Calling all TNs

JAN69

Debra - I don't remember if I told my original MO about metformin that PCP ordered.  I changed MO at about the same time so the drug was on my drug list when I saw the new MO.  New MO never has commented about it.  It's all very interesting, isn't it?  We'll probably never know if it works or not!  Good luck sorting this out. J

OBXK

Slowloris - I do the what's the point / why the hell not thing. I'm going to Chicago next month, treating myself to car service, but decided I don't need a new summer duvet.

I thing I'm more apt to spend on an experience, rather than material goods.



Navy - so glad you were able to raise a glass this 4th year!



Good thoughts to those of you in treatment.

NavyMom

OBXK: How's that young man of yours?  I remember it well, the day mine came home and said "I need to talk to you and Dad"  His choice to join the Military scared the crap out of me.  But we supported his decision and couldn't be prouder of his accomplishments.  He has been "in" 4 1/2 years and has re-enlisted for another 4 years.  He used to be a kid without a compass....not knowing what he wanted to do with his life.  Now, he is a young man doing what he loves.  How cool is that?!?!

Regarding the Metformin chat:  I also read all about thestudies and decided that I wanted that medicine.  I first tried to get a script from my MO.  She said "NO"  because the research was not yet completed.  So, I went to my PCP with print outs of what I found on-line.  He agreed immediatly to write the script.  But I did have some labs first to make sure that liver and kidneys were in good shape.  I also had  Hgb A1c to check for diabetes.  Lo and behold my level was elevated so I need the Metformin anyway  On my next visit to MO I told her all about my Metformin and she was glad that I was on it. 

mags20487

I just had to show my onc what phase of trial it was in...that was enough for her to see that it must be beneficial to make it to a phase 3 trial. 

slowloris...the day I finished my rads I went to the mall and found a gorgeous coach purse ( gunmetal) and treated myself...I looked around over my shoulder and there was another gorgeous purse in purple--my fave color and I bought them both.  One for each missing boob.  They were on sale and at the time we were good financially as my insurance had kicked up for me.  I say if you need a new car and can afford the new payment then go for it.  I just bought one in October and I love it!!  mY Car had over 200000 miles and was wearing out so it was time.

Maggie

argynis

I just came across this new article (the paper is not yet published but data was presented at a conference) comparing AC chemo followed by weekly and bi-weekly Taxol: http://www.medpagetoday.com/HematologyOncology/BreastCancer/39636?xid=nl_mpt_DHE_2013-06-06&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g543073d0r&userid=543073&email=quietasanun@gmail.com&mu_id=5671803

That were the main conclusions:

• This study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
• Breast cancer patients obtained the same disease control with less toxicity when they received weekly low-dose chemotherapy with paclitaxel instead of a higher dose given every 2 weeks.
• Note that the two regimens had similar rates of grade 3/4 toxicity, but the weekly regimen was associated with more hematologic toxicity, whereas the dose-dense regimen led to more allergy-related reactions, musculoskeletal pain, and neuropathy.

Stupidboob

slowloris I know exactly how you feel but mine is swinging in the other direction.   When I go to buy anything I think what if I buy this and then I am not here in a couple of months.   I spent this money on this or that and my hubby has no use for it.    I know this is a crappy attitude but I can't get the whole "death" thing.

If I had lots of money and could buy something really expensive it would be an indoor swimming pool

Stupidboob

From my own experience and from what I read on there I think that MO just want you to mainly stick with the nasty chemo.   I think you would have to have a foot in the grave literally before they would let you out of chemo or try other things.....

InspiredbyDolce

SLOWLORIS:  There is definitely something psychological that comes with buying somthing that involves a long-term committment, such as a car or house.  We too are in the process of needing to ditch our 19 year old car (Ha - got you beat!).  I know several things have come to mind, and for me, I think it's just the nature of the bc playing upon my fears.  I think it's not that I don't think I will be here for the future, but rather the fact that I remain a little insecure from this whole bc experience. Insecure in general. For me, it's been a little rough moving back into the traditional way of thinking, the way I used to do in the past, regarding the future.  I must and need to go back to living life the way I did before bc (emotionally/psychologically speaking), but once you get that call, that you have this bc out of nowhere, it leaves you a little rattled.

InspiredbyDolce

MELANTONIN:

I took the minimal amount last night. 1.5 mg of Melantonin Spray. WOW!  Slept great, it was like drinking a whole bottle of wine, without the headache, and cheaper.  I have a little hangover this morning, so will try to find pills today that I can break in half and take a reduced portion tonight.  Make sure to block out 8 hours if you take it.

