Triple negative starting out

carolynf

Hi,

I am just starting my journey of Hope.  I was diagnosed in October w/breast cancer, triple neg, nodes clear, and grade 3, stage 1.  My oncologist has set me up w/starting dose dense AC, then onto Taxel.  He has said I was a good candidate for a phase III trial of Avastin.  Has anyone had this added to their treatment?? I am nervous to say the least of all of this.  Very overwhelming but I need to get rid of anything that may be lurking in my body.

Thanks,

Carolyn

Kathy_R

Carolyn~

I know this is a very scary journey.  I was dx in April of 2002.  Lumpectomy, Stage 2a, Grade 3, nodes clear, Trip Neg.  I received 4 doses of AC followed by 33 rads treatments.  I passed my 5 year mark this year.  Yeah!!!  I did not have Taxol or Avastin. Dose dense therapy was just started after I finished treatment.  I agree that this is very overwhelming but once I started treatment and became pro active I felt more in control.  I wish you well on you BC journey.

Kathy

FloridaLady

Many of us have done Avastan for other stages.  It's a good drug and is widely used already.  I had it over a year ago outside of a trial.

Hopefully your side effects will be mild with this chemos.  Was able to work through 25 tx of chemo.

Living in hope,

Flalady 

lbcurtis2007

Hey Carolyn,

I too am triple negative and just starting out.  I was dx in Nov and I meet with the oncologist this Friday.  I am scared of the chemo and all that comes with it. 

I am trying to determine if the triple negative is a bad thing or a good thing.  Seems that from most of the conversations that if you are triple negative that you are at higher risk of recurrance.  Is that what you have read?  I know breast cancer is bad period, but I would hate like h___ to have to do this again.

Any info on stats for triple negative recurrance would help.

Sofie

Carolyn: Welcome to the forums. My mom has a similar diagnosis as yours. But she had a mastectomy and is on her second AC tx. I've not heard much about Avastin for stage one BC though. Perhaps you could seek a second oncologist's opinion if you feel unsure.

lbcurtis2007: Don't dwell too much on the statistics, everyone's body is different. There are cases of good prognosis turning out otherwise and "poor" prognosis outperforming expectations. I come across several long term TN survivors here and they give me hope.

I used to dig for info and statistics like you but it wore me down alot and made me depressed (especially when the prognosis is not so good), so much so that I lost strength to support my mom physically and emotionally which is not what one needs at this time (be it being the victim or the caregiver). So at this point in time, don't worry too much about recurrence. Concentrate first on going through with the chemo tx (if that is your oncologist's recommendation).

My mom is 68 year old and she's going through chemo as well. Lotsa ladies here also tough out the chemo, the side effects are manageble. I'm sure you will get through this too. Take care.

Counting the days,

Sofie

CaNatalie

Hi Carolyn,

Just wanted to say welcome and hope you're doing well. I was dx in 8/07 and am half way through my treatments of chemo. Although it is somewhat different than yours (carbo and taxotere) I just wanted to let you know that it has been more tolerable than I thought. Chemo and all the possible side effects can sound scary but everyone seems to have their own reaction. Some women on here helped me remember the most positive effect of chemo...killing those cancer cells! Keeping this in mind seem to help me during my tough times of treatment.

Hope your'e doing well.

Natalie

carolynf

Thank you all for your replies.  I have to agree with Sofie on becoming obsessed with everything that's out there on tnbc.  I've learned to not stay on the internet searching for statistics or reading  negative things out there.  That's where a lot of my depression was stemming from.  It was also driving my husband crazy.  I suggest being around positive people and also being positive yourself.  I start treatment on Monday and am scared/nervous about the whole thing.  But the only way to beat "C" is w/chemo.  I have been told that the first 4 are the hardest and then the taxol is a piece of cake.  I will keep you posted on how my body handles it.  I think getting the first one over with is what brings on the nerves...Wish me luck.

C 

Sofie

Hi Carolyn,

Good luck with the first infusion. Hope you are doing ok.

