CSN Login
Members Online: 7

Anybody out there with Triple negative?

tripleneg2
Posts: 10
Joined: Oct 2012

Hi just would like to connect with some other triple negative sisters.I just finished 7 months chemo,sugery and starting radiation. Scared to death thats why Im here.

heart-in-hand
Posts: 92
Joined: Sep 2012

It sounds like you and I are in the same boat. I just finished chemo, surgery and have not yet begun radiation. I am also shaking in my boots...literally...I can't seem to stop shaking inside. Sooooooo, we gotta get through this together and with the strong comfort of our sisters and the advice that they will give, ok? I wish that you could have been here through your treatments...we could have hung out in the cyber coffee house (with MsGebby) and had a virtual pastry or two together!!!

Yes, I understand your fears about the triple negative. My oncologist just dropped the term on me and carried on with her speech and only now it sinks in how dangerous it is. I need to learn from others now too. I'm glad you are here! Ya wanna go thru rads together?

Hugs,
Kay

tripleneg2
Posts: 10
Joined: Oct 2012

Deal lets do this together.I start rads the 25th.

heart-in-hand
Posts: 92
Joined: Sep 2012

I have not even gotten that far since trying to find a center has worn me out. I will talk with a social worker tomorrow to find out.

heart-in-hand
Posts: 92
Joined: Sep 2012

I guess we really are going to go through rads together. :-) I sure feel a lot better, and i hope you do too. I am going to friend you and send a PM after, ok?

Kay

survivorbc09
Posts: 4378
Joined: Jun 2009

I'm not triple negative, but, wanted to welcome you and to wish you good luck with rads!

Hugs, Jan

tripleneg2
Posts: 10
Joined: Oct 2012

Deal lets do this together.I start rads the 25th.

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

Yes, triple negative here as well. Chemo and bi lateral Mastectomy, no radiation for me. Totally understand how the triple negative term keeps a chill running down your spine! Welcome to the board, you will find lots of helpful advice! I am sorry you are here and have to experience this, but there is no better group that will love you through it!!
{{{Hugs}}}
Sandy

sagefire
Posts: 4
Joined: Sep 2012

I had a bi-lateral mastectomy and expanders done at the same time. Gone through the first 8 week A/C chemo. Now am into 3rd tx. of 12 weeks of taxol. It's proving much harder on me. Oncologist is adjusting meds. My question really is has any one else on taxol had problems with neuropathy? I would greatly like to hear any experiences with this.

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

My fingers and toes are numb and tingly like they are asleep and I have a small patch of numbness on my left ankle and my right wrist..strange I know. I do take the gabbatin for relieve. It does help some,although it does not completely take the numbness away. It is very frustrating for me because I can no longer crochet as I can feel the tension etc of the yarn. But I also know it is a small price to pay for my health overall.
Good Luuck to you, you will be fine just remember every treatment you get is killing off what is trying to kill you off! You can get through this...
{{{Hugs}}}
Sandy

jessiesmom1's picture
jessiesmom1
Posts: 726
Joined: Jun 2010

I was diagnosed with TNBC (Stage IIa, Grade 3) in Dec. 2009 when I was 51 years old. There is no history of cancer of any type in my family. The diagnosis was difficult as I had no tumors/lumps/masses in my breast tissue but my right axillary lymph nodes were grossly enlarged. I had a complete axillary dissection and a right mastectomy. At the time of the mastectomy a tissue expander was placed by a plastic surgeon. I had 4 rounds of A/C and then 12 rounds of Taxotere. I did not have any radiation. I have 2 reconstruction surgeries. The 1st one didn't turn out so well and I had a different surgeon re-do it 6 months later. I also had a reduction/lift on the opposite (non-cancer) side. I am now considered by my oncologist to be on "observation status only."

I would be happy to share my experiences with other Pink Sisters. Getting a cancer diagnosis is a lot to deal with. It is always nice to know we are not alone.

IRENE

laughs_a_lot's picture
laughs_a_lot
Posts: 1369
Joined: Mar 2011

I did a lot of research regarding TNBC and found out that though it can be scary I was fortunate to have several factors in my favor.

