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Calling all TNs

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  • jenn3
    jenn3 Member Posts: 388
    edited May 2010
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    Sugar - My onc didn't seem too concerned with the whole Vit D thing either.  So..... when I went to my rheumatologist I asked her if she would check my Vit D (which she usually does anyway).    I was low, but not as low as I was prior to BC (prior to BC I was taking 50000 units/week).  I am now taking Vit D 2000 units/day and she said she'd run the blood work again on my next visit.  I'm sure your primary dr will run the test.

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    I have had my levels checked twice...first time I was at level 42, the second time I was at 53..I would like to be in the 70's or 80's.  The onc. nurse said I wasn't to have the Vit D blood test this time but I want to have it...I'm taking 5000 IU's plus per day.  The level went up 12 in the 12 weeks between tests..I would like to know if I'm in the 60's now...Toxicity is at 100.

     And there is no way the test results should take 3 weeks..I had my results within two days..

  • kittycat
    kittycat Member Posts: 1,155
    edited May 2010
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    2 weeks is excessive, esp for a blood test.  Did you check to see if there was an issue with the insurance?  Maybe that's the hold up???

  • LNFletch
    LNFletch Member Posts: 12
    edited May 2010
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    Sherri,

    I had to ask my GP about my vitamin D levels. It did take a while for the results to come back. The number came back at 37. They said it was normal, but after reading some of the posts here, I think that it is low. I have been taking 5,000 IU tablets to raise it. I'll ask in a few months to have them test again.

    Lianne 

  • LNFletch
    LNFletch Member Posts: 12
    edited May 2010
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    When I requested to have my blood tested, it took about a week for the results to come back, but they said it would take a few weeks for me to get the result. I was tested at 37. They told me that my levels were normal, by the way. I started taking 5000 IU's a day because I want the levels higher than that. I haven't retested yet, but will in the next few months.

  • kittycat
    kittycat Member Posts: 1,155
    edited May 2010
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    Okay, here's my question... is there a link to Vitamin D levels and triple negatives or breast cancer in general?  Is it for when you have chemo?  Just wondering because I'll be having treatment soon. 

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2010
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    Wow, I am new here and I recognize a few of you from other threads and postings.  I found my lump in August 2009 while doing my monthly check but since I was always lumpy I waited a cycle to see if it went down/away.  I kind of knew, though, what it was.  I told my dr who ordered a diagnostic mamo (the one I had 1 year prior was "suspicious" so they ordered a recheck and an ultrasound but it was decided that I was just lumpy).  Again, the mamo showed nothing so they did the ultrasound and there they were (barely visible a year ago) but now very clear.  The tech doing the ultrasound told me point blank--I don't know what this is--but in my heart of hearts I knew.  They ordered a biopsy on the lump I found but all that week I frantically compared my breasts and found another lump.  So when I went in for my biopsy they ended up doing two--both came back stage 1 cancer grade 2b.  Well, my second discovery was just under the nipple and hard to reach and the other was in an easy to reach spot but my small breasts meant a full mastectomy so they decided to do chemo first.  6 x taxotere & cytoxan shrunk it down but the biopsy caused my well differentiated tumors to merge into one barbell shaped tumor and it was still too close to my nipple so.  Here I am, I had a lf MX with delayed/immediate reconstruction and just had my first fill on Tuesday.  My Vit D was in the 30's and I take 8000 mg D3/Vit K1 per day, I do Vit C 50,000 I.V.s with minerals, I take a bowl of supplements per day, I do the Iodine protocol (see breastcancerchoices.org), I do homeopathics, I do flaxseeds, tons of vegis. 

    I tell you--I will feel alot better once my brain works like normal, but I do consider myself lucky to not have to take all of the other drugs so many of you have had to take and even though my TN was aggressive, the chemo turned it into a spongy dead mass.  I don't think it will be coming back.  My nodes were clear, I have made huge lifestyle and diet changes and I plan to live another 50 years. 

    Oh yes, no BC in my family although my mother had a rare tumor in her 20's and my grandmother died of colon cancer.   My mother lived well into her 80's and my grandmother, too!

    Nice to meet all of you and I look forward to coming here and joining in. 

