Anybody out there with Triple negative?

3xNeg here
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

Yes it is scary to some
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 said:

Newly diagnosed
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.

Dear sister kmerri!
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

Hello from a TNBC Sister
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

Hi ladies
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

tripleneg2 said:

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

I just got my simulation appointment- the 25th !!!!
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

Cindy Bear said:

Hi ladies
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

Hi, triple neg 2, Kay, and
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

salls41 said:

3xNeg here
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

triple neg / taxol and neuropathy
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.

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