this is an agressive cancer we have, but on the other hand, other cancers, such as lung often get months to live from the start. And what of the many people every day who tragically die in car accidents, never having a chance to say goodbye to their loved ones or to organize their affairs? I guess what I'm saying, which is how I comfort myself, is that none of us ever really knows when our time will come, and the best we can do is enjoy the time we do have and make each moment with our loved ones (including our furry friends) special. You know all this of course, but I just wanted to remind you that you do have a group of sisters who love and support you, know the emotional turmoil you are experiencing, and will continue to encourage you to seize each day, and see the bright side of life!

As always,

we hold you in our hearts Hug

Posted By: miffyjones
Date Posted: Jul 20 2012 at 8:13pm

Hey Snickers - I've been trying to write this response for half an hour now, wishing I could say something that would .... just .... make it go away .... make you smile and forget about everything if even for just one day ... I wish I could beam myself over to WA and go for walks with our dogs - we could share stories and we could go swimming in that big lake and I'd use my Irish wit to make sure you giggled with me everyday. So I'm just sending all my love and best wishes through the ether.

On reading your article, I can't get over how it reads basically dito to how I was initially diagnosed and how it came back and how I had asked / thought the exact same things as you. What am I trying to say here? The things that we questioned / thought are natural questions and thoughts for people in our situation - we are human!!! And you know what, the odds may be stacked against you, but they said the same thing to me way back in October 2011 - they gave me a few months - and I am still here, out walking the dog, I'm off to high tea with my girlfriends today, and life is still going on - people can and do beat the odds as COnstantine points out. I love what one of the ladies on this site said to me recently ... that she does'nt see it as a terminal illness anymore, just a chronic one. The fact that the pain is going could very well be due to the fact that the treatment is working. I had what sounds like very very very similar symptoms to you. My sternum hurt, I could'nt take deep breaths, and my hip hurt. After just one round, these symptoms all disappeared and a scan after round 2 showed that the tumors were all shrinking, so I am assuming that the same is maybe happening for you too. As far as brain mets go as well, know that the gemzar/platinum drugs can cross the blood brain barrier which is great defence againt this happening - I will forward to you an email re research on these two drugs and how they have been shown to positively impact brain mets of TNBC.

I have to go now, but just know that we are all willing you on - the world needs guide dogs and wonderful people like you in it to make it a special place.

Lots of love, M

Posted By: mindy555
Date Posted: Jul 20 2012 at 8:17pm

I echo Turtle about Judy's caring, compassionate post. Frankly I just found this thread after reading Lee's post. I had no idea it was here- now kicking myself for missing it!

Dawn,
I'm afraid I'm in shock so I hope what I write will be okay. The last I heard you'd made the decision to start rads. I knew from all the research you'd done and opinions sought, along with your strong personality clearly seen through your writing, you're one tough, tenacious, intelligent woman whom I believe will conquer this... no matter how the cards appear stacked right now. You're a person, not a number. On your new chemo regimen there's all kinds of hope for way more than a few good years. Don't kick yourself for not having a scan sooner.. you were in the throes of other things.. like making a decisions about rads. You didn't have horrible symptoms to send you running to the doctor. How would you know!!?!

I'm grateful to hear you're not experiencing pain and pray that continues. You have a whole lot of living to do.. and as Turtle says, on the bright side of life. Yes.. we hold you in our hearts and prayers.. always.

In fact, I'll be saying a prayer and lighting a white candle of hope & faith just as soon as I finish writing.

I have a strong belief in the healing powers of the human spirit. None of us know what tomorrow will bring which is all the more reason to live in the NOW.

Love,
Mindy

-------------
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012

Posted By: mindy555
Date Posted: Jul 28 2012 at 3:59pm

Snickers,

Have been keeping you in thought and prayer. I'm sure you're busy with treatment. Knowing you you've researched the right chemo cocktail to kick this beast. Hang in Dawn.. you know, you're never alone in this.

miffyjones- What a special person you are. Your post to Snickers brought tears to my eyes. I've thought of you a lot, hoping and praying you remain stable for many years to come. You're a true inspiration girl.

Love,
Mindy

-------------
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012

Posted By: Grateful for today
Date Posted: Jul 30 2012 at 12:57am

Snickers,

Continued love, hope and prayers to you.

With caring and supportive thoughts and cyber hugs,
Grateful for today...........Judy

Posted By: MsBliss
Date Posted: Jul 31 2012 at 8:56pm

Snickers.
Since you have already referred to Constantine, have you perused the Edge CAM by Constantine at nosurrender as well? The recommendations are vetted to a high standard. My own onc supports my use of the protocol. Of course, some oncs are against any sort of supplementation, but that is something that has to be figured out on an individual basis. I obviously believe that optimizing vitamin D levels, a good start, can help all breast cancer patients. I have read validated studies that confirm the use of some of the recommendations, particularly vitamin D3, curcumin, and boswellia, as being helpful in contributing to chemo and radiation efficiency.