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    Hi MBJ~

    I also take a ton of supplements!  But, ya know, I like feeling like I am being proactive.  I also eat a pretty structured diet and exercise between 1 and 2 hrs a day.  Getting more sleep is my next goal... then changing my mental outlook.  I have to take these changes in bite-sized pieces... 

    xxoo, Michele

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    Ladies, I think it would be intersesting to hear what supplements others are taking. Last week, I started taking Curcumin (highly bioavailable nanotencology-enhanced 1105 mg), fish oil (6:5:1 ratio EPS:DHA), EGCG green tea extract (700 mg), Bio-D-mulsion Vitamin D (1,000 IU per drop), This is in addition to my usual  calcium/magnesium supplement and Centrum multivitamin. I was taking Vitamin D tablets but ran out and replaced with the drops last week. Am I missing anything major that anyone else is taking that's good for TNBC? I was considering grape extract. 

    Sherri 

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    Sherri~

    I take: (the "X" is times per day)

    CoQ10 (100 mg 2X)

    ECGC (500 mg 1X)

    Resveratrol (100 mg 1X)

    Curcimin + biopro (1000 mg 3X)

    D3 (1000 units 1X)

    D3 (50000 units once a week)

    DHA (1000 mg 2X)

    Calcium (600 mg 2X)

    Melatonin (10 mg at bedtime)

    acidophilous (1X)

    boswellia (200 mg 3X)

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2010
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    I wasn't kidding when I said I take a bowlful!  Ladies, it's very important to take Vit K1 with Vit D3 so that your body absorbs it!

    IODINE PROTOCOL:

     Iodoral  87.5 mg 1 x day,  Vit C 1000 mg 3 x day,   Magnesium Malate 500 mg 2 x day,  Selenium 200 mcg 1 x day,  Vit B Sublingual Total 2 x day (niacin & vit b's)

    PRESCRIBED HOMEOPATHICS

    RECOMMENDED BY INTEGRATIVE DOCTOR:

     Wobenzyme N  5 tablets 3 x day (take with 1000 mg Vit C above), Magnesium Malate Chelate 500 mg 2 x day (see above),  Vit D3 2000 mg with K1 200 mcg-4 tablets 1 x day,   Iodoral (see above), H.R.T.Plus  (B12, 10000 mcg,  folates 245 mg, folic acid 100 mcg, Biotin 25 mcg, Vit B6 2 mg, Bioidentical 100 mg) 2 x day, Thyroid, natural 1 gram, Drenamin (730 mg raw adrenal, with vit c, niacin, riboflavin, B6) 2 tablets x 1 day, Immunity Plus (mistletoe, olive leaf extract, goldenseal, buchu, peppermint, tubor, goldenrod, hawthorne, schizandra) 10 drops 3 x day,    Melatonin 5mg + for sleep as needed (25 mg right now!)  FOR METS: I.V. Vit C, Magnesium, Vit D, Minerals 50,000u 1 x week

    RECOMMENDED BY READING LIFE EXTENSIONS:

    Kyolic Garlic, Vit E,  Grape Seed Extract,  Resveratrol,  MSM,  Billberry Extract, Turmeric

    RECOMMENDED FIVE DAYS PRIOR TO SURGERY BY LIFE EXTENSIONS:

    Modified Citrus Pectin 14.4 grams day, Tagamet (800 mg of cimetidine), PSK- 3 grams day, IP6 500 MG, garlic, AHCC, glutamine, lactoferrin, mistletoe, interferon-alpha, granulocyte-macrophage, interleukin-2, genistein, silibinin, chrysin, EGCG, curcumin,Coenzyme Q10 100 Mg, Pycnogenol 50 MG

    GENERAL ANESTHESIA +REGIONAL ANESTHESIA: TRAMADOL - NO MORPHINE!

    Begin taking the following supplements at least 5 days prior to surgery:

    • Glutamine: 3000 mg per day away from food
    • IP6 (inositol hexaphosphate): 1-3 grams per day
    • AHCC (active hexose correlated compound): 3000 mg per day
    • Lactoferrin: 300-900 mg per day
    • PSK (protein bound polysaccharide K (Coriolus): 3000 mg per day
    • Cimetidine: 800 mg before bedtime
    • Modified Citrus Pectin: 14-30 grams per day away from food
    • Soy isoflavones (genistein): 100-200 mg per day with food
    • Silibinin (component of milk thistle): 500-600 mg per day
    • Chrysin: 1000 mg per day
    • Green Tea: 650-1000 mg of EGCG per day
    • Curcumin: BCM-95® extract: 400 mg per day with food OR 2500 mg per day of a regular curcumin supplement

    Please Note: Different curcumin formulations will differ in their absorption and bioavailability. These differences in absorption can affect the suggested doses. For example, one type of curcumin - called BCM-95 - has studies documenting that 400 mg of BCM-95 curcumin compound can provide curcumin blood levels equal to ingesting 2,500-2,800 mg of regular curcumin supplements.