GOWITHTHEFLOW: Can't wait to hear about your hair dye experience. The EWG website has products listed for hair color.

Have a nice day ladies - hi to everyone!

- Nutrition - Visit this site for nutrition info.  Type in a food and find out how many fat grams, sugar, carbs and overall nutrition profile it has!

"Self Nutrition Data - Know What You Eat"

kathyrnn

Navymom and Kelli - those are both important ant milestones. Congrats and I'm raising a glass to you both.



Stress management - you are a true warrior. I'm only facing my second and I'm weary. Bless you.



Stupidboob - swimming was on the no list during radiation. That being said, unless my skin is so burned that it has open areas (did under my breast last time.). I have EVERY intention of playing joyfully in the waves this year (if it works out right rads won't be till after beach season). I don't know that chlorine is good for the skin and public hot tubs are a swirling mass of germs. You also asked about advice from doc. They told me exercise was essential. I wasted hours walking and relapsed anyway. Not wasting anymore time walking.



ALHusband - I was offered the Metformin trial by my onc. I went to my PCP, explained the study and told him the only question was, am I going to get a 50% chance or will you give me a 100% chance. I got my prescription! If you get a prescription don't fill it through your insurance (it's an off liable use). A 3 month supply is $10.00 at Walmart.



Slowloris - I didn't spend anything after my original DX, but with relapse I am changing my mindset. I sat with my onc last week and made them give me some honest survival expectations (I will not be sharing what they said. All our cases are different. I have a Mom that I have to make sure is cared for, so honesty was important to me. ). I am doing two things. I am spending money on things that reduce stress in my life OR will bring me joy (for me that is mostly experiences). I'm buying a new car once I get other more immediate things settled. The second thing I'm doing is paring down both my things and my Mom's things. I come from a family of hoarders (not pathway theough house hoarders, rather "you can't throw that away we may have a use for it someday" hoarders). I am still working on my Aunt's house, but I finally have it empty. I AM NOT leaving a mess like that for my cousin (who is to me, my sister). The new expression around here is going....going...gone!!!!!!

I am doing everything that needs and can be done.......to make this as easy as possible for those I leave behind. I'm sorry that this is a "negative mind frame" post, but is an honest answer to the question that was asked. I will now go back to the "as long as you can breath...there's hope" mindset in my posts

bak94

I think I saw our sweet Dawn today at the doc office! Hi Dawn!!!! Waving wildly. Must have been with your sis, you were busy talking and laughing and then they wisked you away! I didn't want to jump from behind and scare you! As I was checking in the receptionist giggled and said, "wow, I just love them, they are great!". Our sentiments exactly!

Hope everyone is doing great, or at least hanging in there!

Kathrynn-I can't imagine what your doc said to you, well, maybe I can. I had nodes deep in my chest that were inoperable and they responded very well to chemo. I know we are all different, but there are lots of chemos. Did any of your opinions mention abraxane? I have somehow missed the posts that you shared what your options are. I do remember one was no chemo.

Stupidbood-I hope your heart is doing better!

OBXK

Good news! I awoke without a pink eye.

Titan

obx...heading to hhi this summer with the family...will wave at you on the way..first time back to hilton head since 2008..one year before diagnosis...can I say I will be weeping most of the time..I still look at pics from 2008 and at that STUPID BOOB..that was probably cancerous at the time but I didn't know it...ahh..the innocence before reality...

LuvRVing

Debra - I've been on metformin for 10 years and my metabolic panel is perfectly fine - no bilirubin problems.  Thousands of breast cancer patients are taking it - 850 mg twice a day.  There is a long multi-year discussion here on this subject.

Kathy - I missed your discussion about your nodes.  Could you PM me with the details?  I'd say call me but we are on our way to Kansas City.  Thinking about you!

GoWithTheFlow

My hairdresser would not color my stubble.  He said although the sides are thick, it's downy and would not take the color.  And it could damage what hair I have.  We set up an appointment for 4 weeks from now.

although I'm a bit disappointed, it's not that bad.  I'd rather have white stubble than no stubble.  He did say I could use some shampoo in color that washes right out.  Except it's not waterproof and my head gets sweaty so that's out.  Don't need haircolor streaks down the back of my shirts. 

Una2008

Hey ladies...I was just wondering if anyone had to stop chemo and go to surgery.

