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Lizzylou View Drop Down
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    Posted: Sep 09 2013 at 5:41pm
Havent been on forum in a while, going to siteman next week to see dr. Cynthia Ma, anyone know of her?
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123Donna View Drop Down
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Hi Lizzylou,

I've heard Dr. Ma is very good and I believe involved in some TNBC studies.  I see Dr. Matt Ellis at Siteman.  Great place and I highly recommend Siteman.

Here's a link to her TNBC research on P13K pathway:


Donna


Edited by 123Donna - Sep 09 2013 at 10:16pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Lizzylou View Drop Down
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Points: 31 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Lizzylou Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2013 at 1:45pm
Thanks donna, i feel better now, appt. Is the 17th, im in middle of tx. But i dont trust my onco, i was going to report him, and he found out, and was very nice,during my appt.but a zebra doesnt change his strips.   I will let you know how it goes. Tx
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Lizzylou View Drop Down
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Points: 31 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Lizzylou Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2013 at 5:42pm
Hi, to all, i saw where some tneg.get carbo/ gemzar, is this good for anyone after standard tx?    
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Lizzylou View Drop Down
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Donna, can anyone get on carbo/gemzar that are t neg.?
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123Donna View Drop Down
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Points: 13510 		Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2013 at 9:35pm
Lizzylou,

Have you had surgery prior to tx?  From what I've seen it's uncommon to give more chemo after someone has finished standard tx.  Sometimes when women have neoadjuvant chemo and don't achieve a pathological complete response (pCR) with surgery, they may receive more chemo, usually in a clinical trial.  

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Lizzylou View Drop Down
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Points: 31 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Lizzylou Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2013 at 10:51pm
Donna, I had surgery in april, but thought i could get extra chemo to fight this t neg, im not up on all this but i know you are, just asking and preparing for new onco at siteman. Thank you.

Edited by Lizzylou - Sep 12 2013 at 10:54pm
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123Donna View Drop Down
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Points: 13510 		Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2013 at 10:59pm
Lizzylou,

I'd ask if there is any further treatment or clinical trials that would help you.  You are getting prepared and that's a good thing to think about.  Hope the visit goes well and you get all your questions answered.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Lizzylou View Drop Down
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Donna, i will do that, have a list of questions wrote down, so i remember them,,, thanks so much
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123Donna View Drop Down
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Lizzylou,

Have you had your Vitamin D levels tested?  Most of us are deficient when diagnosed.  Everything works better when we can get to normal levels, including surgery, chemo and radiation.
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Lizzylou View Drop Down
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Hi donna, i had to ask for d3 level my onco ordered it a couple weeks ago, when he was in his nice mode,it came back 22.4, he said its a little low, but i was already taking 4oo-800 iu daily, so it would have been lower, he said to take about 800 daily, very flippant about it, i will read your info.on it. Thanks again.
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Lizzylou View Drop Down
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Donna, thats alot of info., i have read about vit. D,thats why i started taking it, i know its fat soluble,so was cautious about too much, now that i know my level, i will increase it, thinkihg about 2000 daily and my calcium has it too thanks again...
....
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123Donna View Drop Down
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What do the results mean?

When you get your test results you will see a number in units of ng/ml, for example, 50 ng/ml. These are the units that health professionals in the United States use. Elsewhere in the world, vitamin D blood test results are given in units of nmol/l.

To convert a test result measured in nmol/l to one measured in ng/ml, divide the nmol/l number by 2.5. For example, 50 nmol/l is the same as 20 ng/ml (50÷2.5).

To convert a test result measured in ng/ml to one measured in nmol/l, multiply the ng/ml number by 2.5. For example, 20 ng/ml is the same as 50 nmol/l (20 x 2.5).

These are the ranges that different organizations in the United States use to say whether you’re severely lacking in vitamin D (deficient), mildly lacking in vitamin D (insufficient) or whether you’re getting enough vitamin D (sufficient):

Vitamin D 25(OH)D range guidelines from various organizations:
Vitamin D CouncilEndocrine SocietyFood and Nutrition BoardTesting Laboratories
Deficient0-30 ng/ml0-20 ng/ml0-11 ng/ml0-31 ng/ml
Insufficient31-39 ng/ml21-29 ng/ml12-20 ng/ml
Sufficient40-80 ng/ml30-100 ng/ml>20 ng/ml32-100 ng/ml
Toxic>150 ng/ml

The Vitamin D Council suggests that a level of 50 ng/ml is the ideal level to aim for. This is why the Council recommends that adults take 5,000 IU/day of vitamin D supplement in order to reach and stay at this level.

