Triple Neg BlogSpot...
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I too am 3N and being treated in Nashville, TN. I am at Vanderbilt though and not St. Thomas. I love my oncologist. She is very upbeat and told me up front what my prognosis is. She treats only breast cancer and is very knowledgeable about it. Without the chemo and radiation, I have a 50% chance of recurrance (I am 45) with chemo and radiation my chances of recurrance drop to about 25%. She also STRONGLY suggested I be part of the Avastin trial. If I get the placebo, I won't be any worse off, if I do get the real thing, it could cut my chances of a recurrance even more. My cancer is very aggresive. I have had problems in the past and have been having mammos every 6 months for the past 5 years. I had 7 B9 biopsies before the positive one. Six months ago, the DCIS didn't even show up. So in 6 months, I went from no cancer showing up to having stage 2 grade 3 with 1 lymph node having cancer. When I found out I was 3N, I was so ignorant about breast cancer that I thought this was a good thing, after all, in everything else, negative is good.
I'm glad that I don't have to travel this road alone and I have found so much good information on 3N on this website. I start my chemo on May 19th (third date change) and even though I am not looking forward to it, I am ready to get it over with.
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Susan, Deb and Deb6 - thank you all so much. Every once in a while I get untethered and float away to the edges I shouldn't be near. Yes, both my BS and onc told me to stop researching. It's all old, and that I have to realize that there are many many triple n's that are living their lives and just not reporting on boards any longer. Thanks, my dear sisters, for grabbing my ropes and bringing me back down to reality. That's why I love you all.
Linda
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I hope chemo is gentle on you deb6563. Do you know what kind yet? Yes! You are lucky that someone kept doing those biopsies. Finding TN early is everything. I've did Avastin almost four years ago outside of a trial. I really surprised they are still playing around with trials and this drug.
Flalady
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I will be doing dd. A/C x 4 every 2 weeks followed by Taxol x 12 every week followed by 30 treatments of radiation. It is going to be very exhausting I know. For the A/C I have to go on Mondays for blood work, then on Tuesdays for chemo followed by Nulasta shots on Wednesday. It is an hour drive each way to the oncologist office. Then with Taxol, I will go one day for bloodwork then back the next day for the treatment.
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Deb6563 - that sounds exhausting - that's an awful lot of driving. Will someone be taking you the day of the treatment? They kept upping my Benadryl because I had an allergic reaction to the Taxotere, and boy I was glad my drive home was only 3 miles - don't think I could have made it much further.
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Deb, that's a lot of extra trips to the onc just to do your labs the day before ~ you should ask to have them done on your chemo day instead. You pbly will not be getting Neulasta since it can not be giving w/in 14 days of chemo ~ you will pbly get Neupogen instead... but that's usually given 3 days in a row, and not all insurance companies will allow you to take them home... so you might end up driving even more often. Definitely talk to your onc about doing labs on chemo day, tho. Hopefully your tx will go smoothly for you... take care of yourself!
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I was allergic to the Taxotere and I have a 3 hour drive to Nashville. Fortunately my husband and sons took turns driving me for my treatments. The Benadryl really makes my sleepy. The solu-medrol dose pack my Dr. prescribed was a life saver. Not only did it cut way down on the fever and rashes, it reduced the nausea and intestinal upset a great deal. I was really lucky, my white blood cells remained good throughout the treatment and I did not have to take any booster shots.
God Bless everyone Deb
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Vicki
Why insurance companies will not allow one to take the Neupogen home?
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Each carrier/policy has its own rules ~ my particular policy evidently will NOT allow me to take the shots at home, so I have to go to the office to get them, but I know other women who take them home. They are very $$$ so I assume it's so they know we actually GET the shots?
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Fortunately my blood counts stayed good. Which is great because I work around elementary school children. But, it also meant that I did not have to take the Neupogen. When I spoke to my doctor he made it sound like that medicine could be given after 24 hours if needed, but, not before. I have a relative in Michigan who is on medicare with a suppliment. Her insurance allowed her to take her medication at home. I don't know if it varies with insurance companies or with States. Last chemo today. It's not going to be a pleasant week. My ears are ringing, mouth taste bad, stomache cramping and I'm starting to run a fever. The worst will be behind me in a few days. The fatigue is setting in too. I did walk 5 miles yesterday. Of course, I huffed and puffed, and after the walk I took a two hour nap. But, I did it. The doctor seems to think that exercise helps with cancer recurrence prevention. He even said that there is some evidence that a healthy diet, lean muscle mass, and regular excercise are as effective as chemo. But, I wouldn't want to take any chances. But, it does make me feel good about the Taxotere vs the Taxol. Taxotere is bad enough.
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I have to go the day before for labs because I am doing my chemo at a satellite office and the bloodwork has to be sent to the main campus for processing and it takes 3-4 hours to get the results.
I am sure that my oncologist said that I would be getting nulasta the day after each A/C. I will have to find out for sure.
