Calling all TNs
Comments
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keeping my Vit D level high is something that I work very hard on...take 5000 iu's per day...try to get some sun..but in Ohio in winter...kinda hard to do...that's wear the birthday suit comes in..Annie and Kathy....!
My goal is to get it to the 80's....hard to do..has taken almost 5 years to raise it from 40 to 62..thanks for the study Wren!
Annie...if Kathy and I ever win big bucks at the casinos we will be there to eat those dang cream cakes....they sound soo good...
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Titan and Kathy obviously it is different for you girls on getting a script for Vitamin D but my doctor said the government won't fund it ???? I haven't ever taken it before but that seemed double dutch to me. Why ever don't they prescribe it. In the winter I wouldn't get 20 mins of sun per day and as I work I probably don't get it in the summer except for weekends. Friggin stupid really isn't. They won't prescribe to keep you well. Go figure. How do you girls manage to get enough Vitamin D?
You just keep playing at the casino and you will soon be out here in NZ. What sort of money do you play for. We have a big casino in Hamilton and another in Auckland and they seem to pay out big money and also you wins car's and things.
Gilly so glad you liked NZ. Christchurch is lovely. When my eldest daughter went to England to find her birth mother I told my Mandy and Alan that I just couldn't stay at home for Christmas because I would miss her and my 3 year old granddaughter too much. Mandy organised us to go down to the South Island on holiday for two weeks over Christmas. She is such an organised girl. Everything was organised from the start of the travelling and all the motels etc. right to the end. I didn't have to think about a thing. We spent New Year in Christchurch and it was marvellous. We went to Queenstown. Nelson, Blenheim in fact everywhere but my favourite was Lake Wanaka an hour from Queenstown. It was so beautiful with its turquoise lakes and the scenery was marvellous. We had a great time and it helped get me through Christmas without my other girl and my little babe. I do hope you come back sometime and maybe do the North Island and come to Taupo. Would be great to meet up with you.
Well I have cleaned my whole house today and it looks lovely. Not really a chore cause I really like cleaning (odd aye). To all those ladies finding it hard to keep up with chores don't worry your energy will come back. When I was going through chemo I didn't care if the house looked like a tip, I had bigger fish to fry so to speak. My old feller did all the lawns and weeding. So everything is ship shape for the next week at work.
Have a good day tomorrow and I hope any of you going through side effects don't find them too bad. Just hang in there, things will get better.
Annie
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Just stopping in to say "hi". I'm 19 days post final chemo and 11 days until surgery....just enjoying the relative calm between the two.
I'm also trying to get my Vit. d levels up. I take D3 supplements, but does anybody know if it does any good to lie in where the sun comes through a window in the wintertime? I tried that yesterday with bare skin. Didn't know if it helps any, but I felt nice and warm....like a cat lying in the sun.
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Dear Simplelife,
I was already told by my MO that Vit D through windows doesn't count on my daily need for sunshine. It has to to with UVB rays not getting through the window & they are what produces Vit D.
I also take Vit B 12 as that is also low for me. I am so glad I asked for copies of blood tests, prior to BC, from my PCP. They gave me they old levels to aim for.
I go this coming week for my every 3 month blood & urine tests. I see my BS & MO every 6 months unless tests indicate or I feel something.
Sorry it doesn't count to your Vit D level....but hey if it felt good...go for it!!
Marsha
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Simple I don't know whether it does any good for vitamin D by lying in the sun by the window but it sure sounds good. Hope you have got a good book, some music playing softly and can nod off. Lucky girl.
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Simple, my Onc said the same thing - that Vitamin D must be from outside, not through windows. Although, when my cat got SCC (skin cancer of the nose) when I researched it, many people with white cats were keeping them away from windows - he was a sun bather, but he lived outside before he adopted us.
I also read that the D is best when 60% of your body is exposed.
When I was dx'd my D was at level 12. After 6 months I retested it and it was at 40. It takes a long time to raise D levels. I use the Source Natural drops, and I place them in my warm green tea. 5 drops is 2,000 i.u. I like the drops because I can control how much I want to take. Every day I take 6,000 i.u. ... but if I hadn't been in the sun for several days, I will drop a few more in ... or sometimes I will split it in the AM and PM. Just recently I started dropping them straight on my tongue, thinking they might be more potent than floating around in green tea.
