triple negative
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Topic: triple negative
Posted By: ruth
Subject: triple negative
Date Posted: Sep 27 2007 at 5:56am
| I have just been told that I have triple negative cancer. I am a white 70 year old woman and have never heard of this nor have my friends. I have a friend who also has the same cancer. I am being given taxotere and cytoxan every three weeks for four sessions. Is anyone else having the same treatment. |
Replies:
Posted By: CarynRose
Date Posted: Sep 27 2007 at 6:35am
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Ruth,
I am being treated for a recurrence of triple negative cancer. The reason that you probably haven't heard of the term is that it is a very new one -- about two years old. When I found out about my first cancer 4 years ago, they just called it ER/PR Neg. and Her2nu Neg. Back then, they didn't even know just how much that determination can effect your outcome and there wasn't much research for a treatment for us. Now, they are working hard to find treatments for triple negative so that we can have treatments like Tamoxafin, or Femara, etc.
Best of luck,
Caryn
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Posted By: lisab
Date Posted: Sep 27 2007 at 8:07pm
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I too am a white female, 57 years old, triple negative, and CarynRose is right about this phrase being new. I am currently being treated for recurrence of breast cancer and just completed 33 radiation treatments along with 3 chemo treatments of Carboplatin. I'll continue more carboplatin chemo and another drug, Gemzar, will be added later. I wish you good luck with your treatment. Also, I am glad to have found this group as I have been having alot of trouble finding info about triple negative cancer. There is an article in Oprah magazine this month, so hopefully, that will help get the word out.
Lisa B.
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Posted By: ruth
Date Posted: Sep 29 2007 at 2:47am
| Thank you for your reply to mine. As mentioned I am having four sessions of Cytoxan and Taxotere. I have had a masectomy and replacement at the same time. Finding my cancer was an accident. No one found any lumps but the ultra sound saw a shadow and after an MRI I had a lumpectomy and all was well. Unfortunately the pathologists report showed lots of minute spots and so I had a masectomy with 17 nodes removed. I have had one session of chemo. I wish you good luck |
Posted By: ruth
Date Posted: Sep 29 2007 at 2:53am
| Thanks for your message. I am having only four sessions of chemo. I have had one so far. My cancer was found by accident, but for the ultra sound it would not have been discovered. My surgeon who performed the lumpectomy was shocked at the pathologists report, seven pages long, as they discovered minute spots of cancer, so I recently had an masectomy etc. So hears hoping all will be well. |
Posted By: ruth
Date Posted: Sep 29 2007 at 3:19am
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Caryn,
I seem to be sending my reply to myself. So if you go on my name you will see my reply to you.
This is a test to see if you get it.
Thanks for writing to me.
 |
Posted By: ruth
Date Posted: Sep 29 2007 at 3:21am
| Dear Caryn, Thanks for writing to me. I seem to have sent myself my reply to you. So try my name and see if it turns up. Thanks for your interest. Ruth |
Posted By: ruth
Date Posted: Sep 29 2007 at 3:24am
 Caryn,
I am having trouble replying to your message, I seem to have sent my reply to myself. Hve a look on my name and you will see my message to you.
Ruth
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Posted By: English Jan
Date Posted: Oct 07 2007 at 11:25am
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Hi Ruth,
I am 53 yrs old Triple Neg, had a lumpectomy August 23rd 2007 2.5cm tumor removed with clear margins, SNB dissection , no positive nodes.
My ONC has me on 4 cycles of Cytoxan and Taxotere, also had my 1st Treatment 19th September.
My 2nd is on Tuesday 9th October.
Once all chemo's done .. I'm having radiation.
Since I don't have insurance .. having to pay for everything up front. I had 4 shots of neupogen, couldn't afford the neulasta ....
I've had pain at the surgery sites and the nerve down my left arm, this is disipating some what, lots of ice bags worked, with tramadol.
My hair coming out by the handfuls, so had my hair shaved, with a few friends.
The Chemo whacked down my ANC (white cells0) to 0.4!!! My ONC put me on antibiotics in case. The checked ANC 2 and 4 days later. They came back up.
I'm reading all kind of things all over the web about survival rates and mets and as some of the ladies here have said ... "I'm not a statistic" These Stats are old" ... true but periodically it goes through my head the "What ifs ... "
I was supposed to be in Peru walking the Inca trail, now I'm walking the TNBC Life Trail .. sometimes trudging!!
God bless you, your family and your doctors.
English jan
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Posted By: ruth
Date Posted: Oct 13 2007 at 3:14am
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Hi Jan,
It is unfortunate that you have no insurance. As I am 71, I am on Medicare. I had my second treatment on Thursday. They first give me a saline solution, than Dexmethasone. We then wait half an hour and then I have the cytox and Texatere. I then go back for the neulasta the next day. I am fortunate that I was able to go swimming and do my usual exercise programs the next day. I take Prilosec for the first few days as I had dreadful acid reflex after the first dose. They also gave me a flu shot.
My hair is on its final stages of falling out. I was able to get a fre e wig from Cancer Care in Norwalk, Ct. I think you can get free wigs from other places. I do wear a hat in bed now the weather has got cold.
The steroids hve given me a great deal of energy and my oncologist calls me The Iron lady. I wish you a lot of luck. I do not think I will be having any radiation as I had a masectomy and replcement straight away.
Good luck to you.