For instance, if you have high blood pressure there is a Beta blocker called Propranolol that will inhibit the metastising of TNBC. Propranolol was what they used for high blood pressure prior to the newer drugs they have now. So when I showed the research to my primary care physician they added this to my other blood pressure medication. Since I had two positive lymph nodes I figured I was early enough to use this drug to keep the cancer from spreading to other organs. I did not even get permission from my oncologist to get started on it. I just told him about it on my next office visit.

Many have decided not to read the research finding the statistics too depressing. I carry the benefit train for my family and so wanted to take all the facts into account as my husband is disabled. But try not to think about the statistics. Remember you are a person not a statistic.

kmerri
Posts: 2
Joined: Oct 2012

I was diagnosed with TNBC on Sept.11,2012. I am beginning treatment at Karmanos Cancer Institute next Wed. Chemo every other week for 8 weeks and then every week for 12 weeks. I too am scared to death. My husband died suddenly 18 months ago and although I have the support of wonderful family and friends, I come home alone. I am terrified of chemo but realized once I walked through the doors at Karmanos, I got on a rollercoaster and can't get off. Can anyone describe what the chemo sessions are like? I am clueless at this point.

heart-in-hand
Posts: 92
Joined: Sep 2012

Welcome to the board. I can only imagine how difficult it has been for you in the past year and a half. And now this...of course you are afraid. Although you are home alone do you have someone that can come and stay with you from time to time? A daughter or friend? I'm really glad that you have family and friend support because that will make this soooo much more do-able.

The chemo sessions (for me) started with blood work. Then I visited with the Oncologist who asked questions about the side effects and changed what needed to be changed. After the blood work came back with the counts I was sent to the infusion dept. where a nurse began an IV drip of anti-nausea drugs which took about an hour (for me-everyone is different). After that the cancer fighting drugs were put in the IV and it lasted about an hour also. You will be sleepy from the anti-nausea meds so please have a family member take you home after! Do you have a port? I didn't so I can't advise there.

Our sisters that have been on the board a long time have helped all of us going through this with tips:

-Drink lots of water the day before, day of, and days after chemo! Drink it during chemo.
-Take the anti-nausea drugs as directed and keep a notepad everyday of the side effects you have afterwards. (Your Oncologist will be able to help with changing the chemo or nausea drugs to lessen those!)
-Biotene toothpaste and mouthwash several times a day help with mouth pain and ask Oncologist for a prescription if you need something stronger.
-Watch for a fever, so keep the thermometer at the ready, and have your Oncologists phone number handy if it goes over 100.4
-Ativan helps to calm you, and is also anti-nausea.
-Sennocot stool softener because the nausea meds are constipating.
-Immodium for diarrhea.

Rest is so important. This isn't the time to host family doings or accomplish your fall cleaning, ok? There is so much more to tell you, but you have enough on your mind. Would you please post as you face off with the beast and we will all stand with you!!!

Sending you love and peace,
Kay

kacee999
Posts: 110
Joined: Oct 2012

I finished 4 months of chemo in May. It was not pleasant, but it was doable. The worse I felt, the more I told myself that it was killing any cancer inside me too. I read up on side affects and prepared myself. I educated my husband as to what to expect (me in bed or on the couch mainly) and not to try to cajole me through this. Accept my limitations and understand that there will be many things I cannot do during my "down times". My down times were about day 4 (after chemo) through 14. Then things got better. The Chemo session itself is nothing. Take a good book and be prepared to hang out for several hours. I got very clinical with it after the first round. I knew how much time I had before I started feeling punk, and when to stay home and not go into public because my white cell count would plummet to zero (day 7-10 pretty much). I read up on all the potential side effects (and amazingly I never was nauseated ONCE through the whole thing! I took EMEND the day before, day of and day after chem session and I never had one iota of queasiness!) The best thing you can do is arm yourself with as much information as possible. That helps a lot.

JoAnn4818's picture
JoAnn4818
Posts: 83
Joined: Jan 2011

I was just checking in and was surprised to see so many new triple negative breast cancer survivors! TripleNeg2, Kay and Kmerri I'm so sorry you have to deal with your diagnosis and the fear that comes with it. I'm glad you found this site! I found a lot of advice and comfort here when I needed it going through treatments and also now when I go through the "scares" of recurrence that fortunately have been false so far.

