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  • claireinaz
    claireinaz Member Posts: 714

    My copper levels were tested by a regular lab.  Reference range should be on the low end (70-175 mcg) mine was 144 and he wants it lower.   Apparently galectine 3 can lower it the best, but that's the stuff that costs $500 a month!  The study was only done with 40 women....but apparently within those forty women there was a high rate of relapse for those with higher copper levels. 

    This is the article's title:  "Tetrathiomolybdate-associated copper depletion decreases circulating endothelial progenitor cells in women with breast cancer at high risk of relapse (Annals of Oncology Advance Access 2/13/13)".

    He mentioned taking zinc and cilantro as well, but that it doesn't work as well to lower copper levels. I googled it and found that a water filter can help, too.

    I just started on citrus pectin today, which is supposed to lower galectin 3, which contributes to tumor cell division, I believe.  My galectine 3 was at 19.6, but we want it at more like 17.8 or less.

    Claire

  • BBinNC
    BBinNC Member Posts: 9

    When I found an "odd" area on my right breast, I knew I needed my Gyno to have a look. That was Easter weekend this year (2013). A doc appointment, mammogram (which was inconclusive) and ultrasound (which revealed a very small questionable area) and a biospy later I learned I have ILC Grade 2.

    Tomorrow is my MRI and since finding out just a week ago that I have cancer, I've been trying to educate myself as much as possible.

    I did meet with a breast surgeon who went over my results. I don't know, however, if I am P, E or HER + yet. I'm seeing a second doctor who came highly recommened on Wednesday.

    Tomorrow my MRI which should give us a better idea of what we're dealing with.
     

  • lemon68
    lemon68 Member Posts: 301

    BBinNC

    I am so sorry you had to join us here but of course glad you found a place to get good info and a shoulder if needed. Sounds like you are taking charge of your diagnosis and learning as much as you can, I did the same. I couldnt get enough info, and I was so glad I did. Its all very scary and overwhelming to say the least.

    Let us know how the MRI goes and what you find out. We are here for you.

    XO Lemon

  • melmcbee
    melmcbee Member Posts: 371

    Welcome BBinNC. Glad you found us. Sending healing prayers and hugs your way.

  • AmyfromMI
    AmyfromMI Member Posts: 115

    Welcome BBinNC! I'm sorry you are joining us but so glad you found us. :-) Hugs to you!



    I'm at rads waiting on boost #4. I'll have three more after today and I'll be done with rads! Total of 30 treatments including 7 boosts. I can't wait to be finished. My rightie is so ding dang itchy! lol! I see my MO May 10 for my tami RX. Actually looking forward to getting on with that phase of treatment.



    I hope all my ILC sisters are doing well! Sending hugs to everyone!



    Amy

  • BBinNC
    BBinNC Member Posts: 9

    Thank you for the welcome everyone.

    I called my Gyno today to ask if the biopsy was E, P or HER2 positive. Those results haven't come back yet.

    What was interesting that my Gyno said that I was lucky to have come in and she asked why I did. I told her that my right breast just didn't feel right. For me it was instinctive.

    My MRI is in a hour and hopefully they can turn the results around for before seeing the surgical oncologist tomorrow.

    I'm 41, adopted and don't know my genetic history. This is very overwhelming.

  • AmyfromMI
    AmyfromMI Member Posts: 115

    Sending hugs BB! It is very overwhelming at the beginning (Who am I kidding?! It is still overwhelming) and the waiting is maddening! OMG! The waiting was the hardest part. I prayed to God for patience (still do). But, you will get through it. We are here to listen, especially if you need to vent.



    Hugs to you and all my ILC sisters!



    Amy

  • lemon68
    lemon68 Member Posts: 301

    BBinNC

    I am sorry you are feeling so overwhelmed, I know it well. I am at the what next stage and it too is no fun. MRI results are usually very quick so hoping you get some answers tomorrow.

    I am also adopted with no family history to know of. I was sure my BRCA testing would be positive, I was wrong negative. Of course I was happy but it would have explained so much. Having been adopted I have never wanted to meet my birth parents or anything like that, but my curiosity sure peeked high with my BC DX. Really made me wonder more than ever where I came from and what is in my path ahead.

    Let us know what happens, your instincts are great trust them.