Shirley
 |
Posted By: Darla
Date Posted: Oct 13 2007 at 4:45am
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Hi English Jan and Ruth -
Jan,
Until you mentioned that you didn't have health insurance I actually thought you were from the UK but insurance would not be an issue there. I have no idea what your financial situation is but paying for cancer treatment out of pocket would ruin all but Donald Trump or Oprah. I was just wondering if you have checked out any of the programs offering financial assistance to Cancer Patients. Here are a couple links.
https://www.pparx.org/SelectMedication.php - https://www.pparx.org/SelectMedication.php Partnership for Prescription Assistance.
http://www.cancer.gov/cancertopics/factsheet/support/financial-assistance - http://www.cancer.gov/cancertopics/factsheet/support/financial-assistance NCI Fianancial Assistance and other Resources for People with Cancer
I have insurance but as a single grad student even my co-pays and deductibles have become a hardship so I'll be looking at some of these things myself. Before going back to school I did medical billing for 15 years. One thing I would suggest to you is trying to negotiate with your doctors. My onc charged $7,000. for each Neulasta shot. My insurance co. - Aetna Chickering paid them $2500 for each - the rest was written off because that is the negotiated fee. If I were uninsured I'd have been expected to pay the $7,000. One of the dirtly little secrets of US health care is that the uninsured subsidize the insurance companies. You could ask your docs if they will accept from you the amount of their lowest negotiated insurance company reimbursement for each service. - it's worth a try.
Hi Ruth and others getting their Neulasta the day after,
I mentioned this before but I received my Neulasta shots immediately after chemo. I mentioned to my onc that a lot of you guys have to go back the next day. He said it has to do with the way the FDA wrote up the specs for the drug but there's no medical reason to wait so if you don't like going back or worse injecting it yourself I suggest you ask if you can have it right away. As for me the A/C made me so sick I wouldn't have been able to go back the next day.
Darla
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Posted By: KIM39
Date Posted: Oct 14 2007 at 3:40pm
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Wow, You have my sympathy!! Some of us complain of bad insurance and forget about those with no insurance at all. Hang in there you are in my prayers. Ill be checking back here for updates. By the way Im 39 yrs old this is my 2nd breast cancer, its in both breast and its triple neg. Bummer  |
Posted By: KIM39
Date Posted: Oct 14 2007 at 3:48pm
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P.S. can you guys tell me how offten you see your oncologist. I only see her nurse at treatment. My oncolkogist has only seen me 2x and Ive been in her care 14 weeks. Now she gave me my next appointment and its not untill the end of December after my last 2 cycles of chemo AND after surgery. |
Posted By: paula
Date Posted: Oct 14 2007 at 6:29pm
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I saw my oncologist every 3 months for the 1st year. He then had his consulting doctor take over my file. I see her every 6 months. After 5 years they'll send me back to my GP.
I'm really surprised that the oncologist doesn't see you. You should request an appointment with him at your next visit. |
Posted By: poookyquilting
Date Posted: Oct 14 2007 at 7:24pm
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hI English Jan,
My name is Jan too and I also am triple negative. I am going for my second treatment Friday Oct. 19th. I also have to take adriamycin, cytoxan and taxotere and ten shots of Neuopigen. I have two vials left over since I wwas in the hospital over the weekend and they gave me two of the shots there. I'm wondering since you don't have insurance if you need more shots of the neupogen, could you have my extra vials. I'll get another ten vials this Friday so I a won't use two of them. Don't know if that is allowed but seems like a waste since it is so expensive and my insurance paid for mine. |
Posted By: kirby
Date Posted: Oct 14 2007 at 11:38pm
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I am new to this forum and having a bit of trouble navigating. I was dx 7 years ago. Feb. of 2001. Things were done differently then. They were not calling this "triple negative". I hadn't even heard that term until last year when a customer was dx with it. She was quite freaked out. Her onc had told her that this wasn't a particularly good type to have. I had always prided myself in keeping up with new cancer info and to having come to terms with my cancer. In reading the Oprah article and finally finding this web-site my resolve with cancer fails me at times. It is too late to change things but I would like to feel a bit more peace. I had lumpectomy for a 2 cm tumor, no node involvement [13 removed, they were just starting snb]. That was considered stage 1, grade 3. I had 4 rounds of AC, 3 weeks apart, then 30 days rad.
My concern is that it seems that most are now given 4 rnds of AC, then 4 rnds of Taxol for pretty much the same tumor size etc. and doing dose dense. I have questioned the onc and surgeon but they act like I shouldn't have a concern seeings that I have been cancer free for 7 years. Although they have both been doing follow up appts. 2x a year.I knew most people only had that kind of follow up for the first 5 years. I just had an appt. last month and will now be checked once a year by both onc and surgeon.
I realize so many of you are just now going thru treatment or having reoccurances that this may sound trite. I would just like to be aware but also feel a bit more ease. I was 45 at dx, a single parent of 9 and 13 year old daughters. Not an easy time. Thank goodness, the kids are older now. Are there others out there that were dx quite some time ago without having reoccurances?
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Posted By: Darla
Date Posted: Oct 15 2007 at 2:41am
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Hi Kim39, When I was getting A/C I saw either my onc or nurse practitioner each time I went in (every 2 weeks). With the Taxol I see one or the other every 3 weeks. Hi Kirby, Your concerns are not trite. Fear of recurrence is very stressful. There is some encouraging news for Triple Negs. It seems that while our chance of recurrence is higher within the first few years it does drop off after 5 years. I'm sorry I don't know the numbers - if you watch the clip from the Mike and Juliett show the oncologist mentions it there - under TNBC in the news on this site. Also, my oldest sister had BC 13 years ago - she was estrogen negative - had chemo and rad and has been cancer free ever since. Darla |
Posted By: kirby
Date Posted: Oct 15 2007 at 6:51pm
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Darla,
Thanks for the response. It is nice to know that your sisters cancer was 13 years ago. I'll try finding that news clip. It is only in the last 2 weeks that I even knew that TN was less than 15%. I always lumped myself in the 30% that were not hormone +. Also I am stunned by the numbers of those that are genetic positive. My mother had ovarian, so I was tested but came out -. Hopefull others out here have better prognosis as well.
Kirby
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Posted By: trip2
Date Posted: Oct 23 2007 at 6:57am
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Kirby I too was first dx in 2001 but knew nothing about breast cancer. I wasn't told I was triple neg, I figured it out myself 3 yrs later, ask the Onc and was told yes. Some of these Oncs tend not to say anymore than they have to or maybe they figure you don't want to know. That seems to be changing as women get more informed and take charge, ask questions and take part in their treatment plan.
