Calling all TNs
Comments
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Kathyrnn - I too had tears in my eyes when you said that - I am 54 and my youngest graduated college last May - My two boys I know are going to do well in life - I know my kids will succeed and I am truly blessed.
My heart goes out to all of the young mothers and just young women who have not had a chance for as many memories as I have had - I just hope we can all continue to make wonderful memories - stay strong and know we are all here for each other.
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I too feel saddened when I hear of you younger ladies going through this crap...I was diagnosed at 49 which is still kind of young but not my 30's in any way... bc is "supposed" to be an older women disease damn it...and though I want to see my grandchildren someday I am grateful that my kids are 23 and 25 now....they can be on their own....
oh..and Annie...re the FB pic..the only thing I can think is that the lady must be proud of her man's "package" lol
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I too feel sad when I hear of young women diagnosed as I was 44 (48 now), but my feelings are much the same as theirs- my kids are young- 11 and 8. I just want to be around to see them grow up. Stupid cancer!
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Hi all,
I don't post often and yep - it's a crapshoot.
I'm 3 months post chemo and just had my last part of surgery this week - YAHOO! I'll be a year cancer free in May.
It sux it's affecting so many of us younger ones, Kathy I'm only 37 and I completely resonate with what your saying. You know when my babies were born I prayed they would be happy and healthy and to give me anything awlful that life was going to throw their way, sometimes I wonder if that's why I got cancer - gladly to spare my babies!!!
I'm also glad it was me and not anyone of my beautiful friends, I'm strong, I'm positive, and it has completely changed my outlook on life. I'm scared it will come back - but I've reached a point post diagnosis where i understand that that part of the journey is out of my hands and I just need to get on with living and create wonderful memories for my small children, and god willing still be here to see them do all the wonderful things life has in store.
It's a crapshoot, but there's life after the crapshoot - and it will be anything you want to make it!!
f^%k you cancer and your statistics, this triple negative chick is stronger than that!
Love to you all, you are strong beautiful woman!
Ange
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At my MO's office, there was a young woman who came in with her son who looked to be around 8. I had been in a funk for several days, wondering "why me?" When I saw the two of them, it not only slapped me upside my head for feeling sorry for myself but also gave me a feeling of overwhelming sadness for this young family. I am 54 and my son is grown so I am in the same stage in life as so many of you.
For the young women - fight like hell and kick FC's a$$! Although we can't take away your cancer, we will support and encourage you in the fight. You CAN and WILL do this.
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My wife was 29 when she was diagnosed the first time with Stage 4 Lymphoma. 46 the second time with TNBC. She can validate what you ladies are saying. The big difference for her was that her daughter was 6 the first time, 23 the second time. She has had two distinctly different perspectives. Wishful the first time for the chance to see her daughter grow up. Grateful the second time that she was granted that opportunity. Of course, fearful both times.
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lin123: Personally, I found the first 18 months following treatment to be the hardest. The psychological effects of a BC diagnosis are way under-estimated, imo, especially for TN when there is no ongoing treatment. What I found helpful was to take power over things I could control. Research shows that a low-fat diet with regular vigorous exercise helps reduce risk of recurrence, so I concentrated on doing that. I was hyper vigilant to every little ache and pain, and went to my onc for any symptom that endured more than 2 weeks with no explanation. As a result of unexplained symptoms on 2 occasions, I had a bone scan and neck CT to rule out anything going on... these aches and severe worries all eventually receded into the background. More than 4 years out now, I can say that BC is NOT the first thing I think about when I get a little pain somewhere... it's never far from my mind, but not terror-inducing. It takes time... a long time. Wishing you well! (I had surgery at North York, chemo and rads at Sunnybrook.)
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I was told my vit d levels were low and my dr has me taking 5000 iu a day. I just get mine over the counter. A few months after starting this is when I was diagnosed with BC. What is the link between the 2? I will be 3 years from diagnosis next month and I am so excited! I was told a 3 year mark and 5 year mark with no reoccurance are great! I hardly ever read studies, statistics and etc. I am living my life one day at a time and not letting this crap called cancer control me!