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Hi all the brave ladies... who are fighting this out....
I have a small query... if any one can help me out...
I m 56/ post-meno, was diagnosed with IDC 1.5 cm, 0/9 node negetive, margin free, triple negetive ..... this october 2008..
Opted for Modified Mastectomy Just finished my 6 shots of CEF Chemo.
my concerned in being triple negetive at stage 1 , and had MRM and Chemo.Is Radation required in my case...?
My Onco is saying its not required but still i m very much confused.... can any body help......
Thanks in Advance...
ashac
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Ashac - I am 62 post menopause and diagnosed 2/23/09 with 1.2 cm IDC right breast, no node involvement stage I, Grade III. Had lumpectomy and re-excision and have just begun my A/C +T last Thursday. Holding pretty steady today, Saturday, a bit of trouble with constipation last night and now loose bowels! Think I overdid it on the colace and ducolax! I know with a lumpectomy you must have the rads, but with a mastectomy, you don't. My BS told me lumpectomy plus rads equals mastectomy. Good luck to you and all good wishes for complete and total recovery to all of us!
Linda
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Deb 6563,
My oncologist is over an hour away from where I live, too. While I was getting chemo, I was able to go to a local hospital about 15 minutes away to get my Neulasta shots (the day after chemo) and also to do my 10-day follow-up bloodwork. I would just hand carry my doctor's orders. This saved me two trips for each infusion. It also saved me as many co-pays because the hospital functioned and billed like a lab. Maybe there is someplace closer to you that can do some of the more routine work for you, too. I'm not sure if this would work for you, but you could ask. Just a thought.
Cherie
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Hi Ladies,
I'm joining this club for moral support. I'm on my second go round with IDC, trip. neg within a year. I see a new oncologist in Boston on Thursday. I sure hope he has encouraging news for me in regards to chemo. I feel it didn't work for me the first time.
They told me lumpectomy, chemo, rads was just as good as mastectomy. Well, it wasn't. I know that may sound bitter. I'm just one of the unlucky ones to fall into the small percentages of failure.
I just don't like the idea of having more chemo without knowing if it's going to be of benefit or not. I've had enough failure with this whole cancer thing. I really need some good news, anybody got any to spare?
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Hi glostagirl-
How awful that you have to face this again - and so soon! I SO understand not wanting to do chemo again, but it is still the best weapon we have against TN. They just have to get the right one. You might want to listen to the Living Beyond Breast Cancer teleconference on TNBC. I found it encouraging. If nothing else, it may help you prepare for your meeting with the new onc. Here's a link:
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Glostagirl...Wishing you the best. I too am one of the unlucky ones that fall into the small percentage of failures.... but I will tell you I'm keeping the faith and I do believe that I will eventually overcome all this and I hope you will do the same.... stay strong and give it all you got...
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Glostagirl and Lemonpie - There but for the grace of God, go any of us triple neg's. I am so sorry that you both have to go through this. It is my complete and total fear as well. I guess that's the double whammy of not only having breast cancer, but getting the feared diagnose of triple neg as well. God, I wish they would do more for us with research. This is so frightening. Please know you are both in my prayers and hopes for great success this time around.
Linda
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Well ladies, I saw the new doctor Thursday and he is recommending Taxotere and Cytoxan X 4. He feels I have a second chance, as I had only a local recurrence with no node involvement and no apparent mets anywhere else. Let's hope he's right!
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This BLOG is terrific! ..
There was an interesting part about something in the urine being indicative of triple negative breast cancer,,,,WHY aren't we tested for it?
Does LYMPHATIC fluid (which often leaves the body of a survivor with lymphodema-- through the urinary tract) --sometimes cause a urinary infection?
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Deb6563,
Hope all is well, I know this is a little late in your treatment but just joined. Did the hour drive, chemo at main hospital, blood work 1 hr before, neulasta day after at satellite office (35 min drive). Hospital wanted me to drive there for chemo (got rides from family/friends). Did A/C and Taxol (finished Oct.08). Could have driven self when doing Taxol, not as tired. Still have numbness in fingers and bottom of feet from Taxol. Dr. prescribed before Taxol - took 5 dexamethasone/1 ranitidine 12 hours before and repeated six hours before with an additional 1 tablet of zyrtec (otc). One hour before treatment an additional tablet of zyrtec. Did not have allergic reaction, do not know if this helps.
Also mom died of breast cancer seventeen years ago after fighting for apx. three years, she was 56 at time of death. I do not know what kind of cancer mom had. She found a lump at Christmas time and waited until after holiday to get checked. Mom had a radical single mast and it was in 9/13 nodes. Sound's aggressive to me- can't help but wonder TN? Just to let you know-chemo has changed, my mom was very sick. Anti-nausea med's have improved dramatically.