Darla, kudos to your sister being cancer free for 13 yrs.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: kirby
Date Posted: Oct 25 2007 at 6:07pm
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Kim39, In response to your question about how often one sees their oncologist. I saw mine every time I had treatment except once, he was out for something. i didn't like the replacement and insisted I would never see her again. Once treatment was over, I think I went every 3 months for the first year or 2, and I have been still going 2x a year to the surgeon and oncologist with them seeing me each time. I just saw the surgeon in Sept. and will now start seeing him only once a year. I go to the onc in Dec. I'll see if he changes. My guess is he will do whatever makes me comfortable.
Kirby
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Posted By: erinbarron
Date Posted: Oct 25 2007 at 6:52pm
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I am a new here. I had breast cancer at 29, this past July I found out it has come back ( I'm 34 now, I was a couple months shy of the 5 year mark) It was 1.5 cm with the nodes in the chest positive, so I had a mastectomy and I'm having chemo for the nodes. I can't have radiation because I did it last time. I have heard that once you feel the tumor it's been there for years, mine couldn't have been there for that many years because it was very close to the first tumor and would have been taken care of with the chemo/radiation/lumpectomy. But, I felt this lump in July, and it didn't show up on the mammogram but did on the ultrasound. I wonder if I had it the year before when I had my yearly mammogram and it just didnt' show up.
I'm on carboplatin/taxol now, I go Monday for my 3rd treatment of 6. I am excited to be done with this, I have found this much more mentally hard this time.
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Posted By: English Jan
Date Posted: Oct 26 2007 at 1:39pm
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Hi Pookiequilting, Thank you for the offer ...
Well my ONC's fantastic staff got the last 3 cycles of my chemo and even 3 shots of Neulasta (the new Neupogen) for free, the drug companies paid for them.
I paid the 1st treatment cycle and I'm delighted they are paying the other 3!!
I am on Cytoxan and Taxotere plus Neulasta.
I am paying for any antibiotics and pain meds.
So are you a quilter? I am trying to start a quilt but having a problem working out how to cut the material ie I need 40 .. 2" x 16" ...
Do you have any ideas?
Many thanks
English Jan
------------- FL. 58yrs DX LIDC 8/18/07. 08/23/07 Lump+SNB Node -ve. T2.5cms clear margins, TNBC, Stage 2A Grade 3. 9/18/07 TX Cytoxan+Taxotere.Neulasta.4x3 wks.Rads 30+5 FINISHED 28th Jan 2008. |
Posted By: trip2
Date Posted: Oct 29 2007 at 8:42am
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Welcome erinbarron, bless your heart, too young for bc. We're glad you're here though and so sorry that the nasty bc has come back. Mine came back this year too and I found it harder to deal with this time like you.
That's wonderful that you are halfway thru your chemo!
I can't blame you one bit for wanting to get this over with.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Tamara444
Date Posted: Oct 29 2007 at 3:59pm
There is also a wonderful program called the Patient Advocate CoPay Relief Foundation where they will reimburse you for copays you pay for medicines associated with your disease. It has been a Godsend for me, as I have been fighting as a triple negative since 2004. Have had a recurrence, and have been on many medicines including Neupogen, Neulasta, Zofran, Decadron, and other meds used while being on chemotherapy. Please look into the foundation, it is a great thing!!! 
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Posted By: patricia
Date Posted: Oct 30 2007 at 3:32am
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Jan,
I'm so sorry you don't have insurance. This is hard enough to deal with when you do have insurance, I don't even want to think about not. Sometimes in our small town, we have benefits for people who need help with cancer treatments. A friend or relitive will team up with a fire department or lodge and put on a supper or music event. Hang in there, I hope all goes well. I started treatments in Nov. 06 and finished in June 07 so I know how expensive treatments are but I was blessed to have good insurance.
Let us know how your doing.
Patricia
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Posted By: trip2
Date Posted: Oct 30 2007 at 7:27am
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Hi Tamara, I just wanted to wish you a warm welcome to our board.
Fighting this since 2004 is a long time and I'm so sorry you've had a recurrence.
Best wishes for smooth treatments and wow that is great info on getting financial help, thanks for posting. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: English Jan
Date Posted: Oct 30 2007 at 10:31am
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Hi Patricia,
Thank you for your kind words and encouragement.
I have negotiated with the Surgeon, Onc Docs and the chemo drugs ( I paid full price for the 1st round and got the 2,3,4th rounds free -the drug company paid, I had to show tax returns.)
I also now get Neulasta for free.
I was supposed to have chemo today 3rd one (of 4) but I have this reddness in my left breast, I have seen the Breast surgeon twice, but today they wouldn't give chemo until she said okay again...so back to the next town and she fit me in .
So now I'm on 2 lots of antibiotics, in case it's infection which she does not think it is,. She thinks its chemo irritation to the breast tissue that's healing.
So chemo off until Thursday, so I have 2 days on board of 2 antibiotics.
No temp!
Glad you are doing well. Hope all the ladies are well on the board and Hi Nancy.
English Jan
------------- FL. 58yrs DX LIDC 8/18/07. 08/23/07 Lump+SNB Node -ve. T2.5cms clear margins, TNBC, Stage 2A Grade 3. 9/18/07 TX Cytoxan+Taxotere.Neulasta.4x3 wks.Rads 30+5 FINISHED 28th Jan 2008. |
Posted By: poookyquilting
Date Posted: Oct 30 2007 at 8:19pm
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i HAVE INSURANCE AND WILL HAVE TWO EXTRA VIALS OF NEUPOGEN LEFT...RIGHT NOW. CAN OR IS THERE SOMEONE I CAN DOANTE THEM TO? i HATE THROWING THEM AWAY WHEN THEY COST SO MUCH. ANYONE WITH ANY INFORMATION, PLEASE LET ME KNOW.
JAN IN MICHIGAN. |
Posted By: trip2
Date Posted: Oct 31 2007 at 6:17am
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English Jan it is just great to see that those who need help hopefully can find it, I'm so happy for you.
