Calling all TNs

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  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Saile, I'm sorry about your mother. Sorry I can't be much help but wanted you to know I'm thinking of you.

    Jenjen, hoping and praying your scans turn out ok today. Update when you can please.

    I was in the ER last night from 7:00-3:00. I've had lower left abdominal pain for several days and started vomiting last night. So I panicked and went in. They think it's gastroenteritis because all blood work was good except a very slight elevated white cell count. The ER doc mentioned diverticulitis but didn't think my symptoms and lack of fever warranted a CT scan. I had a colonoscopy a year ago and it showed no abnormalities. But if I get worse she said to come back in. I hate that! But I'm no doctor. I should've listened to my hubby instead of exposing myself to God knows what in a packed ER waiting room BUT I was already panicked thinking some sort of mets. So I didn't listen to him and went in. Ugh! I hate how cancer robs us of our security. Now I just pray I don't end up with something worse than what I went in for. Anyway hoping we all have a good day today! Thanks for reading.

    Love you ladies and guys too!!! XO!!

  • Wrenwood47
    Wrenwood47 Member Posts: 68
    edited December 2014

    Metformin inhibits metastasis of triple negative breast cancer cells

    Posted: November 9, 2014

    News type:
    Breast cancer study
    Conference:
    Proceedings of the 2014 AACR Annual Meeting
    Study name:
    Metformin inhibits angiogenesis, local and metastatic growth of triple-negative breast cancer by targeting two classes of adipose tissue progenitors

    Metformin is a drug used to treat type 2 diabetes and metabolic syndrome, conditions that increases breast cancer risk. Diabetic women taking metformin have been shown to have lower breast cancer risk and better response to chemotherapy than diabetic women not so treated. Metformin appears to reduce risk of breast cancer by lowering circulating insulin levels and reducing cell proliferation.

    In established tumors, metformin promotes apoptosis (programmed cell death) and inhibits angiogenesis of breast cancer cells. Studies have reported anticancer effects of metformin in all breast cancer subtypes, including in chemotherapy-resistant cells. Patients using metformin for type II diabetes or metabolic syndrome have improved breast cancer survival. However, metformin appears to be particularly active against triple negative (ER-/PR-/HER2-) breast cancer. Now a new study presented at the 2014 American Association for Cancer Research (AACR) Annual Meeting has described how metformin reduces triple negative breast cancer angiogenesis, growth and metastasis.

  • Radical2Squared
    Radical2Squared Member Posts: 350
    edited December 2014

    Sailes,

    I am so sorry.... once you get to the point where your mother is, 1st ask her if she wants to try anything possible (it's hard to hear but sometimes your wishes might not be hers.) If she's game... get on the Internet and search out every cancer center studying triple negative breast cancer. Start local and get more broad and get on the phone to ask about clinical trials.

    Example: 3 years ago Sloan did one where you had to be triple negative stage 4 with bone Mets. I know of a girl who was in the trial and though her bones are still riddled with tumors, they have all shrunk and continue to do so....

    Another: Abrahmson Cancer Center in Philly (where I go) was looking for stage 4 triple negatives this summer. I'm not stage 4 and don't know if they are still looking or how far you are...

    These studies are going on all the time and they are not a guarantee but if you're out of options, doing the legwork to find one is your best bet.

  • BanR
    BanR Member Posts: 238
    edited December 2014

    hi Saile

    sharing a very recent news article. it talks about a vaccine which slows down metastatic tumor growth in bc patients.

    do have a look and discuss with your doctor..

    http://www.shape.com/lifestyle/mind-and-body/new-b...


  • lrm216
    lrm216 Member Posts: 534
    edited December 2014

    Hi Teka! Happy belated Thanksgiving. I don't post too much anymore other than when I have something of real substance to say (which is rarely, lol!), but wanted to send out a hello to you!

    Linda

  • lilyrose53
    lilyrose53 Member Posts: 120
    edited December 2014

    Saile - So sorry to hear your mother has brain mets. This disease sucks! Try going to the tnbcfoundation website. They have quite a few people on there with mets and lots of helpful information about ongoing studies. Good luck to you and your mom. Hang in there.

    Hugs, lilyrose

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited December 2014

    Saile can imagine how horrible to hear those words from the doctor but don't give up hope.  People have lived for years with brain mets and hopefully your mum will be one of the luckier ones.  Sending warm hugs to you and your mum.

    Linda and Teka so good to hear from both of you.  Hope you are keeping well and busy. 

