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Diagnosed almost 2 years ago

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*Nancy View Drop Down
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    Posted: Jan 23 2012 at 5:51pm
Good afternoon to everyone!
My name is Nancy. I am 55, married and the mother of 6: 4 daughters and 2 sons (ages 27, 25, 22, 19, 17 and 16). I work fulltime.
My BC was first found on a routine mammogram in early March 2010. I got the definitive diagnosis on St. Patrick's Day. It was Triple Negative, Stage I. I caught it very early. I didn't know much about breast cancer back then. We had absolutely no family history whatsoever.
I had a lumpectomy of the left breast along with removal of a few sentinel lymph nodes. I then went through 4 rounds of chemo (Cytoxan and Taxotere) and completed my treatment with 33 rads ending in mid-September 2010. My main complaint now is the lymphedema, which has caused me 4 instances of cellulitis. 
I have discovered that I am scared now to get my next mammogram, due in a couple of months. Last year's was fine. But with my knowledge of this disease, I feel more apprehensive. While I know my experience over these past 2 years wasn't the worst, I just can't imagine what would happen if it comes back. I'm terrified of not being there for my kids. My own parents both died of heart attacks (Dad in '83 at the age of 59 and Mom in '94 at the age of 64.) I am even younger than them!
I am doing as much as I can to decrease my odds, but who knows if this all really "works"? I had zero risk factors to even get this type of cancer in the first place. I feel like I have no control, like everything is just a matter of fate. So that makes me sad and scared.
My co-workers and friends and family all think I am so strong, so brave...but I am not. I wouldn't dare let them see what was really happening to me. I hid a lot of my pain and loneliness and fear. I am pretty confident ya'll know what I mean, at least to a degree.
I started reading some of your posts today as a Guest. I was needing to feel connected with others who had "been there-done that" so-to-speak. So I have registered and I think I need to listen to your words at this stage of my life. Maybe I can even tell a few of my own stories, experiences that I kept inside.
For instance...my family wondered why it seemed I became so interested in baseball. Going through all of those treatments in the Summer of 2010...I needed a diversion...so I watched a lot of baseball. (My team is the St. Louis Cardinals, btw.)
Thank you all for reading. The youngest will be home from practice soon, so I guess I need to decide what to make for dinner.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rigatonismom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2012 at 6:26pm
Hi Nancy,
Welcome to this forum.  I think you will find some of the most caring and loving people here.  You can ask any question or vent as much frustration as you have.  I am the member of 2 support groups and am thinking of going to yet another.  I read a book by a breast surgeon and she says that you can only heal when you can look to the future without fear and begin to live in the present.  I have been working hard on this but I think it is a challenge for all of us.
Nita
DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2012 at 6:55pm
Hi Nancy and welcome,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

I'm a St. Louis Cardinals fan too.  You've found a great place where you can talk to others that understand what you've gone through and just get it.  I've found I can turn to the people on these boards for understanding and information when others in my life just don't understand what we go through and feel.

Have you gone to a lymphedema therapist?  I had slight lymphedema swelling in my trunk after radiation and the sessions really helped.  They can show you massage and range of motion exercises you can do at home.  

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 Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2012 at 8:12pm
Hi, Nancy,
I wanted to respond to you because we were diagnosed around the same time and our cases have some similar characteristics.  I'm a little older than you and my children are 29 and 27.  My cancer was found when some calcifications showed up on a mammogram I had in Feb. 2010. My doctor sent me to a breast specialist, who found my tumor on ultrasound.  The calcifications were benign.  I got the official news on March 26--we don't forget those dates, do we?  Last year I was quite stressed out worrying about recurrence.  This year I am happy to say that I am doing better.  No matter how much time I have left on this earth, I don't want to spend it worrying about something over which I have no control.  My next mammogram is Feb. 28 and then I'm going to insist on another MRI, since that was really the only test that everything showed up on.  I just finished reading Enjoy Every Sandwich, by Lee Lipsenthal, a victim of esophogeal cancer.  One of my favorite sentences from the book is "Just live life, do your best, and enjoy the moments that life brings."  I know that there are no guarantees, but my oncologist told me that every month that goes by without a recurrence of TNBC increases the odds that it won't come back.  Do I know for sure that that is true?  No, but I sure like to think it is.  I hope that your upcoming mammogram will be just as good as your last one and that you are able to get the lymphedema under control.  Keep in touch!  Wishing you the best!
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote krisa Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2012 at 8:13pm
Nancy, I bet most of us have been apprehensive, to say the least, when it came time for the next mammogram. I am four years out and just went through some anxiety when it came time for my annual mammogram.
Hope you can get relief from lymphedema.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2012 at 8:17pm
Hi Nancy,

Welcome.  I am happy you were able to find us. Everyone here is helpful, caring and most of all understanding of the TNBC journey to one degree or another.  