I was diagnosed a little over 2 years ago, TNBC Stage IIA. I had 2 failed lumpectomies then a mastectomy followed by dense dose chemo. I had A LOT of problems with chemo but I continued on knowing it gave me the best chance of beating cancer. Kay gave you great advice on dealing with chemo. Make your chemo nurse your best friend. Eat what you can - I lost 30 pounds - I found plastic forks and spoons helped fight that metallic taste. I got a port and loved it!

I got through it and I'm doing terrific now. My hair is back - brown instead of blond! My fingernails, eyelashes, eyebrows are better than ever. The effects of chemo will pass. I still worry but not as constantly as I first did. I will pray for you and think of you as go through your remaining treatments! Bless you all.

JoAnn

linpsu's picture
linpsu
Posts: 727
Joined: Mar 2010

Hi ladies. Sorry you have to be here but there are several of us who have TNBC and hopefully we can help to get you through this.
Mine started out 4 years ago with an area of hardness; I didn't realize that could be BC as I only thought that lumps were the first sign. Eventually I was diagnosed with DCIS (technically Stage 0 but my area was about 5 cm). I had a lumpectomy and sentinel node removal; margins weren't clear so dr. did a mastectomy. I had an expander put it, then an implant several months later. I had no chemo or radiation.

Then 2 years later from my original diagnosis, it came back under my mastectomy scar. It was 8 cm, and Stage 3C. I got a port, which I highly recommend, and chemo started almost immediately. I had dose-dense chemo, every 2 weeks; 4 rounds of A/C, then 4 rounds of Taxol. The chemo sessions were pretty long - usually 6 hours, as they had to put it in slowly because I had several allergic reactions. Most people lose their hair about 14 days after the first chemo, which is the exact day mine started to come out. I had it shaved that night. I had gotten my wig already so I was ready for that.

Twenty-four hours after chemo, I had a Neulasta shot, which was to keep the white blood cell count up. I usually felt pretty good the day after chemo, due to the steroids in one of the IV's, then took it easy for the next 2-3 days. I did lose 40 pounds b/c food just tasted horrible and I had no appetite. As I've struggled with my weight my whole life, that was one good side effect. I had a little nausea for about 2 days after each chemo session, but there is medication that helped. Keep in mind that different people have different side effects.

When I was done with chemo, I had surgery - the tumor had shrunk to less than 1 cm with the chemo. The implant was removed along with a lot more tissue, and 14 more lymph nodes. One of them was positive. I then had 32 rounds of radiation which were not that bad.

My surgeon and oncologist really didn't dwell much on the TNBC part, but of course I did research on the internet and it sounded pretty scary. So I stopped going there. When I finished treatment I was really scared about being triple negative, but I really don't think about it too much anymore.

You will do great, and treatment will be over before you know it.

Love and hugs,
Linda

Cindy Bear
Posts: 564
Joined: Jul 2009

I pop over from the uterine/ovarian boards sometimes.. this post caught my eye. I just read a book, The dog lived (and so will I) by Teresa Rhyne(Sp?) Anyhow she was diag. with triple negative BC shortly after nursing her dog through cancer/chemo. I thought the book was really enjoyable and informative. I think she also has a blog but I've never read it.
Big hugs,
Cindy

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

Hi, triple neg 2, Kay, and kmerri, welcome to the sisterhood! I was diagnosed with Triple Neg IDC Dec 27, 2011 after a routine mammogram, so I'm a little ahead of you. I had chemo from Jan til the first week in June, a lumpectomy June 28, and radiation from late July til the end of August.

kmerri, it sounds like you are having the same chemo regimen I did. I had Adriamycyin and Cytoxin every other week for 8 weeks then Taxol weekly for 12 weeks. Before starting chemo the surgeon placed a marker in my breast at the center of the tumor. This was good because by the end of chemo the tumor had totally disappeared, but he could still find where the center had been when he did the surgery. I never had any problem with nausea and actually gained weight on chemo. My MO says quite a lot of women do gain. I took Emend before and after the A/C for nausea and apparently it worked great. I also got Neulasta the day after to keep my WBC up with no problems. It stimulates the bone marrow and can cause pain. A lot of sisters here recommend taking Claritin before and after to prevent that pain. With both sets of chemo, I always got Dexamethasone in the IV before the chemo was started to prevent side effects. It is a steroid. I always took an Ativan the night after treatment so I could sleep as the Dexamethasone makes you feel hyped up. That wears off in 2-3 days and then it feels like hitting bottom for a couple of days. At least, that's the way I felt, so don't be surprised if it happens to you. You got lots of good advice earlier about hydration, temperature, etc. I always tried to "look forward to" chemo sessions instead of fearing them and imagined the drops going in as little Pac Man figures gobbling up cancer. :-) My hair fell out about exactly 2 weeks after starting treatment also. Chemo is cumulative, so as the A/C got toward the end, I was feeling pretty wiped out. Then, when I started Taxol, I felt like a brand new person for the first 6 or 7 weeks. I did lose a few toenails with the Taxol and they still aren't back to normal, but, weirdly and nicely, my fingernails have never been better or stronger. Chemo is definitely doable and easier than it used to be with all the new drugs to counter-act side effects. You will get through it. And please accept all offers of help. If folks ask what they can do, tell them. They want to help when they offer