Thanks for all the great info Wren!
You all have inspired me to go get exercise outside today, instead of inside. Hope you all have a great Sunday!
Vitamin D and TNBC
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Simplified, I am taking AC now and finishing my cycle in two weeks. I am to start taxol then I think how is it? what was it like compared to AC?
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Tek...everyone has different se's from chemo...but as far as the treatment taxol takes longer to infuse...they will give you tons of benadryl...plus I had to take a pill (I forget what it was ..chemo brain..maybe) before treatment..I remember having to set my alarm to wake up and take it. They will watch you closely for the first 15 minutes of infusion to be sure you don't have a reaction. they will also monitor your blood pressure closely because it can drop due to the taxol....that sounds like a lot of stuff but once you know you aren't allergic it's no big deal...I didn't have a port and the constant blood pressure readings HURT...so eventually the nurses (or me)..just took the dang thing off...as far as se's..not too much except a little neuropathy (numbness in feet) and my legs ached...hard to sit still for long and took awhile to straighten up when standing.....there were some good things though..my mind felt clearer. food tasted better and I started to get some peach fuzz on my bald head....I felt more like ME....with AC I felt like I was in a fog but my friends and family didn't notice any difference!
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inspired - I just got my 25-hydroxy vit d levels tested and I am at 68 - I was at 41 a year ago - so I am quite happy about that. I take 5000 units of Vit D3 every day, 3000 units in the morning and 2000 units at dinner time. We have to pay $65 to get this test done - do you have to pay, or is it covered by your health plan?
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Tek, are you getting taxol every week or every other week? It's a bit different depending on how often you get it. I had 12 weekly infusions.
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Tek - Titan covered Taxol well and she's right that everyone is different. As to overall energy and health I found Taxol to be easy. I know that I had to take a steroid (that the pill you're thinking of Titan?) but it was given to me prior to the injection. I was initially given Benadryl. Benadryl knocks me out cold, and it was what stopped me from going to treatment without someone. (Have no siblings and asking people to take time off from work to accompany me bothered me). One of the wonderful ladies on here told me that as long I had no initial reactions.....that Claritan could be used instead of Benadryl. The Claritan allowed me to go to the last 9 of my treatments alone. I did get severe neuropathy in my feet. One of the things that they recommended at the start of treatment was that I take a combo of B vitamins to help prevent neuropathy (sorry, I don't remember what specific ones, and I can't say that they helped). I also had the joint stiffness that Titan mentioned. I used to refer to it as the "chrone shuffle". The joint pain has gone away, but I still have numbness in my feet, but it is definitely better than the initial burning pain I had. If you get severe neuropathy you definitely need to mention it to your MO. (I only had 2 treatments left by the time it got severe, so I chose to continue......but it is a symptom that they consider switching treatment with)
Annie .....you enjoy housework????? To hell with going there, I'm buying you a ticket to come here! I'll cook you anything you want.
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My PCP (who is not my wife's PCP) has agreed to prescribe Metformin for my wife. So, guess who her new PCP is? We have an appointment with him next Monday. He is also going to test her Vitamin D levels.
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Has anyone heard of "Extend" shakes? I happened upon it in the supermarket by accident. It's a shake for diabetics that claims to control blood sugar for 9 hours. I wonder if it would have any value for my wife since she is trying to stay "low glycemic" with her diet.
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I had an appointment with my BS today which really bumped me out. She said as I developed bc at such a young age (34), they are concerned about my prognosis. 30-40% TNBC will have the cancer come back anywhere else in the body? What the heck?!
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jianchi-
Those numbers don't sound fun at all! Could I ask what your stage was? I'm curious because I was dx at 33 and I'm almost finished with chemo so we haven't had the big "what's next" talk with my onc.
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Hi BreezyH: I am stage 1, grade 3, with no positive lymph nodes. I have 2 more chemo to go, and am waiting for my genetic result which should come back early March.
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30 percent early stageTnBC recurs. This is what i read and hear all the time too. But what does early stage mean. Is it a combination of stage 1 and 2 and 3a?
I hear few stage 1 patients with diagnosis like, no positive lymph nodes, no lymphovascular invasion, clear margins etc have a recurrence/ spread to another organ.
