Calling all TNs

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  • kathyrnn
    kathyrnn Member Posts: 393
    edited January 2014

    Oooops again I forgot something.  (It's chemo brain....and I'm sticking to that excuse)

    I had my biopsies yesterday.  One core biopsy and 4 skin biopsies.  I have so many holes in Righty, that if you could hook up a garden hose to my breast............I could make a hell of a lawn sprinkler!!!!!

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited January 2014

    Something to brighten your day ladies. 
    A woman asks her husband at breakfast time, "Would you like some bacon and eggs, a slice of toast, and maybe some grapefruit juice and coffee?"

    He declines. "Thanks for asking, but, I'm not hungry right now. It's this Viagra," he says. "It's really taken the edge off my appetite."

    At lunchtime, she asks him if he'd like something. "How about a bowl of soup, homemade muffins, or a cheese sandwich?"...

    He declines. "The Viagra," he says, "really trashes my desire for food."

    Come dinner time, she asks if he wants anything to eat. "Would you like a juicy rib eye steak and some scrumptious apple pie? Or maybe a rotisserie chicken or tasty stir fry?"

    He declines again. "No," he says, "it's got to be the Viagra. I'm still not hungry."

    "Well," she says, "Would you mind letting me up, I'm starving!


  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited January 2014

    Hi Bunnygirl, 

    Wow, I can not believe that 3 different people did not raise a red flag at the bump.  Although I do think doctors follow the symptoms to find a problem, and we tend to start first with thinking it's a problem and work backwards.  I too would have been suspicious!

    Metformin works by controlling glucose in non-diabetic as well as diabetic women and it also lowers androgen receptors - and it is in several trials right now to test effectiveness when administered with chemo, or without chemo, with diabetics and without diabetics and currently it has made it all the way to Phase 3 of the trial.  Metformin works by reducing circulating insulin cells which they feel can be very beneficial to TNBC women.  Metformin induces cancer cell death at the earliest stages of development via metabolic pathways. It can help stop or slow the spread of metastases if the person has a high expression of CD24 positive cells.

    Metformin has been on the market for 25+ years and they discovered that women who had been taking it had much lower incidence of breast cancer.  With TNBC, current theories are that we need to keep low fat and low insulin levels.  There are studies right now of it in regards to TNBC.  Because there is not a standard targeted treatment for TNBC, many Physicians and Oncologists have prescribed it, because of the potential benefit to risk ratio (very little risk associated with Metformin).  Tamoxifen, what ER+ women have as targeted therapy, was originally a contraceptive drug. 

    If you would like to PM me your e-mail address, I have several articles and attachments that you can read for further understanding. I also have a lot of other TNBC information on the e-mail (nutrition assistance, etc), as I have numerous requests for additional information.  Each attachment is saved with a file name that makes it easy to determine what you are reading, if you only want to read about Metformin.

    It was the women here at bc.org who first told me about this, and I collected a lot of research on it before moving forward to ask my Onc and PCP about going on it. I have now been on it for about 6 months - and I'm at the trial dose as well. 

    While it has not been approved for taking as preventive measures for bc, it can be written off label.  Off label means taken for a reason other than what the FDA approved it for.  (Much like how birth control pills are prescribed for someone who has acne - that's not the original purpose of birth control pills, but it helps control some people's acne). 

    Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

    • Phase I:Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
    • Phase II:The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
    • Phase III:The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
    • Phase IV:Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.

    I have literature from the TNBC Foundation that could be helpful to you and your family in understanding TNBC - it's written in a very nice easy to follow PDF.  It explains a lot, talks about what you can do now and for your survivorship, etc.  On page 33 it states...

    Page 33 -  "Most women
    with triple-negative breast cancer never have a metastatic recurrence or a new
    cancer."

    I feel that is important to reflect upon that statement because we are only a small group of women on here.  It's estimated that 15-20% of women who are diagnosed are diagnosed with TNBC, so that would be about 35,000 women each year diagnosed with TNBC (232,000 women with IDC x 15%).  Very few of these women are on the boards, so it's important (if you have a bad day or read something depressing) to remember that there are many victors out there - we might just not be hearing from them on the boards.

    Just keep taking it day by day, and we are all here to help and support you! 