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true..getting a diagnosis of cancer and that too tnbc, at 34 with a 5 year old at home came as a blow. unexpected.
i conceived at 29, keeping in mind that having your first child before you turn 30 is good. never had hormonal pills. never smoked, and dislike alcohol. i breastfed my child exclusively for 6 months and then till 2.5 years. I used to sometimes get irritated but then used to remind me that breastfeeding her is good for her as well as for me. my chances of getting bc reduces ( which anyway i believed was close to zero since no one from immediate family ever had cancer..at least i have info uptil 3 generations up). healthy lifestyle, hardly eating out, having 4 to 5 servings of fruits and veggies everyday since childhood, working out, being fit.. but still it happened.
i was working on my own start up venture and enjoying my life bringing up my beautiful princess..when this happened. and trust me, when i got the news the only thing on my mind was my child. suddenly all my aspirations of watching my company grow, completing my Phd etc etc went down the drain. i was ready and am ready to let go of everything, but not her
today was my 7th taxol chemo and my oncologist said...after completion of the 8th and last chemo followed by rads, i will be under follow ups and if i some how cross 3 to 4 years..he will assume i am cured.
i have promised myself something post this diagnosis.
That.. if i survive long enough to just see my daughter grow and become an adult. i will be happy. and watching her complete college, get married and get to see her children will be an added bonus! i am perfectly ok now to leave my career goals behind, if needed.
so cancer..... if it doesnt recur or come back and i am allowed to live that long, i will always consider this entire episode as a blessing in disguise, because it suddenly set my priorities in place!! I will never regret keeping my work behind. All the extra years with my daughter and husband will be enough, more than enough actually!!
.....just getting overwhelmed!
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EnglishRose - thank you very much for that interesting link!
Breezy - I like your MO too. That your "peace of mind" is important to him...speaks volumes about him.
BanR - I read that link you posted and was also shocked to read that chemo was only effective in 40% of TNBC. It is in direct opposition to what I was told when starting treatment. Was told that since my TN was Grade 3, the cells were rapidly dividing and that made them extremely susceptible to chemo. (Chemo targets rapidly dividing cells). Thank you for that link. Also for someone who is "overwhelmed" it sounds like your head and heart are in the right place.
PeggySull - can you tell me a little about the effects of turmeric?
KSMatthew - I was also diagnosed with a low D level shortly before I was diagnosed with BC. I started taking Vit D because of something I read in TNBC Organizations "Guide to Understanding" (http://www.tnbcfoundation.org/tnbcguide.htm). If the guide hasn't been updated since I downloaded last downloaded it, the following quote is on page 38. "Other early studies associate low Vitamin D levels at diagnosis with higher risk for recurrence. Further research will help us learn more about these questions". This also came up in a discussion with my MO yesterday. She said that there is no evidence that having a super high level makes any difference, but that getting your Vit. D into the normal levels is definitely important.
Well ladies (and gent) I had a follow-up visit with my local MO that was both funny and helped me make an important decision. (Now that my chemo is done, I am faced with the decision of returning to my original MO in Boston or staying with my local MO). After yesterday's visit, I have to tell you that I may have to turn in my "sisterhood card". *big grin, schooches over on bench next to ALHusband). Yesterday my MO decided to do a PSA test on me (prostate-specific antigen). She was laughing just as hard as I was and said "I'm not going to give the lab tech a heads up, let's watch the poor guy lose his mind". (also, I may have to pay for it will make my insurance equally lose their minds) And she was exactly right!!! He couldn't get the computer to even accept the test. He went to check with her that it wasn't a mistake. (I wasn't any help to him.....I was too busy sitting there chuckling). She provided him with a study that documents the correlation between AR+ BC and PSA. Everything that was discussed in my visit....made my decision easy. This is a MO that is willing to "think outside the box". Because I'm high risk, she is very proactive about scans to monitor for relapse. She has no problem considering a prostate chemo that is still in clinical trials if I relapse. Having that study and testing my PSA, shows that she has spent time thinking about my specific case. I will maintain my association with my facility in Boston through my BS (and can return there if necessary) but "standards of care" aren't working for me and the ability to think outside the box is important to me. Excuse but I'm off to continue laughing about my "prostate"!!!
