Triple Negative-How are you doing?

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tupelo
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RE: Triple Negative-How are you doing? - Wednesday, August 06, 2008 2:46 AM
Thanks, Karen. I'm so glad you feel well after your first chemo... You'll be surprised at how fast it will all go by. I  look forward to you joining me on the other side!   Stay positive and drink lots of water!
 
Lisa, thanks for the welcome

Veggie
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RE: Triple Negative-How are you doing? - Wednesday, August 06, 2008 4:26 AM
Hello TN ladies!  I am so glad to find this thread.  A thread for triple negatives.  Sometimes I feel isolated being TN.  I will be getting my last chemo treatment tomorrow. (ACx4 Taxolx4.) 
I have been wondering what kind of blood tests, scans, etc I should be getting after my treatment is completed for follow-up, since there is no meds for us, yet.  Is this through the oncologist? 
This is weird.  I am happy that I am about to complete my chemo.  At the same time, I feel kinda worried. 

Rena
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RE: Triple Negative-How are you doing? - Wednesday, August 06, 2008 9:27 AM
Hi Veggie! Congratulations on finishing chemo! I think we all have had that sort of empty feeling when treatment ends--what now? People sometimes say that hormone-positive women are lucky because there's something else to treat them with. Personally, I'm glad that I did not have to take more medications after chemo. The evidence is showing that we TNs respond very well to chemo. As for follow-up tests, I won't bother telling you what my regimen was because I finished chemo in 1987, and things are done so differently now. Your oncologist will tell you what his/her approach is.

It's completely natural to feel worried. The first few years were the hardest, but then I began to relax more and really believe that I was going to be OK. And I was--and am.

Wishing you all the best,

Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

karey
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RE: Triple Negative-How are you doing? - Wednesday, August 06, 2008 9:51 AM
Hi Veggie,

I had the same chemo treatment as you. I finished chemo on June 6. While I'm not 100% sure of what your oncologist will do, I can tell you what will be happening with me.
Four weeks after chemo, I saw my oncologist again and blood work was done again. During the interim I had been sent to the radiation oncologist for a consultation and to have the radiation prep work done. The mold was made for my arm and head, I got my tattoos, etc. I also had another MUGA done and my six-month mammogram was ordered. While that was painful, I did learn that I am still NED.

All of this was done before my first follow-up visit with my medical oncologist. When I met with him, he told me my heart was doing better than pre-chemo and everything was looking good. Since I am a TN, I would be seeing him every three months for two years. After that, I'd be seeing him every six months for the next three years. This sudden ending of treatment can be scary for a lot of TN's so he was quick to tell me that if I could still contact him or come in to see him if I had any questions, problems or concerns. That was reassuring for me actually as I did not feel like I'd been sent out to ride the cancer sea on my own!

My onc does not do blood marker tests. If I really wanted them, he'd do them. However, he explained about the high number of false positives, the screenings for something that likely is not there and the stress that involves. For the most part, it sounds like these tests generally aren't recommended as they are loose cannons.
I will be having mammograms every six months. If I recall correctly, I will also be having MRI's annually. Otherwise, that's it.

There's no evidence cancer has returned since my surgery in January so I am hopeful chemo/radiation has done it's job. It better after everything it put me through!
I agree, perhaps being TN is not such a bad thing. Hormone blockers really do not sound like fun and I'm not really having any trouble at all with the chemo-induced menopause. It didn't happen until the very end of chemo and I have so few symptoms of it other than the big one that I have a feeling that too shall return, even at my age. All of the other women in my family for at least three generations have gone until their mid to late 50's and I have a feeling I'll be in that group as well.

Personally, I think Triple Negative is a terrible name. It suggests nothing but gloom and doom and I just don't think that accurately portrays us!

Kathy
Diagnosed at age 47
DX: 12/13/07 IDC Stage IIa Grade 3 3.5 cm TN
Lumpectomy 1/30/08 SNB neg
Chemo-2/29/08: 4 A/C 4 Taxol-Done 6/6/08! NED!
33 Rads 7/7/08-8/20/08 Done!
12/10/09 Now Ruptured Brain Aneurysm Survivor!

