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sue View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2011 at 2:12pm
Kim,

So glad to hear you are getting treated and feeling much better.  What a relief it must be.   

Stay warm and dry from the snow if possible.  

Sue
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mjhoover@gmail.com Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2011 at 4:42pm
Kim, I have had bouts like that too...Imodium was my best friend and it really worked! Remember to keep drinking lots of fluids, it will help with both the UTI (flush it out) and give you back some lost fluids from the D. Broth, juices, tea, water, all can help you feel better. I know I am on the mend when I can take my morning coffee too!!! Glad you are doing better. MJ
7/08 IDC L Br, mast 1/16 node +,St 2 gr 3, 6 rounds TAC
7/10 Mets to lungs, nodes abdomen BRCA-
8/10-1-11Abraxane/Avastin
7 11 3.3 cm tobrain sstem/rt cerribellium WBR 15 rds
Poss trial at MDA after
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Post Options Post Options   Thanks (0) Thanks(0)   Quote abcmom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 11 2011 at 7:04pm
Glad to hear you are feeling better today.  Those UTI's are awful though.  Goodness you are having it tough!  Hang in there!  Despite all that you have going on you always have such a great outlook! 
 
Hugs ((((())))))
 
Keri
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2011 at 4:41pm
Kim, so very glad to see things are looking up!
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: Jan 12 2011 at 7:30pm
sounds like you are on the upswing...yea!
tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 10:28pm
Still feeling good 95% of the time - I get the occasional residual chemo funk.  The UTI appears to be in check.  For the first time in 2 months I feel hopeful again.  So hard to believe everything will be OK when you feel like crap all the time.

Elated to read about the clear scans on the board.  Our sails needed that fresh breeze!!

God bless and keep us all.

xoxo

Kim
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Jan 14 2011 at 10:47pm
Random thought...

If I'm going to lose my hair again, when should that start?  I'm coming up on 2 weeks post 1st tx.
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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dd View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dd Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 8:33am

TNBC 2=08 Mastectomy and 21 lymphs removed 3=08.  Chemotherapy completed 11-08. I have a local recurrance found tumor in axillary node on May 2010.  I had 21 lymphnodes removed total of 42 now, had Radiation therapy all summer and have 4 wks to go on Gemzar/Carboplatin.  What I am wondering is have you discussed or checked your Vit D levels during this time.  I found that I have had a problem for a 3 years.  I am taking Vit D and it keeps dropping.  I have read some articles that state Low levels can cause cancer. Thanks

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dd Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 10:58am
I am new in this site, I guess I am wondering if we have other things in common besides the tnbc.  I had a normal mammo 7-07, hysterectomy total 8-07 and found my cancer 8 months later. Not sure about BRCA 1 or 2 but my sis was tested and she is neg. I drank 3 x a year, probably 251bs over weight, never smoked. Addiction to chocolate.  Because is comes back and is hard to beat I wonder if there is something we have in common.  The VIT D level or maybe the hx changes something in our system?  Any ideas would be appreciated.
Tnbc R Mast 2/21 nodes 3-08, act with avaston 4-08, ax node dx 5-10 radiation 7-10 gemzar/carboplatin 10-10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 11:23am
Hi DD,

Welcome to this site.  You'll find so much helpful support and information from everyone here.  There's been much discussion about Vitamin D.  Most of us are deficient when diagnosed with Triple Negative Breast Cancer.  We have a thread talking about Vitamin D.  Please take a look at it and read some of the posts and articles.  They are very informative.

http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page21.html?KW=Vitamin+D3

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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sue View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 12:17pm
Hi Kim,

Mine started to fall out 2-1/2 weeks after the treatments.  Have sticky-up hair fuzzy-looking head now.  

Cold here in NJ with no hair, but wearing the hats and turtlenecks.  

Head was real itchy last week.  Not sure if it was from wearing knitted hats inside for long periods or the hair about to fall out, but switched to cotton hats inside and have had no more itching, though they are not as warm on my ears. Would wear ear muffs, but just got over ear infection, so want to keep them open to air.  I just hold my hand over them when they get too cold.  

Since the knitted hats don't cause itching if worn for a short time, always wear knitted hats outside, either alone, or over top of cotton hat if going out for longer time on car ride, and hooded jacket if walking outside.  

Hoping the best for you with all of this.  

Stay warm.  

Sue


Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 12:21pm
Kim,

On Cytoxan and Taxotere, my hair fell out on Day 15.

My friend who's got PC and just finished 5 months of chemo on Carbo/Taxol never lost her hair.  It thinned out a lot, but never lost it.  She bought a wig and never wore it.  I saw her last month and if you knew her, you'd notice a difference that her hair was not as thick anymore.  If you didn't know her, I doubt anyone would think she was having chemo.  So maybe you won't lose your hair! 