  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited February 2014

    What's everyone's opinion on Fish Oil?  This article said largest study ever shows it helps beat cancer.  There is a new study out that says fish oil increased the risk for prostate cancer, however many experts are counter-claiming that study, stating that study was to research the relationship between selenium and vitamin e in a cancer research trial, it was discovered that those who had prostate cancer did have higher levels of DHA but it was not known whether it was from fish or fish foils or any other factors, since the study was for something else.

    Anyways, if you are taking this please let me know how much and what does your doctor think? 

    I do get the Omegas from organic flax seed.

    http://blog.canceractive.com/?tag=breast-cancer This link also includes additional information on various other dietary things

    Also my good friend in Florida, also a TNBC survivor sent me this article on carotenoids  -  http://blog.canceractive.com/?p=824

  • Titan
    Titan Member Posts: 2,956
    edited February 2014

    hear you about the weight thing Kathrynn   I weighed 124 lbs. at diagnosis..which is way too thin for my body frame...I am at 143 now...with some crappy fat rolls around my hips..but you know..I will take them...I freak out if I lose weight...I still freak out some cause I eat alot and stay the same....hoping it is my nervous energy type personality burning the fat up....and getting older....

  • belleeast
    belleeast Member Posts: 653
    edited February 2014

    Stupidboob,I would think energy levels returning depends on the individual. That being said,my energy returned around 15 months after radiation,I'd about given up hope to getting it back. Unfortunately,it only lasted a few months,now tired again most of the time! Hoping when spring gets here,it will return.

  • journey4life
    journey4life Member Posts: 517
    edited February 2014

    Hi everyone,

    Is hydronephrosis related to the effects of chemo? Secondly, does chemo cause liver damage? And the final question, is ascites from chemo, cancer or something else entirely? 

    Fighting OvCa kept me away from bco and I was saddened to read about Dawn and Karen. I hate FC!

  • tekwriter
    tekwriter Member Posts: 216
    edited February 2014

    I am morbidly obese and hypothyroid.  I have been struggling to lose weight and was down around 35 lb loss pre BC.  I was stricken with some migraine problems and lost sixteen pounds quickly and have now jumped to 52 pound loss.  I am not trying to lose weight I am just not very hungry.  I drink ensure about a meal a day when I am not feeling well to bump up my protein intake to 25 grams or a protein shake. I try to make sure I eat a very healthy dinner consisting of protein, starch and green vegetable and some fruit during the day. They said not to lose weight but I don't know what else to do. I am eating normal portions it just doesn't support my heavier weight. I don't really mind either.

  • simplelife4real
    simplelife4real Member Posts: 563
    edited February 2014

    Hi All, 

    Just stopping by to wish everyone support.

    Inspired, I take krill oil instead of fish oil for omega 3.  I just like the idea of krill being lower on the food chain and therefore, hopefully, less toxins.  

    Tekwriter, I had a hard time eating on AC, particularly at the end.  Organic peanutbutter on organic multigrain toast became my "go to" food when I couldn't cope with anything more.  I did lose weight while on chemo, but my MO was okay with it.

    Twelve days to my surgery and counting.  I'm feeling better each day as chemo works it's way out of my body. I'm now 18 days PFC (but who's counting LOL).  

    I meet with the RO this Wednesday for the first time and I'm very glad about that.  I want to know from her what she thinks about possibly having implants replaced at the time of my surgery and whether it could cause problems with getting the radiation I need.

  • kathyrnn
    kathyrnn Member Posts: 393
    edited February 2014

    Inspired - I'd be very interested in seeing the Metformin research you have that talks about it's effect with Androgen receptors.  

    Journey4life - it's good to see you.  I'm going to try and answer your questions, BUT they are all complex questions that are better answered by a doctor who has knowledge of your specific case.  I have a feeling if your coming here to ask the questions, then you must feel you're not getting the information you need. I did some checking to make sure I could give you accurate answers.  Again...please remember these are best answered by one of your doctors

    Does chemo cause liver damage? Almost all drugs are broken down in the liver. (Some are excreted directly through the kidneys).  Chemo drugs are very toxic and yes they can be damaging to the liver.  That is why part of your blood work during chemo is evaluating your liver enzymes so doctors can monitor how your liver is tolerating the chemo drugs.