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My Kathy you are an absolute gem to say what you posted. But you have to be around for our mum and who would make me laugh until I nearly pee myself. Plus I have to be here to celebrate the hole in the roof with the tree sticking out being fixed. (That will be one big cyber party) It's got to be done sometime soon and I hope you manage that so you are safe and sound and don't keep getting wet when it rains but you can't keep hanging baubles and tinsel on the tree every year. lol
BanR your post brought tears to my eyes. I hope you manage to do everything you want to do like seeing your lovely girl grow up, meet her first boyfriends, sus them out! and then see her go on to get married and have babies. When my Mandy got a lump in her breast I made all sorts of promises, bargains and compromises to God to take me, not her. Thankfully she is ok because I wouldn't want to live without my kind, beautiful, gentle girl. So I hope to God you get everything you hope for.
AL husband I believe in fate and what is in store for us will happen and there is nothing we can do about it. Look at BanR no smoking, no drinking, healthy eating etc. I do think cancer is a crapshoot but I also think other people with illnesses, injuries etc get a crapshoot too. I always believe there is someone worse off than me and I wouldn't want to trade my cancer for what some of them are suffering with. I am happy and healthy today but there are lots of people out there that isn't. I say live for today, hurt nobody and do your best to help if you can. Yep you can get hit by that bus but public transport is so unreliable and then you could stand in the road and get hit twice!!
I have a day off today for a public holiday. My old feller brought me a lovely new car yesterday and I've told him he must clear all his junk from my side of the garage so nothing happens to it. True to form he is out there now clearing my side then I will take him for a nice ride in it. If you are feeling well, live for today and savour every precious moment of it.
Hoping for a happy and healthy day for all of you. xxx
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Just one other important thing. There is nobody I admire more than our Linda who when her beloved daughter died, put aside her own grief to love, cherish and care for her daughter's young daughter. There are no words strong enough to describe the awe that I have for this lady. She brought up her granddaughter in just the way her girl would have wanted and made Bryanna into the lovely girl she is today (albeit what all youngsters go through, coming home to get decent food and comfort lol). That in my books, when you are going through cancer yourself, dealing with the grief for your own daughter and then caring totally for Bryanna is to me the biggest unselfish sacrifice anyone could make for their child. As always, I wish Linda nothing but love, happiness, good luck and good health always.
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Alright Ladies & Al Husband too,
I am now going to admit my shameful secret.
Prior to diagnosis I was healthy. Good blood pressure, blood levels on all categories. Active in my yoga class & even walked 2 miles 2 x a week. Weight in good range for my 5'8" height (136 lbs). Rarely sick.
Well diagnosis & bingo I returned (in a flash) to stress smoking! Within one month - yes surgery & recovery - I was up to 2 packs a day. Smoked during recovery from chemo. Stopping chemo & surgery for port removal. Hypocritical I know but I regulated & cleaned up my diet, got back slowly to yoga. But couldn't give up the "cigs". I know very bad & it increased my chance for recurrence. But just couldn't stop.
Well one day watching news show they talked about an "app" yes phone app to help stop smoking. People saying it really helped. So I thought I am a phone addict so why not. (I have the iPhone 5S). Really depend on my phone. So for $ 6.99 I bought the app. Opened & read the beginning instructions.....it said to listen to the beginning tape with headphones. I decided to see how long I could go without a cig & if needed then I could use the app. Well my last cig was January 11th. A few times I have wanted to scream but just said tomorrow will be one day more without them! I still have not yet used the app, it is a mental crutch to have in reserve. I am proud of myself , but the point of this whole expose' is that we all have to find within ourselves the right time for acceptance, forgiveness, courage to carry through, or what ever we are needing. It can't come from others telling us to stop, or do this or do that. Or even telling us to get over it! It had to be on our timetable. Which is different for each of us. I am proud of each of us, as we are all doing the best we can at "this" time. Hopefully better tomorrow but today we did our best. With that acceptance I have found peace & realization that tomorrow is another day. No matter how many more I have, I'll do my best.
I pray each of us can find that day! For whatever we need it for.
