Triple Negative-How are you doing?

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Gail Srebnik
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RE: Triple Negative-How are you doing? - Friday, October 10, 2008 5:20 PM
Hi all you wonderful triples! I am feling better but I have become very aware, thanks to my naturapath and my oncologist nagging me, that when i get sick now it will linger longer and hit me harder due to the CLL. My wbc was up (no surprise) but I hope it is down when i do another blood test the end of the month. The niacin seems to be helping to lower my cholestoral but my bp was up.I talked to our seniors today about our passionately Pink day coming up Oct.21 and that led into me talking about bc and when not to accept a doctor telling you that you are too young to have bc. You could have heard a pin drop in the room. Education is a means to early detection and a means to ending this disease hurting far too many young and old. Have a wonderful week-end friends! 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

Sadie Rose
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RE: Triple Negative-How are you doing? - Friday, October 10, 2008 9:11 PM
Hi Rena,
 
How are you doing after the PET scan.  I always feel a little under the weather after one.  I don't think my body like the things that are injected before the scans.  Have you gotten any results yet?  Hope you can relax over the weekend.
 
I willingly "donated to the cause", as the genetics oncologist asked me to do.  I gave a blood sample, but I won't know if my insurance is going to cover the BRCA testing or not.  I hope they do because I have a daughter and she has two new little baby girls.  We both have the same gene mutation for blood clotting and I already had a pulmonary embolism.  This information would be helpful.  I don't know a lot about my family history so I couldn't gather much information to help convince my insurance company this is important.  It is a funny feeling to think a decision will be made to test or not to test because someone sitting at a desk decides it is cost efficient.
 
I looking forward to a calm and relaxing weekend.  I am all moved into my new office so I hope I get to our local farmer's market.  I love fall and the richness or the orange, yellow and red leaves on the maple trees in our area.
 
Rena= I hope you and everyone here has a pleasant weekend.
 
Warmly,
Sadie

DJW
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RE: Triple Negative-How are you doing? - Friday, October 10, 2008 10:26 PM
Thanks, Rena.

Your faithful presence on these boards means a lot to us "newbies" in the BC world. Thank you for always being there.

Deborah

Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)

Rena
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RE: Triple Negative-How are you doing? - Saturday, October 11, 2008 11:24 AM
Hi Gail, Sadie, Deborah and everyone. Gail, although it might frighten young girls to hear your message, you're doing them a great service by letting them know never to be complacent or to accept the word of "authority" when their instincts are screaming something else. I worry so much about my daughter as she be-bops her way through life. I want her to be able to be young and feel at least a little invincible, as young people do, but I also want her to be vigilant. She's coming up on her 24th birthday, and at 25 she'll be tested for BRCA. It's a heavy load for one so young to have to carry, but burying one's head in the sand can have dire consequences.

Sadie, I hope you're able to get the BRCA test covered and that the results are NEGATIVE! It's a big worry, I know. It sounds as though you've been working hard lately, and I hope your weekend is restful. The Northwest is one of the most beautiful places on earth, and I can imagine what early fall must be like. Thanks for asking about my scan. It was actually a CT scan of my liver and pancreas. The liver is a follow-up of my benign liver condition, and I'm not worried about that. The pancreas I'm not sure. He added that this time, and I think its because my blood sugar has been stubbornly elevated, so he may want to see if something is going on in my pancreas. Ugh. I'll talk to him on Monday when I go in to start the clinical trial of a new drug for my hiatal hernia/heartburn problem.

Deborah, I'm glad to be here. It's amazing to me how close I feel to so many women I've never met and may never meet. I get so much from all of you. You know how in some relationships, you may like the person quite a bit, but it always sort of stays superficial and never reaches a certain level of intimacy? With all of us having dealt and dealing with this disease, all of the superficial seems to just dissipate, and we are so real with one another. There aren't too many places to find that. Do I wish that breast cancer didn't exist and that we'd never had to meet? YES! But since that's not the case, I'm glad we're all here together.

Sending love to you all,

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? - Thursday, October 16, 2008 10:32 PM
Hi Everybody,
 
Just wanted to check in with everyone.  I've had a nice week.  I am starting to feel settled in my new office.  I got my printer/fax machine set up, so I am good to go.
 