    Lemon

  • sgreenarch
    sgreenarch Member Posts: 253

    BBinNC, just wanted to weigh in, sending you good wishes. This is a lonely, scary time, but you'll see from this thread (thanks Lemon68) and others like it, that many of us get through it and do OK. Know that it all gets more manageable once you have a plan. Treatments are always evolving and improving. Just breathe (and maybe get a scrip for some xanax...) Amazing story about your instincts. Knowing your body that well bodes well for you.

    Hugs, Shari

  • gramwe
    gramwe Member Posts: 238

    BBinNC.. So very sorry you had to join us. You have found a special place with some caring, educated sisters. They welcomed me not so very long ago, and have helped through some long, scary waits. Know someone is here that has walked the path before you. Sending hugs, and positive thoughts for you.

  • Lily55
    Lily55 Member Posts: 1,748

    bBinC i was where you are one year ago and now i am getting life back on track although still processing emotionally, this is the Best place for support and understanding



    Good luck

  • BBinNC
    BBinNC Member Posts: 9

    Thank you everyone. I had my MRI (which made me feel like I was a cow being milked because of the position I was in lol) and it came back with a second area that needed biopsy. Now I'm waiting again to find out it that is also positive for ILC. The radiologist thinks its a fiboradema. 

    I am E/P + HER2 -. I saw surgical Oncologist and radiation oncologist yesterday. They were both very nice and I feel confident that I'm in good hands at the right place. I asked about BRCA 1/2 testing since I'm adopted, have ILC and only 41 years old. They decided that I do meet the criteria for high risk and are going to do the BRCA test.

    Tentatively (determinate on a negative biopsy result) we talked about lumpectomy and radiation. If the biopsy is positive that will not be possible.

    I'm seeing my regular doc today because I'm so incredibly stressed I need something to help me sleep. I already deal with depression and anxiety and take meds, but this is not beyond those meds.

    I really appreciate your kind and support words. I'm not afraid of what the futures holds, I just want to get things underway.

  • robin_in_SJ
    robin_in_SJ Member Posts: 10

    Hi BBinNC,

    It was just a few weeks ago when I was going through the scan-anxitey phase, I just got home on Tuesday from my surgery.  I think the waiting for tests, more tests and more waiting was the hardest.  I saw my GP and did get something for sleeping and panic attacks, xanax helped before the  MRI and lymph node biopsies.  The next big wait was for the surgery.  The wait was longer then I expected 3 wks after the last test - bone scan.  I just wanted to start the first phase of the treatment.  Upon reflection I think the timing was good, I needed time to prepare myself for the surgery.

    I am feeling a bit stronger each day but it was major surgery and I will need time to heal.  You're in my thoughts and I'm sending you a virtual hug during your very stressful time. 

    Robin

  • kaydeesmiles
    kaydeesmiles Member Posts: 201

    BB

    Welcome and sending you hugs. The waiting is the worst! But the warriors here are great and they have soooooo much information that will definitely help you navigate this scary process.

    I was diagnosed in march. I just had a bi-lat mx and was hoping to move straight into a natural reconstruction but the surgeon found some node involvement that did not show up on my MRI so boom - there goes that plan. Now more waiting for test results to answer the chemo/radiation questions.



    So glad this group is here while I wait.



    Kay

  • lemon68
    lemon68 Member Posts: 301

    BBinNC- The waiting is the worst, we seem to always be waiting for something. I thought maybe I was being taught patience, it didnt work! Here I am now waiting till October to be checked to see if anything is lurking, I guess its never going to end. Xanax got me though alot of it and still does. I hope your new finding it insignificant and you can move on with your decisions.

    Kaydeesmiles- I am sorry they have found some node involvement, I hope you get your answer fast on the chemo/rads. How many nodes did they remove? How many had involvement? Was it in or near the nodes? I had some not in the nodes just near, no chemo. No oncotest either due to tumor size. Its so odd the differences in treatment across the boards, even here on this thread. I just pray the right decisions are made.

    Robin- congrats on your surgery being over. You do need to time to heal, not just your body either the emotional side is so tough. Take care of you right now.