Gail Srebnik
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RE: Triple Negative-How are you doing? - Saturday, August 09, 2008 11:55 PM
Hi there you wonderful Triples! I think we should come up with a different name for ourselves. Maybe ..hmmmm Non -hormone involved bc.? Anyways, I'm heading out tomorrow and who knows how far we will get but Jess wantrs to have breakfast with us so we will get off later then we usually do when traveling. Hello to the newer non-hormone involed bc gals! My best to you as you move on through treatment and back to finding a healthy life. Blessings to all, Gail
dx 8/11/06- 58 yrs young
62! yrs young now
lumpectomy 8/22/06
triple negative!
Clinical trial -AC and taxol with Avastin
Chemo done 1/25/07
33 rads done 3/30/07
Now - leukemia! 4/7/2008 carepage-GailSrebnikMeade

Patti Schimpf
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RE: Triple Negative-How are you doing? - Sunday, August 10, 2008 4:01 PM
Hello Triple Negative Sisters,

It's been 15 months since I finished treatments and everything is going well - well, at least I thought so. However my doctor seems to think that my thyroid is causing me some fatigue and sent me to an endocrinologist who did an ultrasound on my thyroid and determined I had Hashimoto's disease and now I'll be taking a pill every morning for the rest of my life. This isn't like my multi-vitamin or my calcium pill which I CHOOSE to take - it's something I'm being told I NEED to take. I really haven't come to terms with how I feel about this yet. I've always hated it when someone told me I HAD to do something (outside of taking chemo and radiation which I CHOSE to do to save my life.)

Am I being a whiny-baby about this? Or will the pill really get my body back in sync where I start feeling not tired all the time? Anyone else taking thyroid pills? If it does help regulate my metabolism where I can see results from exercising every day, I guess it'll be wort it.

Glad to hear the rest of you are doing well.

Patti
Diagnosed Oct. 2006
Lumpectomy Nov. 20, 2006
Triple Negative
Chemo Started Dec. 2006 - Finished March 2007
Radiation Started April 2007
Got early Radiation release May 29, 2007 - DONE!!!!!

carepage: PrayersforPatti
Big D, Texas

Rena
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RE: Triple Negative-How are you doing? - Sunday, August 10, 2008 5:17 PM
Hi everyone. Patti, I'm sorry to hear about your thyroid. My sister had Graves Disease I think it's called. She's 69 now and was diagnosed in her early 20s. She's taken thyroid medication all these years and has done well. There was one side effect that she didn't know about until maybe 10 years ago: certain thyroid medications taken long-term can deplete your bones and lead to osteoporosis. She had osteoporosis, but with medication and exercise, she gained enough bone mass to be out of the osteoporitic range. If your doctor says that your medication has this side effect, you can take steps to prevent osteoporosis and not get the nasty surprise my sister got. Good luck. I'm sorry to deliver more bad news, but if you know the potential problem in advance, you can avoid it. Take care. Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

jdmelo
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RE: Triple Negative-How are you doing? - Sunday, August 10, 2008 8:26 PM
hi  new here,
 
I am triple negative and starting chemo on Aug. 21.  Scared but trying to look forward.  Everyone seems to have done well with chemo.  Anhything I should look out for?  I see my oncologist tomorrow to go over everything.  Want to know I will be ok.
 
Diane

Sadie Rose
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RE: Triple Negative-How are you doing? - Sunday, August 10, 2008 8:41 PM
Hi Diane,
Welcome.  I'm glad you found this thread as you are starting out.  There is a lot of wisdom and experience from the women that post here.  I know this is a very challenging time for you.  There are a lot of us to tell you we made it through treatment and still going.  I am four years out from the end of my treatments. 
 
Please post again and tell us more about your treatment. 
 
Again, welcome.
Sadie

Gail Srebnik
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RE: Triple Negative-How are you doing? - Sunday, August 10, 2008 10:35 PM
Hi Diane! There are a lot of good suggestions of question s to ask your onc on the Komen site. I used them when I first met my doc.Ask about any clinical trials open for triple negs..don't be afraid to speak up and if you don't understand something ask that it be repeated. Try and bring someone along with you. Once things get set you'll be able to feel in control. My best to you! gail
dx 8/11/06- 58 yrs young
62! yrs young now
lumpectomy 8/22/06
triple negative!
Clinical trial -AC and taxol with Avastin
Chemo done 1/25/07
33 rads done 3/30/07
Now - leukemia! 4/7/2008 carepage-GailSrebnikMeade