It scares me too. Jianchi- You and Breezy and me got diagnosed at a young age ( from disease point of view). TNBC in younger women has a bad prognosis as compared to women diagnosed after 40.-statistics say. Maybe our tumors are more aggressive in nature or maybe younger women are diagnosed late, hence contributing to those stats.
I asked my MO, and he says, You can't live in fear. Finish chemo and go back to normal life. I asked my surgeon and he says stage 1 cure rate is 92 percent after completion of treatment. No one mentioned a number as high as 30 percent.
But who knows? If I happen to be the unlucky one I will get it again. No one can say. Thats what makes cancer such a deadly disease because, the complete science of the disease, is not yet known... we have no other option but to go by statistics.
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"I asked my MO, and he says, You can't live in fear. Finish chemo and go back to normal life."
Forgive my sarcasm..... but easy for them to say. Little harder to achieve when you walk in our shoes. *hugs everyone*
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Agree with Kathy they don't and hopefully won't walk in our shoes. Nobody can say what your stats are. Grade 1 with no nodes is supposed to be great. All TNBC's seen to be stage 3. I have a 50/50 chance of it coming back and I am stage 3a, but again nobody knows and we are all different. I had four nodes with one of them encapsulated so my BS took them all. I think a part of us will always live in fear of recurrence so our option is to let fear consume us and let cancer take more of our lives from us or go on and live as best we can and push cancer to the back of our minds. I know its hard but as time goes by stats gets better and better. I personally believe that if our surgeon has done a bloody good job and got it all at the time of surgery then we stand a good chance but again who knows.
AL Husband might be a good idea to talk to your doc before your dear wife starts taking stuff for a diabetic. If your wife has a normal HbA1c, why shake it up.
Titan was that a diabolic picture on facebook or what. If you paid me five thousand dollars I wouldn't walk down the road with him. It was obscene. Yuk. Kathy you will have to go on my facebook to see it but if you ever bring one of them home........................................ Have you both won anything lately.
Yep I enjoy cleaning Kath. Always have, except for when I was going through chemo.
I had an allergic reaction to Taxol and found AC was better in the long run because I now have numbness in my hands. Also have lymphoedema in my BC side which is a pain. Trouble is I forget when carrying heavy things and just do it so it's my own fault.
My old feller Alan was doing some gardening today with some help from ................................you guessed it .........Chloe. First she walked off with his gardening gloves, then she took the bottle of liquid fertiliser and he had to chase her to get it back and finally she dragged the little spade he had been using and dragged it all the way up the driveway. He said the sound made him think I was on a skateboard and he expected to see me go flying past. As if. Anyway don't own a skateboard!!.
Thinking of all you ladies on here and wishing you all well and very little side effects if any. Big hugs.
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I was going through a page from MDA website, the link is
http://www.mdanderson.org/newsroom/news-releases/2...
There is this paragraph in the article, which says
"Triple negative disease - breast cancer that is estrogen, progesterone and HER2-neu receptor negative - accounts for about 15 percent of all breast cancers. Currently, it's an area of much research focus in the breast cancer community because: it lacks effective targets effective for anti-cancer therapies; chemotherapy is only effective in about 40 percent of patients; and in those that do relapse, the disease is highly resistant and patients die quickly."
what do they mean by this- chemotherapy is only effective in about 40 percent of patients? we generally hear that tnbcs are in particular more sensitive to chemo as compared to hormone positive cancers.
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IMHO all of these statistics are whacko since they only started seriously studying tnbc relatively recently (compared with BC as a whole population and ER and PR positive BC).
That's why we have so little to rely on after surgery chemo radiation. They just are beginning to truly look at us. That's why we get different stats from different doctors and studies.
At first I went bonkers with the stats that were quoted to me. Then I decided that diet and exercise and certain supplements (e.g. Turmeric, vitamin D) and getting and staying at a healthy BMI, and getting on Metformin was what I would do. I can't control what will happen once i continue to do these things except keep up with the research and perhaps add to them.
Eventually, about six months after my bilateral mastectomy (i had chemo first) I stopped thinking about TNBC stats except in the sense that they, flawed as they are, help me keep my priorities in life on target.