Blessings to all,
Marsha
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Oh, Annie - what an absolutely beautiful post - it brought tears to my eyes, and I thank you from the bottom of my heart for your kind and loving words. I am honored, truly honored. However, truth be told, my sweet friend, I am doing nothing more than what you yourself would have done in the same situation - and I do not have to question that at all. I thank the Lord everyday for Bryanna, as she has really been the wind beneath my wings. An absolute God-send that I have had her to pour my love and energies into on a full time basis, and it helps so much to be able to share the grief and the good, happy heart-warming memories that will always bind us so closely.
Thank you again, Annie - and always remember how very special and loved you are by all of us here on this thread, as well. Pretty amazing lady yourself!
Warm hugs Annie - always,
Linda
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Hi Everyone!
AlHusband - I wouldn't look to add in an over-the-counter anything to assist with the low glycemic index especially if she is going on Metformin. My opinion is that those drinks that are marketed as such are usually loaded with all types of chemicals. They market them as 'extending or helping blood sugar levels' by showing a 1gram of sugar on the label - so all your wife has to do is drink something with 1 gram of sugar or less and she is getting the same benefit without the chemicals. I don't see the benefit of that particular shake over another who is not marketed the same way. There are pure organic protein shakes that also have 1 gram sugar, and same amount of fiber and carbs and from a pure source - no chemicals. Here is the label for Garden of Life Raw and Organic: http://www.vitaminshoppe.com/p/garden-of-life-raw-protein-original-622-g-powder/gu-7020?sourceType=sc&source=FG&adGroup=40-60&keyword=GU-7020&cm_mmc=Google+Shopping-_-Product+Listing+Ads-_-40-60-_-GU-7020&gclid=CK2E5bq5trwCFU5cfgod2y4AKA&gclsrc=aw.ds#.UvLypu-PKUk
I have not ever heard that most TNBCs seem to be stage 3. I have heard from my Radiologist and Breast Surgeon that most bc is diagnosed as 'grade 3'. Grade 1 means the cancer has well-differentiated cells, versus Grade 3 is poorly differentiated - they do not look like normal cells.
Grade 3 can and often does have a great prognosis when diagnosed at an early stage and chemo works the best on the highest grade (grade 3) diagnosis and even with later stage diagnosis, chemo can be very effective. A colleague's wife, TNBC stage 3b, 11/13 nodes and tumor went from 1.5 cm to 6 cm in 3 weeks time has now celebrated 10 healthy years.
I have literature from the TNBC Foundation that reads:
In the TNBC Guide ...Page 33 - "Most women
with triple-negative breast cancer never have a metastatic recurrence or a new
cancer."If you want that PDF from the foundation, search with that phrase on the internet and you will get right to it.
Jianchi - I wonder if what she meant was that the risk of recurrence before treatment is what she quoted you. I have heard from my Onc that the younger one is to get cancer the higher the risk is of a recurrence, not because of the 'cancer' properties so to speak in regards to this conversation we had, but because we have to keep it away for that much longer to live a full life. My Onc said the younger you get it, the higher the risk, because we have more time for the cancer to come back, versus someone who is dx'd at an older age, has less time remaining in their natural life span for cancer to come back.
You can go to cancermath.net and get an idea of what the survivor stats are for, for your particular tumor size, stage, etc. You can evaluate it with a few different options - from where you are today (example if you have already gone 1 year without a recurrence) or if you want you can start with your diagnosis as if it was day 1.
And in all realities, remember one thing - stats are just a baseline for a population of people given limited data about them. Everyone is different, the studies often don't take into account how they lived before, during or after treatment, geographical information, work information (i.e.: factories,etc). I don't think cancer is a crapshoot, I do however think there is a lot of data that is not factored into those stats, and thus the reason why we see a wide range of results. I believe there are 6 subsets of TNBC, and I once read an article that said this research team compared 600 tumors of TNBC and not one tumor was like the other!