My MO and BS decided that after my third weekly Taxol they are going to stop and send me to surgery for a partial masectomy.  I have a cancerous breast cyst and it keeps filling with fluid.  They said even if the Taxol is working and they stronly suspect that it is, fluid would just keep accumulating and it has no where to go.  This cyst was aspirated in the past and it refilled to its original size in a few hours.  The fluid from the cyst was negative for cancer.  The cyst was removed by "lumpectomy" and the pathoology found that the small solid component of the cyst was TN cancer.  It came back just before I started chemo.

Cocker_Spaniel

This is exactly like my Chloe except Chloe is all white

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kathyrnn

Argynnis - I forgot to tell you thank you for the link. It's an especially important one for new people. I'm going to bookmark it (doesn't mean I'll be able to find it when I need it) for new members.



LUV- you should be just about arriving. Hope you survived the long drive. Have a good time.



Una - I can't remember anyone with the cyst/TN combo you have, but others with better brains will be along. I don't understand one thing, if they did a lumpectomy and removed the cyst, then how can it keep refilling? (I know they refill if you just drain them)



Bak - you're such a nice person, I would have been woooohoooooing Dawn at the top of my lungs. Of course it wouldn't be her and I'd look like a fool, but I'm pretty used to that. They are suggesting either CMF or Cisplatin, but the impression I got is it's not even a strong recommendation. (I believe my onc knew my wishes about being aggressive and fought for a chemo recommendation for me.) The impression I'm getting is to do radiation and wait for it to relapse and then do chemo.

kathyrnn

I forgot Annie! After looking at the picture, now I know why you love The Little Shit so much!

carlads

Hi Ladies, I haven't posted on this site in awhile, I read from time to time.  I'm not truly a TN ER5% and PR8% I finished Chemo the end of April and I did start Tamoxifen 3 weeks ago.  I have done so much research on Metformin and my Oncologist researched it.  He was ok with me taking it but didn't feel comfortable prescribing it.  My General Practitioner who is wonderful knew all about Metformin and how it effects the stem cell.  He wrote me a prescription yesterday but is only putting me on 500 mg a day.. Does anyone know the dosage they are using in the trial?  I can't find that info anywhere..

Here area a few of the articles I have read.. 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282095/

http://www.webmd.com/breast-cancer/news/20090914/diabetes-drug-fights-breast-cancer?page=2

Carla

gillyone

Another oldtimer stopping by to say hi. Like NavyMom I hit the four years from diagnosis mark this month. Navy and I are old friends from our chemo days. How wonderful to be able to say it all seems so long ago now!

Shout out to oldtimer Titan - who started this thread, for those of you who didn't know. I think it is one of the most active threads on the boards. There are lots of us TNs.

Babs37

Gillione- the dosage for the trial is 850 mg X 2 a day. If I wasn't in the trial, I would ask for a lower dosage because I don't tolerate it well. Sorry for the details but it gives me diarrhea. So when it gets too bad, I only take one pill a day for a while. Just remember to always take it with food.

ALHusband

gillyone: It's good for a "newbie" like me to see a veteran survivor on here. Congratulations on hanging in there for 4 years. I wish you 4 decades more, and then some! Thanks for the "boost" you just gave me!

DorMac

Today is my one year cancerversary (from final chemo). Everything seems to be going fine. I get an annual mammo and see my onc every 4 months. My main disappointment is that I don't trust mammos to find a fast growing bc like TN. A lot of the people on this site had clear mammos within a year of their tnbc diagnosis. Mine was found early by an MRI which I received as part of the clinical drug trial I was on. I don't qualify for a yearly MRI but I am going to get one and pay for it myself just for my peace of mind.

I asked my onc for Metformin but he didn't want to give it to me so I asked my PCP and she wrote me the prescription. I didn't qualify to participate in the drug trial as I am already diabetic (diet controlled). Carlads, the dosage is 850 mg 2 x a day. But, you should start slowly as it can have GI side effects. I would suggest you start with 500 mg once a day and make sure you can tolerate it then go to 500 mg 2 x a day, then 750 in am and 500 in pm, then 750 2 x a day, etc.

I have a sort of silly question. It's for the other women who have had a uni-mast and are "generously" endowed. Do you wear your prosthetic all the time? What about for the beach, etc. - did you get a bathing suit with a pocket for the prosthetic?

Just want to say Hi! to all the "oldies" out there and a welcome {with HUGS} to all the newbies. This is a great group for sharing knowledge and giving emotional support. Even though it's been a year since I finished treatment, I check in here pretty well every day or two just to see how everyone is doing. I think we have all discovered that we are stronger than we thought!