In any case, it is an interesting read and you may find something that clicks enough for you to follow up with.

My most sincere wishes for your continued well being dear Snickers.....

-------------
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions

Posted By: miffyjones
Date Posted: Aug 01 2012 at 12:36am

Snickers - hope things are continuing to go good through treatment. As you know I've been in hospital with a bleed from that darn last tumor left in the liver - all on the mend and should be out in a day or so, so I'll try and catch up with you over the weekend. Hoping you are well and enjoying your reading. Lots of Love Miffy

Posted By: miffyjones
Date Posted: Aug 01 2012 at 12:59am

PS. I shared some info privately with Snickers recently and she recommended that I share it on the site here. Before I do, I just want to iterate that all of my supplementation has been prescribed for me by a practicing naturopath. I tried reading heaps of books and articles and while it was great with educating me, I was at a loss as to which of the 100s of supplements would actually be of benefit for me. So I started seeing a naturopath 2 weeks after I finished chemo. My tumors continued to shrink after chemo finished. My onc said that it was the chemo still working? I'm personally not sure. We stopped my chemo after 6 rounds as I was getting terrible gastritis and my bloods would not come back up, but within 4 weeks of supplementing with what my naturopath prescribed all of my bloods were absolutely perfect and my tumor markers kept falling as well. Was it just my body fighting back anyway? I really do not know, but I just wanted to share with you what it was that I took:

a) Glutathione - helps the liver recover. One of the lovely ladies from this site shared this link with me about how it works. I had problems with GGT and ALT levels - my entire liver measures are perfect now. http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html - http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html

b) Salvestrols - this is a completely natural occuring product from fruit and veg and was discovered by 2 of the UKs leading scientists. I take 3 a day. http://www.salvestrol.co.nz/index.php/shop2 - http://www.salvestrol.co.nz/index.php/shop2

The book on the front page is a good read and explains how salvestrols works. This is my naturopath's biggest passion - she believes it is revolutionary.

c) Thymo-Nucleo - I can't find any links for this one but do know that it is a naturopath's own formula and it basically helps your body generate big plump red and white blood cells again. My bloods have been great. Here is a link to thymonucleo but its not the specific product that I am on.

d) A great pro biotic - again naturopaths own - immunity starts in the bowel apparently.

e) Lypospheric Vit c and Lipoic Acid - the latter helps absorption of Vit C

f) And a Naturopath's Multi Vitamin.

g) IFE Treatment which I don't think is practiced in the USA but is in Canada.

I really can't express enough that this regimen was prescribed for me by a professional naturopath with 30+ years experience. I DO NOT recommend it or prescribe it for anyone at all. I was asked to shre it and I have and it may or may not be of some use to people and it is in no way intended to give feelings of false hope or injur anyone. I do believe that my quick return to good health following chemo has in some way been contributable in some way to the supplementation, but if this is a path that you are interested in I would urge you to speak with an experienced professional.

That's it. Any questions, please feel free to ask. Lots of lOve Miffy

Posted By: snickers
Date Posted: Aug 01 2012 at 3:32pm

To everyone that has sent me positive thoughts and prayers, I received my ct scan results back today and my oncologist is speechless! He was totally shocked when he received the results. My liver tumor has shrunk 80% and my lungs are NED!!!! He is excited about showing me the ct pictures this Friday when I go in for chemo. When I asked him if I could take that cruise I was planning this December and he said 100% go for it!!!
Today is my husband and my anniversary and what a fantastic present we both received.
Thank you, thank you for all of you that sent me prayers and HOPE!!!

lots of love and hugs
Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: TriplePositiveGirl
Date Posted: Aug 01 2012 at 3:38pm

Snickers,

I am sooooo very happy for you! This is such wonderful news and it appears that gemzar/carbo is the right treatment for you. What a fantastic anniversary present is right!!! I hope you are on your way to a complete NED for all tumors....congratulations!

Lisa

Posted By: turtle
Date Posted: Aug 01 2012 at 3:42pm

YIPPEEEEEEEEEEEEEEE!!

I was really feeling down in the dumps today, but this news totally hit it out of the park for me...I am so glad to hear this Hug

Congratulations and Happy Anniversary! Beer

Posted By: Grateful for today
Date Posted: Aug 01 2012 at 3:58pm

Snickers,

Wow! Awesome! So hopeful! So Wonderful!
How does the saying go..........more things are wrought of by prayer than this world can dream of.
How does the thinking go......one just needs the right chemo that one's tumor is responsive to.