Counting the days,

Sofie 

Sadie-Rose

Hi Carolyn,

Just wanted to let you know you will be reading a lot of success stories here.  I am 4 years out and doing well.  I was stage 2b, grade 3 with one positive node.  I was treated with AC which did not impact my tumor, so we switched to T with carboplatin and the treatment worked. 

Please keep posting here and you can send a private message too, if you have questions.

Warmly,

Sadie

wvgirl

Hello Carolyn,

                          I am new too this also. Dx. 11/26 with IDC triple Neg. I will see Onc. 12/18 to find out results of Lymph Node Biop I had done last week. AS of this point they feel I am stage II. We will get through this .

Be Strong-You and the Lord will overcome this together.

                                                                                Blessings

                                                                                          WV Girl

HollyHopes

Hello Ladies and welcome (sadly) to the newbies...I was diagnosed in Feb 07.  Triple Negative is a very aggressive cancer, but it is also the most responsive to chemo. You will find tremendous support here so keep checking in...this website community got me through the past year in a way that no friends or family members could...

WE 'get' it!! 

Sending hugs to all of you,

Holly

carolynf

Thanks for the uplifting words.  Well, I made it thru the first infusion.  Got there at 12;30 for blood work and didn't get out til 4pm.  Due to the beva trial drug that took 1 1/2 hr to do.  I went to my sons band/chorus concert which did bring on a little headache.  Went home and could not sleep.  Took one of those little pills and nitey nite came and went.  Woke up jittery, probably due to the steroids in the meds.  Went back to Dr's for the neurlasta shot.  I think that hit me harder than the first day.  Went home and took a nap.  Felt better but had to take a little pill before bed.  Today, I felt a little off because I couldn't eat so I made some oatmeal and voila. What a difference.  Had soup/crackers for lunch and have felt ok for most of the day.  I know it will get harder as time goes on but getting the first one over with is such a relief.  Thanks to all for being there with me for the 1st one!!

Love to all,

Carolyn

Nicole_McC

Carolyn,

I too am triple negative and was dx Jan 07.  I am going to be celebrating my 1 yr mark with a complete hysterectomy.  You are correct in saying the triple negative is not a good thing to be, but there is hope at the end of the tunnel.  I had 4 AC treatments and 4 Taxol treatments.  The AC treatments are the worst, just remember they give you anti nausea medicine for a reason.  Take whatever you feel you need when you need it.  It does help and makes life a little better even while going through chemo.  You are in my thoughts and prayers as this god for saken disease invades our lives......god bless.

Shirlann

Ya know, life is so funny, 9 years ago, when I was diagnosed as a Triple Negative, no one said much of anything and there was nothing on the net.



So I never thought much about it, just was glad I did not have to take Tamoxifen.



Talk about information not always being the best thing! So true, so true.



Sometimes, ignorance is bliss.



Gentle hugs, Shirlann

wvgirl

Hello Carolyn,

                     I hope your feeling better. I saw my Onc. Yesterday 12/17 (after waiting 3 hrs) I will get my port 12/27 Chemo to start 1/2. I will do chemo first then surgery. I hope you have a wonderful Christmas. Blessings to you and your family.

Rainenz

Good luck to all the newbies hope all your tx's goes well.

You girls certainly have far more info than I had back then. 

On a brighter side I  am triple Neg and was 1st dx 24th Dec 1996.

What a great Chrissie Present, but 11yrs on on still going strong.

Raine

carolynf

Good morning all.  I am up and that is good.  It's day 4 after the 1st treatment. Have been having some light coughing going on, the type you feel before you are going to get sick. (maybe compazine today?)  I have cut out coffee after not doing so good yesterday and am back on tea.  I read that scrambled eggs are a good breakfast food to help keep up w/protein.  Any other suggestions out there for breakfast. 

 WVgirl.  Good for you with going w/the port.  I talked to various people and no one (my onc or nurse) would say definitely.  After talking w/my cousins wife in England she said DO THE PORT.  The 1st infusion was great.  Everything went like it was suppose to.  So good luck with the installation.  That was sore for a bit.