Someone once told me "I consider the stats a starting point. Everything else that I do from there changes the stats in a more positive favor." That helped me when I had low points. I don't live in constant fear - because I learned through trial and error that it was counter-productive for me, and making me more miserable, and also I started thinking it would not give my immune system its best opportunity to heal properly if I was engaged in fear. I had a great 2011 and was dx'd with bc at Christmas time. What an awful year I would have had if I had worried the whole year that I would get cancer and then I did, and what an awful year I would have had if I had worried about getting cancer and it would have taken away all those wonderful happy days. To me, fear takes away from living. I believe in being knowledgeable, committed and persistent. At some point in time, the worry was just too consuming - and frankly it wore me out. Then I realized, we don't know what is going to happen, that a new drug might be closer to existence, what other things could happen to us not relating to bc, etc. That's not to say I don't have a random dark thought that flashes through my mind, like when I'm watching a certain movie or see a certain commercial - but in that scenario it's only very temporary on my mind. Over time, I have managed to make this fear go from center stage to a tiny little corner of the room, to where it is not regularly contemplated or visited. It's a process that took time to achieve that. I like control and I'm Type A personality - so I have had challenges not being able to control all the shots here, however I do get to control, accept, change, affirm or reject many things and that's what I've chosen to do.
Regarding being young and survivorship: I have seen people post on here when their yearly anniversary is, and quite a few times I have seen women mention they are a xx year survivor and their daughter is now an xx year survivor. Some of those posts were of daughters that were young and had celebrated 8 years thus far. If I come across any of these posts I will paste them here.
For some hope right now: There are over 50+ trials dedicated to TNBC right now. Also -- Joel Osteen's Mom was given weeks to live in 1981 of liver cancer. She is here today. If you want to read a brief article about her and what she did, here is a link: http://www.examiner.com/article/dodie-osteen-healed-of-cancer
Wishing everyone a great day tomorrow! xoxo
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Lookingforward - can that smoking app be used for something else? I wonder if it could help stop sugar temptations - does it give techniques of what to do when you get a craving? I want to know more about this app!! It's going to be that or a hypnotist soon. LOL
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I just read Al's post about all his examples about statistics and if they are useful. I have often thought of things in the way that Al summarized. A female comedian (Tig Notaro) was on some late show the other night and she said a long-term relationship had ended, she got bc, and her Mom died all in a 3-month time period. Her Mom died after she tripped and fell - I believe her Mom was on the way to the hospital to see the daughter with the bc when this happened! So entirely random. It was another example of this.
I look at things sometimes as this: I get an opportunity to straighten out my life - whatever I should have improved before the bc I can improve now - it's a chance at starting over. Otherwise I would never have known ... example: maybe I should show my husband how to work the excel spreadsheet of our bills. Not because anything related to bc will happen to me but because anything can happen to anyone of us. It was a wake up call to fix or improve anything that could be improved in my life, such as: From what I had considered a healthy diet, to changing that to a healthy diet. From mending or improving any relationships, to being a better wife, daughter, daughter-in-law, sister, friend, mentor, etc.
I've often heard people say they became a better and happier person after their bc diagnosis.
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Inspiredbydolce
I don't know if it can be used for any other bad habit. It is mild form of hypnosis as I understand. I have not had to use it yet.
It is called.
Quit Smoking Now. With Max Kirsten.
If anyone wants to give it a try it can be found in the App Store. I don't want to open it fully unless I need the crutch. It is as if it is my app of last resort type of thing.
But hey, for $6.99 I figure it is cheaper than running to a hypnotist. The gas to get to one would be about the cost of the app, so worth a shot. Good luck & let me know if it works on sugar!!!
Marsha
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Thank you, Dolce, for your positive and encouraging outlook. Your words make me feel better on bad days. I would agree that this dreadful experience has made me a better person. I wouldn't like to repeat it again EVER but I certainly live each day with gratitude for the present. My mother is over 10 years out from triple negative and my friend over 13. There is plenty of hope and joy with living in today.
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Holy jeez, I just had a DUH moment - went to that cancer calculator thing and accidentally put my tumor was 27cm instead of 2.7mm and it was 94 % your dead - hahahhaha - I nearly poop'ed my pants!
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I appear to be missing a cancer and sugar correlation. I am a diabetic and have cancer. I do eat sugar. I have quit eating any type of chemical sugars and only use regular sugar in limited quantities. I am going to go out and do some research but I have seen a lot of mention about sugar here.