Donna

PS:  Happy Anniversary!
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 12:26pm
Donna, I think this depends on whether the dosing is once every three weeks or the lower dosed weekly version.   People on the weekly version keep their hair, those on the higher dose every three week version mostly don't.  Though there are exceptions.

Happy anniversary, Kim!   And I hope you are one of the lucky ones and get to keep that gorgeous hair of yours.  (Though if not, your lovely face will shine through and eventually the hair will return).
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 12:54pm
Denise,

Agreed.  My friend's tx was week 1 Carbo/Taxol,  weeks 2 and 3 Taxol only, then off a week. 

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote dd Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 1:22pm

 Thank you 123 Donna, I really appreciate your help.  Are you taking Vit D - my Dr. wants me to start taking 50.000 units once a month.  I would love to know if this works for anyone. 

Tnbc R Mast 2/21 nodes 3-08, act with avaston 4-08, ax node dx 5-10 radiation 7-10 gemzar/carboplatin 10-10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 1:35pm
dd,

The Vitamin D3 thread talks about Vitamin D2 and D3.  What your doc is prescribing is D2, which you don't want.  You can get Vitamin D3 over the counter.   I went from a Vit D level of 19 to over 65 after taking 7k - 8k of D3 a day.  It takes awhile for the levels to increase.  Maybe get tested every 3 or 4 months to see how your levels have risen.

http://www.vitamindcouncil.org/

http://nosurrenderbreastcancerhelp.org/page93/page92/page92.html

http://lpi.oregonstate.edu/infocenter/vitamins/vitaminD/

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote dd Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 2:23pm
Donna, the last 2 times I tested my Vit D level it went from 23 to 17.  In that time I had switched to a from one over the counter med to a different one.   Thank you for your help, can you tell me how long you have been taking the high dose and is there a brand that you recommend?  I want to get the levels up before I finish this round of chemo.  I can't help but wonder if this isn't the reason it keeps coming back. 
Tnbc R Mast 2/21 nodes 3-08, act with avaston 4-08, ax node dx 5-10 radiation 7-10 gemzar/carboplatin 10-10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dd Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 2:32pm
Do you ever feel like you have a concern and the Dr's don't want to look at it.  like my Vit D level no one will make suggestion,  I had to insist on the test and also after more than 2 years some meds.  I have  sore in my back shoulder blade but the Dr. just ignores it,, doesn't order an xray or touch it to see if it is a lump.  I live in a rule area so I don't have a lot of options for Onc. would have to travel 8 hrs to get to Chicago. 
Tnbc R Mast 2/21 nodes 3-08, act with avaston 4-08, ax node dx 5-10 radiation 7-10 gemzar/carboplatin 10-10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 3:55pm
dd,

I don't know if you were like me, but I never knew anything about Vitamin D levels when I was diagnosed.  When I joined this forum it was one of the first things I remember reading.  Nancy, Connie (CQ), Mainy and other members were there to educate me about Vit D.  I finished tx the first time in 9/09 and had my Vit D level tested for the first time in 10/09.  I found out it was very low at 19.  My onc gave a prescription for 50,000 units of D2 but never took it.  I learned from the gals here that D3 is what you want.  It took from 11/09 to this past summer for me to get my levels up into the 60s.  It did trend up with each test I took.  My onc was very good about testing me every few months.  I just buy D3 at Sam's club or Costco.  You want to make sure you take it with Calcium and Magnesium to help with the absorption.  As far as your question about it coming back, I had my levels up and it still recurred.  I'd like to think it helped keep it at bay for a while.  If you read the Edges-CAM about Vit D, it should help make the chemo more effective.

It's difficult when your docs don't support your concern about it.  While some oncs might not be on the bandwagon about Vitamin D and supplements, I did have one agree that being deficient in anything is not good.  Bye the way, you can order an at home Vit D kit from the Vitamindcouncil.org website.  That's how I tested the first time.  Actually I bought several kits (I think the price was little cheaper if you bought 4) and had my husband test too.  He was low in the 30s.  Since then my family has been taking 5k of D3 a day.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jan 15 2011 at 5:25pm
Dear dd,

I also found out about Vitamin D on this site. When I had mine checked in December of 2009 it was 17. I had it checked again in June 2010 and it was 43. In December of 2010 it is 52.8.... I'm getting there.

I took the 50,000 units of prescription Vit. D2 for about 2 months and then switched to the OTC Vit. D3. I take 6,000 units per day for a total of 42,000 units per week. I get mine at the CVS drug store (store brand). The ones I buy are 2,000 U each, so I take 3 every day.

Good luck with yours. It takes a while, but steadily and surely it does climb. Good luck with yours.

You refer to a sore in your back shoulder blade. Is it a place that is sore? Is it a visible sore on your shoulder?   Is it a lump that is sore? I don't care if you are rural, that shouldn't keep the doctor from checking your shoulder blade.

Good luck and keep posting.

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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