Was offered study to do weekly chemo for six months vs every other. Kind of wish I had done it now. I heard it seems promising. Now in different study with three arms, and I believe third phase - taking bondronat daily, supposed to help deter from going into bones, heard it was having better results than expected.
I was told however that if it comes back they only treat to keep comfortable. I found that rather disturbing when told. Also slightly concerned about traveling to brain down the road. According to my Dr. with double mast and chemo chance of survival is good.
Bravo to all of us ladies/men who have gone through or are going through treatment. I try to keep a positive attitude that all will be well.
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Good luck to you glosta girl. Keep us posted.
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HI zoomom,
Welcome to the site. I start my treatment next week. I'm ready to get it started so that I can get it over with, but dreading it at the same time.
Is it my imagination or are there lots of people here with the name deb, debra, deborah. Maybe it is our name that causes us to have cancer.
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Could be,
We have such a common name. I guess we had to have some way to be different. I enjoy being unique but I could have lived without this one. Deb6563 you and I are even in the same region. We may have to try and meet for lunch sometime.
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that would be great Deb.
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Good morning all. I am new here and have recently posted on 3+ year survivor. You can see my whole story there, but here goes again. Obviously my story is quite the contrary to all of your stories and if I had done my homework it probably would of been a lot different but stupidity is bliss, however here I am and doing quite well. I am a 22 year survivor to TN breast cancer and I have my pathology report to prove it. At that time tamoxifin was the new drug and many of the girls that were in my support group were taking it. My surgeon said it was not for me and that was enough for me. My tumor was 1.6 idc node negative, clear margins and 22 years ago I had the lumpectomy followed by 5 weeks of radiation. Back then with clear margins and no nodes that was the standard treatment of the day. I was told I didn't even need to see an oncologist because I no longer had breast cancer. So life was great and off I went never looking back. Then 6 years ago another primary in the other breast. Okay I can do this...again this time tumor was 2 c. node negative, clear margins. idc a typical medulary. Being stuborn I was insistant that I do not do chemo and I didn't. Again maybe stupid but here I am going great now almost 6 years out. It wasn't until my 34 year old daughter was diagnosed that I got crazy and started coming to these boards and realized how serious this is. It was really nice being stupid. Well my daughter did have 4 AC but she did not have the taxol as it was never recomended just 5 years ago. She went to a comprehensive breast center with affiliations to Mass General in Boston, go figure???
Well moral to this nightmare is that she is 5 years just this May and almost 6 years for me. I guess there is no ryme nor reason for triple negative breast cancer. The two of us certainly were undertreated and now it's 22 years out for me and 5 years for by dd. I must say this has been a real trip and I hope this adds some hope to all of you. If I was to do it again I would most definately ask for the works, I guess I have been very blessed.
Forgot to mention both of us had bi-lateral massectomies. Daughter had tram flap.
MY PRAYER FOR ALL OF US, GOD BLESS
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Thanks for the story Noni,
Deb, next time I'm heading to the Nashville area I'll send you a message. Now that chemo is over it may be a few months.
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Just checking in. I start chemo tomorrow (Thurs 5/28). TC X 4. I got good news today, my brain and bone scans came back normal. Yeah!!!
I've joined the May Chemo thread and have been happy to see some of you there.
Good luck to all,
Gg
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Hope all is well with you both!! You are extremely lucky to have each other.
The eighteenth anniversary of my Moms death (April 18th-yes, I still miss her everyday and wish I could have talked to her about what I was going through) and the second anniversary of my diagnosis (I found my lump April 17th-with my moms intervention from above) is coming up. Weird story - while taking a shower the water hurt my nipple witch prompted me to check myself at that moment. I found a decent size lump high on my breast/chest wall - not at the nipple. My nipple never hurt again (except the phantom itch or twinge) - I think mom was twisting my nipple from above so that I would do a self exam - I had done one two months prior and found nothing.
Cherish every day with each other!! Love to all mother's and daughters
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zoomom1
Your story sounds like mine.
My mom died over 20 years ago of BC after a long fight with the monster. (Hers returned 3 or 4 times. We're not sure if one was another cancer.)
My husband and I were on our dream vacation....Europe. When on the trip I felt more and more exhuasted, not the normal vacation fatigue. One night, I dropped the soap in the shower, lend over and felt like my breast was about to rip off. I had to hold it as bent over, but not lump.
A few days later I was home, sitting in front of the TV, when I had a very sharp pain on the left side of my chest. I reached up, wherer the pain was, and felt a lump the size of a golf ball. Of course this was a Friday, but first thing Monday morning I calledmy PCP, and within hours was being examed. Her mom also passed away from BC, so like me, was and is, up on everything. (I even remind her to get her mammo!)
Going thru this nightmare would have been so much easier (really) if I had my mom here holding my hand. I thought, by losing my mom to BC, I knew or understood everything - not so - you've got to live it. I know our moms (my GM also as she died of BC) are in heaven praying for us.
Jean
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