Actually, being triple negative, I was terrified when I FINISHED chemo. I felt safe as long as I was getting chemo. My MO told me that if triple negs get through the first 2 yrs after treatment without recurrence, their chance of recurrence drops way down to practically nothing.

triple neg 2 and Kay, I had some surprises with radiation. My MO and RO both had told me that after chemo, radiation would be a piece of cake. So, I was fine til the night before I was to start. Couldn't sleep. Wondering--what if I sneeze--will it zap my heart? What if the machine sticks on "ON"? Etc---So, I just asked all the ?s I hadn't thought of before to the therapists before they started and they gave good logical answers that calmed me down. Then, the RO had told me not to expect any reaction for the first 2 or 3 weeks. Well, the first afternoon, part of my breast was pink! YIKES! If it's like this now, what after 29 more???? Well, Linda on here had the same happen with her and my RO THEN said, well, that does happen in about 15% of the cases. It doesn't mean it will be 30 times worse by the end. And, it wasn't. So, just a heads up if that should happen to you. After that rather alarming start, I finally calmed down and was able to relax after awhile.

So, good luck to you new triple neg sisters and keep us posted on how you are doing and if we can help in any way.

Angie

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Hi and welcome. I am not TNBC, but, wanted to let you know that we are all here to support and encourage one another, irregardless of what type, stage or grade of bc. We are all pink sisters! Keep posting and keep us updated.

Hugs, Angie

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

I wanted to welcome you too! I'm triple,negative, been battling since August 2009, won't give you my whole story right now, as its long and I'm wore out already at 7am LOL. It sounds like your doing the same regimen as I did so I want you to know I'm here for you along with the hundreds of other wonderful people on here. Welcome again, as we all hate what brought us all together, we are truly blessed to have this "Cyber Home" as I like to call it. I have great news for you, we're open 24/7, and even every Holiday, can't beat those hours:) Try to have good days and smile, you have an army pulling for you here, along with several survivors that give us hope!
Miles of Love
Kari

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

I just read all the other posts and with tears in my eyes I must say this place is so amazing and look how quick a total stranger will pipe in to help. Their are some who are survivors of your exact type, some who don't have your type but still holding your hand as you battle this beast. WELCOME AGAIN :) This place is so wonderful! I never thought I could love so many people that I've never met, and yet I feel a piece of every one of you in my heart.
Miles of Love,
Kari

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

oops!!

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Sorry, triple post, dang ipad :(

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Sorry, triple post

treecy1106's picture
treecy1106
Posts: 149
Joined: Apr 2011

Hi my name is Patrice. I am a TNBC survivor since my surgery in April of 2011. I never knew there were so many types of Breast Cancer but now I do! Being afraid is putting it mildly for me...I was terrified! I was just separated, sold my home and moved into an apartment when 2 months later I was diagnosed. Very hard time. I knew I had to get the cancer out so I stayed focused. I was Stage IIa, I opted for a bilateral mastectomy with reconstruction. No lymph node involvement. No rads just chemo ACT dose dense. I then signed up for a course as a Holistic Health Counselor and now I am certified.
I knew that the surgery and chemo would help get rid of the cancer but I wanted to make sure that my body never would enable that to happen again.
To help with your anxiety stay focused on helping your body heal itself from the surgery, chemo and cancer.
Things to do:
1) Ask your oncologist if you can take D3 Bcomplex B12 and B6 during treatment.
2) When they do bloodwork have them check your Vitamin D levels.
3) Drink WATER! I drank at least 2 liters a day and I was 120lbs
4) Stay away from sugar, white/whole wheat bread or pasta. Only sprouted wheat (Ezekiel) or brown rice or Quinoa pasta.
5) Limit meat, poultry and dairy
6) Keep your body alkaline.
7) Eat green vegetables and juice everyday
8) Invest in Green Vibrance and add it to an Orgain drink. (Orgain is an organic meal replacement)
9) eat organic and stay away from anything processed.