    XO

  • lemon68
    lemon68 Member Posts: 301

    I am in the mood to post tonight. I think I am having a little PTSD. I didnt think I would, I thought I would be fine but I am feeling such a uneasy feeling. From going non stop to test after test etc.. to just waiting. I know I have to find a way to put it away. I get checked in October, how do you just let it rest and put it away for now? I keep telling myself there is nothing more I can do, I did what I was suppossed to do. My MO really scared me with the high percentage of risk of my healthy side. I feel like a walking time bomb. I am not depressed or sad, I just have a underlying fear. I went on a thread the other night and saw one of mine from early Jan. about 6 days after DX. I read it, it was so painful to read my own words, I was terrified that night sitting here crying sick with fear. I never want to feel that way again.

    Did anyone suffer from some PTSD? is all this normal, I assume it is.

  • AmyfromMI
    AmyfromMI Member Posts: 115

    Hi Kim, I'm sitting here free boobing as Cindy likes to call it. :-) I've always had feelings of underlying fear and occasional sadness but no depression. I don't think I have PTSD. However, I think everyone is fearful. How can you not be? People, in general, fear the unknown. For us, that fear is recurrence or a new primary somewhere else. We just don't know if its going to happen. I'm due for my yearly mammogram in June. I'm scared lefty is going to be put off until August or September because that's when righty will be getting checked. Now that righty is almost finished with rads, I'm starting to worry about lefty and if anything is lurking in her. I can't help it. I never had lefty checked after righty was diagnosed. I guess I get to wait too. :-). Patience is not one of my virtues!



    Sending calming hugs your way.



    Amy

  • lemon68
    lemon68 Member Posts: 301

    Hi Amy ((hugs)) my partner in Rads and soon to be partner in tamoxifen!  I insisted upon a contrast MRI of both before I would do rads. I wanted to know about my healthy side ( or the good twin as my DH calls it). MO said they saw nothing but that it could be too small to see, yeah how comforting was that? He also reminded me of that on April 8th after my last rad tx. The odds he gave me for it appearing there were not good. I keep thinking he may have been trying to emphasize the importance of the tamox, it worked. For the most part I am at peace but then my mind goes where it shouldnt go. I get checked in October, BS said 6 months after last rad. I already know if they even suspect anything off they go but how do go though it ever 6 months? Xanax is my only answer!

    Lily I see you just passed 1 year, congrats. Melmcbee- your coming up on a year! And Claire I know you recently had to go though the stress of being checked. I guess we all have to do what we have to do, I am glad we arent doing it alone. XOXO

  • smo23915
    smo23915 Member Posts: 71

    Hi Amy & Kim,

    Just sending my love and thought you might like this article.  I am thinking of going to the Block Center in Chicago, next month to see what they have to say.  

    that-http://lifeovercancerblog.typepad.com/life-over-cancer-blog/2011/10/getting-the-most-out-of-tamoxifen.html#more?utm_source=Twitter&utm_medium=Social&utm_campaign=Twitter then what.  Some tell me take it, some say stop it and some say, it is up to you.  \

    Sharon

  • smo23915
    smo23915 Member Posts: 71

    Hi Amy & Kim,

    Thinking of you both and sending my hugs.  I thought you migh like this article on Tamoxifen.  I am thinking of going to the Block Center next month, to see what they have to say.  They do a lot with Complimentary medicine.

    Sharon

    http://lifeovercancerblog.typepad.com/life-over-cancer-blog/2011/10/getting-the-most-out-of-tamoxifen.html#more?utm_source=Twitter&utm_medium=Social&utm_campaign=Twitter

  • lemon68
    lemon68 Member Posts: 301

    Thanks Sharon, good article it does help. If you do go please come back and report what you find out to us.

    Do you drink the green tea? I drink a ton of regular tea. Do you just buy the plain old Lipton green tea or do you make it? I havent ever tried it. Havent tried the tamox yet but MO says give it at least 90 days for my body to adjust. I had no idea that there were some other benefits to taking it.

    I hate there is no concrete evidence on if it works or if these woman wouldnt have had it come back or gotten it in the first place but to not do it and have it return I would be kicking myself. It sucks but then all of this sucks, I am here and I am grateful we all arent this lucky.

    XO

  • gemini4
    gemini4 Member Posts: 320

    Just as I started tamoxifen I read a blog called The Sarcastic Boob. The author is a BCO member (Scorchy). There's a post called Open Letter to Tamoxifen. If you search it up you'll find it. Scorchy was dx'd at Stage IV and it sounds like her initial treatment was tamoxifen. Apparently the tumor in her breast shrunk dramatically after several months and the mets decreased. (Forgive me if I have some facts wrong.). But bottom line from what I read at her blog, the tamoxifen had a dramatic effect. So I have kept this in mind every morning when I take my pill.