I sure hope the antibiotics get rid of the redness so that you can get on with your chemo. Sounds like you are close to being done?
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: tckaren
Date Posted: Nov 03 2007 at 1:42pm
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I'm not an expert but heres what I have learned.
Triple Negative means your tumor tested negative for Estrogen, Progestron, and is HER 2neg.
30% of breast cancer is "Triple Negative".
Practically what this means is your tumor may be a bit more difficult to treat since it will not respond to the new drugs that target hormones.
I too am triple negative & am undergoing weekly treatments of Taxol & Avastin. This is my 3'rd reoccurence & I have already had Cytoxen & Adriamycin back in 2004.
I am feeling pretty good despite losing my hair again!
Best wishes, hope this helped.
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Posted By: Galina2
Date Posted: Nov 05 2007 at 8:03pm
| Hello, Darla and anybody out there. You are talking of recurrance: anybody had a pain during cancer growth? I was in horrible pain when the cancer grew from beginning of July until surgery at the end of August and that's how I discovered my lump. When they removed the lump the pain was gone. Even before the surgery, I had a pain what I would call under clavical; now the pain is getting worse. I hope I will get to my oncologist within the next two weeks, but I am freaking out the cancer is spreading into lymph nodes in there. Anybody has similar experiences? Tx |
Posted By: Darla
Date Posted: Nov 06 2007 at 2:10am
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Hi Galina, I am so sorry that you are having this pain and I don't blame you for freaking out. Is there any way you can see your oncologist sooner if you call him and let him know you are in a lot of pain? Darla |
Posted By: poookyquilting
Date Posted: Nov 06 2007 at 2:34am
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Hi Galina,
I too had severe pain one day though. I went to the ER and they gave me morphone and kept me for two days. It was from the Neupogen and Taxotere. If you have insurance, please don't try tolerating the pain it is more than our bodies can handle. they can give you something to relieve it right away. BUT take your anti nausea meds with you because by the time they got around to giving mine I was several hours late and threw up for what seems like two hours. good luck to you and God hold you and keep you in His care. Jan in Michigan |
Posted By: shellieh51
Date Posted: Nov 07 2007 at 2:20am
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Who is pookiequilting? I too quilt - or attempt to do so. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: jabutler172
Date Posted: Nov 07 2007 at 5:06am
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I am new to this site. I was also told I am triple negative. I am 56 years old white female. I do not fit the 15% they say are triple negative. But here I am anyway.
I have completed 4 AC and 4 Taxotere of chemo on 8/30/07. The chemo shrunk my orginal size tumor of 5 cm to 1/8 of a inch. Followed by a lumpectomy and then a re-excerison for clear margins. I am now on my 6th out of 33 radiation treatments. I will not be using any hormone drugs. After radiation I have completed my treatments.
My oncologist says they are testing new chemo drugs for this type of cancer. So if I have a recurrence (he says 20% chance) the new drug will probley be available. They says the recurrence for this type of cancer usually happens within 2 to 3 years.
So I am on the every 3 month schedule fo seeing my surgeon and oncologist for a year.
My radiation will be completed on Dec. 13th.
Joyce
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Posted By: poookyquilting
Date Posted: Nov 07 2007 at 5:47am
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HI JOYCE....MY TUMOR WAS 5.2 CM BUT I HAD ONE POSITIVE LYMPH NODE SO I HAD MASTECTOMY AND 10 LYMPH NODES REMOVED. I AM ON MY 3RD TREATMENT FRIDAY AND WILL BE AT MY HALFWAY POINT FOR CHEMO TXS. I WILL START RADIATION IN FEBRUARY...SIX WEEKS. DID YOU HAVE ANY CANCER IN YOUR LYMPHNODES?
JAN IN MICHIGAN |
Posted By: trip2
Date Posted: Nov 07 2007 at 6:10am
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Hi Joyce and a warm welcome to you.
Whoopsie, hit the button too soon!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Nov 07 2007 at 6:14am
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Hi Joyce and a warm welcome to you.
It's good to hear you've completed your chemo and soon you'll be thru with your radiation. Hope you are doing well.
That is just wonderful that the chemo shrunk your original tumor.
Congratulations!
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: poookyquilting
Date Posted: Nov 07 2007 at 7:59am
| i'M JAN FROM MICHIGAN. HAVEN'T DONE ANY QUILTING IN FIVE OR FOUR YEARS. AND REALLY NOT FEELING UP TO IT NOW. LOL MY QUILTS ARE APPLIQUED. I'VE DONE VICTORIAN WOMEN FOR MY OLDEST GRANDDAUGHTER, DINOSAURS AND BEARS AND FISH AND CARS FOR MY FIVE GRANDSONS. |
Posted By: jabutler172
Date Posted: Nov 08 2007 at 5:43am
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Hi Jan,
I am in Michigan too. No my lymph nodes were clear.
Joyce
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Posted By: poookyquilting
Date Posted: Nov 08 2007 at 6:26am
| JOYCE WHAT PART OF MICHIGAN ARE YOU IN? I'M IN THE DOWNRIVER AREA |
Posted By: jabutler172
Date Posted: Nov 08 2007 at 7:56am
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Jan, Not that far away, St. Clair Shores
Joyce
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Posted By: jabutler172
Date Posted: Nov 08 2007 at 8:01am
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Jan,
Not that far away St. Clair Shores
Joyce
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Posted By: lorraine
Date Posted: Nov 08 2007 at 9:40am
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Dear Ruth,
I am new to this website. I am a 72 yr old white woman who was dx
with triple negative breast cancer. Today I had a port surgically put
in for the preparation of chemo. My surgery was 10/11/07.
There is so many questions about treatment now which gives me much
concern. It seems that the medical oncology people are now having
second thoughts about "one size fits all" type treatment. They are
discussing different treatment possiblities with the patients. ( How can
we make these decisions?)
Firstly, did you feel very sick after the treatment? Have you had any
bad side effects..(heart, etc)? When did your hair go..(after how many
treatments?)