Thinking of the quote that I have posted before on other forums:
Statement by Jerome Groopman, MD in his book: "Anatomy of Hope".
" Each disease is uncertain in its outcome and within that uncertainly we find real hope, because a
tumor has not always read the textbook, and a treatment can have an unexpectedly dramatic
impact. This is the great paradox of true hope. Because nothing is absolutely determined, there
is not only reason to fear but also reason to hope."
He also says: "Hope is a belief and expectation."

Happy Anniversary to you and your husband.

With continued hope and prayers
and with love and cyberhugs,
Grateful for today.............Judy

Posted By: miffyjones
Date Posted: Aug 01 2012 at 4:19pm

Snnnnnniiiiccccckkkkkerrrrrs ..... I'm dancing in my hospital ward ......... I just knew it in my bones you would get response like this ....... awesome awesome awesome ......... I can't stop smiling. So maybe that NZ trip will make your list of things to do then after all. I am so glad. So happy. Can hardly contain myself at this awesome, awesome news. Oh my tea is getting cold and I don't care. Lets keep praying that it goes all the way. Halleleujah!!!

And Judy thank you so much for sharing that wonderful awe inspiring quote. I am going to pin it to my forehead and wear it to all my oncology meetings from here on in, and to all environments medical. Love this too.

Well done Snickers. LOts of Love and continued prayers for you all the way. All my love.

MIffy xxoo

Posted By: Charlene
Date Posted: Aug 01 2012 at 4:39pm

Prayers answered!! So very happy for you!! Happy Anniversary and many more!

Charlene

-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED

Posted By: Lee21
Date Posted: Aug 01 2012 at 4:51pm

Snickers, I am so glad to hear that the carboplatin/gemzar combo is working well for you. It's truly awesome and inspiring. A wonderful gift on your Anniversary.
Lee

-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm

Posted By: bottkota
Date Posted: Aug 01 2012 at 7:29pm

Great news!!! Hopefully you will meet NED completely soon!!!! Gem/carbo is a winning combo for us triple negs!!!! So very happy for you!!!

-------------
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)

Posted By: SagePatientAdvocates
Date Posted: Aug 01 2012 at 9:09pm

Dear Snickers,

You wrote-

Finally, on the regulatory front it also appears there is accelerated progress: the PARP inhibitor BSI-201 has been granted on Fast Track Designation by the FDA, very good news for patients: FDA Fast Track means that, against standard requirements, the agency will accept initial late-stage data instead of waiting for entire Phase III clinical trial results, something that is done when (1) a proposed agent is intended for treatment of a serious or life-threatening disease - a status now accepted by the FDA for mTNBC (metastatic TNBC) - and (2) demonstrates the potential to address unmet needs for such a condition. Based on this status and on a review of documents filed in the FDA regulatory pipeline process, it is now estimated that BSI-201 may actually become commercially available - and hence available to all mTNBC patients in clinical practice without being on any clinical trial - at year's end (mid November to mid December, best estimate).

The article posted on the "no surrender" site is old news and obsolete.

The BSI 201 drug was given accelerated status several years ago and in a large Phase III trial the drug, very disappointingly did not meet its endpoints. It is not going to be available this Nov, or Dec. I spoke to Constantine about this article remaining on the 'inspire' board and suggested he remove it but I guess it is still there. Hopefully, it will be removed at some point as it is misleading.

http://www.reuters.com/article/2011/01/27/sanofi-breast-idUSN2728104120110127

Snickers if you need more info please send me a PM and I will be happy to send you links.

Also, sanofi announced that the BSI drug is not a parp inhibitor, rather a cancer agent.

Dear Miffy,

I am DELIGHTED that you have had such a wonderful response.

I think it is extremely important that everyone here check with their oncologists to make sure that any alternative therapies/substances do not cause complications with chemo. Some of them do.

As far as I know there are many folks who make claims about different treatments other than chemo but there is very little proof from peer reviewed studies or FDA approval for many of the treatments mentioned. Each year, for example, there are many folks who also claim they were 'cured' by some clinic in Tijuana or another part of the world. Hard evidence remains elusive from what I have been told by several oncologists, that various treatments/natural substances work and actually cures cancer.

Please don't rely on anything I say; rather speak to your oncologist.

warmly,

Steve

-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

Posted By: denise07
Date Posted: Aug 01 2012 at 9:27pm

Snickers,

I am so thrilled for you,been prying this combo is the magic bullet for you. I am so excited I could cry this is such awesome news. I wish nothing but the best for you. Happy Anniversary!!!!

Hugs,
Denise

-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes

Posted By: MsBliss
Date Posted: Aug 01 2012 at 10:24pm

Dear Snickers,
Such fantastic news.....you gave us such a scare and now, well, you've given us something to smile and feel so wonderful about.
All my best,
Bliss

-------------
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions

Posted By: miffyjones
Date Posted: Aug 01 2012 at 11:11pm

steve - thanks for emphasizing so clearly what i was trying to say - always always always check any alternative therapies and supplements with your specialists first. This is what my team n i discussed and what we did - we don;t know what it achieved if anything, so thanks steve for emphasizing the importance of speaking with your medical team on absolutely everything before you do anything medical / alternative on anything. You can arm yourself with all the information possible but it takes experts with experience to help you understand it and apply it.