My case is very similar to yours in age, no family history, diagnosis and type of treatment received (see my information in signature line at the bottom of this post). I also have a mammogram due very soon, this February, and can relate to the feelings of uneasiness. 

I have never had lymphedema, but about 2 months ago suffered a partial hip fracture of undetermined cause, probably related to stress to the hip area. I went from a sedentary job to a very active one and this may have contributed. I am staying off it to heal it and the healing will be checked by x-ray in a few weeks.  

I am glad you were able to be helped through your interest in baseball. Funny, I also started watching more baseball. I also became interested in shows about getting away from it all to a tropical paradise (I am a bit of a dreamer at times).  

Hoping all goes well with your mammogram and that you will be back to let us know you were able to breath a huge sigh of relief. Enjoy your dinner.  

Love and Peace,
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 bashamk Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2012 at 8:39pm
Welcome Nancy!
I'm so sorry you needed to look for us, but so glad you found us! I can vouch for the wealth of information on this site, and the outpouring of love from each of the members. This is the place to come to ease your fears and gain strength for whatever comes next. Such an awesome group!
 
Boy, you sound just like I felt a year or so ago. I just keep telling myself time will make it all better, or at least much easier to deal with. I thought I was handling things pretty well at my mammogram last month - held it together, the doc came in and told me everything was fine. I broke down crying! Didn't even know that was coming.
 
Guess what I'm saying is the fear is normal, along with about every other emotion there is. This site makes a great sounding board...
 
Kay
 
 
dx 6/25/09 age 45, IDC TNBC,
stage 1, grade 3, 1.5 cm
Lumpectomy, T/C x 4, 33 rads
Dx Dec 2015 Stage 4 metaplastic
Cell growth on nerves in shoulder to rt arm; mediastinal nodes; Bone; skin mets
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 10:11pm
You all just brought tears to my eyes. Thank you, thank you, thank you all so much for responding. I guess I needed to talk about this more than I even realized. I see that many of you have a mini history of your diagnosis and treatment in your signatures. Once I figure out exactly what all of that means, I'll have to add my own. (Most of it I understand, but some of it is unknown to me. I think I saw a thread about abbreviations - you can be sure that I'll be using it as a reference.)
One thing I am curious about is if anyone has any family history of any other cancers? My parents, grandparents, aunts, uncles and cousins have no cancer. (I know because once I was diagnosed, I wrote to some key family members and asked.) I am the oldest of 6 children. My youngest brother was diagnosed with non-Hodgkin's lymphoma in 2004 at the age of 43. He went through 2 rounds of chemo and rads and a stem cell transplant and is a Survivor. He just turned 50 last October. My youngest sister was diagnosed with cervical cancer (and mets to the uterus) in 2005 at the age of 37. She passed away less than a year later at the age of 38.
I also see that many of you have your BRCA results in your Signatures. Mine has never been checked. They said it was not needed because there is no breast cancer history. Is this something I should insist upon? Is there maybe the possibility that I have some mutation that I've passed on to any of my 4 daughters?
For the curious...dinner last night was leftovers from the weekend. I cleaned out a lot of space in the fridge last night. We had turkey, mashed cauliflower, cabbage, wheat bread (made in the bread machine) and cantaloupe. Yes, that was an odd combination of foods, to be sure...but my sons eat anything!
I made it through today. And you all helped.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bashamk Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2012 at 10:26pm
No breast cancer in my family. I had an aunt with lung cancer, and another aunt (same side) with uterine cancer (I think - maybe ovarian). That's it, mom, dad, brother and sister are all fine. 
 
I had genetic testing because I was diagnosed at 45. At the time they allowed testing for those with TNBC 45 or younger. The age requirement may have changed since then.
 
Kay
dx 6/25/09 age 45, IDC TNBC,
stage 1, grade 3, 1.5 cm
Lumpectomy, T/C x 4, 33 rads
Dx Dec 2015 Stage 4 metaplastic
Cell growth on nerves in shoulder to rt arm; mediastinal nodes; Bone; skin mets
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Nancy,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

I have no history of breast cancer or cancer in general in my family.  Regarding the BRCA testing, I believe now that anyone diagnosed younger than 60 should get tested.  Most insurance companies will cover it, but it's important to check for sure.  The test is over $3,000 so make sure you know the coverage and what your copay might be.