How is everyone else doing?  Gail- are things getting calmer at school?  Rena- How are you doing this week?
 
Have a restful night.
 
Warmly,
Sadie

DJW
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RE: Triple Negative-How are you doing? - Thursday, October 16, 2008 11:33 PM
Sadie,

Thanks for asking! I'm actually loosing it again.....my hair that is.



I handled it really well the first time and have bragged about how in control I felt in shaving my head and taking control of when I'd be bald. Not so much this time. My hair is 1.5" long; the result of 3 months of growth during weekly Taxol and surgery. Then two weeks ago I had a 3-week dose of Taxol and 12 days later (just like when on A/C), it started falling out again. I only have one more 3-week dose of Taxol and I'm done. But I wasn't prepared for this. Just as I am ready to move on (no rads, but stage II reconstruction ahead), I'm facing being bald again.

Why is it so much harder the second time???? Haven't decided whether I'm going to shave it again, but I have a feeling I'm going to have to. Now I'll be growing it out during the winter. That sucks.

Deborah[sm=sad.gif]

Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)

Rena
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RE: Triple Negative-How are you doing? - Thursday, October 16, 2008 11:37 PM
Hi Sadie. How good to hear from you. I'm glad you had a good week and that the office is all set up and ready. How are your granddaughters? Have you had any word from the insurance company about the BRCA?

I'm doing fine. My CT scan results were good. The liver condition is stable, and my pancreas is normal. Next test is next week--the one to look at my coronary arteries. Oh joy.

A week from tomorrow, I'll be flying to Indiana for "Breast Fest," where I'll meet about 20 (yes, 20!) Komen friends. I'm sure we'll have a wonderful time. I'm flying with my good friend Ilene, who lives in Southern California, so that will make the trip a lot of fun.

Take care and have a great weekend.

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? - Friday, October 17, 2008 10:54 AM
Hi Rena,
 
No, I haven't heard anything from my insurance company yet.  Maybe not hearing anything is good.  Seems like I would have gotten a "no" right away.
Good news on your scans!!!  What does your next test involve?? 
Have you had any symptoms?
 
How fun it is going to be to meet with some of the women you have been talking to.  I can't wait to hear about it all when you get back.
 
Have a wonderful weekend.
Warmly,
Sadie

Sadie Rose
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RE: Triple Negative-How are you doing? - Friday, October 17, 2008 10:59 AM
Hi Deborah,
 
I am so sorry you are having to go through the loss of your hair again.  I remember the hardest time for me after that first day was waiting for my hair to come back in slowly. 
 
I know you got through it before, but now we know what we are getting into.  I hope you can go shopping and buy a beautiful scarf or hat that is really comfortable.  I remember wearing a stocking hat in the house because my head was cold in the winter.
 
Take good care of yourself and I will hold you in my thoughts.
 
Warmly,
Sadie

DJW
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RE: Triple Negative-How are you doing? - Friday, October 17, 2008 11:08 AM
Thanks Sadie!!

I'm slowly getting accustomed to the idea. The first time I refused to wear anything with a pink ribbon on it, but the last couple of months I've proudly worn a couple of hats with pink ribbons!

I will find a couple of "cloche" hats to wear. I know you are all there to help me get through the last stages of treatment and surgery. I'll keep you informed.

One other thing, I've applied for LTD benefits. My doctor does not want me to return to my high-stress executive position. I'd only been in it 8 months when I was diagnosed. It took me a month wrestling with this before agreeing to do it. Turns out that if I am approved, I'll get 60% of my current pay until age 65 because I can no longer do my current job. I believe now that God led me to this job so I would be taken care of when I developed BC.

Always looking for silver linings!!


Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)

Gail Srebnik
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RE: Triple Negative-How are you doing? - Friday, October 17, 2008 7:06 PM
Hi folks..I hope this finds you all doing well and having a relaxing week-end planned for yourself. I will walk the 3 miles Sunday with the Making Strides Campaign with my BC Support Group here (and of course my hubby). I never cared for pink and had no pink clothes. But since dx I have worn a pink ribbon and bracelet every day. I'm not looking for pity or anything by wearing these things - I just can't explain how they make me feel empowered. Anyways, on Tuesday the school goes Passionately Pink for Susan G. Komen and I will be decked out. If anyone wants to make a donation you can go to the Passionately Pink page on komen and we are listed as Explorations. My best to you 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

Sadie Rose
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RE: Triple Negative-How are you doing? - Saturday, October 18, 2008 8:49 AM
Good Morning Everyone,
 
It is still dark outside, but I have a warm cup of coffee.  I'm in my favorite chair watching my little dog slowly wake up.  She's not an instant riser that's for sure.
 