Best wishes to all

Miffy

Posted By: MsBliss
Date Posted: Aug 02 2012 at 5:26am

Miffy,
I want to thank you for posting your info and protocol outline. I am a firm believer in informed integrative management after a cancer dx. I hope to learn more about the treatments you highlighted.

I had no choice, given that chemo and rads were not an option in my case. I felt I had to do something, and it has been an eye opening experience. I went with alternative protocols after seeking much advice from learned integrative doctors and doing a lot of research on my own.

Like you said, we need guidance, because it is very complicated and goodness knows, we don't want to make matters worse. But I often feel very upset that more oncologists don't recommend just the basic vitamin D3 test and supplementation. It is a proven hedge, at least statistically. At the very least, adequate levels of D3 help chemo work more efficiently; supplemental curcumin makes radiation treatment more effective. This is published in peer review journals, yet it is not a part of common practice. At least, not yet.

There is much to learn, and I truly feel it is not a time to be complacent.

-------------
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions

Posted By: debB
Date Posted: Aug 02 2012 at 9:12am

Congratulations and Happy Anniversary Snickers! Such wonderful, fantastic news!!

Deb

-------------
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial

Posted By: majjers
Date Posted: Aug 02 2012 at 1:55pm

Happy belated Anniversary and soooo happy to hear your great news!

-------------
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!

Posted By: Kazzie61
Date Posted: Aug 08 2012 at 9:05am

Snickers, that is truly wonderful news.....& gives us all hope - lord knows we need it!

Congratulations on our anniversary....what a way to celebrate:)

Karen x

-------------
DX TNBC 5/10/10 DCIS & IDC, multifocal
Lumpectomy, TC Chemo x 6, BMX
with immediate DIEP Recon
Dx bone mets may 2012
Radiation June 2012
4 weekly Xgeva
Chemo Paclitaxel/ Gemzar December 2012

Posted By: nancykind
Date Posted: Aug 10 2012 at 4:37am

congrats indeed, wonderful news!! also belated anniversary wishes from me, too.

did you have side effects from the chemo that didn't work? that is so frightening, i'm glad you are on your way now. <3

-------------
Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!

Posted By: snickers
Date Posted: Aug 10 2012 at 6:57pm

No, I had hardly any side effects on the AC+T except small amount of nausea, but I took some pills to assist. Some minor fatigue but that was it. I pretty much coasted through the 6 months of chemo. I recently asked my onc. about why wasn't I tested for tumor markers CA15.3 during my chemo and he showed me that I was being tested during the entire time, always showed up normal. Apparently my cancer does not emit the protein signals that would pick up any cancer detection...sigh Confused

so all this time I was considered "okay." My onc. is switching to tumor marker test CA 27.29 to see if that would be a diagnostic tool to assist so I do not have to have as many ct scans.
I am on my third cycle of carbo/gemzar and am feeling more fatigue than when I was on AC+T, but that is to be expected since I really have not had a large amount of time between chemo switches. Having to take that nasty Neulasta shots again...ugh! I have found that taking Claritin the morning of the shot helps tremendously in reducing achy bone/muscle fatigue. My fantastic husband gives me the shot as if I had to do it, I would pass out!
We are departing for Yellowstone National Park for 10 days and am looking forward to "just getting away" and forgetting (at least for a small portion as cancer NEVER leaves your mind for even a day....at least not for me)about my treatments. I do have to say, that when I was first diagnosed with stage IV I was devastated and was very depressed. Once my onc. gave me a plan of attack, I went into attack mode myself. My outlook is much, much better and I am actually happy! Yes, I still feel sad now and then, but for the most part I have compartmentalized my cancer into this dark cave and I try not to enter the cave very often. I am a HUGE realist and I know that cancer will eventually win, but it will NOT beat me today and that makes me the victor!!!
thank you so very much all you wonderful ladies for your love, support and wise words of encouragement. I will be out of touch for about two weeks as no cell phone/internet where we are going in Yellowstone. It will just be my wonderful husband, Smitty my retired Guide Dog for the Blind, Norm my career change Guide Dog, Taurus the current puppy I am training for Guide Dogs and my little baby princess, Snickers the beagle and I who will be getting up at 4am every morning to wolf watch. Life is beautiful!!!!!
Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: miffyjones
Date Posted: Aug 10 2012 at 7:23pm

Have a fab holiday SNickers - my little brother lives there - it is an amazing place. And to have all your dogs with you - how fun. Glad to hear all is moving forward well for you and love your strong spirit. You are a victor! Just to let you know my CA153 was exactly like yours - always read normal. So thanks for your advice about sharing your knowledge about the other tumor test - I never knew about that so I'll talk to my onc next week about including that in my protocall. ANyhowz, have a great hols, enjoy the sun, and don't try cuddling any Bison in the park - they are too big to get your arms around. Lots of Love from NZ.