Reoccurrences is a big issue. Does age enter into the statistics?
I should be starting treatment end of next week.
Any information would be greatly appreciated. (from anyone as well)
Thank you.
Lorraine
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Posted By: Galina2
Date Posted: Nov 08 2007 at 11:21am
| HI, Lorraine, did you have a lumpectomy? I am surprised you already have port and have a date for your chemo! I had a double mastectomy and oncologist still not in sight! You are LUCKY! The age is great of advantage for you! What I have read so far woman after menopause have much better prognosis. Galina2 |
Posted By: peach
Date Posted: Nov 08 2007 at 1:00pm
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Welcome Lorraine, I don't know the answer to all your questions but I will answer the ones I do. When it came to treatment decisions I was basically told I would have AC dose dense and then Taxol dose dense (which is every 2 weeks) Some people get the same combination every three weeks. And since I had lumpectomy I am having radiation. I did get nauseated after each treatment but it was doable with all the medication they can give you. I lost my hair after my 2nd treatment 14 days went ahead and shaved it since it was coming out in handfuls.
Good luck with your treatments and know you can come here and get good advice.
Pat
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Posted By: jabutler172
Date Posted: Nov 09 2007 at 2:55am
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Lorraine,
I had chemo 4 AC and 4 taxotere. With the nausea meds they put in your IV and the Emend you should not have nausea, if so very slight. Make to ask for Emend it does wonders you take it for 3 days.
Joyce
DX 4/03/07
Chemo 4 AC 4 Taxotere Competeted 8/30/07
Lumpectomy 10/01/07
Re-excerison 10/11/07 clear margins
Radiation will be completed 12/13/07
Triple Negative
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Posted By: patricia
Date Posted: Nov 09 2007 at 5:38am
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Hi Lorraine,
I am a 57 yr old white female. I had a lumpectomy in Oct. 06. My kemo started the 1st week in Nov. 06. They gave me 4 of AC and 13 taxol. I lost my hair 2 days after the 2nd treatment. I had my hairdresser measure me for a wig and I ordered one from the catolog they have me from the ACS. I didn't feel good but I could usually keep something down. I found pasta, potatoes and bread was my best bet. The girls in the kemo room were great and kept adding premeds. They got it right about the last treatment. The taxol was much better but I was very tired. Of course I still worked since I prepare income taxes and most of my treatments were during our busy season. They let me have my kemo at lunch time on Fridays and then I just came home until Monday. Radiation did not make feel sick, only tired. I got one sore spot. Good luck to you and keep in touch.
Patricia
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Posted By: Galina2
Date Posted: Nov 09 2007 at 4:31pm
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Hello, Kirby,
I hear for the first time I will be seeing my surgeon again! Why is that? Will he be checking for recurrences? How? Why? How often? Tx Galina
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Posted By: Galina2
Date Posted: Nov 09 2007 at 5:02pm
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Helo, Jan in Michigan,
you story is exactly like mine! Since needle biopsy showed no cancer(!) I had lumpectony, which was dx as Triple Neg. They did not do nodes, so I have opted for mastectomy and nodes. How long did it take you to get to chemo after both lumpectomy and mastectomy? Tx Galina
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Posted By: Galina2
Date Posted: Nov 09 2007 at 5:14pm
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Hello Erinbarron,
too bad you have to go through this again. Did you have double mastectomy? How did they find the positive nodes in the chest? I hope you will do fine with this treatment! Galina
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Posted By: dixiegal
Date Posted: Nov 10 2007 at 5:17am
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Joyce, I am just catching up on postings and saw your note. My situation is very similar to yours! Am 55 yr old while female, was diagnosed on 3/8/07 with 2 cm invasive ductal cancer in left breast. I had lumpectomy on 4/10/07 and completed chemo (8 sessions: 4 A/C and 4 Taxol) on 8/30/07.
This Friday (11/16/07) I will have completed 33 treatments of radiation. Following new bone and CAT scans on 11/19 and a final consult with my onc on 11/26, I will have completed all scheduled treatment/appts for this bc in 2007. Don't know what the ongoing schdule will be for followup appointments, but I am anxious to resume my fitness program begun prior to diagnosis and regain energy for continuing a healthy life...knowing that recurrance is always a possibility but fears of same CANNOT rule my life...
This triple negative status is a concern but I am very optimistic about new treatments and drugs... good luck on your personal journey.. Dixie
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Posted By: Cheranthia
Date Posted: Nov 10 2007 at 9:31am
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Hello everyone, I am 49 years old and was diagnosed with stage IIa BC (4 cm, node negative, grade 3, triple negative) in April. I just finished neo-adjuvant chemo (4 AC + 4 Taxotere) in October and had a lumpectomy four days ago. I am still waiting on the pathology to find out whether or not they got clear margins before starting on the next phase of treatment- radiation. I wanted to share my experience with my triple negative sisters because I think we need to hear more good news. With all the bad stats we hear, you've probably also heard that one thing in our favor is that we tend to respond well to chemo. In my case, even though the tumor was large to start with, the chemo shrank it to the point where it couldn’t be seen on the mammo or ultrasound! My surgeon was extremely pleased that my oncologist had had a clip placed to mark the location of the tumor prior to chemo. When I expressed my concerns about recurrence to my oncologist, he said that the tumor’s great response to the chemo made for a much better prognosis. Of course, I still worry, but his confidence makes me feel better. Maybe it will give you hope, too. Meanwhile please keep fingers crossed for clear margins and not too much of a rough ride through rads. Cheranthia |
Posted By: kirby
Date Posted: Nov 10 2007 at 10:37pm
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Galina2, I just read your questions. I hadn't been on the computer for a couple days. I am unable to answer any of your questions however. First, I don't know enough background to even venture an answer and 2nd, there can be so many variables it is best to hear what your surgeon has to say. I always try not to flip until I know what exactly I need to flip over. Otherwise it is needless worry. I realize that advice is easier said than done, even for myself, in some cases. How long is your wait for the appt. with the surgeon? I would call the surgeon, if the wait is long and leave a message that the anxiety of the wait is difficult and if he could just give you some information to make the wait for appt. more bearable.