I had to work a half day yesterday and then I went to help my daughter with her twin baby girls.  They are almost 5 months old and cooing and smiling.  You can tell they have figured out if they talk to you, you will stay with them longer.  Needless to say, I held one or the other of the girls all afternoon and into the evening.  My arms were so tired when I got home, I couldn't lift them.
 
They sure steal my heart.  I love watching my daughter with them.  It is truly a love fest.  It fills me up and reminds of why it is so important to take care of myself.
 
I'm still waiting to see if insurance will pay fo my BRCA testing.  I would love to have the results for my daughter and the girls.
 
Opps, now my pup needs to go outside.  I'll write more later.
 
Hope you all have a relaxing day.
 
Warmly,
Sadie
<message edited by Sadie on Saturday, October 18, 2008 4:21 PM>

Lisa11388
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RE: Triple Negative-How are you doing? - Saturday, October 18, 2008 9:32 AM
Sadie,
What a wonderful afternoon you had.  I just love babies and watching them grow and figure out new things.   I have to wait a few years for grandbabies though.  My two boys are 21 and 19, not quite ready yet.  I have a 5 year old niece and a 2 month old nephew who do quite nicely for now!
 
My insurance didnt give me any trouble over the BRCA testing even though I had no family history.  Thankfully it turned out negative.  Hopefully your insurance will come through for you also.  Have a nice weekend.

Lisa Long
Central Illinois
dx 8-29-05 age 43
mast & lat flap 9-30-05
triple neg brca neg
4.5 cm node neg
6 a/c followed by 5 taxol 10/05-3/06
28 rads 5/06-6/06
Currently NED

Rena
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RE: Triple Negative-How are you doing? - Saturday, October 18, 2008 11:03 AM
Good morning Sadie, Lisa, Gail, Deborah, Claudette and everyone else. Sadie, I love your descriptions of early morning. They make me want to be sitting there with you. How peaceful it must be to watch your dog slowly wake up. In my house, I have three cats practically banging down the door to get their food in the morning--especially Phoebe, who has turned into a "pig cat" and wants to do nothing but eat! The vet has already admonished me about her weight, but I haven't yet figured out how to feed three cats separately without spending my whole day feeding cats! As my husband put: "We've had fat cats before, and one lived to be 17 and the other lived to be 19." True--I guess I shouldn't spend too much time on it.

Sadie, you asked about my heart scan. It's called a coronary calcium scan, and it's a completely non-invasive CT scan--no contrast dyes needed. So the test will be a breeze. It's the results I'm concerned about. It will measure the amount of buildup in my coronary arteries and come up with a "calcium score." I'm having it because I have high cholesterol that's been resistant to medication, and the cardiologist wants to use this info to decide how aggressively to treat me. I guess if my arteries look good, then he won't feel the need to bring my cholesterol numbers down as low as otherwise.

Gail, good luck on Sunday! I hope the weather cooperates. Deborah, I hope your benefits work out--that was perfect timing. I'm sorry you have to lose your hair again. I hope you find some really cute hats--and don't forget the big, dangly earrings! Lisa and Claudette, how are you both doing?

I hope it's a good weekend for all.

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!

MaryLou
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RE: Triple Negative-How are you doing? - Saturday, October 18, 2008 4:34 PM
Hello all,
 
Today was the 3 mile walk in Virginia Beach, VA.  It was my first time as a survivor.  The weather was bad as we had a north east wind and rain, but to me it was kind of refreshing as I am hot all of the time.  It was a bit overwhelming getting on the stage for the survivor photo, seeing how many women whose lives had been interrupted by breast cancer, but at the same time you had to be thankful that there were so many on that stage alive!  I hope that all of you and I will have many more years as survivors. 
 
Oh, by the way... after the race my husband looked at me with deep concern as he was wiping brownish red stuff from the side of my head.  He thought I was bleeding but it seems like a bird had crapped all over my head and my pink survivor shirt.  I didn't even feel or notice it.[sm=whew.gif]   What the hell!!
 