    Luvmydobies hopefully all you have is a dose of the good old gastro so hoping you feel better today.  Can imagine where your mind went though.    

    I've got a lovely day off work tomorrow to go Christmas shopping. I've nearly finished all of mine so I'll take it as a rest day instead with a little bit of a lie in. Bliss.    

     

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,188
    edited December 2014

    This has just come through on our 12.30pm news. 

    Cancer experts are expressing cautious excitement at news a vaccine could effectively stop cancer from spreading in patients suffering from breast cancer.

    Metastatic or advanced breast cancer is never a happy prognosis — essentially, it means the cancer has spread to the bones, liver, lung or brain and patients must undergo some pretty heavy chemotherapy to extend their chance of survival.

    The latest frontier in cancer research is called immunotherapy and involves firing up the immune system so it recognises and fights cancerous cells. The challenge, though, is helping the immune system hone in on the offending cells.

    Now researchers from Washington University's School of Medicine think they might be onto something that prevents the immune system from attacking an already weak body.

    They've developed a vaccine that stimulates particular white blood cells to seek out a protein called mammaglobin-A — which exists almost exclusively in breast tissue and is found in unusually high levels in breast tumours — and destroy it.

    They've just completed the first stage of trials, which involved 14 patients, to confirm whether the vaccine was safe and didn't cause adverse side effects — and even the scientists who developed it were floored by the results.

    "Being able to target mammaglobin is exciting because it is expressed broadly in up to 80 percent of breast cancers, but not at meaningful levels in other tissues," said breast cancer surgeon Professor William Gillanders, who conducted the study.

    "In theory, this means we could treat a large number of breast cancer patients with potentially fewer side effects. It's also exciting to see this work progress from identifying the importance of mammaglobin-A, to designing a therapeutic agent, manufacturing it and giving it to patients."

    Unlike chemotherapy, which usually leads to awful side effects, the patients in this study reported few side effects, with only mild to moderate rashes, tenderness at the vaccination site or mild flu-like symptoms.

    But the clincher was that a year after receiving the vaccine, half of the patients had no cancer progression, compared to only a fifth of a control group who they were compared against.

    Dr Alison Butt, the National Breast Cancer Foundation's director of research investment, told ninemsn that, currently, there arefew therapies to tackle metastatic breast cancer.

    "Breast cancer cells are very clever — they have lots of ways of subverting the body's immune system so they are not recognised or attacked," she said.

    "This is turning the tables on them, if you like, and trying to harness the immune system to target breast cancer. It will be very efficient, specific and effective, so it's a really exciting step forward."

    Dr Butt said it only takes one or two cells travelling throughout the body to start growing and spread cancer.

    "You can't tackle it with surgery so you need to find ways of finding all those metastatic cells in the body and clearing them," she said.

    "Using the immune system like this vaccine is aiming to do is hopefully a very effective way of doing that."

    Professor Ian Olver, CEO of the Cancer Council, was similarly impressed.

    "This vaccine may not be as toxic as chemotherapy, which targets any rapidly dividing tissue," he said.

    "Chemotherapy relies on the fact that the normal body recovers and the tumour doesn't. Targeting the tumour is likely to be more effective and less toxic. Now they can go into bigger studies of effectiveness."

    The vaccine would be ineffective in the 20 percent of breast cancer patients whose tumours don't produce mammaglobin-A.

    The study was published in the journal Clinical Cancer Research.

    Author: Kimberly Gillan. Approving editor: Kristen Amiet.


  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Thanks Cocker! And thanks for the info about the vaccine. Interesting stuff!

  • JAN69
    JAN69 Member Posts: 731
    edited December 2014

    Hey Wrenwood Long time, no see. Thanks for the metformin information. My PCP is so up-to-date that he put me on it. My endocrinologist (for a iffy thyroid) at UCLA smiled in delight that I was on Metformin for my TNBC.

    How are you? I think we drive near your old street occasionally and think of you. Hope you are getting some nice rain; we've had about 3/4" today. So many dead trees up here so the rain is just too late for them. We've lost 4 of our 100 year old ponderosa pines, lots and lots of cedars and redwoods. Keep in touch Jan

  • Tobycc
    Tobycc Member Posts: 578
    edited December 2014

    JAN...how much are you taking? I take it for well controlled diabetes

    Kath

  • JAN69
    JAN69 Member Posts: 731
    edited December 2014

    Tobycc I take 500 mg twice a day. Wouldn't it be fantastic if Metformin kept us safe from mets! After I posted to Wrenwood, I remembered that about 2 years ago Metformin was a hot topic on this thread. So maybe some other long-timers will chime in with their experiences. Good luck with diabetes and TNBC. Jan