Keep us posted. My thoughts are with you, Kirby
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Posted By: lorraine
Date Posted: Nov 14 2007 at 8:52am
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Dear Patricia,
I cant believe that you are able to work while taking treatment.
That gives me hope!!
Tomorrow I start the kemo. Scared to death over it. My protocol
is the same as yours. The Ac four times...two weeks apart and
following each treatment neulasta. Then 9 weeks of taxol.
I have osteoporosis and so I will have Boniva next week through the port.
Did you have a port put in?
My oncologist is a very distant man and not in any way comforting.
You would have expected that in this field of medicine he would
have more compassion. I have heard this from other patients as
well. Maybe people skills cant be learned. It has to be inside of you.
My best wishes are there for all of you.
Thanks to you,Joyce,Galina & Pat for answering.
Lorraine
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Posted By: patricia
Date Posted: Nov 14 2007 at 10:58am
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Lorainne,
Please let us know how you make out. I'm sorry your doctor in distant. Mine was good but the girls at the kemo center were wonderful. I've heard this from all the kemo centers around here. I had my AC on Wed. and went back to work on Monday. So I missed Wed - Fri every other week. Don't be afraid to ask for more premeds. Good luck. Let us know what's going on.
Patricia
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Posted By: dixiegal
Date Posted: Nov 15 2007 at 5:10am
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Lorraine -- welcome....do not be afraid of the chemo therapy. I had exactly the treatment plan you are starting; mine started in May and finished up by this past September. We are so lucky to have drugs that really hit the cancer cells hard, esp the triple negative ones!! The latter are very susceptible to A/C and the Taxol. If we are going to do battle, why not use the biggest 'guns' available!! This is war. Except for the day of treatment and day after (ie, Thurs-Fri) I also worked fulltime thruout my treatments. It is doable. Make certain to ask for whatever anti-nausea medications you need, however. I had a tough first session -- then was given 1st and 2nd tier anti-nausea drugs to help me out. I never had a bout of nausea thereafter. Do not be a hero -- ask for whatever drug help you need to get thru this. Take things a day at a time. Give yourself permission to rest more...eat what sounds good. Drink LOTS of water above all else. I have my final radiation treatment tomorrow (#33)...my hair is coming back now (about an inch long at present) and I am very grateful for the treatments....I will have final onc consult after Thanksgiving plus final CAT and bone scans on 11/19...good luck to everyone out there... Dixie |
Posted By: dixiegal
Date Posted: Nov 15 2007 at 5:12am
| Lorraine -- I forgot to mention that I DID have a port inserted to help with blood draws and the IV chemo treatments. It is a wondeful invention -- almost painless, too -- much better than being poked in the hand or arm every two weeks!!! By all means get the port!! Good luck today with first chemo! Dixie |
Posted By: lorraine
Date Posted: Nov 15 2007 at 11:16pm
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Dear Patricia
Thanks for your response.
My treatment was done today (first time) I was nervous about it but
it was OK. I was grateful for that.
I have a headache and some minor reactions...no nausea yet.
My treatment will be AC for four sessions, followed each time by
the neulasta, two weeks apart. I follow that with taxol 9x each week.
Then radiation. Its a long haul.
What really gets me is that although my oncologist has good
credintials, I am not happy with him. He is a very distant type
person, hardly meets your eyes when he speaks to you and is in
no way encouraging or assuring. I want to hear honest information,
but there are ways to explain things by saying a cup is half full or
half empty. He has not developed "people skills". My husband keeps
telling me not to dwell on that but I find that hard to do. I was told
for the third time that the triple negative tumor doesnt have a very
good prognosis. (I assume compared to the others) My tumor was
1.3 and in stage one. Not happy to hear him say that.
This is a battle, as they say.
Thanks to Joyce,Galina & Pat for answering me as well.
I wish all of you the best. Any information is welcome
Lorraine
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Posted By: trip2
Date Posted: Nov 16 2007 at 4:31am
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Patricia I thought my first Onc was "Dr. Frosty" and he seemed to resent my hubby asking questions, it was strange. But we got thru it. Then he retired and the next Onc I felt was cold and probably overworked and I didn't think much of him either. This was the only place within decent driving distance that I could get treatments but I came very close to finding another clinic. After time he seemed to warm up and will actually sit down, look at me and listen to and answer my questions. Neither one would offer extra info so I've always had to ask these other questions that we read about or hear from other breast cancer patients.
Never was I told about triple negative, I learned on my own and asked about prognosis and keep pestering him for anything new.
I would think being a cancer doc would be very challenging. You're having patients come in with all kinds of problems and you know you will loose some of them, maybe that is one of the reasons some of these docs prefer to stay distant but will care for you and try their best.
Women do change Onc's so don't put up with things that greatly disturb you. I know you've just begun your treatment, I sure hope your Onc comes around to make you more comfortable.
Best wishes, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CherylA
Date Posted: Nov 16 2007 at 5:44pm
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Good evening ladies. I just learned of this site today while doing a Google search on TNBC. I was diagnosed with this Feb 06 (stage 1, grade 3), had a mastectomy and did A/C for 8 treatments and then 33 sessions of radiation. I thought that this was totally behind me. Yesterday - not even 2 full years later, my oncologist told me that my CT scan shows nodules on my liver, lungs and behind my sterum. I am a 40 year old black woman. I was told that I was triple negative in 06 and did not know what it meant. I actually thought that it was a good thing. The fact that it doesn't feed on hormones is good, right??? After reading the Redbook article I got worried. I have been complaining of pain in my chest for months now (and told it was costochondritis brought on after my surgery), only to read that a woman in the article had been complaining of the same thing - only to later learn that her cancer had returned and spread to her lungs, liver and chest wall too. I made it through the 1st diagnosis pretty well but don't know if I can do this again - or put my kids through this again. I am glad to find this site. Thanks for letting me ramble. |
Posted By: trip2
Date Posted: Nov 17 2007 at 7:14am
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Hi Cheryl and a very warm welcome to you.