May your holidays be filled w/family and great friends, and lots of holiday cheer....even though it maybe from lying on the couch!!

lbcurtis2007

Hello Ladies,

The past two weeks have been a whirl wind of activity for me.  I developed possible kidney stones after my node biopsy.  Boy have those been painful.  I saw my onc docs on the 14th and they recommended chemo since I am triple negative and had an invasive cancer.  I got the port put in yesterday and will start Chemo the first week of Jan.  I also have to have a cystoscopy on my bladder and kidney's done next wed to make sure that the stones don't cause anymore infections with me starting Chemo.  With all that the holidays haven't been that cheery.  I broke down an cried after surgery yesterday.  It seems I have been in pain from one surgery or another since the 2nd of Nov.  It just all became too over whelming. 

Baptist Hospital of Jacksonville, has a program called Breast Cancer Care Coordinators.  Anytime a woman is diagnosed with cancer the coordinator meets with her to give her the basics and help her with decisions.  My coordinator stopped by yesterday and I bawled like a baby.  I often wonder if I will be strong enough emotionally to make it thru the chemo and radiation.  Then I stop and think about the diagnosis and all the surgeries that I have already made it thru and I am still going.  So maybe just maybe with my friends, family and the support of people here, I will make it. I was so incredibly thankful the my husband was with me yesterday.  He has been such a great source of strength and support for me.  Our marriage wasn't the tops before all this, but it has definitely made us both appreciate each other and the time we have together.  Sorry this is so long.

Here's to keeping the chin held up!!  Happy holidays to all.

carolynf

Good early morning,

Had my 2nd AC dose on Monday. Got there at 9:30 and didn't leave til 4pm.  Newby nurse onc. who wanted to make sure things went slowly! Rather have it right than wrong. Felt fine when i left but started having stomach yucks about 8pm w/slight headache.  By 10pm I had to call it a night....Didn't get to see the ball drop but felt better in the morning.  I did wake up Monday w/a sore scalp. My hair actually hurt. One of the girls at the Dr's office said its a sign of your hair getting ready to fall out.  this is good to know. Besides that things are going fine w/the AC. My lab test came back w/everything back to normal except elevated liver enzyme.  I figure this could be due to the trial drug Beva. He said we will just have to watch it.  I have noticed that I am getting up in the night 1-2x to go to the bathroom.  That was not a norm before.  Also, I think my sleeping pattern has shorten.  Instead of 8 hrs a night its 6.

WVgirl:  Good luck today.  I found it easy w/the port for the chemo. I was wracking my head days before the first treatment.  It was nothing.  I think I had more side effects from the shot the next day of Nuelasta...Just leg cramping for a couple days.  I will take ibuprofen today before I get the shot to help w/that.  Maybe some tonic water also..

Shirlann/Rainenz:  Thanks for some uplifting information.  It's hard hearing the neg which is more out there than the positives.  Keep  sending good vibes and I am keeping positive that I kick some "C"'s butt w/all this chemo I am putting into my bod.

Beth:  I hope all is well with you.  What a trying time.  Positive energy is being sent your way from me.  Right now i feel like I have a lot to share. My niece and brother have both had kidney stones and I know it can be very painful. Hopefully that bump in the road will be over and done with for you to move on.  keep you chin up.  I look at things could always be worse and I know there's someone out there whose problems outweigh mine.  I will be praying for you. I guess I've rambled on...steroids!!

The best ever 2008 goes out to all!

pdaly

Forgive my ignorance, what is AC?

twink

AC is the abbreviation for the commonly used Adriamycin Cytoxan chemotherapy combination.

deb102307

Where did everyone go?  This is a good thread so I hope we can keep it going. 

wvgirl

My port went in well only sore for 3 days. I had my date changed for first treatment it was Friday will do 4 cycles every 21 days of taxotere then 4 cycles every 21 days of A/C.  Then surgery.I went and had neulasta shot today.My onc told me 1 shot was cost more than him(lol)

I am having trouble sleeping due to steroids. I tried Tylenol pm last night didn'd help.