  • lisaj514
    lisaj514 Member Posts: 289
    edited December 2014

    I'm taking 850mg metformin 2x/day. Started it after finishing all treatments (chemo and rads) in July. Brought the article to my mo and she said fine but wouldn't have ordered it unless we discussed and I brought it to her attention. Of course this forum is where I got the info from and articles, started with inspiredbydolce and I thank all of you. Hoping it will do some good and prevent recurrence but will never really know. Having my first mamo and us since last October at diagnosis on Monday. Had MRI end of August and all was clear. Mammo and us was to be sch for jan but asked if could be moved up due to concerns about R breast-my "good one"(zingers like I used to get in L after rads). Told mo about this and she feels nothing on breast exam as well as nothing on MRI in August but I'm still concerned. Why am I feeling this on non cancer side?

    Thanks cocker for info. Enjoy your "lie in" (we "sleep in" here in ny)

    Have to go take my evening metformin now, as well as calcium, curcumin and glucosamine/chondriotin. My joint and foot pain has improved since starting the curcumin and gluco/chondriotin, don't know if it's that but...whatever it is I'll take i

  • navymom
    navymom Member Posts: 842
    edited December 2014

    I take 850mg twice a day. That is the study dose. Started it back in 2012. Onc said no but PCP said yes. Long story short....I ended up needing it for Diabetes anyway. Started at a low dose (1/2 tab once a day) and very gradually got to full dose. Most common side effect is temporary....diarrhea. I had the total opposite problem and finally figured out that I needed to switch my calcium supplement from calcium gluconate to calcium citrate. I am hopeful that it will keep recurrence at the curb. BUT, as we all know, there is no magic bullet for this beast that we have to deal with. And I am also hopeful that a vaccine will be the way of the future for all cancer. The sharing of information is one of the many things that I dearly love about BCO and out TN thread in particular. I would have never known about metformin if it hadnt been for this thread. And God only knows how long a DX of diabetes would have remained buried.

    nice to see all you gals who have been away for awhile!

    I went for my dexa bone scan today. Anybody else having osteopenia/osteoporsis issues since chemo??? Got my fingers crossed that my bones have not worsened. I am knocking on the door of osteoporsis and just do not want to start taking anymore medicine, but I certainly don't want a fracture either!


  • breastcancerhusband
    breastcancerhusband Member Posts: 69
    edited December 2014

    jenjel - I remembered you said you had your scan/appointment today. 

    I'm sending you positive thoughts from the UK.

    Hope all goes well



  • JAN69
    JAN69 Member Posts: 731
    edited December 2014

    Looks like I need to ask my PCP to up my metformin dose from 500x2 to 850x2. I had a nuclear bone scan yesterday - sitting on a pincushion today. Colonoscopy next week. Just hope this isn't the start of something again.

    Navy Mom, sorry you ended up with diabetes. Frustrating. Sure hope your bones are still strong. I had thin bones to begin with and my recent bone density test showed bones are in the same shape as before BC.

    Wishing everyone good health and energy while you prepare for the holidays. Jan

  • jenjenl
    jenjenl Member Posts: 409
    edited December 2014

    Thanks bchusband. Just finished the scan, now it's the pray and wait. I hope I'm wrong about the expected results!

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited December 2014

    Hi everyone! I too am on Metformin 850 twice a day. Before I went on it, I researched the various generic brands, and found many women online (outside of the bc boards) that had gi issues with the generic, and many recommended the brand. So for me, I went on brand name Glucophage from the start. I did not have any problems at all with the dosage, frequency or any side effects. Since that time I have searched for women on the bc forum who were having problems with the generic forms and I sent them info that I had at the time about the brand. Many of those women then switched over from generic to brand, and all reported that their gi issues went away. At the time when I researched Metformin, there were over 14 generic brands listed, some made in the US and some outside of the US. During my research of the generic brand manufacturers, there was 1 brand that seemed to be less problematic, I think it was Teva. There was also one brand manufactured outside the US which I had read numerous posts abut gi issues with this one manufacturer. So while we are on the subject of Metformin it might be helpful to list the name of the manufacturer to have some good options for our members - and also maybe put what pharmacy dispenses that brand, as not all pharmacies carry the same brands. My Glucophage is filled at Costco Pharmacies - the price is higher than generic and I pay $100. I'm glad I was able to help some of you become aware of Metformin, as I too learned about it from these forums on bc.org.