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Ang, your post made me LOL! Thanks! A 27 cm tumor would be quite something.
I couldn't agree more with Inspired's post....particularly about worry (when I give into it) only making me tired. I also try to avoid it because I figure it's not good for my immune system. I felt like I had something like PTSD for the first two or three months after diagnosis. I was consumed with worry and cried daily, often uncontrollably. It's not to say that I don't worry any more. I just try to get myself out of it faster.
I've posted about this book before, but I'm going to mention it again because I think it was the real turning point for me in learning how to adjust to my new "normal." The book is called "Loving What Is" by Byron Katie.
I also journal three pages by hand every morning and I find that helps tremendously with dealing with whatever is on my mind.
I feel like cancer has taught me to be so grateful for all the things I used to take for granted. I hope I never forget the lessons I'm learning right now and go back to my old way of life. No matter what happens in the future, having TNBC has changed me for the better.
I also try to focus on what I can control....diet, exercise, enjoying time with others, my "inner life". Like Inspired says, it doesn't happen overnight, but it is possible to learn to live without constant fear being the dominating force.
I'm still a relative newbie to TNBC. I'm done with chemo and onto surgery (next week) and rads after that. I know that have a lot yet to learn and to experience on this journey. There is no doubt in my mind that I'm going to continue to experience dark times....I'm just learning, bit by bit, to move out of them faster. A friend of mine says: "Look, but don't stare." She says that about dealing with any kind of problem, not just bc. I remind myself of her saying when I'm researching TNBC or looking at statistics..... I look, but I don't stare.
Hugs to you all. Thank you for being here. It makes this journey so much easier.
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Congrats, Lookingforward. I know it is difficult to quit. Hang in there.
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Simple...look at it this way...chemo is DONE....assuming you are having a lx cause you are having rads too.....for me..chemo was the hardest thing....my lx and rads were fairly easy on me....hopefully they will be for you also....!
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Lookingforw another smoker here. Don't beat yourself up. Cancer and chemo has got to be one of the most stressful things to go through. For some it's taking a drink, another it's eating all they can get down and for some its a ciggie and for others all sorts of things help them through. Don't worry about it. Regardless of what some people think you are not dirty because you smoke and it is nothing to be shameful about. You do what you have to, to get through. There are far worse things you could be doing in this world and on top of that you have beaten it since the 11th January. So good on yer girl.
tekwriter you will be aware as you are a diabetic that contrary to popular belief sugar does not cause diabetes. Obesity causes Type 2 diabetes. If you have a healthy lifestyle of leafy green veges, some lean meat and fish, fruit, you exercise regularly ie several times a week, watch your weight, have cakes, and biscuits etc in moderation then you can have sugar without it causing ill-effects ie weight gain. It is an unhealthy weight that causes Type 2 diabetes and it can be managed with dietary changes and exercise. With Type 1, diabetes is caused by a lack of insulin and can be controlled with insulin medication ie Metformin, Actrapid or Gliclazide with again, healthy food choices and exercise. It can also be genetic.
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TOP 5 ADVANCES IN TNBC RESEARCH IN 2013:
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Inspired - what researchers have been working on certainly looks promising! Thanks for sharing the article.
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inspired, thanks again for posting such important information here. You are truly a gem!
Hugs,
Peggy
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thanks for the link Inspired!
SImple: i like what you wrote... look but dont stare. will try to apply it into my life too. Do let us know what happens after surgery. I hope you achieve Pcr!!
cocker: thanks so much for being there and the encouragement.
Now that my chemo is about to be over in a few days, mixed feelings are coming up.
came across a website yesterday...
http://deathisnotdying.com/pathology-report/
this website talked about a lady called Rachel, who was diagnosed with triple negative stage 1 cancer in 2004, got surgery chemo and rads and finally she died in 2009 due to spread to other organs. very shocking indeed.
she gives a talk a days before her death, about leaving the world and her family behind.
http://deathisnotdying.com/eventvideo/
very very touching .. !!
thankful for every day..and i hope none of us have to go through all that she went through.
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Tekwriter my wife's Onc told her to "eat like a diabetic vegetarian" to help prevent relapse.
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