Calling all TNs

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  • Lovelyface
    Lovelyface Member Posts: 674
    edited December 2011

    Wow!  Where do you guys get the metformin from?  Is it over the counter?  If this is the drug they prescribe for diabetes, one begins to wonder why and how it helps a BC patient not having a recurrence.  Is BC related to sugar consumption or something to do with sugar imbalance.  Why then I don't have diabetes?  It doesn't make sense.  Sorry ladies, I am not sure if anyone out there could possibly be like me, but my mind cannot help but just wonder all the time, what the hell causes this diseases, what? what? and what? 

  • riley702
    riley702 Member Posts: 1,600
    edited December 2011

    I think there is a correlation between sugar intake and BC rates.

  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Titan,

    Today, 2nd 3-month follow-up visit with MO and doing okay.   However, I was obsessing over a lump in armpit on BC side which hasn't changed in 2 years but took me forever to find and have MO check, and was told to quit poking at the poor tiny lump.Embarassed   Well (F) him, and that is why I don't like to do self examination.Yell   I forgot to ask and he didn't mention anything about metformin.Frown

  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited December 2011

    Hi all, been reading this thread a long time but don't post here much. I finished rads in August and have just had my 6 mo onc check as well as post- treatment mammo. NED right now-yay.



    I asked my MO about metaformin last week and he was less than enthused. He is every active in research and clinical trials. I am part of one for the chemo I received. He felt it was much too early to consider. Don't mean to discourage those already in trial; I hope it does all they say it will. But just wanted to give another perspective. I certainly think it is worth a discussion and I will probably bring it up again in 6 months. I would love to have otheervoptions for treatment!



    Personally I am not convinced of BC link to sugar consumption. The drug was found to show some effectiveness in these being treated for diabetes. but those with diabetes did not eat too much sugar. Many w/BC were every healthy eaters and physically fit and got it. My sister and I have every similar diets, about the same weight proportionally; why did I get it and she didn't? And I am BRCA negative, so her future risk is slight. Still lots of unknowns out there.

  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2011

    Huskerkkc:

    My onc must do lunch with your onc.  She also does much research and all clinical trials as well and won't use the metformin on me either. Saw her last September and see her again January 20th - will ask her again if anything's changed.  I always go in there with research papers I have copied and I think I'm going in with something really "hot" and she just laughs and tells me that I will be informed immediately should she find something ready to be of help to me and my TN cancer, and keeps reminding me I am not a petri dish or a test mouse.  Oh well, sigh.........

  • Titan
    Titan Member Posts: 2,956
    edited December 2011

    Ha ha Bernie..you made my day with your "diet"...all except for the creamed spinach..yuk.

    Michelle..yes..you are in the right place...tips for moving on??  hmm...I guess you have to do what you have to do...I'm pretty much living as I did before BC...with a few changes..I eat a little better, exercise a little more, take more vitamins..D3 is important..but I'm sure your onc has told you that...or will..exercise seems to help with reoccurence with TN's..so why not...even if it doesn't help..walking or jogging a few times per week will make you feel better..mentally and physically and keep the weight off...you seem to be handling the treatments well...it does suck that the eyelashes fall out at the end of treatment..but they grow back quickly...

    I had a hard time realizing that exercising is going to be a life long thing...but it is kinda fun..now that I have made it a routine.

    Teka..you totally crack me up.

    Lovelyface...I think that Metformin is a prescription only...why do I hate the fact that it has "Met" in its name.

    I agree about the "cancer loves sugar" myth..I do think that is a myth...

  • Titan
    Titan Member Posts: 2,956
    edited December 2011

    Babs..nice pics of you and your little man..you guys look soo happy...Disney is such a wonderful place!

    Sugar..Cancun..wow..have fun..lucky girl....still haven't made it there yet.

    We are going with some friends to a casino for New Years..staying in a dive motel nearby..I'm looking forward to it..wish me luck!

  • AprilNJ2010
    AprilNJ2010 Member Posts: 1
    edited December 2011

    Hi Ladies

    Just joined I was DX Jan 2011 Age 42 found lump myself-Underwent Bi-Lat Masc - Chemo 4 DD A/C - 12 Taxol - finished 9/8/11 I had final recon 12/7  my swap for silicone implants that was EZ part. BRCA - NEGATIVE

    Im coming up on 1 year hard to beleive, lately I have had alot of anxiety I was good throughout treatment but now, I think about recur all the time, even though I "think" my prognosis is fairly good i.e no node involvement.