To get your information so that it appears at the bottom of your posts, go to the upper left side of the screen and click on Member Control Panel.  Click on Edit Profile, then scroll down until you see Signature.  Type the information you want to appear at the bottom of your posts.  Scroll down and click on Update Profile to save your information.

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 *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 11:45am
Thank you Donna, I think I've found the place you directed me to. I'll know if it worked if my Signature appears after I post this message. Smile
Today I am sick with a bad cold and sinus infection. I went to my PCP yesterday. The antibiotics haven't kicked in yet and I am coughing so much, I decided to stay home from work and try to recover.
What is driving me crazy (sometimes), is that it seems whenever I have the slightest symptom of anything, I am wondering if it is a recurrence or a met. Considering that I am in my mid-50's, I know that my body isn't close to perfect, so I expect some little aches occasionally. But I hate always wondering. Does that feeling ever go away?


Edited by *Nancy - Jan 27 2012 at 11:46am
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2012 at 11:50am
Nancy,

I wish I could tell you that it would, but for me it hasn't.  I had a terrible cold/bronchitis at the beginning of this month and my mind went to mets.  I don't know after a cancer diagnosis if we'll ever feel normal again and if an ache or pain will be just that and not mets.  Oh how our minds work!

Hope you feel better soon and the meds kick in.  I know so many people with upper respiratory infections.  They seem to hang around and hard to get rid of.

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 MeMe K Quote  Post ReplyReply Direct Link To This Post Posted: May 29 2012 at 12:35pm
Hi Nancy, I just joined this site and your message inspired me to respond as you are going on 2 years and sounds like you are doing well.  I go by "MeMe" for the grandson who is the love of my life that my only son has blessed me with.  I will be 59 in July and had a single mastectomy on May 16, which was a stage 1, grade 3 triple negative tumor, however lymph nodes were pink and healthy, dr. took half of one to be sure and it did come back negative and that was the first good news in awhile.  My November 2011 mammagram was clear and I just woke up during the night on April 17th and started doing a breast exam...and there it was. Had to be my guardian angels since I normally sleep like a rock Sleepy Smile  I've taken the last two weeks to help myself heal mentally and physcially, but the more I read, the more scared I become.  I have lots of prayer partners - co workers and family who also think I'm brave and strong...me, not so much especially right now.  I meet with an oncologist tomorrow to see what's next and I just wanted to let you know I felt uplifted when I read your message.  These forums are wonderful...
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jun 03 2012 at 12:18pm
Hello MeMe K and I am grateful to have been uplifting to you. I think we all tend to find strength in unusual and unforeseen circumstances.
I suppose it's time I give a little update.
I got my mammogram in April and ALL CLEAR! I was so relieved to finally have some good news again. Last year when I was getting the mammogram, they kept wanting to get another view and another angle. This time they were able to see it clearly the first time. So I didn't need to get squished a dozen times .
Through this forum, I was advised that the correct Vitamin D for me to take is D3. (Thank you, Donna!) I had been prescribed D2. In October 2010, my level was 11, definitely too low. That was when I started D2. My levels were checked 3 more times and hovered between 30 to 41 for 1.5 years. Then I found out about the need to be on D3. I made the switch and my last level was 70. I was quite astounded that it made so much difference. My doctor thanked me for the research that I showed him, so I am hopeful that the next patient he has in my situation will be started off correctly.
I had my yearly check-up with my breast surgeon last month. She said that recent changes in the insurance industry have allowed for more testing for the BRCA1 and BRCA2 genes, which she recommended that I get. So I got the test. And I was not positive. This was another big relief for me as I would have been so saddened to have had to inform my 6 children and 4 siblings that they could have the possibility of having the gene.
I still have difficulty with the lymphedema in my left arm. I got another bout of cellulitis about a month ago. It cleared up again, I think because I am so adamant about calling my doctor and insisting on starting the antibiotic ASAP, especially on a weekend when I can't get in to him until Monday. He is now trying me on a low-dose daily antibiotic to see if it'll act as a prophylactic to the development of cellulitis. I hope it works. I am also still having issues with my toenails, a side effect of the chemo. I had developed onycholysis in January 2011. I am still dealing with the separation on my big toe nails from the nail bed, although it is much improved since the initial diagnosis.
I am actually sleeping better than I did a year ago. I am not sure why.
I have been amazed to have become the "cancer source" recently. It seems that neighbors, co-workers, friends and family members will seek me out for questions and advice when someone else they know has been diagnosed with breast cancer. It's an incredible feeling to know that I am helping another sister while her friend tries to educate herself about this disease.
My 4th daughter just completed her first year at college. 3.75 GPA. We picked her up from the University of Dallas in early May. My oldest son just graduated high school this past Friday. He gave the Opening Address and I was so proud and happy to have been a part of that experience with him. He'll be going off to college in Illinois at the end of the summer. I'll have 1 son left at home. The last time I only had 1 child in the house was in 1985. LOL! He'll be a H.S. Senior and is looking forward to being the only child for a while. Daughter # 3 recently moved to the Chicago area. She was just home for her brother's graduation. She had a "surprise" to show me. (No, it was not an engagement ring from her boyfriend!) She had the pink ribbon symbol tattooed on her left wrist. She said she never wanted to forget the struggle I went through to survive for our family. Daughter # 2 has gotten herself involved in marathons recently. She just completed a 5K. And daughter # 1 and her husband recently returned from a vacation in Florida.
My brother recently asked me if I ever think about my cancer. I could honestly say that something reminds me of it everyday. Even if I am not feeling a symptom or wondering about some weird feeling, there is always something that makes me think of all of us. Every day. I know it is likely the same for all of us. When I think of all of those thoughts, and know that there is a silent prayer said thousands of times a day, I feel comforted.
I hope today finds everyone feeling good and happy.
~ Nancy ~
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2012 at 12:58pm
Nancy,