    • Resveratrol: 25mg before surgery; increase to 100-250mg 2 weeks after surgery
    • Quercetin: 500-1000 mg per day

    Avoid the following supplements for 2 weeks prior to surgery and begin taking 2 weeks after surgery:

    Prescription Drugs:

    Pharmaceuticals prescribed prior to surgery depend on the status of the individual cancer patient. Patients with low white blood count are typically treated with granulocyte colony-stimulating growth (GCF) factors such as Neupogen® (300-480 micrograms per day) or Neulasta® (6 mg) which lasts 3 weeks. Other pharmaceutical compounds which have shown benefits for cancer patients undergoing surgery are interferon alpha and Interleukin 2.

    • Neupogen®: 300-480 micrograms per day OR Neulasta®: 6 mg, which lasts 3 weeks
    • Interferon alpha: 0.5 to 3 million IU
    • Interleukin 2: 1 to 6 million IU
  • MBJ
    MBJ Member Posts: 3,671
    edited May 2010
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    MichelleS:  It is safe to take up to 30 mg of Melatonin for sleep.  While undergoing chemo I needed 6 per night.  After surgery the pain killers made me sleep 20 hours a day so I took none.  Now that I have weaned myself off of the pain killers I am now back up to 20-25 mg for a good 6-9 hours of restful sleep.  Only drawbacks is the inability to wake up and go in the morning like I used to.  Of course, I no longer do coffee, sugar, white foods and I never did soda, meat, poultry.  Just fish, vegis, whole grains and I read every lable of everything I consume so that I don't ingest chemicals.  If the list is too long, it's not good for you so I don't even bother! Luckily my local Von's store has greatly increased their organic selection so that I don't have to go to Whole Foods for everything which is much more inconvenient and expensive.  I also only do organic red wine.  Trader Joes and some Ralph's and RiteAides carry the Bonterra wines which are pretty good for organic.

  • Luah
    Luah Member Posts: 626
    edited May 2010
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    Wow, I feel like I have to set up to speed, fast!  Am taking a multi and vitamin D, and eating low-fat diet which has shown to be particularly effective for trip negs.  I  bumped up my intake of anti-cancer foods, herbs etc. Nutritionist at my cancer center said that while supplements can fill in gaps, the best way for your body to absorb any of these nutrients is to get them in food (ie. naturally). Well, she is a nutritionist after all. But that's why I haven't been taking a bunch of supplements -- can anyone point to any studies on supplements and BC, trip neg in particular?  I would love to be better informed.  

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2010
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    I don't know about TN specifically, but Life Extensions.com has the latest research on all cancers.

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    MBJ~ I read labels like crazy too.  I try to stick to organic.  I don't eat mammals and very little dairy.  Anywhoo, I've been reading about wine.  Frankly, the studies frighten me so I've tried to give it up.  However, I miss my Fri and/or Sat night glass of wine.  What do you think about wine?  Of course, only organic and sulfide free but... the alcohol studies are frightening.

    thanks!!!

  • Luah
    Luah Member Posts: 626
    edited May 2010
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    Thanks MBJ.  I found the page on research under Life Extensions, but couldn't actually see any study results for breast cancer - I may not be looking in the right place. Have to admit, I'm pretty blown away by their lengthy list of supplements for BC.  But then, they are in the business of selling them. I do wonder how one balances all those supplements with amounts naturally occurring in food.