Doreen

slowloris

Kathy - big (((hugs))) to you. I know somewhat what you are going through. No organ mets yet, but recurrence has me in the same mindset some days. I need to get all my affairs in order, but its really something I should have done when my children were born. Can you say procrastination? Original will was made before I was married! Prepare for the worst, but hope for the best. We were one of the few who get tnbc, so of those, we could be the few who survive for a long time. Keep your faith and hope, miracles can and do happen.

Thanks all who gave me insight to spending money. I guess the long term commitments are the ones I am hesitant about, but I should get over that soon. Experiences are definitely what I would spend money on.

Today I thought I was seeing my mo, but instead only got to see the nurse practioner. I've only met with my new mo once, and I had so many questions, that when I started talking to the np,I broke down in tears. She thought it was because I was just so stressed about the dx, but it was really because I felt I couldn't get the answers i needed. She suggested I take an anxiety med. So, those of you who do take anxiety meds, how and when did you know it was time? July 1st will be my 1 yr anniversary of my initial dx, so overall I think I am handling it well - I go to work every day, do housework, make dinner, and continue to socialize (every weekend is another graduation, wedding, bday, etc). Will I recognize the need for meds, or do I just take the dr's advise?

kathyrnn

Carla - I see everyone gave you the dose. I also agree with their suggestion to start slow and work up. I had severe diarrhea when I started. After a few days I stopped and then restarted with a smaller dose, and gradually increased it. I'm now on the 850 2x's a day with no problem. The only other problem I had was a low blood sugar reaction on the first 2-3 days, and it may have my own fault for not eating.



Gilly - *big smooch* Good to see you!



Babs - I'm sorry you're still getting that reaction to the Metformin.



DorMac - Wonderful to hear from you too!! No advice, I had LX. I'm gonna ask a sister question to the one you asked . Any tips anyone for uneven size in a bathing suit. After the LX and radiation, Righty is a good 2 sizes smaller than her sister.



Slowloris - that's exactly my plan. (Plan for the worst- Pray for the best). I am the Queen of procrastination and at my age I should have my affairs in better order anyways. Now on to the anti-anxiety drugs---but my answer has 2 parts. Even before my DX, my PCP had given me some Ativan to counteract the pain narcotics at bedtime. (I have the opposite effect from narcotics, they make me wide awake). After my Dx, I began taking them more regularly at night, because I realized how stressed I was and they let my mind shut down and get some sleep. (You'd have to pry them from my cold dead hands now). I suggest you give them a try...it may be that you're so busy coping, that you don't realize how much stress you're burying in both your mind and body. NOW, after saying that....I don't think your episode at the doctor's office was anything that a little Ativan was going to fix. You went in expecting to see you're doctor so you could get answers and information you needed, instead you got the NP. You did not get from your visit what you needed!!! Your choices were to be upset and cry or to be pissed off. The answer to your problem today, was not to prescribe a pill, rather....to make sure you got your questions answered and get the information you needed. (I'm a nurse Slow. After going through this experience with BC, I have come to understand that the medical profession is sometimes so busy managing the complexities of the person's medical needs, that they (points finger at self too) forget the plain old-fashioned caring part of medicine. So my answer is Yes & No. You have nothing to lose by giving them a try, but I don't think the crying at the visit necessarily means you need them. Sometimes we cry when frustrated and ticked off!

Lovelyface

Doreen, Congrats on the one year mark!  I am doing the Happy Dance for you.  I am one of the oldies, so I am saying Hi back.  Just keep on going girl, and pretty soon you will be touching the 3 year mark, and then the miraculous 5 year mark!  Time flies.

encyclias

I've been on Metformin for 4 years now, being a low-level diabetic.  I still have diarrhea several times a week from it; learned to carry a change of panties, pants and a towel with me in the car at all times.  The reason I don't have diarrhea every day is because I alternate with Imodium which will give me a day of 'rest' in between.  My dosage at this point is 1000mg x 2.  Got the same side effect even when the Dr started me out at 500mg x 1. 

My understanding from what I read is that you cannot be a diabetic, even borderline, and benefit from its alleged cancer preventing capabilities.  It certainly didn't stop my BC.

Luah

Gilly: Always good to hear from you. Congrats on that milestone. I'm looking forward to being here and reporting the same in about 3 months. 

carlads

Thank you all so much for the information on the Metformin at least I have the amount to work up to..  I will let my Dr know. I am also on Tamoxifen due to the fact I do have some hormone receptors.. That has SE's of it's own.

Carla