I have onycholysis too!  How are you treating it?  I've had problems with my big toenail ever since finishing taxotere/cytoxan.  It seems to be getting worse.

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: Jun 04 2012 at 2:39pm
Hi Nancy and all the other sisters who have responded here.
 
June 9th will be the 6th anniversary since my diagnoses.  I have been very fortunate, but it has not been easy.  I think about cancer every day.  Volunteering at the oncology center 3 times a week and having a sister-in-law fighting the same TNBC as us keeps me pretty much involved mentally. 
 
Nancy, I can identify with being a go-to-person.  It has been difficult reliving my ordeal through my SIL, but just yesterday she told some family members that my advice about what to eat during chemo probably kept her blood counts high enough so that she was able to have all her treatments on time.  I am so thankful that I could help her.  She is on her 8th radiation treatment today and has developed some lymphadema in her upper left arm.  She is seeing the surgeon this afternoon to get recommendation on treatment for her arm.   She has told me all along how strong she is trying to be for her husband (my brother).  Yesterday at church she became very emotional and shed many tears on many shoulders.  She told me that she didn't want her husband to see her like that.  I told her that letting her emotions out is the healthiest thing she could do.  It was only her 2nd time back to church since December.   I told her that her tears gave many people an opportunity to hug and speak to her when they might otherwise have ignored her.  
She told me last night that the experience at church had really allowed her to shed some tears and let her emotions out.  She was in a very good mood.
 
I share this to say, "We never know when someone will need our help to get through a bad time," so thinking about cancer often can be a tool to help others. 
 
I love every TNBC sister on this site and am so thankful for the way everyone cares and shares in an attempt to help others.
 
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 - 11/2015-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MeMe K Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2012 at 10:53pm
Nancy, so glad you are doing well!  I'm curious about the vitamin d..my oncologist didn't seem to think it was a big deal and told me I could take my D vitamins (over the counter Nature Made that I stopped several months ago thinking it might be affecting my blood sugar levels/controlled with diet and exercise). He did say to stay away from Vitamin C and E before chemo treatments, but ok to take D. He didn't seem to think it necessary to do bloodwork for Vitamin D level. Would appreciate anyone's input regarding Vitamin D.  I go for echo-cardogram 6/8, has to be done prior to giving adriamycin chemo. I will also be taking texatera and cytoxan starting 6/22.  Still about nervous about side effects, but know I need to do this!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2012 at 7:55am
MeMeK,

Most, if not all of us dx with TNBC have extremely low levels of Vitamin D.  We have a thread on this forum talking about it, plus check out the Vitamin D Council thread.  It's a simple blood test your doctor can order.  If you supplement, you want to take Vitamin D3, not Vit D2.




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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Thanks so much. I will follow up on Friday when I go back for dr. visit.  I know my Vitamin D level about a year ago was 31....my oncologist says the tumor I had removed was one that I had for 2-3 years, he did the math from the growth/size..so of course now I'm wondering about Vitamin D levels.  This is all so overwhelming..getting closer to chemo and want to do all I can to help myself through it.  I so appreciate your information!  Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2012 at 3:13pm
I am exactly 2.5 years post diagnosis today.  Thumbs Up


Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17
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