Calling all TNs
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LOW VITAMIN D3...This morning I've been reading about the link between vitamin D3 and breast cancer, especially TN. Studies are now showing that low levels indicate poor survival times. Anyone have similar info? I was dangerously low at the time of my diagnosis and have not been able to raise the level to a moderate range.
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Hello I'm Tracey in Michigan, found Lump Sept 18, 2012. Few weeks later, Diagnosed TN, Stage 1. Had Lumpectomy with nodes removed. Nodes were normal. Had 6 weeks of Radiation with Boost. Declined Chemo. In December 2016 had swelling under my Collar Bone. Went for Mamogram, it was good, but Dr. Biopsy the swelling. I'm now Stage IV Metastasis to Lung and Brain. There wasn't a Class that explained the severity of my Breast Cancer and the possibility of receiving or not receving Chemo. Drs. Didn't take the time to educate me and I've never been Sick my entire life, so I didn't know what to ask.
I started Chemo Feb 2016, until a few days after my birthday (51), I lost my ability to walk and function because of Brain Metastasis they wasn't being looked after. I had Whole Brain Radiation with Theraphy, but while I was hospitalized I wasn't receiving Chemo. After 3 weeks in the Hospital I was released (Damn Medical Insurance) not quite well. Went to visit my Oncologist to find out about getting back on Chemo and while I was waiting for New Chemo, in Pill form, I developed a Plueral Effusion (Fluid around the Lung and Heart) had to have Fluid Drained, just was released from hospital 10-21-2016. I'm now on Oxygen.
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((Sister-Sister)). Are you still seeing the same oncologist? Gentle hugs to you.
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Hi Tracey, I'm also from Michigan. Just wanted to say hello and welcome, there are a lot of wonderful women here. I'm so sorry that you are having to deal with all of that. Sending you positive thoughts and hugs.
~Kelly
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My wife is over 3 years post chemo and still gets strange aches and pains and still has "frozen shoulder" now and again. She kind of writes it off as the "new normal".
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Sorry to say that even after 6 years, the aches and pains are still there. I also developed a frozen shoulder after chemo. My port became infected 5 days after my last chemo, so it immediately came out, but the wound was left open due to infection. I didn't lift my arm much for 7 weeks while it healed. I then realized I could barely move my arm. It took 10 months of PT to get it back close to normal. This was on my opposite mastectomy side! My MO told me that frozen shoulders are quite common for women who undergo drastic hormonal changes (thank you chemo). My body just seems to be sensitive everywhere, ribs feel sore all the time (I didn't even have radiation). Cancer, the gift that keeps on giving.
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I'm so very sorry, Sister-Sister. It seems like the oncologist should have discussed the higher risks of triple negative so you could balance them against the chemo risks to make a fully informed decision. This cancer is so aggressive and sneaky that getting chemo wouldn't have guaranteed that you were safe from metastasis and chemo can cause its own life altering and even fatal complications, but it must be frustrating to feel that you didn't have all the facts regarding chemotherapy.
My heart goes out to you. Do you have family or friends nearby to support you during this challenging time?
Lyn
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Hi All,
I, too, am part of the worriers here, and I feel for all of you.
Saw my breast surgeon one week ago, today, who didnt see any areas of concern (said she'll see me next october), but agreed that if my back and hip aches continue, to schedule an mri. I am working on that with my onc. To make me more NUTS, - yesterday i see a slightly pink area on my left breast, about the size of a dime. I have an implant on that side for almost 2 years with no issues. If I run my fingers over the pink area I can feel something underneath, not much, but something. I am tryyyyyyying not to panic. I immediately think IBC that has spread to my back and hips. My surgeon squeezed me in last week, i doubt they will do it again so soon!
Any words of encouragement? Anyone had a pink area that turned out to be nothing?
THANKS!
Hugs and BE WELL wishes to everyone here!!
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Hi anotherNYCgirl,
This is only a few times that i've been in this thread and I just saw your cancer history.
You are already an ICON as far as surviving cancer is concerned. From 1998 to 2016, you hang tough.
You don't need any words of encouragement anymore coz you are a true-blue battle-scarred warrior. What I think you should do is the reverse, try to encourage others, helping and comforting them, and as you do this, you will be blessed and find yourself at peace and with a sense of purpose in life. Makes sense?