    I also did not get it through my Onc, but when I updated him that I was on it, he was fine with it. My PCP who I went to, was a brand new PCP to me - who I had never gone to before. I went to him as I had not been to a PCP in over 10 years and thought I had better get caught up on whatever it is they do on those annual visits. I did not have a previous relationship with this PCP, so I felt that showed the value of how beneficial he thought the Metformin would be. Then over the Summer I received a letter that he was retiring, and I thought "oh oh", I researched PCPs but ultimately decided to try the new PCP who was going to be at the practice, but not necessarily taking over all his patients. He is a doctor from NY graduated less than 5 years ago - and I looked forward to hearing his opinion on Metformin. He will be keeping me on it and both PCPs felt it was a great strategy. People have asked, so I'm including it here ... I am not diabetic or pre-diabetic and my cholesterol is in the optimal range on everything.

    JenJen - best wishes on the scan today, many prayers and NavyMom also hope your test results on the dexa scan are great.

  • eileenpg
    eileenpg Member Posts: 431
    edited December 2014

    Inspired by Dolce= I went to my MO on Monday for my last Chemo. Thank god. He did not know anything about metformin. Did not want to prescribe until he knew side effects. I start radiation next week for 7 weeks. I will then return to my original MO where I was diganosed in Baltimore.  I will ask him. If you have any other info please pass along. I have goolged this and I trying to educate myself. I saw that Vit D 3000 unit a day was beneficial. So, I had my Vit D level drawn on Monday. Don't have results. However, I bought Vit D with a soybase in it. So, I think I will stay away even though soy is not an issue with TN.

           Thank you

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited December 2014

    Hi Eileen,

    I don't have access to my original links of research anymore.

    I have ran a search and gone into a site called Food for Breast Cancer (which has provided relevant and useful information) and if you type in the word Metformin a bunch of links to outside articles and studies come up. When I was researching this a couple of years ago, I remember one study specifically looked at Metformin during chemo to assess if the addition of it during chemo produces an even greater benefit than chemo alone. I hope the site can provide you with the additional data that you need for your next discussion.

    Also, the information posted above by another member was also the same one I pulled up from the site - here is the link: You can read this article and when you are on that site you can then type in the word Metformin for more data.

    http://foodforbreastcancer.com/news/metformin-inhi...

    Here is another link from an alternate stie, and I do know for certain this is one of the articles that I did take to my original PCP. It was 5 pages printed:

    http://strittermed.org/breast_equity/?p=44

    As far as side effects, many Oncs use an e-serv list where they are able to communicate and share information with other medical professionals. Perhaps he has a resource like that and he can reach out to other professionals in Oncology as well as PCPs to uncover potential side effects and further discuss the benefit to risks that might be seen with patients.

    Edited to add: This is the Trial Info page (link below) that I also took into my original PCP. I printed it and took it with me because it had the 850 dosage listed, so he could validate the appropriate dosage.

    http://meetinglibrary.asco.org/print/570748

    Have a great day and the very best to you! Oh and congrats on your last chemo being done!

  • Wrenwood47
    Wrenwood47 Member Posts: 68
    edited December 2014

    Hi Jan, I am surprised you remembered my old street. Was back a few weeks ago for a funeral. Am glad to hear you are getting some rain. CA is really hurting and not just the central valley.

    I have been on Metformin for over a year. My 500mg 2x a day was not keeping my A1c at an optimal level. My PCP upped my dosage to 500mg 3x day. I retest in 3 months. I am very comfortable with this dosage and feel it has been beneficial in keeping my weight in check and cancer at bay.

    I just had my MRI and it was NED....I will be 4 years out in March. Only one year to go.

    Best wishes to all on this thread....some wonderful, strong women have carried it for years and even one husband.


  • Saile
    Saile Member Posts: 3
    edited December 2014

    lilyrose53 thanks for concern, will surely go through the site you have mentioned.

    Luvmydobies Thanks but you do not have to be sorry. So called god is playing his cards, he does not care for anyone. He should be the one, who should be sorry.

    BanR thanks for sharing the information, i read the article and found its still in the research stage, the vaccine is still not out. More information will be appreciated.

    Radical2Squared thanks for such information, few years back my mother said she said she will not do any treatment in case it re occurs, but when it came and she saw my face, she took everything as if nothing was painful. Even today she says she will do everything possible and fight for me.

    She is an inspiration for me, the way she has fought all odd and won till now.

    @all thanks to all for wishes, hoping for the best.

