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ruth 
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Joined: Sep 27 2007 Location: United States Status: Offline Points: 16 |
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 Topic: triple negativePosted: Sep 27 2007 at 5:56am |
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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.
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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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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lisab
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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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ruth
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Posted: Sep 29 2007 at 2:47am |
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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
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ruth
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Posted: Sep 29 2007 at 2:53am |
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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.
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ruth
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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.
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ruth
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Posted: Sep 29 2007 at 3:21am |
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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
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ruth
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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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English Jan
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Joined: Sep 23 2007 Location: United States Status: Offline Points: 97 |
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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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ruth
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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
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Darla
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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 Partnership for Prescription 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
Edited by Darla - Oct 13 2007 at 4:47am |
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KIM39
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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  |
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KIM39
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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. |
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paula
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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. |
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poookyquilting
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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. |
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kirby
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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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Darla
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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 |
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kirby
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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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trip2
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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.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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kirby
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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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