     My Onco only wants to see me every 4 months and doesnt do any imaging unless I have symptoms? thoughts on that ladies? any fellow Stge 1 ers what is your Onco follow up?

    ThanksLaughing

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited December 2011

    Heather - here is the link to all the Metformin clinical trials.

    http://www.clinicaltrials.gov/ct2/results?term=metformin+and+breast+cancer

    This is the one for taking metformin as a preventive after finishing treatment:

    http://www.clinicaltrials.gov/ct2/show/NCT01101438?term=metformin+and+breast+cancer&rank=6

  • mitymuffin
    mitymuffin Member Posts: 337
    edited December 2011

    LRM216 and Husker, both of you sound like you have sensible Oncs. Please post if your Oncs come up with any advice!

    There have been hints of inflamation/breast cancer links...but all so undetermined. My Onc at MSK said to take a baby aspirin daily as possible help in preventing reoccurence.

  • nans
    nans Member Posts: 45
    edited December 2011

    mmizerak-we're pretty similar too.  I had 4 A/C and 12 Taxol.  Tomorrow I finish the last of my 6 1/2 weeks of radiation.  Radiation is easier than chemo.  No nausea...at least for me.  A few ladies on the November rads board had a little bit.  The fatigue isn't too bad but you have the chemo fatigue still hanging on so some days can be worse than others.  Your doctor will probably tell you to use aloe or aquaphor on your radiation area.  I used aquaphor for the most part 4 times a day. It's like vasaline or Vicks vapor rub without the smell.  It works well but stains your clothes so get some lovely soft big tshirts. I found great ones at Target and Kohls that were very inexpensive.  On the bright side your eye lashes and eye brows grow back really fast.  Your hair will start coming back soon too.  If there isn't a rads board for the month you start rads do start one up. It's really helpful to have other ladies to talk to who are going through things at the same time.

    LuvRVing-I'm new to this board so would love to see the links to the Metformin research too.

  • mags20487
    mags20487 Member Posts: 1,591
    edited December 2011

    I read somewhere ---can't remember where--that there is a link between TNBC and metabolic syndrome.  That is where the metformin comes in.  It is in a phase III trial currently. Which means it has been successful thru 2 phases--at least that is what I understand

    Maggie

  • Fighter_34
    Fighter_34 Member Posts: 834
    edited December 2011
    Correction ladies my dosage is 850mg...for metaformin.
  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited December 2011

    Thanks Michelle,

    I did ask about it at my last appt which was just a follow up from the end of Chemo and he said no, it's not for me.  Really would like to push him on it this time.  I know prior to my diagnosis my sugars were bordering trouble and I am/was overwieght, I have managed to lose quite a bit but am still very heavy so if the Onc won't prescribe maybe I can beg my primary. 

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited December 2011
       This is from an NCI Bulletin published in September 2009"Low doses of the commonly used diabetes drug metformin may be an effective treatment for breast cancer, primarily because the drug appears to target breast cancer stem cells, Harvard Medical School researchers reported online September 14 in Cancer Research. Cancer stem cells, also called tumor-initiating cells, are thought to be relatively rare cells that can give rise to new tumors and are resistant to standard cancer treatments.In the study, the combination of metformin and the chemotherapy agent doxorubicin was more effective than either drug alone at eliminating cancer cells and cancer stem cells in cultured cell lines of four genetically distinct breast cancer types, including HER2-positive and triple-negative breast cancers. In a breast cancer mouse model, the drug combination eliminated tumors and prevented regrowth, whereas doxorubicin alone only reduced tumor size and did not prevent regrowth, and metformin alone had little effect."With both drugs, regression was quicker...and, more importantly, there was no relapse," said senior author Dr. Kevin Struhl during a press briefing on the study.When the researchers analyzed cell populations taken from the tumors of mice after three cycles of treatment, they found almost no cancer stem cells in the animals that received the drug combination but found the stem cells easily in tumors from mice given only doxorubicin. The highly beneficial effect of the combination treatment and the limited effect of either drug alone support the cancer stem cell hypothesis, Dr. Struhl said.The results support previously published epidemiologic and laboratory studies that have suggested metformin has an anticancer effect, Dr. Jennifer Ligibel, a breast cancer researcher from Harvard University who was not involved with the study, said during the briefing. As a result, a large phase III clinical trial will test whether using metformin after standard treatment in women with early stage breast cancer can improve outcomes. The trial is being sponsored by NCI and coordinated by the National Cancer Institute of Canada. Trial investigators hope to start enrolling patients in the study next year, Dr. Ligibel said."Canada started Phase III trials in 2010, and the US started early this year, I think.I was taking it while on chemo and had a complete pathological response.  I think this is something we should all watch closely.  In the meantime, if you have a fasting glucose over 100 or are overweight, your PCP could prescribe metformin and it wouldn't be an "off-label" use.   The side effects are minimal - a little GI distress at first and that's about it for the overwhelming majority of people.  Unlike other classes of diabetic drugs, it doesn't cause blood sugar lows.  I plan to take it for the rest of my life!
  • CharB22
    CharB22 Member Posts: 310
    edited December 2011