I am so very sorry to hear after all you've been thru that they are seeing some nodules on your CT scan. When will you be discussing this with your Onc so that you can find out what is going on or do you know what they want to do? Could the nodules be something innocent??
Triple negative is a good thing in the respect that it responds so well to chemotherapy and there are some new good ones coming out, the platinums which may do even better.
I haven't had mets but have had bc twice, it is very numbing to hear it is back.
Maybe after you talk with your Onc and see what they have in mind you can make your decisions from there. Not having mets I am not a good one on advice here but personally if mine comes back again I would go with all the big guns I could find.
Let us know as you learn more about your situation and please vent anytime,  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CherylA
Date Posted: Nov 17 2007 at 7:31am
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Pam, Thanks for the welcome. I have a liver biopsy on Tuesday but my Oncologist seems pretty sure already that it is cancer. My tumor cell count (seen in my blood tests) has steadily been going up since March and she even said that if the biopsy says that it is not cancer, she is not sure that she will fully believe it. I will check back in after the holidays once I get the results. Again, thanks. It is good to know that you all are here. Cheryl |
Posted By: trip2
Date Posted: Nov 17 2007 at 7:57am
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Cheryl yes do check in with us after the holidays and let us know about your results on your liver biopsy.
The strangest thing happened to me earlier this year while going thru bc treatments. My CT showed 3 lesions on my liver, I went back for a biopsy and they couldn't find them! They said they just knew they were there and they don't go away. It was a very scary time for me and I'm more baffled than ever since nothing else was ever done. Did they give me the wrong test results? They said no. So the thought is in my head, are they there or not?
I wish you the very best of luck and hope this all turns out to be nothing.
You have a wonderful Thanksgiving. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: shellieh51
Date Posted: Nov 17 2007 at 9:32am
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Where can I find the tumor cell count on my blood work? Just curious since I have every blood report since this ordeal started. I am now on 3 month maintenance with my onc.
Take care. ------------- dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 - |
Posted By: poookyquilting
Date Posted: Nov 17 2007 at 10:33am
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CherylA,
I'm so sorry to hear that you have had a recurrence. I was diagnosed June 2007 and am currently going through chemo...A/C and Taxotere for six treatments and in February will start six weeks of radiation. I also had a mastectomy and ten nodes removed from under arm but only one was positive for cancer. I'm stage IIIA as my tumor was 5.3 cm by the time I had the surgery. And it is grade 3 triple negative. I hate to hear of anyone having this type of cancer. It is scarey. I pray that whatever treatment you decide on you are cured completely and quickly. You are in my prayers. Oh I'm 56 year old, grandmother of eight, mother of two daughters. Love spending time with my granchildren,. Especially twins. I have a set of 13 year old boy twins and my daughter (their mom) just gave birth six months ago to twin girls. THAT is SO NEAT. They are all fraternal but the girls look identical and have the most beautiful hair. The four are biracial and my daughter had very curly red hair and now the twin girls have curly (big curls) brown hair and their brothers just adore them. That is what keeps me from crying all the time about this triple negative thing. You hang in there Cheryl. You are in my prayers. jan from Michigan |
Posted By: CherylA
Date Posted: Nov 17 2007 at 11:34am
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Shellieh- To be honest with you, I didn't even know that tumor cell count was something that I was having checked until a few months ago. It turns out that when I was going in for my routine check-ups with my oncologist and they were drawing blood, they were checking this count. They also refer to is as "tumor markers". They watch this count to see if it stays the same, goes up, or goes down. I've been told that sometimes the count can increase with stress levels or during different times of the year. But after the change, it should go back to whatever your "normal " level is. The problem with me is that mine keeps going up and up. If they had not been checking this, I would have no idea about my nodules. This count is what led them to suggest my CT scan. I have no symptoms and had no pain - other than in my chest and I thought that was due to the mastectomy. Ask your Onc. about tumor markers when you go back. Cheryl |
Posted By: CherylA
Date Posted: Nov 17 2007 at 11:37am
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Jan, Thanks so much. I will be praying for you as well. Again, I am so glad that I found ALL OF YOU!!! Cheryl |
Posted By: kirby
Date Posted: Nov 17 2007 at 3:37pm
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Cheryl,
I am so sorry to hear about your reccurance. I know it must be difficult to think about going through this again, especially if your children are young. I have never had tumor markers or a cell count done.. Since joining this forum last month I will have a long list of questions and discussion with my onc next month during my bi-annual check.
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Posted By: gayns
Date Posted: Nov 17 2007 at 11:53pm
| Hello, I'm 37 yrs old and from the UK. I have just found this site and am finding it very useful and positive. I was dx with trip neg in March this year. I had chemo first, followed by lumpectomy and 10 lymph nodes removed (all clear) and will finish my 6 weeks of radiotherapy on Dec 10th. I have been doing very well with my treatment and have been working all the way through except for 6 weeks after my op. The main problem I have at the moment is I fractured my elbow 2 weeks ago so can't drive to my daily radiotherapy appointments, luckily friends are helping out but I'm sure they'll get fed up with me soon. Have appointment in Dec to discuss follow up treatment, I feel fine all the time I'm not at hospital but as soon as I go for appointments all my fears and worries about reoccurence come back. |
Posted By: trip2
Date Posted: Nov 25 2007 at 10:57am
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The week before I go to my Oncologist I go in for a blood test draw and then we discuss it at the appointment. Evidently they work most of the time but this February I had just had mine checked, all was evidently ok and when I got my mammo I had another tumor so it makes me weary, sort of like those false positives we get sometimes on other tests. This was just a strange thing that happened to me, I don't know how often this really happens or why something didn't show up. I guess the main thing is to stay on top of what is going on with your body, be your best advocate and pay attention to your paperwork. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: chaya
Date Posted: Dec 17 2007 at 11:12am
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Dixiegal - thanks for the tip about drinking water for chemo - never read that before. Hi guys - ultimate newbie here. I've just been diagnosed and haven't even have my lumpectomy yet - just the biopsy. The tumor is small - .5cm - but it's grade 8 and triple-negative. They don't think it's spread to the lymph nodes yet. So far I've met the surgeon and radiation oncologist - I meet the oncologist this Thursday. I was told that a lot of oncologists aren't up on how to treat triple negative. So how do I know if I'm being given the right information when I meet with her on Thursday? Are there special pointed questions I can ask? It also seems like they have the wrong information about who gets this thing. Like some of you, I'm white and post-menopausal. Good to know I'm not the only weird one. Glad I found you - so much information and so little at the same time. |
Posted By: trip2
Date Posted: Dec 17 2007 at 12:08pm
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Hi Chaya and a warm welcome to you. I'm so sorry you have to go thru this but you have found a good place to be for support, questions, venting, crying whatever you would like.