    I even got a weekly pill sorter so that I don't get confused if I took today's pill or not. (My MO said taking two in a day is no big deal, it just might bring on some strong hot flashes -- no thanks!). I am interested in adding complementary components (DIM for one), but I'm committed to tamoxifen, and so far, so good with respect to side effects.



    I highly recommend the sarcastic boob blog, too. You'll fall in love with Scorchy. She is so smart, funny, and sometimes she makes you want to crawl through your screen and give her a big hug. I'm on my iPhone so typing URLs makes me want to throw my phone across the room with auto-correct ... Just google sarcastic boob and you'll find it.

  • Momine
    Momine Member Posts: 2,845

    Agree about Scorchy. I subscribe to her Twitter feed.

  • melmcbee
    melmcbee Member Posts: 371

    Lemon Im sorry that you are experiencing stress. I think I am at the stage where I am numb and trying to just put 1 foot in front of the other. My job has me around people who are terminally ill and it kind of makes me blow my condition off to not being so bad. I also helped my mom call in hospice on my Dad and have been with him on and off for a week so it makes me realize that my situation is what it is and I have done everything possible to fight it so I now have to find peace within myself. I am in pain from the tissue expanders occaisionally whiich reminds me that I am different but I will be having my final surgery for that June 3rd. If I have 1 year left or 50 years left, I want to enjoy them. I didnt even realize until you said something that I am almost a year out. Wow. Oh and by the way xanax has helped me when I needed it too. Now I just make sure I take my zoloft for depression. Every time I walk into a patients room that is critically ill I think to myself " there but for the grace of God go I". These thoughts keep me humble and compassionate in my job and make me count my blessings. I think we all go thru stages of denial and acceptance. Watching my father deteriorate from dementia and he has inoperable rectal cancer with bleeding from the cyber knife radiation they did on him last year, has taken my mind off of me and allowed me to concentrate on him. I am so thankful that I have this place to come to and vent and release my emotions so as to keep myself balanced. All of the ladies on here have truly been a blessing in my life. Healing hugs to all.

  • kaydeesmiles
    kaydeesmiles Member Posts: 201

    melmcbee - healing hugs to you too. wow that is a lot to deal with and you are handling it all with such compassion and grace. i am learning lessons from you.

    momine and gemini4 - the sarcastic boob. i'm on it. scorchy here i come. thank you both for the tip.

    sharon - good looking out with the tamoxifen link. i may be getting way ahead of myself - i just had surgery this week. but it's the trip to t-town that scares me more than scalpels or rads or even chemo. i'm going to be doing a lot of digging on that med.

    lemon - the node involvement really crushed me. so i feel you on the traumatic stress. i knew it was a possibility, was warned by all the docs -  but they had seemed so optimistic saying it didn't appear to be in the nodes and that if i had a mx instead of a lumpectomy it might be likely i could avoid radiation.

    now i'm staring down the barrels of both chemo and radiation.

    i like to do things the other way around. give me the worst case scenario, let me absorb it and prepare for it - get a plan... and then if the news is better that's gravy. (mmmm graaaayveee - something else i'm not letting myself eat anymore)

    they saw a tumor of about a centimeter and a half on all the scans - instead it was about a centimeter BIGGER than that when it was finally removed. my ultrasounds and MRI showed no node involvement. instead it was in 3 of 10 removed. so it goes with lobular sometimes i guess. sneaky bastard. the more path info i get the more comfortable i am that i opted for the double mx. i just have a feeling that something was going on behind the so-called benign mass in the "good twin" (to quote your DH:)... i just think something could have been brewing in there in my case that all this technology didn't pick up (again).

  • AmyfromMI
    AmyfromMI Member Posts: 115

    Happy weekend warrior sisters! I'm doing a happy dance right now. 😃 I finished rads today! Yay me! 6 weeks, 30 treatments finished. On May 10, I'll meet with my MO for my tami RX. It looks like Lemon and I will begin this phase of treatment together since she said she'd wait for me. How lucky am I?! We started rads on the same day, so why not tamoxifen? 😊



    Gemini, thanks for the referral to The Sarcastic Boob. I'm looking forward to reading it. 😊



    Mel, I'm sending hugs. Peace and strength to you.