Rena
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RE: Triple Negative-How are you doing? - Tuesday, August 12, 2008 5:38 PM
Hi everyone, and welcome Diane. How did your oncologist appointment go? I hope you weren't too overwhelmed with information. I haven't been checking in quite as much because I'm so busy with work. August is generally a very busy month because a lot of my clients (I'm an editor) are madly scrambling to finish papers and articles before the new academic year starts. Some of them act as though they have me on retainer and can send me 50-page papers that they want back in a few days. Yikes. I'm trying to get everything done this week. My husband and I will celebrate our 25th anniversary on the 20th, and then the next day, which also happens to be my birthday, I'm flying to NJ to help my sister, who is having surgery the next day. It's NOT cancer, thank goodness! It's not TOO serious, but she lives alone and will have incisions and drains (something we all know too much about), and I don't want her to deal with it by herself.

On the health front, I'm frustrated. After trying a bunch of cholesterol meds and having to stop them due to side effects, I finally started on Pravachol two months ago and was feeling fine. I had blood tests and saw my doctor yesterday. My cholesterol did change--it went UP--and my liver enzymes were completely out of whack!! So now she's sending me to a cardiologist who runs a cholesterol clinic here. I'm baffled and confused and still not 100% sure whether we should believe all the studies about lowering cholesterol. On the positive side, I still have ostepenia, but my bone density improved by minute amounts, so that's good. And I'm still as tall as I was two years ago!! Whoopee! I stopped shrinking!

Nevertheless, i still reside with NED and know that the rest of these things are small potatoes. I hope everyone is doing well. Gail, welcome home to CT. Diane, please let us know how things go for you. Patti, how is the thyroid medication? Veggie, Karey, sweet Sadie and all you other wonderful people, I wish you all the best.

Love,
Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Texas Granny
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RE: Triple Negative-How are you doing? - Tuesday, August 12, 2008 8:54 PM
I still lurk every day, mostly on this and  the sunbearz topic.  All of you are such amazing women - giving encouragement and hope to others, going about your daily lives,  and sharing your adventures with us.I had
 my 3 month check up last week -surgery 18 months ago - and everything looked good - the turmor markers went down.  I feel good most days and have returned to my normal life - working, eating and sleeping are about I do, but I am so grateful to be able to do that.  You notice that I didn't say anything about cleaning house!
 
The best to everyone.
 
Texas Granny

Gail Srebnik
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RE: Triple Negative-How are you doing? - Tuesday, August 12, 2008 9:05 PM
Hey Rena! I'm at home in Colorado and will not get back to CT till August 23. Where in NJ will you be? I'm sorry the cholestoral is still not under control. Mine was up at the last check up and I am off and on taking Niacin to see if that helps lower it. I'll have it checked in september.
Diane, I hope things are settling down a bit for you.
All you non-hormone involved sisters I send my love and healing thoughts. In case any of you are in to prayer and/or meditation a group on Bernie siegel's thread have formed a prayer circle at 9PM EST. They are joining together to send out healing thoughts to all who need them.
I am doing okay and will have a phone consult tomorrow with the naturapath in AZ. I'll let you know what he has to say afterwards.
My best to all, Gail

dx 8/11/06- 58 yrs young
62! yrs young now
lumpectomy 8/22/06
triple negative!
Clinical trial -AC and taxol with Avastin
Chemo done 1/25/07
33 rads done 3/30/07
Now - leukemia! 4/7/2008 carepage-GailSrebnikMeade

Patti Schimpf
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RE: Triple Negative-How are you doing? - Sunday, August 17, 2008 10:57 AM
Rena,

Thanks for the advice about osteoporsis. They did tell me I should have a bone density test - now it adds up! After the first week on the thyroid medicine, I'm not sure I can tell any difference. I guess the good news is that I've been taking Calcium supplements for several years now - ever since my grandfather told me to take calcium "so I wouldn't end up with a hump in your back like your grandma." Good advice. And I exercise pretty much on a daily basis - mostly treadmill walking 2+ miles a day, so hopefully that'll keep any bone density loss at bay.

Sorry to hear about your sister. You'll both be in my prayers for your safe return and her successful surgery. Hang in there with the cholesterol meds - you'll find the right balance - I'm sure of it!