Rome wasn't built in a day....I wrote a booklet about it ...if you want a copy email me and I will send it in a PDF file.
Treecy1106@yahoo.com put in the subject bar "BOOKLET"

These are only suggestions but my oncologist/hematologist said to me.."Whatever you are doing, KEEP DOING IT!

During treatment I took all those Vitamins listed in #1 and Orgain w green vibrance. I had no reaction from the chemo and I didn't take any anti-nausea meds. I totally detoxed my body and flushed the chemo out with the cancer! I am confident it will never come back!
TNBC is scarey but unlike our estrogen positive sisters who can get a recurrence even after 20 years, our recurrence after 2 years is slim to none!
Stay positive, keep living, pray, do yoga, be thankful, and always always take care of yourself! This time it's ALL ABOUT YOU!

Love to all of you!!!!(((hugs)))
Patrice

java1234
Posts: 1
Joined: Oct 2012

question is what i think that causes the cancer in people, one-it what you eat and drink, that has a chemical in it to causes cancer so that person has to buy medicine or take chemo to slow down the cancer spread, my wife was philippinal and her sister and cousin had breast cancer at about the same time but live far from each other but they caught there cancer in time to survive it, 2- a lot of people don't know that having medicade and medicare and blue cross and eflax will cover the cost of the treatment it does to some extent but the chemo that she needed cost was too high and was denied, so she was giving the lesser cost drug chemo, she walk into the baptist hospital in little rock july 1, 2010 and three week later she die, in that hospital they wanted to kick her out and put her in a hospice but she die the next day, july 20 2010, people should wake up and pray, she lasted 5 years fighting cancer, but do some research about the foundation that take money for finding a cure, the rich people that run the drug company keep the foundation quiet and they say they are getting close to a cure, and one more ideal is that plastic drink container that you drink water or beverage out of, research the chemical that are inside and what the plastic is made of, i pray for every body to get there check up early, the big city have the best machine to detect cancer and pray for the veteran of the military they are not getting a cancer check up, which i have ask the doctor and they say nothing.

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

I am so sorry for your loss.

24242
Posts: 1417
Joined: Mar 2001

I was diagnosed in 1997 at the age of 36. At that time they hadn't isolated triple negative but new if you were positive or negative to estrogen. After having problems a few years ago because I was part of a study they were still able to go back and see if I was triple negative and that I am. I found all of my lumps and actually had a lump in armpit that grew to size of golf ball in just one week. I was ill and new I had cancer before tests. Funny to be told that my chances of reoccurance were next to none after my treatments only to find out I am triple negative.
15 years and counting myself very lucky. Unlike most people I have given up on the constant health kick I was once on and now enjoy eating food just in moderation. Sugar is now apart of my diet something it wasn't so much before. I actually went the other way but did find away to quit smoking cigarettes the biggest change of all though I was never truy a heavy smoker since an athlete.
I am one of those survivors who is more interested in the Quality of my LIFE than the CURE. I believe I have prolonged my life the best I can and have learned to work harder than even before the big C. I just found either I was on the train of life or I just wasn't and learned to simplify everything...
I too am surprised at the number of triple negatives.
Tara

laughs_a_lot's picture
laughs_a_lot
Posts: 1369
Joined: Mar 2011

They said eat in small amounts several times a day. I of course did not always listen to this advice. I only vomited when I over ate. Though I had nausea at other times it was bearable. I worked durring this time also and only called in about once a month. I do think that the effects are stronger if you have to have heavier dosages of the medication (like I'll bet they give more medicine to a stage 3 person than a stage 2 person). I was stage 2 and fared quite well.

To the man who lost his wife. My condolences. You are right about the unknown chemicals in containers. I now home can much of my food due to BPA as it limits my exposure the chemical as the jars are glass and only the lid has a coating of BPA. I began this just before cancer due to finances but now am glad I began the practice.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network