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33 year old recent diagnosis

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julesh View Drop Down
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    Posted: Dec 08 2011 at 6:02pm
Hello.  As my subject implies, I am a 33 year old new TN patient.  I'm married and have an 8 year old daughter and 2 1/2 year old son.  I went for my well woman on 10/6 and had a clean bill of health.  Almost exactly a month later, I found the lump by grazing my breast while sitting at the table.  Fortunately, my doctor was able to see me within hours and that's when the whirlwind began.  I had a mammo/ultrasound 11/11, biopsy 11/18 and got 'the news' 11/21.  I had scans done on 11/22 which showed 1 lymph node being involved and a .4cm spot on my lung.  My oncologist said it is possible that that is scar tissue from a previous infection so that's what I'm choosing to believe until I'm told other wise.  I was told by my oncologist that I'm being treated as a Stage II because there is no way to know about my lung until my next scans (hopefully the scar tissue will still be there).  I had my port placed on 11/23 and had my first round of chemo 11/28 and will have my second round this coming Monday.  I've tried to stay away from the internet because I trust that my doctor knows what she's doing.  That, and there is just so much scary info out there.  She said we're doing chemo first because we want to try and kill any micro-metastasis that may be floating around.  I'm doing FEC every 2 weeks for 4 rounds and then Paclitaxel every week for 12 weeks.  It's my intention to have a double mastectomy with reconstruction after chemo is done.  I've been trying to take the 'I'm going to beat this' and 'I'm not going to worry until there's something to worry about' attitude but after reading some of the info out there (darn internet), I'm kind of worried.  It does seem that my tumor has decreased in size since my first round so that's promising.  Anyway, I am glad that I found a place to talk with other TN patients and look forward to sharing my experiences!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 6:12pm
Dear Julesh,

welcome to our family and sorry you have need to be here..

it sounds, from your treatment, that you may be at MD Anderson Cancer Center? (no need to answer that if you prefer not to)...I hope that is the case as I believe you are at the right place if you are there...

I am sure that you will here from many here...TNBC Foundation is a wonderful resource..

hope the spot on your lung disappears..

good luck to you..

my daughter was diagnosed when she was 36 and she is 43 and NED (No Evidence of Disease).

I assume someone mentioned BRCA testing to you?

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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julesh View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote julesh Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 6:35pm
Hi Steve.  I'm actually not at MD Anderson, I'm at Methodist.  My doctor seems very knowledgeable so that is why I have chosen to stick with her.  I am awaiting my BRAC Analysis results.  It is great to hear about your daughter!  Unfortunately, I think (in news in general) we hear more about the bad news than the good news most of the time so it's promising to hear that people do in fact survive this!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tninalabama Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 7:16pm
Julesh, It is beatable as many folks here have gone without recurrences. I wish you much luck. May your BRCA be negative!

Pam
Dx 11/07,stII bgr3,1/8+, metaplastic, recurrence 11/09, lymph dis 12/13+ 07/10, rad,x28 9/10,02/11 mets

BRCA neg
5-FMC since 03/12
PET 04/12,no progression
Bone scan clear 06/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 7:35pm
Julesh,
There is some thought that Taxol In some people, will make a tumor grow. Many doctors might have the patient infused with Taxol first ( 12 weeks) and then the other chemos. However, you might ask your doctor since Taxol will be given last, if you should have a carboplatin along with the taxol, just to cover all bases.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote julesh Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 7:41pm
Thanks for the info krisa!  What is a carboplatin?  My assumption is that she did the FEC first to try and 'beat' the tumor?  Will definitely bring it up at the next appointment though...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 8:53pm
Hi Julesh,

So sorry you have to join our club.  You'll find the women and men on this site so very helpful.  You are right, there are lots of negative information out there.  Triple Negative often responds well to chemo.  Have you had your Vitamin D levels checked?  Many of us are extremely deficient at diagnosis.  There is a relationship between low levels and cancer.  Ask your doctor to check your levels.  It's a simple blood test.