    Kaydeesmiles, healing hugs to you, sister. I hope you're recovering well from your surgery. That is a lot to go through. Now you have to decide on which course of treatment is right for you. I was prepared to throw everything at it, if needed. As I said above, I just finished rads today and am anxious to start the tamoxifen. I'm not going to let it scare me. Hopefully, I'll be able to tolerate it without too many side effects. If not, I'll cross that bridge when I get to it. I'm going to trust that my MO will help me if I need it. Please let us know what your team advises and what you decide to do regarding treatment. We are here for you.



    I hope you all have a relaxing, peaceful weekend! Healing hugs to all!



    ~ Amy

  • Lily55
    Lily55 Member Posts: 1,748

    Congratulations - wonderful news, here is to your next steps.....

  • lemon68
    lemon68 Member Posts: 301

    melmcbee- I am sorry to hear of your dad. I am sure that is taking a hard toll on you, never easy to see a parent suffer. And to work in the field where you see people daily your braver than you know in many ways. You are right, when we look at things around us we do realize what will be will be and how lucky we are right now, thank you. Dont forget as you take care of everyone to do something for yourself also.

    The Sarcastic Boob- I will search it out tonight, thank you gemini

    kaydee- ugh.. I am sorry you are facing both rads and chemo. Sounds like your decision was the right decision and sounds like your at peace with that. You have got to do it and when you come out on the otherside you can live with peace that you did what you had to do. Easy for me to type, not always so easy to do. This sneaky bastard you would think they could come up with something to better detect it. No matter what we will be here for you to scream, vent, laugh and cry and offer the support we can.

    Amy- my ILC partner in treatment! Today is a SPECIAL day for you!! You did it, I am so proud of you to get though the whole TX never complaining always smiling. You go girl! And Yes I will pick up my tami on May 8th and stare at it until you are ready and down the hatch! I am convinced that it is insurance and I need all I can get. Ive never had a hot flash but I am always so cold so heck I might enjoy the heat wave. lol.. SEs are better than going though this again,just wish there were more guarantees in life!

    Lily- its good to see you.Smile

  • smo23915
    smo23915 Member Posts: 71

    Kim,

    The tea I drink is Brassica Green Tea it has SGS- which is the component in brocolli.  I was told to drink, at least 2 cups, a day.  The one I like is the orange green tea or just the green tea.  I add a little honey so it is pleasant tasting. I also have a vitamix and make a daily drink with 1/2 pound of super greens and tons of green vegetables.  I was talking to a girl on one of the other boards & she recommennded adding Matcha Natural green tea powder.  It is a potent japenese green tea powder.  So now I add a teaspoon of this to my drink.  It does not taste bad at all.  Took a bit to get used to the flavor but I just keep thinking all the good it is doing for my bones & body.

    Here is the info for the one I use:

    http://www.nationalnutrition.ca/detail.aspx?ID=5154

    I am going to call the Block center to see if my insurance will cover the cost, if they do I am going.  I will let you know.

    Sharon

    Sharon

  • Momine
    Momine Member Posts: 2,845

    I was reading back over this thread and checking a few links I had skipped. In one link there was a claim that at least 75% of oncs would refuse chemo for themselves or their family. 

    When I googled the claim verbatim, I got a bunch of hits, where it was phrased the same way (alternative sites freely plagiarize each other, and it is often a bad sign when a piece of info is repeated like that), with no citation (another red flag).

    It turns out, as I suspected, that the survey in question is old, that it pertained to metastatic disease and that it concerned a specific chemo agent, which at the time was new and untested.

    Here is the short article explaining this: http://anaximperator.wordpress.com/2010/05/06/do-75-of-doctors-refuse-chemotherapy-on-themselves/

    "The first thing that stands out is that the 1985 (!!) survey was not, as Philip Day claims, about all available therapies for lung cancer, but about cisplatin, a then new chemotherapy with considerable side effects. The question also pertained to the use of cisplatin as a palliative treatment for “symptomatic metastatic bone disease,” i.e. for incurable (non-small-cell) lung cancer. The 1985 survey found that about one-third of physicians and oncology nurses would have consented to chemotherapy in a situation like this."

    I am just posting this for the sake of any newbies who read the original link to this claim.

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