-------------
11/10 TN Multi Focal Tumor RBreast DCIS left. 2/7 Nodes. BRCA2+ 3 x FEC 9 x Taxol 5wks rads. Nov '11 Multiple Mets lungs, liver, sternum, mamary nodes. Cis/Avastin/Gem 3 wk cycle. Jun12 stable disease

Posted By: Grateful for today
Date Posted: Aug 10 2012 at 11:46pm

Snickers,

You said: Life is beautiful.
And you are beautiful. You are truly a woman whose inner beauty radiates out.
Appreciated your update.

Sounds like a wonderful vacation.......your husband, your dogs, Yellowstone National Park.
................But not sure how great a 4 am wolf watch is!

May being so close to nature potentiate your treatment plan.
May you fill up your reserves with limitless peace and hope for you to draw from for a long, long time.

With continued love, hugs, hope and prayers,
Grateful for today...............Judy

Posted By: denise07
Date Posted: Aug 11 2012 at 2:33am

Snicker,s

Ihope you have a wonderful vacation you deserve it, even though you are getting up at 4am evryday withyour puppy god bless. I am a huge dog lover and probably would do the same also. I know it is hard not to think about cancer every day, but the one thing I instilled in my mind when I first would wake up is I have today and it has been the same each day since diagnosis, I have today! I hope you have a wonderful vacation and get alot of rest. Enjoy your dogs!! I know I do each and everyday.

Love ya,

Denise

-------------
DX Idc 10/07,st2,gr3,2/6 lymphnodes

Posted By: MsBliss
Date Posted: Aug 11 2012 at 2:26pm

Snickers....have a fabulous glorious holiday! Best to you, DH and the dogs. I've sent you a PM...I understand you won't read it until much later.

Bliss

-------------
Dx 3/09 stg1 BRCA neg, 1.4cm IDC + 7mm DCIS, ki67 70 -90%, lump w/re-ex for margin, no chemo/no rads due to delays from secondary health issues; SonoCine every 6 months plus CAM interventions

Posted By: trip2
Date Posted: Aug 19 2012 at 3:58pm

I hope you are having a wonderful time, the trip sounds beautiful!

Posted By: snickers
Date Posted: Aug 27 2012 at 12:58am

Hi Ladies
My husband, my four dogs and I just got back from Yellowstone and we saw many wolves while getting up at 4AM to watch them hunt and play. We had a marvelous time and are now entertaining our friends who drove from Southern Calif. (with their two dogs....LOL) to visit us in Washington state. Anybody who is doing the quick math will add up that we have six dogs in our house!! Thank gosh we live out in the country and dogs have lots of room to roam. Our trip with them, we will head up lake on our boat and visit a remote village called Stehekin. Only way to get up lake is by boat or sea plane. Stehekin has no cell phone reception, TV or computer access.
No, the six dogs are not coming with us! One of my "adopted" college kids who we have been mentoring for years, will be house/dog sitting. She is going to go crazy with that many dogs!
Not much to update on my TNBC, still taking carbo/gemzar and will be having my next ct scan in about 2 weeks. I am definitely feeling more fatigued and my onc. is talking about doing a blood transfusion in the up coming weeks. Has anyone had one before? I am not talking about a platelet, but blood transfusion. Does it give you more pep?
Also, I started my period again, or at least I am lightly spotting. Is this normal? I thought once chemo started (especially since I am 49 and was on AC+T) I would go into menopause. Should I be concerned?
thank you ladies
lots and lots and lots of Snicker love coming your way!!!

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: 123Donna
Date Posted: Aug 27 2012 at 8:56am

Snickers,

Your vacation to Yellowstone sounded wonderful. Enjoy your next outing. Your house sitter will have her hands full with all those dogs!

I definitely felt fatigued on Carbo/Gemzar, but never had a blood transfusion. Regarding the period, mine stopped once I had Cytoxin/Taxotere the first time. It never returned, but I was 49 when diagnosed so maybe being older put me into menopause right away.

Donna

Posted By: kirby
Date Posted: Aug 27 2012 at 10:39am

Snickers,

I had a friend that would have blood trasnfusions. She thought they were wonderful and immediately felt better !