We are here for you, even if you just want to vent.  This is a great place to get your feelings out and in the process, help others who are going through the same thing.

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 julesh Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 9:41pm
Hi Donna.  I have had my levels checked and yes, they are low (16.4 - normal according to my results is 30.0-100.0ng/mL).  My doctor has me on 50,000 units of Vitamin D once a week.  Hopefully that will make a difference.  Chemo has been kind to me so far.  We're shaving my hair this weekend.  I think that's going to be the hardest part.  I'm not vain by any means, but there's just something about your hair (for me anyway)...  If not for all the doctors visits and medical bills, I wouldn't think I have cancer!  :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 10:55pm
julesh,

I was very low at diagnosis too.  My onc prescribed Vitamin D2 like you're getting.   I never took the D2.  When I joined this forum, the women here explained the difference between Vitamin D2 and D3 to me.  It's the D3 that you want, not the prescription D2 kind.  Here's an article explaining the difference a little better.  We also have a thread talking about Vitamin D.



Prescription vitamin D (D2) less effective than over-the-counter vitamin D (D3) according to a meta-analysis.
The Vitamin D Council
Meta-analysis looks at efficacy of D2 vs D3
Prescription vitamin D (D2) less effective than over-the-counter vitamin D (D3) according to a meta-analysis.

Written by John J. Cannell, M.D.
November 16, 2011
Permission to reprint

SAN LUIS OBISPO, CA -- Many people write me and ask, “My doctor prescribed Drisdol, is that OK?” Drisdol is D2 and the form of vitamin D that doctors write prescriptions for. The body doesn’t produce vitamin D2 in response to sun exposure. It is made by irradiating fungus and plant matter. When you take it, a number of metabolic forms of D2 are found in the body, and some studies show D3 (produced by the skin) is more potent, meaning it is more effective at raising blood levels than D2, while some show they are equal. However, there are few studies comparing the efficacy of D2 vs. D3. Or in other words, which form has better health outcomes, better mortality rates?

Recently, a review and meta-analysis address this question. The meta-analysis study was led by Professor Dr. Goran Bjelakovic.

Bjelakovic G, Gluud LL, Nikolova D, Whitfield K, Wetterslev J, Simonetti RG, Bjelakovic M, Gluud C. Cochrane Database Syst Rev. 2011 Jul 6;(7):CD007470.

He analyzed 50 randomized controlled trials (RCTs) with a total of 94,000 participants that used some form of vitamin D and reported mortality rates as either primary or secondary outcomes. Within these RCTs, 32 of the studies used D3 (74,000 subjects) and 12 of them used D2 (18,000 subjects). He found there was a 6% relative risk reduction when supplementing with vitamin D3, as opposed to a 2% relative risk increase when supplementing with vitamin D2

Amazingly, this study somehow slipped under the radar and neither the press nor I picked up this study in July. Luckily, Professor Dr. Harvey Murff of Vanderbilt University reviewed this study yesterday in the Annals of Internal Medicine recently, allowing the general public to examine the study once again.

Murff HJ. Review: Cholecalciferol (vitamin D3) reduces mortality in adults; other forms of vitamin D do not. Ann Intern Med. 2011; 155:JC5-04.

You would think a paper that took a look at tens of thousands of subjects and analyzed the efficacy of prescription vitamin D (D2) and over-the-counter vitamin D (D3) would warrant a news story or two. To my knowledge, these papers are the first to paint such a clear picture about the efficacy between D3 and D2. While there may be explanations for D3’s superiority other than improved efficacy, for the time being, these papers send doctors a message: use D3, not D2.


Contacts:

Vitamin D Council: newsletter@vitamindcouncil.org

Professor Harvey Murff, Vanderbilt University: harvey.j.murff@vanderbilt.edu

Professor Dr Goran Bjelakovic G, University of Nis, Serbia: g.bjelakovic@ctu.rh.dk or goranb@junis.ni.ac.yu
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2011 at 11:04pm
Carboplatin is a type of chemo drug, also called platinums.
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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