  • MrFu54
    MrFu54 Member Posts: 4
    edited December 2014

    Hello Ladies, I do not post often but I like reading all your stories. Nov 3rd was my last treatment. Here I am wondering what I need to do to prevent a recurrence. I for sure will mention this to my Onc Dr when I see him Feb 2015. Millie

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 987
    edited December 2014

    Congrats Wren! While speaking of anniversaries I wanted to let you all know that we will have a 10 year survivor in 2015! SylviaExMouthUK on the UK TNBC forums is about 6 months from that milestone! Also remember NoniJones who posts annually here for us. She is somewhere near 28 years out and her daughter I believe is also a TNBC survivor.

  • BanR
    BanR Member Posts: 238
    edited December 2014

    hey everybody..

    Am sure most of us would have undergone genetic testing. Was reading an article from mayoclinic which states

    "......They found deleterious mutations in almost 15 percent of triple-negative breast cancer patients. Of these, 11 percent had mutations in the BRCA1 and BRCA2 genes and the rest had mutations in 15 other predisposition genes, including the DNA repair genes PALB2, BARD1, and RAD51C. No mutations were found in predisposition genes involved in other processes like the cell cycle."

    Is there a way to undergo genetic testing for the other genes? How many of you have undergone testing for the PS53 gene?

    Thanks for the info cocker.

    Thats quite inspiring, inspired...28 year survivor..sounds awesome!!

    Read through all the info on metformin. Not yet prescribed to me...will keep asking for it though. Going for my third three monthly check up tomorrow.

    Lost my friend, I was mentioning about a few months ago, to diffused stomach cancer. Her kids age 6 and 2 are in shock. I have no words..

    Another distant cousin reached stage 4 ovarian cancer. Too many mets news around me these days...

    Wonder how many more decades will it take for a cure to come up...



  • jenjenl
    jenjenl Member Posts: 409
    edited December 2014

    Ban , i reengaged my genetic counselor to do a wider panel, i go Monday. I'll let you know.

  • Curlyq1974
    Curlyq1974 Member Posts: 87
    edited December 2014


    Augh Ban!  I'm jumping on the vent-wagon.  I am so mad, angry, frustrated - you name it!  A dear girl at work that I mentor, who has watched me from diagnosis thru chemo, rads, surgery and back to work, came to me in tears today.  Her mother told her last night she is TN.  G-d dammit!!!  And her aunt - mom's sister was dx in July with bc and she just came back BRCA 2+!!!  G-d dammit, g-d dammit!!!  Mom already tested for the mutation and the waiting for the results has begun.  I am heart broken for her.  It is one thing to go thru it... it is another thing to watch your parent go thru it.  And I needed to be delicate, because I know I did not tell my son all the nitty-gritty details and stats of this disease.  I didn't want him to worry.  I wanted him to live life, be happy, and know I would do what I could - but so much is completely out of control.  So as she was talking about her mom and what is going on things just didn't make sense - her mom I am sure is holding back and my heart aches for her, her mom, her family and friends... augh!! I HATE this damn disease!!  I am in tears and very upset.  And then to think that she too may be BRCA 2+... AUGH my stomach hurts thinking about the waiting and then the decisions that have to be made if she is positive.  She is so young, not married, no kids....  I pray they come up with a cure... a vaccination, anything!!!  I HATE HATE HATE this disease....  I gave her this website, because you ladies have been such a blessing thru this journey.  To know I am not alone, to understand that others go thru worse, sometimes better, but mostly to know that I am NOT alone.  My emotions have been all over the map, and you all have been there.  I am so very, very thankful.  Just wish that we didn't need to welcome more members to our club.  Wish that we were all the "elite" ones that there ever will be.... 

  • jenjenl
    jenjenl Member Posts: 409
    edited December 2014

    No call today on result, I didn't think I would but i sure did hope and I was too scared to call. Anxiety high...mental torture.

  • Luvmydobies
    Luvmydobies Member Posts: 476
    edited December 2014

    Totally understand all the venting! This disease SUCKS!!!!

    Jen, hang in there! We are holding your hand.

    Hugging everyone!!! Wish we could all hug in person. We all get each other and I'm grateful for that.

  • Titan
    Titan Member Posts: 1,313
    edited December 2014

    popping in for a quick minute...saw my BS today and he "felt" something...wow..I was freaking...had a quick ultrasound and there was nothing there except for fibrous tissue...whew...what I'm trying to say is this...though I am 5 1/2 years out...be sure to see a doctor everything 6 months...if i had waited a year...and this was something I would have been toast by next June...just saying...

    love you guys...