    Interesting stuff about Metaformin - I had gestational diabetes with my first pregnancy 14 years ago and was going to get my sugar levels checked at my annual checkup before the BC dx. I could stand to lose about 30 lbs, so it makes the connection between diabetes and cancer all the more plausible in my mind. Hmmm....

  • journey4life
    journey4life Member Posts: 517
    edited December 2011

    Asked my MO about Metaformin yesterday - he wasn't too familiar with it. Just said it must be a clinical trial. I think I'll copy Michelle's post and show it to him! 

    I too could stand to lose some weight...looks increasingly like a pattern.

    Lisa

  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited December 2011
    Here is this guy who really takes care of his body; he lifts weights and jogs five miles every day.
    One morning, he looks into the mirror and admires his body. He notices that he is really sun tanned all over except one part and he decides to do something about it.
    He goes to the beach, completely undresses and buries himself in the sand except for the one part sticking out.
    Two little old ladies are strolling along the beach and one looks down and says, "There really is no justice in this world."
    The other little old lady says, "What do you mean?"
    The first little old lady says, "Look at that."
    "When I was 10 years old, I was afraid of it."
    "When I was 20 years old, I was curious about it."
    "When I was 30 years old, I enjoyed it."
    "When I was 40 years old, I asked for it."
    "When I was 50 years old, I paid for it."
    "When I was 60 years old, I prayed for it."
    "When I was 70 years old, I forgot about it."
    "And now that I'm 80, the damned things are growing wild!!"
  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited December 2011

    OMG...ROFLMAO!!!!!!!!!!

  • Suze35
    Suze35 Member Posts: 1,045
    edited December 2011

    Posting from the road!



    I am headed back home from our Christmas vacation in Williamsburg VA. We had a great time! I was able to visit with my step-brother, step-sister, and their families (we are very close knit). We went to Colonial Williamsburg and Busch Gardens (which is all decorated and lit with a Christmas theme). We took our time, I used a wheelchair, and it was so nice and stress-free! We brought a small tree that the kids decorated, and they were so happy with their gifts, there were no complaints about how we scaled down. I was very proud of them :).



    We are driving home today, and just loaded up on Krispy Kreme donuts (4 dozen - lol - we don't have any near us) and I have my treatment tomorrow. So far I think it is working, because I no longer have a cough, and am not taking anything to suppress it. So that's a good sign.



    I hope everyone had a great holiday, and I will try and catch up soon.

  • Lovelyface
    Lovelyface Member Posts: 674
    edited December 2011

    Hi Suze, it is so so so good to hear from you and to hear of all the love which surrounds you.  So glad to hear you no longer have the cough, yes, that is a hugely great sign.  I want some Krispy Kreme donuts too, yes I do, yummy!

    Anyone heard from LauraJane these days?

  • KSteve
    KSteve Member Posts: 486
    edited December 2011

    Yay, Suze - So glad you enjoyed the trip.  Sounds like some great family times.  Enjoy those Kripy Kremes!  Happy New Year!

    Kathy

  • hope123108
    hope123108 Member Posts: 58
    edited December 2011

    Hello Ladies,

    Don't post often but always follow along. I have Mets to liver and am TN, 45 years old and just recovered from left lobe lung surgery in July, completed 6 taxotere.  Needless to say the drug failed me and the cancer moved onto the liver. My regular Oncologist wants to try Ixmpera and 2nd opinion wants to try xleoda and am torn which one to choose. Wondering if any of you ladies have had success or harm from either treatment.  Would appreciate any advice or feedback.

    Wishing all the best of health in the new year.

    Hope 

  • journey4life
    journey4life Member Posts: 517
    edited December 2011

    Suze, you were in my neck of the woods! Other than a few days of rain, hope you enjoyed our unseasonably warm weather.  I have to chuckle about the Krispy Kremes - my sister is here from Maine and buys KKs every single time we shop! She loves 'em too.