Yes drink plenty of water and rest during treatments!!
When I was diagnosed this year I did some research online to see what
the newest meds were available so when I saw my Onc I felt like I could ask questions as to their plans and what they thought of what I had learned. This made me feel alot better to be armed with what was out there for triple negs and what seemed to be working.
Please do make a list of any questions you might have, take it with you, so that you can better understand your treatment plan.
I am also white and post-menopausal, there are several on this board.
Although it is more common in younger african americans and hispanics it also affects older white women. We are just a smaller percentage from what I can gather. Alot more attention seems to be put on triple negative cancer now and that's good thing!
Look around this board, you will find lots of valuable information and keep us posted on your doc visit,
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CarynRose
Date Posted: Dec 17 2007 at 2:07pm
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Chaya,
Welcome to the club no one wants to join. I am white, but I got my cancer at 42, pre-menopausal. I'm also BRCA1+ and 80% of us BRCA1's are also triple negative.
Are you familiar with the BRCA mutation? One in 40 Ashkenazi Jews have this mutation that increases your lifetime odds of getting breast cancer upto 87% and ovarian cancer up to 50%.
I wish you an easy surgery and no more cancer problems.
All the best,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: chaya
Date Posted: Dec 18 2007 at 7:19am
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Caryn -
Thanks. But you know a club no one wants to join is better than no club at all. What I've already read on this group will help me a lot when I see the oncologist on Thursday. Though what I want to do is not clear, at least I know what to ask. I am also Ashkenazi but haven't been tested for BRCA because there is no other breast cancer on either side of my family. Is this something I should do? Does knowing this make a difference in treatment? |
Posted By: ruth
Date Posted: Jan 15 2008 at 12:27pm
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Dear Lorainne,
We are twins, both being 72 years old. I finished my chemo on November 23rd. I did pretty well with it and carried on doing all I usually do. I had two trips to the emergency room with high fevers and lost most of my hair. At the moment my hair is coming in. On reflection. I did not realize that I felt bad during the chemo months. Now that I am my old self, I realize the aches and pains must have been caused by the chemo, but I still went and swum my quarter of a mile three times a week and did my exercises as usual, at a slower place. I was extremely lucky as a friend of mine with the same chemo treatment was quite sick and put on lots of weight. I lost a couple of pounds. The funny thing, my nails have taken on a new look. This started to happen, at least three weeks after I finished with the chemo. The whites are taking over. I hope you are as lucky as me. Good Luck.
Ruth
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Posted By: CarynRose
Date Posted: Jan 15 2008 at 2:33pm
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Chaya,
I'm sorry that it's been a while in answering your question. I didn't see it until now.
Regarding BRCA -- it is not uncommon for people to discover that they are BRCA positive without a known family history. For instance, BRCA can be passed to you from your father's side, but because it is less likely for men to get breast cancer (say, with a BRCA1+), it might appear that there is no breast cancer.
In my case, I got it from Dad. There were very few women in his family who survived the Holocaust and those who died in the war died young. Those who made it the US did not get breast cancer, though my aunt died of pancreatic cancer and her son has malignant melanoma. Each of these cancers has been noted to occur in BRCA+'s. But, no breast cancer. When we discussed it further, my dad remembered that his father's sister did have breast cancer at a young age and after a mastectomy, did well (until Treblinka).
In answer to your questions: Yes, knowing your BRCA status can affect your treatment. A positive status means that the chances of recurrence is higher and might encourage you to go more aggressive in your treatment. It would also give you a heads up to watch for ovarian cancer as BRCA means a higher occurance of that disease too.
It is also important to know so that you can inform other family members. After I was tested, so were several cousins. Half were BRCA+ and half weren't. Those who were could make decisions BEFORE they got cancer about possible prophylactic measures (such as surgeries or heightened surveillance).
I hope this helps you, but if you want more information, a great website is http://www.facingourrisk.org - www.facingourrisk.org . The organization is called FORCE -- Facing Our Risk of Cancer Empowered and you can find A LOT of information genetic cancers as well as get incredible support from those who post on the message boards. No question is silly or dumb.
Best wishes,
Caryn ------------- Orig dx 6/03 - St.2a, IDC gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
Posted By: Cookie
Date Posted: Feb 08 2008 at 7:11am
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ALL MI LADIES: I live in MI too, I am in Saint Clair Shores, just north of 11 Mile off of Jefferson. Where do all you MI ladies live? Also, who is your onc and why? I am still in AZ but need an onc in MI. I have been looking on-line at U of M doctors. Would like someone fabulous and knowledgable about 3- closer, if possible. It is so hard finding the right doctor. I really like the one here in AZ, he is very, very aggressive. Cookie |
Posted By: Cookie
Date Posted: Feb 10 2008 at 9:06am
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English Jan:
Just read your e-mail about not having any insurance and having to pay for your treatment yourself. You don't have to pay for your treatment. If you cannot afford it, contact the companies of the drugs you are receiving, they will give you the medication free of charge. You'll have to fill out a form, but it is no big thing. My elderly parents were living only on social security and I got them all of their medications free! All free! So, contact the companies and you too should be able to get medication free.
Cookie
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