The Endocrine Society recommends taking a vitamin D supplement of around 2,000 IU/day to reach and stay above a level of  30 ng/ml. This is what the Endocrine Society recommends as the ideal level to aim for.

http://www.vitamindcouncil.org/about-vitamin-d/testing-for-vitamin-d/
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Lizzylou View Drop Down
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Points: 31 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Lizzylou Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2013 at 2:57pm
Donna, my test numbers have nothing after them, just results - 24.6   and normal 30-100 so i guess i will take 5000 iu daily.? Seems like alot, since its fat soluble, but thats what you were taking, i know i have to be my own advocate, drs dont tell you this stuff. And with the help of this forum,ive learned alot. Im a nurse and never knew half of this, but i worked in county jail system.took care of emergencies and drug addiction mostly. I appreciate all of this info.
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Lillie View Drop Down
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Hi Lizzylou,

I wish you the best with your new oncologist. 
Are you taking Vit D or Vit D3?   Us TNBC girls need the Vit D3.   I take 5,000 iu daily of D3.  Got mine up from a level of 17 to 60.  It took a while, but it will rise.
 
Have you had surgery?  You say you are in the middle of treatment; what chemo are you taking?
 
Donna you are the best!!  How are you feeling since your surgery?
 
Good luck and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Lizzylou View Drop Down
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Points: 31 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Lizzylou Quote  Post ReplyReply Direct Link To This Post Posted: Sep 13 2013 at 8:17pm
Hi lillie, good to hear from you, im taking d3 i just got results back , i didnt want to take a high dose till then, im starting on 5000iu daily, my onco told me to take 400-800 daily, but he dont care. I had mastectomy in april and on act 2more taxol to go,getting anxious about whats next. I asked onco if scans are next and he said, take one thing at a time,finish taxol first, so i have appt tues.at siteman, they dont seem to care how far along i am with treatment. I want siteman to go over my reports and if they have any extra help for me.
,
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Points: 84 		Post Options Post Options   Thanks (0) Thanks(0)   Quote tjm Quote  Post ReplyReply Direct Link To This Post Posted: Sep 19 2013 at 7:55pm
Lizzylou~ you asked about taking Carbo and Gemzar for TNBC. I have stage 4 TNBC. I started out on Taxol and Avastin and when that stoppped workng we went to Carbo and Gemzar which has been working since December 2012. I had my mastectomy about 9 months after I had been on the Taxol and Avastin when I had NED.
Best wishes on your journey.
Traci
Dx.6~30~11~TNBC,Stage 4 mets to lungs, BRAC neg,Since Aug.2011, Taxol & Avastin,NED 3~1~2012,4~2~12 Mastectomy,5~17~12 New lesion lung, Taxol & Avastin, New Hilar LN lesion,starting Gemzar & Carbo
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Lizzylou View Drop Down
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Thanks for info, im stage 2b and thought anything extra might help, got off to a bad start, reg. my onco who is awful. I have new one now,and will see her again, for last taxol tx. and will bring it to her attention.   Nice to meet you.. pat

Edited by Lizzylou - Sep 19 2013 at 8:29pm
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123Donna View Drop Down
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Points: 13510 		Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 20 2013 at 1:43pm
Lizzylou,

How did your appointment with Dr. Ma go?  I think you said you had one on the 17th.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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Lizzylou View Drop Down
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Points: 31 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Lizzylou Quote  Post ReplyReply Direct Link To This Post Posted: Sep 20 2013 at 7:34pm
Hi donna, i went for appt.and i like dr. Ma, but when she found out my onco.was giving me chemo every 3 weeks instead of 2 ,she wasnt very happy about it. i knew some were getting dose dense, but i was on my 4 tx. by then, and thought due to my age, and cardiac toxicity, that was why, i didnt know that much about chemo, so now im upset, that it might not do the job right. I asked for 2 more taxol 6 instead of the 4 that was the old plan and every 2 weeks and she said ok. I was examined and get blood work next week and ct in oct. Im to finish my chemo at south county, i like it there, and youre right, they treat you first class, thanks, pat    worried in ill.
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