I was 45 when I went thru tx. A year after finishing, I started spotting, then sure enough...period somewhat returned. Much lighter but regular for maybe 10 months, then abruptly stopped, to never return.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads

Posted By: miffyjones
Date Posted: Aug 27 2012 at 5:04pm

Hi snickers - glad you had a fab time on hols - we have been watching a great show on tv here everyweek about Yellowstone - MR Attenborough and looking at old photos. my little brother is at home there now. JUst to let you know i had a bit of a liver bleed a few weeks ago and lost a bit of blood and they gave me 2 units to build me up again - it workeda treat - it raised my levels and my energy

-------------
11/10 TN Multi Focal Tumor RBreast DCIS left. 2/7 Nodes. BRCA2+ 3 x FEC 9 x Taxol 5wks rads. Nov '11 Multiple Mets lungs, liver, sternum, mamary nodes. Cis/Avastin/Gem 3 wk cycle. Jun12 stable disease

Posted By: snickers
Date Posted: Aug 28 2012 at 11:30am

Miffy
OMG I just typed you a PM and try to send it to you and your message box is full! Yikes, it was a really long letter I sent you which I will never remember what I said so I could not even think about re-duplicating it. LOL.....chemo brain?? Can you send me a PM and send me your email address and maybe we could communicate that way?
Lots of hugs and love coming your way my dear sweet friend
Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: snickers
Date Posted: Aug 28 2012 at 11:31am

Kirby
Thank you for the information on blood transfusion. Maybe I will be as strong as Superman when I get it! I just hate the thought of receiving a transfusion as it seems in my mind, a sign of weakness, that my body is already slowing down!! I want to remain a tough, strong country girl that I am!

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: dmwolf
Date Posted: Aug 28 2012 at 6:16pm

Snickers, transfusions are supposed to feel exactly like a little burst of superhuman. Energy in a bottle. Don't see it as a sign of weakness, darlin'.
love,
d

-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.

Posted By: Grateful for today
Date Posted: Aug 29 2012 at 10:30pm

Snickers - the tough, strong country girl ,

So glad you had a great Yellowstone vacation........and will have some time with friends in that remote
village you spoke of. How lucky you have someone to watch the house with all the dogs.

Hmmmmmm, one has neulasta to keep the wbc adequate during chemo like dose-dense AC-T.
One has a blood transfusion as needed for the red cells/platelets with other chemo.
Anemia is a side effect of many chemos.
It seems to me that both neulasta and blood transfusions as needed are part of the treatment plan
to allow the chemo protocol to be given as close to treatment plan as possible.
Where ever that thinking ( that a blood transfusion is a sign of weakness/the body slowing down)
came from, send it away ASAP.

With very caring and positive thoughts and cyberhugs,
Grateful for today..............Judy

Posted By: snickers
Date Posted: Aug 29 2012 at 10:39pm

Judy
Thank you for the sound logic regarding my blood transfusion. Is this too scary of a topic to ask? While on the Metastatic Breast Cancer forum, they pooled all the stage IV members on how long they have lived with mets and are still going strong. Do/did we ever have any data on TNBC sisters with mets and their survivability?

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: Grateful for today
Date Posted: Aug 30 2012 at 12:55am

Snickers-the tough, strong country girl   and all,

It takes a tough and strong country girl to ask the question you did.
These are my thoughts. Others may think differently. You may like to consider discussing
    this with your physicians for their information.
I am sharing thoughts from the perspective of someone post diagnosis/treatment.
    I apologize if I say unintentionally anything that is insensitive to anyone with distant recurrence.

To be honest, am wondering if there is real time current data available.
It is wise to remember statistics and study outcomes are numbers.
We all are unique with our own variables.
Hopefully, others will post and share what they think/know.
I will need to research your question on metastatic TNBC and survivability and see what's out there.

Even before I start to research, I do have a concern about only finding older information.
Pretty sure that I have read (will need to see if I can find the reference) that the current data on
metastatic TNBC survival today is better than what is found in many articles.
For example, while trying to find some info tonight, there was an article published in 2011 BUT it only
   covered up until 2006.
In addition, we now know TNBC includes different sub-types. This sub-type information was not
    always given in the studies.
Some members with met. TNBC have posted on this thread and also on the thread   "NED" :
http://forum.tnbcfoundation.org/ned_topic9691_page3.html - http://forum.tnbcfoundation.org/ned_topic9691_page3.html
The posts and signatures on these threads may give you some information.
One member posted above on this thread: Stage IV at start in 2008 and then NED since 2009.

Realize one must be aware of false hope.   However, like to think one gets one things in order
and then hopes for the very best outcome.
Some of us have seen younger people and people without a history of cancer die since we were first
diagnosed.   No one knows for sure if they have tomorrow. We all have today.

With caring and positive thoughts,
Grateful for today..............Judy

Posted By: hydeskate
Date Posted: Sep 02 2012 at 1:03am

Snicker,
I am also a country girl and I have Stage IV TNBC and was dx in 2008 right out of the gates with METS to my liver and lungs. I have been NED since 2009 to go with what Judy said above each individual has different factors. For me I was dx in 2010 with Sjogren's Syndrome which my doctor's believe is helping to keep me NED but at a price.