I can only offer prayers for your complete healing as I believe that Group Prayers are much better than individual especially if we are praying for a common cause. You can also do this for others, for all of us to be delivered from this dreadful disease.
May God be with all of us.
gmmiph
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Cathytoo, from the following link, you may find the information for Why and How to take Vitamin D to prevent recurrence.
http://forum.tnbcfoundation.org/vitamin-d3_topic5338_post129610.html?KW=Vitamin#129610
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Welcome back math666, and thanks for the info. How is your wife? Can you share some of the changes she made to diet, supplements, vitamins, etc?
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gmmiph, thank you for your prayers and prayer warriors. and I agree, another is very inspiring!
Sister, we are so glad to meet you. hugs from everyone to you!
Cathy, I started upping my vitamin D3 a couple of years ago, by taking a supplement . It went from 40 ish to 60 ish, which is a moderate elevation. literature says D3 helps with recurrence, neuropathy , aches and pains, and many health benefits . I do think I feel better.
COCKER Spaniel, (hugs)
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Ladies,
Just turned 70 earlier this month. Will be 4 years out in December. Looking forward to that Cancerversity.
As to Vit D3, mine was very bad 8 months out from surgery after had to stop chemo. My surgeon & primary told me to take a supplement. Yes, even in Florida. I have been taking liquid D3 ever since. 1000 IU per drop, 4 drops every other day. My level is great about 75% of max level. Steady for a long time now. My MO does not take readings so my Primary does. Every 6 months I get my B12 & D3 levels checked. I take both supplements. Doing great on levels & feel that helps. My only #}}%^* right now is arthritis. Starting turmeric & golden milk to help. So I'll see.
Best to all, prayers everyday for all of us fighting/surviving this menace.
Marsha
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Thanks Meadow. You look radiant and beautiful in your pic.
May strength and peace be with you always sis.
gmmiph
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Thank you so much gmmiph and Meadow.
My wishes and prayers are always with this wonderful group, along with so much appreciation for your comradery!
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B9!!!!!!!!!
Fibroid mass... Thank you so much for all the kind words, thoughts and prayers. What a ride! I'm getting off it now... and running for the exit to this theme park!!!
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YAYYYYYY Curly!!
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Oh CURLY ! You made my day!!!!
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Super, Curlyq1974!!!
Lyn
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Curly- make sure you complain to management on your way out!
I have a PET tomorrow and am scared to death because I have a mass where my primary was and the onc ordered mammo and ultrasound and they said the mass compressed and tumors don't compress but boy it feels like a tumor to me....I need a onc to givee a little kindergarten cop "it's not a tuuuma"
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nrsteph , in your pocket for tomorrow , try not to be anxious. update us when you can.
Another, you will enjoy this....
As I have shared earlier , I substitute teach, and yesterday I had the immense pleasure of being the sub for my 6 year old granddaughter in first grade! We had the best day together! I wanted to share a little funny comment from one of her classmates....I was teaching their math lesson, and I thought, "we are doing pretty good here, I think they are getting it", when a little brown eyed boy raises his hand. I called on him, thinking math of course...."Do you have sharp teeth?" This was his question! Sharp teeth! He had a new tooth grow in, remember when they were new they were kind of sharp? "No, mine aren't really sharp" was my reply, grinning. So much fun in first grade, so much for math!
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This is my granddaughter Jade, looking up at me so lovingly while we were in computer lab. I was her class's substitute teacher. Best day ever.
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nrsteph...wishing the best for you tomorrow
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Meadow....absolutely precious
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hi all,
meadow, i thought the pic you showed was you. what a beautiful resemblance. i guess it is in the genes. minus the big c, of course.
hi curly, really happy for you
hello anothernyc, cathy, vlh, nrsteph, and all, i am deeply praying continously for our complete healing, together with our loved ones.
take care.
gmmiph
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Meadow....absolutely precious
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gm, Cathy, thank you for the kind words!
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gmmiph...."Hi right back at you." It's so nice to get your daily "check in" message. I hope today was a great one for you.❤️
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Curlyq1974...your news is the best I've heard in a long time. YAY‼️‼️‼️
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Meadow, - loved your story! Your granddaughter is such a cutie! (and looks so much like you!)
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