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2010
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    As far as Life Extensions goes, I was only able to purchase very few of their products at the store.  The others were from many other different brands.  I try to buy the purest, and also the best value.  Yes, I agree, food is better.  However, the amount you get in say their green tea pill versus drinking several glasses a day.  Well, I have a glass or two of hot or cold tea plus I take the supplement.  Sometimes you just get more in a pill and sometimes there is more value in the food.  Eating turmeric every day, or miso, or any of the foods that are good is pretty impossible although I do include many of these now in my diet in addition to the supplements.  You can get plenty of Vit D3 from the sun, too but I live in sunny California, and work in and out of my car all day and I still had a deficiency!  I try and do the best that I can with what I can afford and I try not to worry so much.  Same thing with red wine--I don't drink it every day, I try to only have a glass with a meal, and I try to only have organic.  The resveratrol in red wine is good for us, but I also take the supplement.  My dr. told me, it's best to do many things because it's really hard to tell what is going to work for each person since we don't have individual medicine.  What seems to be standard though is:  melatonin in order to sleep and reset our clocks, vit D3+K1,  magnesium, selenium, iodine, eat lots of whole foods and grains, walk 5 hours a week, learn to manage your stress and learn to say no!   If you can't afford all of this stuff, do what you can.  Do stay away from sugar, white foods, bad fats.  Best two books to read: What Your Doctor May Not Tell You About Breast Cancer and Anti Cancer: A New Way of Life.  I don't want to spend the rest of my life on eggshells but I do want to make healthier choices so that I can continue living.  Oh yes, there is an amazing healing cd that I used right before surgery by Peggy Huddleston that can be purchased on line at amazon.com.  Brilliant!

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2010
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    Oh yes!  For those trying to kick sugar, Rebecca Katz has a couple of cookbooks to get people through chemo, radiation and cancer in general and her books include low glycemic desserts that are wonderful.  All kinds of great, healing recipes in there. 

  • kittycat
    kittycat Member Posts: 1,155
    edited May 2010
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    Trader Joe's is my favorite place to shop.  My hubby and I just went there this weekend and stocked up on all kinds of good food to eat.  :)  And the food is not expensive either like Whole Foods (Whole Paycheck, as we call it)!  LOL!!!

    I am shocked at how many supplements you all take.  Wow!!!  I need to start paying attention and get some supplements, esp before I go on the dreaded chemo!!!  My hubby was telling me that I needed to take more vitamins.  Does anyone buy anything at Costco? 

  • MicheleS
    MicheleS Member Posts: 196
    edited May 2010
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    Kittycat~

    The general rule of thumb is to avoid supplements DURING chemo.  I started mine after I finished. Talk to your MD 1st...

    xx00

  • tibet
    tibet Member Posts: 29
    edited May 2010
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    Michele

    I would like to get your list in full spelling to see if I can find them here in Europe. What is Boswellia?

    D3, 50,000 units (doesn't mean international units)?

    What is CoQ10?

  • Luah
    Luah Member Posts: 626
    edited May 2010
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    MBJ: Thanks for the information. I do practise most of what you mentioned, and I loved the Anti Cancer Book; I also a have a cookbook that aligns with the healthy foods it promotes. Some yummy recipes in there. I have a question though: do people get tested first to see if they're deficient in these nutrients before taking supplements?  I did get a VIT d test, and I am waiting on the results. But things like iodine and selenium? - some of what I've been reading is that deficiencies in developed countries are very rare, so I'm just wondering how I know what my body actually needs.  For me, it's not really a matter of affordability (I'll budget for what I need), but rather not wanting to intervene with what's already natural and healthy.

    Oh, and I will definitely look up the Katz cookbook - as I have a weakness for dessert!

  • dsa-deb
    dsa-deb Member Posts: 49
    edited May 2010
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    SHello All:  I've read discussion boards for nearly a week and sometimes think I'm absolutely sinking in an ocean.  I definitely understand some things and am grateful for what I'm learning along the way.  I am scheduled for 3rd surgery w/in past 3 wks; this time to remove breast nipple/aerola.  Have been diagnosed with metaplastic carcinoma - triple negative.....beyond that I'm still waiting to hear final conclusions with firm diagnosis.  I haven't read any comments that indicate same status as mine, even though I don't have full eval results.  Sentinel node/others were all clear--just this darn cell activity that hasn't been satisfactorily resolved according to pathologist staining process and 1 cell under the nipple remains active, with clear margins otherwise.  Seems my tumor isn't the 'normal' mass---whatever that is!!  so, testing/path results take longer and always involve sending tissue to different labs---last time clear to california & I live in Texas!   I know tumor was a little in excess of 3 cm--and am stage II (don't know if A or B).  And all those other descriptives that everyone uses at closing of their comments is like a foreign language to me.  I guess I'll know more after this surgery and oncologist eval.  Have been told I'll have 20 weeks of chemo, + seomething after that, Taxol?? and then 6-8 rounds of radiation.  Has anyone even been close to what I'm describing?    This is my 1st time at corresponding....hope it makes sense.  thanks in advance for feedback!  