I will admit I am getting my ass kicked by fatigue/pain/inflammation from the Auto Immune and the fact the doctors thru everything including the kitchen sink at my cancer, It kills me that I can't do all that I use to, and the fact I have to take 14 pills a day so I able to work in a job I love. But it is worth and If I need a transfusion I would glad take it and chalk it up as another weapon in my ever growing arsenal that can be used in my battle plan and this stupid disease.

-------------
IDC, 1cm, Stage IV, Grade 3, 2/20 nodes, mets, ER-/PR-, HER-
Mets Liver & Lungs
Sjogren's Syndrome
http://heidiy13.blogspot.com/
http://heidyplayscalediorama.blogspot.com/

Posted By: Grateful for today
Date Posted: Sep 03 2012 at 6:41pm

Snickers,

No luck yet on finding any recent articles on current information on survival for met. TNBC.
Found 2 articles but one used data only until 2004 and the other only until 2006. Would like
to see more recent data.

Did find an already existing thread which you may consider posting your questions on:
     http://forum.tnbcfoundation.org/how-long-since-you-were-diagnosed-with-mets_topic8989.html - http://forum.tnbcfoundation.org/how-long-since-you-were-diagnosed-with-mets_topic8989.html

As mentioned above, the thread http://forum.tnbcfoundation.org/ned_topic9691_page3.html - http://forum.tnbcfoundation.org/ned_topic9691_page3.html
      has posts by members with a good amount of time since their Stage IV diagnosis.

With continued caring and positive thoughts,
Grateful for today.............Judy

===========================================================

hydeskate,

Always like to see your posts.
Although I am very sorry you were Stage IV at the start in 2008 , I am inspired by you that you are
here posting.........and still working.   Good to hear that it's a job you love.
Realize I cannot begin to imagine what these years have been like for you.
Thank you for your sharing on the various forum topics.

With caring and positive thoughts,
Grateful for today..........Judy

Posted By: dmwolf
Date Posted: Sep 03 2012 at 7:24pm

Snickers,

Old data has survival listed at 9 months, but from our experience here I think that can't be true currently. We see women living for anywhere from a few months to 8 or so years, with the average I'm guessing around 3 years. We've also seen women diagnosed with mets who appear to be CURED by treatment. These tend to be women with one metastatic site who received systemic and local therapy. One example is Beth Anne, who had brain mets over 3 years ago and has been NED since treatment. Another is Christie Turnage, who had lung mets maybe 5 years ago or so and has been NED since. Oncologists are starting to rethink the whole 'treatable but not curable' line for metastatic breast cancer, as there is a small but definitely present subpopulation of women, usually with one or two met sites (oligometastatic) who seem to be cured after treatment. So it is possible. FYI: The average for ER+ and Her2+ MBC is about 5 years, once again with thick tails at low and high ends.

So there you have it. Anywhere from months to a few years to many years to possibly even cured. Not so helpful, right?

Best,
Denise

-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.

Posted By: rmichaels
Date Posted: Sep 04 2012 at 3:15am

Hi All -

The last two protocols have not been successful in slowing down the liver tumor growth.

Mom has been on Doxil for the last two months. She has had a set back this past week with having liver + galbladder pain and a feaver but antibiotics seem to be helping. I can't believe a entire year has past since she was diagnosed but she has been on chemo almost all of that year. I wonder if her liver is getting cranky from all of the poisons we keep thowing at it. I'm not sure what's next for her but I hope some sort of a chemo cocktail might slow it down long enough to get more time with her. How many unsuccessful tx do they let you be on before no more chemo?

I'm also in a tough spot because she doesn't like to push her doctors for better care.

I push doctors for a living (I'm a drug rep).

I have to remember it's her fight and I can't do it for her (although I would like to at times).

She gets mad if I push to much - ask too many questions - which is hard for me to handle her being upset with me. Mom's are used to pushing their kids not the other way around. :)

Good night

Rach

Posted By: snickers
Date Posted: Sep 10 2012 at 11:17am

Ladies

I need some of your professional wisdom. I have a few questions and hope someone can answer them.

#1) I found out all along that I have been having tumor marker testing CA 15.3 and it showed normal from the beginning even though I am metastatic. My onc. recently switched me over to CA 27.29 and is in the high 30 range (this is the first time for these marker results so I am waiting for the next results in a few weeks). My onc. says this CA 27.29 range is also normal. What other testing can I take to help me diagnostically to ascertain if cancer cells are growing in my body?
#2) In June I had my liver biopsy and discovered I have ER+ receptors (15% moderate reading) and my onc. wants to eventually put me on Tamoxifen. Has anyone heard of their tumors switching over from triple negative to ER or PR+ and if so, is this a good/helpful thing for me? Will Tamoxifen help slow my cancer down?
#3) I found out that I could not get my HER2 NEU results back on my June biopsy as there was not enough tumor tissue taken to get an accurate reading. Should I ask my onc. for another liver biopsy?

thank you to anyone that can assist me in answering these questions. Your experience is much appreciated!!!!