TNBC, thank heavens, is no longer the first thing I think about when I wake up in the morning. I never thought that day would come when I was going through treatment and for months after treatment.
Life is waiting for us to join back in when we can and take the few gifts of BC (e,g., more focused priorities) to make our lives better!
Hugs,
Peggy
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My MO said the same thing and I just rolled my eyes. I was 33 at dx and although I never asked my MO for my prognosis I am smart and know being dx so young doesn't help the situation. It comes down to 50/50 chance it will come back. I live in peaks snd valleys of fear but I just try to push through it so it doesn't consume me. hoping for a good stretch!
My son turns 4 in two weeks and my daughter is reading...great milestones.
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i guess tht is the only way to move ahead.
my chemo is on, 2 more left. just checked my vita d levels which came pretty low.
my oncologist gave me supplements. asked me not to have it during chemo if it makes me nauseated. ( since that is the biggest complain i had through out) i asked him does lack to vitamin d make my chemo less effective and he said no.
can anybody give me a little more information about vitamin d, chemo and cancer
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Hi I am not triple negative but wanted to share this. This is good overiew of TNBC:
Speaker Bio:
Lisa
A. Carey, MD, is the Richardson and Marilyn Jacobs Preyer Distinguished
Professor in Breast Cancer Research in the UNC Department of Medicine,
Division of Hematology-Oncology. In September of 2012, Dr. Carey became
the Division Chief of Hematology and Oncology as well as the
Physician-in-Chief of the North Carolina Cancer Hospital. At
UNC-Lineberger, she is the Medical Director of the Breast Center,
co-Leader of the Breast Cancer Research Program, and chairs the Oncology
Protocol Review Committee. She became the Cancer Center’s Associate
Director for Clinical Research in 2010. - See more at:
http://www.cancernetwork.com/peer-exchange/triple...0 -
I don't post much anymore, but always catch up with reading. Fear of recurrence is natural, but eventually you learn to set it aside and move on. No matter what oncs say, the truth is, each of us has a 100% chance of recurrence or 0% chance. I prefer to think and hope I belong to the latter group. It's true that BC diagnosis at younger ages suggests a (relatively) higher risk factor, but that can be for all kinds of reasons, for example being BRCA+ (for which there are risk-mitigating treatments) or simply living longer....
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I am still waiting for my genetic result to come back when there are 2 chemo left for me. I had a lumpectomy prior to my chemo. My BS says that if my genetic come back negative, I can be done with surgery, but a mastectomy can lower my risk of cancer coming back to my breast, although it cannot lowing the risk of cancer coming back elsewhere in the body. I am really afraid of more surgery, however, I want to live as long as possible for my family. My son just turned 6, and I keep on thinking how wonderful it will be if I could see him going through college just to make sure he will be OK for taking care of his life...
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Hi luah, I'm also from toronto but I now lived in markham. I'm at stage 3c triple negative, this seems to be such a late stage and recurrence seems to be on my mind everyday. I will finish my last Chemo in two weeks then rad at Sunnybrook. Just very scared and worry on what's gonna happen after treatment has ended. How do you stay positive?
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Hi jianchi, I know exactly how you feel, I pray everyday hoping I can see my son graduate, get married and have kids. How are you handling chemo? We have to stay positive and just pray for the best.
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I agree Luah. Stats are just numbers that stress us out. We all know by now that cancer follows no rules- it does what it wants when it wants. I do my best to ignore the numbers and just live and yes I live in fear (not constant fear) of recurrence just like everyone here.
When someone asks me the stupid question, "so what do you think gave you cancer?" I simply say that I think there is something genetic in our bodies that reacts to outside factors like the environment, food we eat, products we use, etc. and we will probably never know what "gave" us our individual cancer. This is just my opinion of course, but I hope it conveys the message that cancer is a crapshoot- we just don't know. I feel this way about recurrence too. Yes, we can change our diets, exercise and remove certain products from our lives, but will it make a difference? I hope so, but I just don't know. Some of us do have a known factors that can contribute to a diagnosis or recurrence, but most of us don't. When people ask me if I'm "cured", I just say "I don't know." Sorry for the ramble, just the way I feel about things.
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AL Husband please let me know about the extend shakes, I am a diabetic. I have been using the Ensure Lo sugar high protien for now.
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