  • jenn3
    jenn3 Member Posts: 388
    edited May 2010
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    The only supplements I take is Vit D and B12 because my rhuematologist said my numbers were bottomed out.  I do have to say the B12 injections do make a difference in my energy levels.  I also buy the Otwalla green juice and drink it occassionally, but have been for years because it tastes good.  I am getting back into walking and biking now that I'm feeling better.  I do believe exercise helps in so many ways.

    Kitty - we don't have a Trader Joe's or Costco.  In addition to my regular grocery shopping, I do shop at Whole Foods and Sams (same as Costco). 

  • Morgan513
    Morgan513 Member Posts: 303
    edited May 2010
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    Just to reiterate what Michele said to Kittycat...please be careful what supplements you take during treatment.  Some can interfere with the chemo's effectiveness also radiation too.  You should check with your doctors first before starting anything.  

    Lorrie 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited February 2011
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    I take some supplements, drink a little, have dessert sometimes, eat low-fat most of the time and maintain a good weight and active lifestyle.

    I refuse to be driven crazy by all the information out there though; what works, what may work, what doesn't work, what works now but may not tomorrow, what may work tomorrow but not now... you get the picture.

    This disease will not rule my life! It's bad enough that it's changed it significantly.

    F*ck it.

  • riley702
    riley702 Member Posts: 575
    edited May 2010
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    Thanks, heidi, that's pretty much where I am, too. I don't need to stress about diet and supplements. I do what I can and don't worry about the rest, but that's what works for me. I'm not trying to tell anyone else what to do or not do.

  • Titan
    Titan Member Posts: 1,313
    edited May 2010
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    Hey everyone..saw the onc today...gave them my list of supplements I'm taking...folic acid, thistleseed, flax oil, along with the multi vitamin, d-3, biotin, caltrate, aspirin...etc...He said taking folic acid was good...didn't say much about the other things, except the D3...going to test that blood level in 3 months.   It was actually a very relaxing appt.   we just talked..he examined me...heart, lungs, felt up all the lymph node areas...we talked some more...asked questions about energy level, any new pain..etc...I have gained 3 more pounds since last visit but I'm thinking that it is all muscle..since I exercise alot (whatever)...asked about iodine...said I could take it if I wanted to...it won't hurt me...

    Bottom line..as what was said above.....Ithink we have to do what is right for us...it is individual....taking these supplemements..well..I feel really, really good..not sure if it is from them or the exercise and eating well..anyway, I like I how I feel now...sometimes I kinda freak out..that maybe I'm not doing all I should..then I tell myself relax...do what you can....and enjoy your life! 

  • sugar77
    sugar77 Member Posts: 1,328
    edited May 2010
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    I met with my family doctor today and she gave me a requisition for blood work to have done before my upcoming physical.  I asked if she would include testing of my Vitamin D levels and she said absolutely. Yay!!! Per my previous rant...I couldn't get either of my oncs or my surgeon to test this. I also asked her to check my hormone levels to see if I'm in menopause after chemo as I've not had a period since January. I will go and have the blood drawn this week and will get the results in June when I have my check up. 

    Titan, I feel better taking supplements, too.  

    Sherri 

  • MBJ
    MBJ Member Posts: 3,671
    edited May 2010
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    Kittycat: I love trader joe's too.  I usually go there first then get the balance from whole pay check hehe. If you like to drink wine, I would limit your intake to stay healthyor else you are going to need to up the vitamins you lose from drinking!  Alcohol turns into sugar without food so it's best to have 1 glass with a meal to counteract the sugar.  Any more then the occassional glass can get you in trouble if you have cancer.

    Chemo & Supplements:  According to my dr. & oncologist, you stop the day before thru the day after your chemo then it's okay to start back up.  This is only for the antioxidents.  If you are unsure, ask your dr.

    Luah:  if you would like to learn more about iodine go to breastcancerchoices.org.  There is a great and informative book about why we need iodine called "Breast Cancer & Iodine" that explains the various details of why were aren't getting enough iodine in our foods and why what we are consuming makes it so we don't absorb iodine.  I think it's key to surviving BC.  Great Yahoo Group on Iodine, too!

    I had my levels checked by a dr and will continue to be monitored through this.  I got cancer for a reason and since no one in my family has BC, I have to look at my own choices and do something different.