My dx of nodes was positive but BRCA was

negative (yea) that was great news. I have 18 yr old twin daughters.

Take care everyone.

SpunkyGirl

Carolyn,

I just wanted to let you know that my husband has been on Avastin for over a year now in a clinical trial as well, and he is doing fine on it.  He does have some excess protein in his blood as a result, but it's not harmful, and he doesn't get tired at all.  He is being treated for a recurrent brain tumor.

WV girl, I'm from one of those "Hollers" outside Charleston, and I have seven siblings still living in the area-Clendenin,Charleston, Cross Lanes, Scott Depot.......go Mountaineers.

Bobbie

wvgirl

Hi Bobbie,

             I live in Kingwood home of the Preston County Bucket wheat Festival I work in Morgantown. My twin daughters are Freshman this year at WVU My one daughter just told me that she and Noel Devine have a class together when classes start back how cool is that.

Glad to meet a fellow West Virginiain

Shirlann

ha, ha, where did we go? That was so cute! I think we are all laying on our backs thanking our dear Lord Christmas is over! hahaha



Anyway, you are right, this is a great thread and I think it is a big help when the women hear from us "oldies" that are okay after many years. Can you believe I sometimes forget what and when I had something done? YIKES, maybe it is old age.



Hugs to you all, Shirlann

Lee27

I too am a triple neg.  I took Adriamycin, Taxol, and Cytoxan in my txs. I can relate with the leg cramps after the N shot.  They had a few of us take Claritin of all things. They were finding in come cases this worked for some.  My txs were every 3wks for 6wks.  Last one back in Sept 07.  Heading down the home stretch with radiation now. Tomorrow will be my 24th with only 7 more to go! So happy for that.  I do have awful joint aches now...legs included. Wished my legs were on somebody's body beside mine in the mornings. Oh and the shoulder sockets...ouch to reaching.;-)  I had chemo lst, lumpec, and now rads.  Best to all in this New Year!

Sadie-Rose

Hi Lee27,

When I went through chemo therapy my oncologist suggested that I take magnesium.  She said the chemo medications deplete your body of magnesium.  We were discussing this on another thread that calcium and magnesium helps with leg and muscle cramps.  You might ask you oncologist about that.

You are getting so close to the end of treatment!

Warmly,

Sadie

RN2teach

I'm glad I found this conversation. I saw my oncologist last week and learned I was triple negative. I haven't found much "positive" information about this type of bc except that it is responsive to chemotherapy. The risk of recurrence is rather disturbing, isn't it?! Anyway, it sure was good to read the comments from those of you who are long-term survivors--thanks so much for posting!!!

Bobbie, my hubby is a brain cancer survivor. Dx glioblastoma 2006. He has MRIs every 3 months. His last MRI was 12/18 and was clear. He finished his treatment last February.

I have my port inserted tomorrow and will begin chemotherapy (dose dense AC x 4, then Taxol x 4) on Friday.

pta0317

I'm a newbie to this forum too.  My 33yo daughter was dxd in August of '07 and was scheduled for chemo every three weeks for six treatments on ACT.  The day after tomorrow is her last chemo and then she has daily radiation for six weeks.   She is also a triple negative and at her young age, I'm very concerned about a recurrence.   This is even more frightening because I'm a medical transcriptionist and most of my work comes from a major cancer research center in the South (I live in ME).    It's very gratifying to know that there is somewhere I can turn to for information.  

Catherine is usually quite ill and tired for about 4-5 days after chemo and hasn't been able to work.  I'm inspired by her and the rest of you for your bravery and courage and attitudes.

For those of you who have undergone radiation therapy, I'd like to know what side effects you might have experienced and if there are comfort measures she can take at the target site.   She's Stage I, T1, N0, M0. 

One of her main concerns is preserving her fertility.  Have any of you conceived post-diagnosis and post treatment?

Blessings to all!

snowyday

Hi Pta:  I'm triple negative as well, I'm finished my chemo and radiation now.  Tell your daughter to make sure she applies aloe vera 100% pure, no colour to breast after every treatment and at least three times a day.  It really helps. Pearl49