Mary Lou
Mary Lou, 51, Chesapeake Virginia
DX 1/8/08 IDC 1.9cm Grade 3
Triple Negative
Lumpectomy 2/11/08 Nodes -
Mamosite Radiation completed 2/22/08
6 rounds T + A/C completed 7/18/08

Rena
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RE: Triple Negative-How are you doing? - Saturday, October 18, 2008 5:44 PM
Mary Lou, congratulations on doing the walk, despite the elements, and getting crapped on--they say it's good luck, you know! Thank you for making me laugh! I've already had many years as a survivor, and I wish all of you the same. 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!

DJW
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RE: Triple Negative-How are you doing? - Saturday, October 18, 2008 8:28 PM
Hi Ladies,

Well, my hair is now falling out in clumps, so my mother cut it super short and I'm working on shaving it. Unfortunately, it's a little harder since my mastectomy as I'm right handed and that's the side my cancer was on.

Pulled out my old favorite scarf and will tackle it again tomorrow. Once again, I decided it was better if I picked the day and time I went bald.

All in all, feeling better about it. Thanks for the encouragement!!!

Oh, I almost forgot. I have a phone interview with the LTD insurance company at 9:15 MDT on Monday. Keep me in your prayers!!

Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)

Sadie Rose
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RE: Triple Negative-How are you doing? - Saturday, October 18, 2008 9:16 PM
Deborah,
 
I am so sorry you are having to experience this again so soon.  It does give you a sense of control to take charge decide when it is going to happen and shave your own head.  I did that too.  I remember just wanting to get it over with.  I hope the worst part of that tension is over for you. 
 
If you can, I hope you get the chance to go shopping and buy yourself a special new hat.  Something colorful will lift your spirits.
 
I also want you to know we are all holding you in our thoughts.
 
Warmly,
Sadie

DJW
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RE: Triple Negative-How are you doing? - Sunday, October 19, 2008 12:44 AM
Thanks, Sadie. I wish I had discovered this group 7 months ago when I was first diagnosed. I found the group when I was recovering from my mastectomy and look forward to chatting with all of you everyday.


Deborah, Albuquerque, 59, 5 year survivor!!

-Diagnosis: IDC & DCIS, Stage IIb, Grade 3, Triple Negative (3/19/08)
-No family history, BRCA 1&2 neg (Jun 08)
-A/C (4 DD Apr - Jun 08), Taxol (4 Wkly Jul-Aug 08), Taxol (2 DD Oct 08)
-Modified radical mastectomy with immediate saline implant (8/19/08), 3/12 nodes positive 
-NED!!! (Nov 08)

karey
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RE: Triple Negative-How are you doing? - Sunday, October 19, 2008 12:52 AM
Hi Everyone,

I had my first post-treatment follow-up visit with my oncologist yesterday. Actually, I'd run into him back in September. My husband and I had gone to a showing of Dear Talula. There was going to be a panel discussion afterwards and lo and behold the oncologist turned out to be my oncologist. He saw me from the stage and when I went up to him afterwards he demanded to see my hair and pushed back my cap a bit so he could see it better. I promptly complied and whipped my cap off and modeled my new look for everyone.

Anyways, this time I was feeling a bit nervous. I'd just found a "ridge" and although I thought it was probably nothing, it still made me nervous. I expressed my fears and he checked it out for me. To my relief it was the area where they had stitched things down during my lumpectomy. I hadn't been able to feel it before because there was still some swelling apparently even during chemo. It took awhile for me to lose fluid which kept accumulating in the tumor area. Then I had radiation and of course, that didn't help matters any. I got burns so of course the area was still swelled for awhile. It wasn't too bad but it was enough to cover up the infamous ridge.

Now things are nearly back to normal and that means the ridge is now more exposed. It was a relief to know that's all it was. He checked out my lymph nodes, underarm, shoulder and neck while he was at it and gave me a clean bill of health and stern instructions to call if I had any concerns regardless of how trivial I thought they might be. I got my port flushed (I have to keep it for a year) and was sent packing until February.

I'm feeling great and keeping busy with all of my second graders. I'm keeping up with them pretty well actually. I'm doing better at that than I thought I would. That's a relief!

Kathy
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!

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