Snickers

-------------
DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: 123Donna
Date Posted: Sep 10 2012 at 11:24am

Snickers,

1. My first onc did the CA 27.29 test, but my new onc does the CA 15.3 one. There is another test called the CEA that you might ask about. Both oncs have done the CEA test in addition to the tumor marker ones.

http://www.webmd.com/cancer/carcinoembryonic-antigen-cea - http://www.webmd.com/cancer/carcinoembryonic-antigen-cea

2. Just my opinion but maybe being slightly ER+ is a good thing as Tamoxifen might help. I read that something like 30% of tumors change hormone status when they metathesizes.

Donna

-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

Posted By: kirby
Date Posted: Sep 10 2012 at 2:53pm

Rmichaels,

Has your mother had her status rechecked since having the mets? Above discussion relates to that and some types respond better to specific chemos.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads

Posted By: dmwolf
Date Posted: Sep 10 2012 at 3:53pm

Snickers, having ER+ tumors is an excellent thing. You might respond to hormone blockers, which are far less damaging to general health than chemo and have few side effects. Yay!
Time to try hormone blockers and see if they help!

It is worth finding out the Her2 status as well, as there are many targeted drugs for Her2+ tumors. Though a liver biopsy carries risk and I imagine might be very painful. I don't have advice on this one.

One more plus is that the tempo of ER+ disease tends to be slower than ER-. So it may have a less aggressive natural history.

As for markers, CA15-3 and 27.29 are the typical ones that work, but they don't work for everyone. I think only 50% or so of women with metastatic disease see their markers track their disease accurately. Others to try would be CEA (though less likely than either of the others) or potentially CTC (circulating tumor cells), though these are probably the least reliable of all. On the plus side, it might be a good thing that your markers don't track. It might mean that you don't have a lot of cancer cells circulating in your blood stream. In that case, the way to track is through scans and symptoms, the gold standard in any case.

Good to hear from you.
Love,
Denise

-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.

Posted By: snickers
Date Posted: Sep 13 2012 at 11:11am

Going for my ct scan today to see how my carbo/gemzar is hopefully still kicking the cancers butt!!!! I got to tell you ladies, I am feeling GREAT (like Tony the Tiger) since I have had my blood transfusion. It took a few days to kick in and now I have lots more energy. I have always been a high energy girl and was slowly going down hill in that department, but now my energy level is back up to "high." It is funny, I don't feel like I have cancer and I am so thankful to God and all my cyber friends for all the support and faith.
Having metastatic cancer is such a bummer. Once you have your chemo you are tired, then you get off of it for two weeks, feel great, then back on it again!!! LOL like is just like a box of chocolates...you never know what you are going to get!!!
lots of hugs to all of you wonderful ladies
Snickers

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DX 10/31/11
6/13 lung/liver mets
9/13 NED lungs,liver met part.rem
5/4/13 NED lungs&liver
11/5/13 NED lungs..liver mets back
LOTS LVR METS had y90 liver trtmt mets contrld
1/3/14 num brain mets

Posted By: TriplePositiveGirl
Date Posted: Sep 13 2012 at 11:45am

Hi Snickers,

I too hope the cargo/gemzar is working wonders for you. It is a GREAT sign that you are feeling good - that means things are working, I believe. I got close to needing a transfusion also when I was on this chemo regime - it was before the last cycle, so I just decided to ride it out instead. Sounds like from your description though it really makes a big difference in your energy levels. I will be thinking of you today...best of luck with your CT scan!!!

Lisa

Posted By: Grateful for today
Date Posted: Sep 13 2012 at 11:46am

Snickers........the tough, strong country girl.......and GREAT (like Tony the Tiger),

Tons of good wishes and prayers for you and your tests today........ and then tons more of the same!

Can one feel energy in a post?   Somehow could feel your Tony the Tiger GREAT energy today.

Was searching for a saying that I had heard in the past......couldn't find it.
Instead found another saying (the site said sayings did not have copyrights or authors unknown).
Thus, now I wish for you (and for all the TNBC family):
     "May today there be peace within.
      May you trust that you are exactly where you are meant to be.
      May you not forget the infinite possibilities that are born of faith in yourself and others.
      May you use the gifts that you have received, and pass on the love that has been given to you.
                            (Snickers, which you do a thousandfold)
      May you be content with yourself just the way you are.
      Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise
           and love."
      May this be there for each and every one of us......in some degree..... every day.
               ( Last line was adapted from original last line: "It is there for each and every one of us.")

With caring and positive thoughts,
Grateful for today...........Judy