Patti
Diagnosed Oct. 2006
Lumpectomy Nov. 20, 2006
Triple Negative
Chemo Started Dec. 2006 - Finished March 2007
Radiation Started April 2007
Got early Radiation release May 29, 2007 - DONE!!!!!

carepage: PrayersforPatti
Big D, Texas

Cyndi89
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RE: Triple Negative-How are you doing? - Sunday, August 17, 2008 12:15 PM
I am a recently diagnosed triple negative.  I've had a 2.02 cm in my right breast and I decided to do a bi-lateral mast.  I had expanders put in right after surgery.
 
I am currently preparing for my chemo regimen and I keep hoping that my oncologist and I have made the right decision.  Instead of 4 of AC followed by 4 of Taxol, he is going with 3 of Epirubicin/Cytoxen followed by 3 of Taxol. I am aldo going with dose dense (every 2 weeks).
 
Has anyone else had those drugs?
IDC, right breast 2.2cm, nodes 4/6+
Stage II, triple negative
Bil mast 7/08 with recon (expander)
Chem - dose dense AC/Taxol completed 12/30/08
Rad - 28 treatments 

Rena
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RE: Triple Negative-How are you doing? - Sunday, August 17, 2008 1:08 PM
Patti, thanks for your kind words. It sure sounds as though you're doing everything right for your bones. Cyndi, I just want to wish you well with the chemo. I had different drugs than you're having, so I can't comment. I hope someone here will have some info for you. Gail, I guess I got my "C" states confused. I hope you're enjoying your time back in Colorado. When do you return to CT? I'm trying madly to get all my work done before I leave for NJ on Thursday. My husband has been gone for two weeks and gets back tonight. The next few days (including our anniversary on Wednesday) will be a whirlwind, and then I'm off. Feeling just a bit stressed. BUT life is very good, so I will complain no longer. All my very best to you incredible ladies. Love, Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Sadie Rose
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RE: Triple Negative-How are you doing? - Monday, August 18, 2008 10:09 PM
Hi Rena,
I was just thinking about you tonight and wondering how you were doing with your husband gone.  Then I saw you mentioned he got back.  I was away for a few day.  Went down the Oregon coast and spent a few days at the beach.  I had a great time, but it feels good to be home.  I'm getting ready for work tomorrow, but just wanted to say hi!
 
Hi to everyone else too!
 
Warmly,
Sadie[sm=hello.gif]

Rena
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RE: Triple Negative-How are you doing? - Tuesday, August 19, 2008 1:30 PM
Hi Sadie and all. Sadie, your time at the beach must have been nice. How is work going? I finally have finished all the jobs I had to do before I leave town on Thursday. Tomorrow, for our anniversary, David and are going on the Elkhorn Safari--it's a pontoon boat tour of the Elkhorn Slough, an inland waterway that goes to the ocean. It's known for its abundant wildlife. We'll see all sorts of birds, seals, and, hopefully, otters. It's a real "tourist" activity and something we just have never gotten around to doing, so we thought it would make a nice anniversary treat. I hope you all have a good weekend and week. I'll be with my sister in NJ until the 26th, but I'll check in to see how everyone is. If you think of it, on Thursday, throw me a birthday wish--I'll be flying over this beautiful country on my way to NJ. This one is #59--just one more year of being a 50-something! Take care everyone. Love, Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

Gail Srebnik
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RE: Triple Negative-How are you doing? - Tuesday, August 19, 2008 8:34 PM
Sadie, Jess told me he got your note. Many thanks for looking him up. rena, a very Happy BDay and safe travels (oh yes and also anniversary). I leave tomorrow so I won't have internet till Saturday (I think). Take care all! Blessings,Gail
dx 8/11/06- 58 yrs young
62! yrs young now
lumpectomy 8/22/06
triple negative!
Clinical trial -AC and taxol with Avastin
Chemo done 1/25/07
33 rads done 3/30/07
Now - leukemia! 4/7/2008 carepage-GailSrebnikMeade

Rena
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RE: Triple Negative-How are you doing? - Tuesday, August 19, 2008 9:47 PM
Thanks, Gail. You have a safe trip, also.
Love,
Rena
Rena age 66 California Central Coast
29-year survivor
BRCA2-positive
Dx 1986 IDC ER/PR negative 22 positive lymph nodes
CMFVP chemo weekly for one year, 7 weeks radiation
October 2007: New chassis and spark plugs!

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