  • TifJ
    TifJ Member Posts: 1,568
    edited December 2011

    Interesting day at the MO's office for my 3 month check up today. He asked if I was willing to participate in a research study that the University of Kansas  (which my cancer center is partnered with) is doing on triple negatives. They took five vials of blood for it (took a half hour and 2 pokes to get it all out of my little veins!). They are researching potential genetic links other than BRCA 1 and 2. I asked about Metformin. He said he would like to do a little research on it first and will call me in a week. I have a feeling he will come back with "it's not for you". He said his biggest concern using Metformin is the drop in glucose levels. If you are sleeping and your levels drop very low- it kills brain cells. I haven't read up on this myself, but it kind of sounds like he is against it before even knowing much about it. We'll see!

  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2011

    Mitymuffin - I too take the baby aspirin and have been since I stopped chemo Sept. 2010.  I read that results of that trial where they had the triple neg nurses taking 81 mgs. of baby aspirin everyday and there were no recurrences, whereas the group of TN's not taking the aspirin did have recurrences.  Who knows, but I felt since we have nothing else to take I'd run that by my onc, with the research papers I collected on that particular trial (I think it was done in Sweden, not sure), but she said it makes sense, since cancer is known to be related to inflammation, and aspirin fights inflammation, she said go for it.  Have been taking it ever since.  At least taking that little pill every day makes me feel as though I'm doing something!  I take it with my Vit. D and calcium pills each a.m.  Here's hoping.......

    Linda

  • TifJ
    TifJ Member Posts: 1,568
    edited December 2011

    Linda- just plain old baby aspirin, like Bayer?

  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited December 2011

    Tif - Tell Monaghan that metformin doesn't cause low blood sugar - that's the beauty of it even as a diabetic drug.  And that's probably why they didn't hesitate to use it in a clinical trial for people who are not diabetic.  And I think he takes an aspirin every day - he told me that he did when I was seeing him.

     http://www.drugs.com/pro/metformin.html

    "...Unlike sulfonylureas, Metformin does not produce hypoglycemia in either patients with type 2 diabetes or normal subjects (except in special circumstances, see PRECAUTIONS)..."

  • Titan
    Titan Member Posts: 2,956
    edited December 2011

    I dunno..I took aspirin before BC because my grandfather (paternal) died of heart disease and my dad had a quadruple by-pass at age 67 (the same age my grandfather died)..my Dad is almost 80 years old (I can't believe it) and doing great.

    Anyway..besides that..I did take the aspirin..have for probably 20 years and still got BC...but oh well....I'm still taking it and hoping for the best,

    Interesting comments on the Metformin...anxious to talk to my onc...I'm going to file this all in my head and talk to him about this...it will be very interesting to hear his response.

    OMG>>Krispy Kremes...I ate 10 of them at one time...a few years ago...I'm serious..I was high as a kite from the sugar and my stomach hurt..but it was worth it..glad you are having fun Suze!

    Hope...I havent had either chemo but whatever you choose I hope, hope it works for you...isn't the Xeloda a oral drug?  

  • christina1961
    christina1961 Member Posts: 736
    edited December 2011

    Hope,

    I'm sorry you are facing this and have not had good responses to the other drugs.  Make sure you also post in the Stage 4 areas as you may get more feedback on these chemos.  I have also noticed that there is a ton of information on the triple negative breast cancer foundation site about some of the other chemos - www.tnbcfoundation.org. If you post a topic with the two chemo names in it you will likely get a response there.  I am on eribulin (Halaven) right now which is approved for Stage 4 and is available in clinical trials for earlier stages.  I had TAC before.  This chemo is a quick infusion, only about 5 minutes - and is given in my clinical trial 2 weeks out of 3.  I have had six infusions so far and am becoming very fatigued but other than flu like symptoms and some constipation, I am doing ok.  I am working full time. Please let us know how you are doing and what you find out. Best wishes to you and hope the next drug gives you NED!

    Suze, Great to hear that you all had a great time in Williamsburg. It must be amazing at Christmas! I am really happy that your cough is so much better that you do not have to be on meds for it!

    Bernie Ellen, That is hilarious!  I liked your diet, too - sounds like mine pre BC diagnosis. 

    Regarding the metformin and sugar, etc. I can say that I have been an absolute sugar glutton in the past - I worked far too many hours, and ate lots of sugar to deal with deadlines and stress. I have tested high for triglycerides so it is possible I have metabolic syndrome.  I used to exercise vigorously 3-5 days a week- running, cycling, kickboxing- from age 22 to 45, but the last five years I started working way too much - I have cut back on sugar, though, and plan to keep getting more and more of it out of my diet as well as get back to my old exercising habits.

    Teka, That was funny!!

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