    Is hydronephrosis related to chemo.  The easy answer is no, but the answer is more complex than that.  Hydronephrosis is caused by urine/fluid being trapped in kidney and damaging it.  Urine flows from the kidney...through the ureter....into the bladder....and out the urethra.  Anything that causes damage to any of these structures can cause hydronephrosis.  There are MANY causes but some are kidney stones, bladder dysfunction, scarring from infections, various results from surgery in the pelvic area and the effects of radiation.

    Is ascites from chemo, cancer or something else?  This another complex question.  Ascites is a symptom not a disease.  Ascites is simply fluid collecting in the peritoneal cavity.  It also has MANY causes.  The most common cause is some type of liver disease,  Other causes include severe heart disease, damage to liver's venous output, kidney disease, malnutrition and cancer (primary or metastatic)

    I hope this helps Journey.

    Sounds like you're doing the best you can right now Tek.  My only suggestion would to be to add another shake in daily if need be.

    Simple - I'm glad to hear that you will be able to get your questions answered by the RO before your surgery. BTW, I love your picture.  Yes...you do look like a demented elf......but a very beautiful elf.  

  • kathyrnn
    kathyrnn Member Posts: 393
    edited February 2014

    ohhhhh Annie.........did that story come from personal experience?? (*sly grin and a wink*)

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited February 2014

    Hi Kathrynn,

    Here are a few articles:

    " For example, metformin, an insulin sensitizing agent that also helps to reduce excessive androgen production, promotes weight loss..." From the article below:

    http://www.lef.org/protocols/female_reproductive/polycystic_ovary_syndrome_01.htm

    http://www.ncbi.nlm.nih.gov/pubmed/24267731http://www.sciencedirect.com/science/article/pii/S1526820913001869 - Title: " Metformin Decreases Circulating Androgen and Estrogen Levels in NonDiabetic Women with Breast Cancer"

    And this final article is not really about your question - it's just an interesting article on how Metformin came into existence for the prevention of cancer and general information about it.  http://www.lef.org/magazine/mag2012/nov2012_metformin-makes-headline-news_01.htm

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited February 2014

    There was a question posted is chemo hard on the liver?  Yes, hard on liver and  kidney, and therefore Oncologists will usually monitor these values at scheduled intervals after treatment is done.  It can take as long as 18 months for your kidney and liver to return to the level it was functioning at prior to chemo.  Some things you can do to help is drink lots of water, small meals more often instead of big meals, plenty of fiber and limiting alcohol and other things known to be hard on the liver and kidney in general.

  • kathyrnn
    kathyrnn Member Posts: 393
    edited February 2014

    Thank you Inspired.  Since I'm the Queen of Androgen receptors (99%) the Metformin may actually be helping me.  (*throws PCP to floor and kisses soundly*)

  • journey4life
    journey4life Member Posts: 517
    edited February 2014

    Kathy, can I pm you?

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited February 2014

    I was thinking you had mentioned that when I was reading your request!  I'm so glad to hear that!  I also want to hug my PCP.  Maybe we can make this "hug your PCP day".  Smile

  • kathyrnn
    kathyrnn Member Posts: 393
    edited February 2014

    Of course you can Journey

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2014

    Kathy I would put food first any day. Stuff the rest at my age.  You and Titan haven't turned up yet.  Those cream cakes will be going off and I don't care if you come in your birthday suit (though a bit windy today) as long as you both come. lol  

  • kathyrnn
    kathyrnn Member Posts: 393
    edited February 2014

    Nope Annie, I won't be coming in my birthday suit.  To many wrinkles and I threw out my iron years ago.

  • Titan
    Titan Member Posts: 2,956
    edited February 2014

    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...

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2014

    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

     

  • simplelife4real
    simplelife4real Member Posts: 563
    edited February 2014

    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. 

  • Lookingforward66
    Lookingforward66 Member Posts: 147
    edited February 2014

    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

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited February 2014

    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.   

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2014

    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

  • tekwriter
    tekwriter Member Posts: 216
    edited February 2014

    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?

  • Titan
    Titan Member Posts: 2,956
    edited February 2014

    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!

  • adagio
    adagio Member Posts: 982
    edited February 2014

    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?

  • simplelife4real
    simplelife4real Member Posts: 563
    edited February 2014

    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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