Calling all TNs
Comments
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Merry Christmas every one hope you all have a great day
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Merry Christmas to all my beautiful friends!
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KSteve--Hello, My Alkaline Phospotase level gradually moved up after my initial Triple Neg BC mastectomy and treatment in 2000. About 4 years or so ago I received a report in the mail that my recent bone scan showed BC metastasis to my right 8th rib. I called my MO who had not received the report yet (!!!). He asked me to pick up the disk for the bone scan (done at another hospital's outpatient facility) and then to come right in to see him. (what a wonderful man, really). He said that the scan really didn't look like bone mets to him--it looked like a streak...that I should go downstairs in his hospital and have a chest X-ray, because he thought that it was early Paget's Disease of the BONE.. that this simpler test would tell us for sure and "I' ll have my "bone guy" look at it right away!" So that is what I have...and as I understand it, my bones will be more fragile than most people in the future but that we don't need to do anything about it now! I still can't believe that I got that scary letter
In the mail, tho. I'm going to check to see whether the report was ever corrected...
So....I've finished chemo for my 2011 different subtype Triple Neg BC (in my saline reconstructed Left breast) and am more than halfway through radiation, too. Best wishes to everyone and KSteve that this is just a bump in the road.0 -
Hey, what's going on here?? No posts for 2 days?? I hope everyone is just off enjoying the holidays!!
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That is strange! Busy busy bees! I may have to have a drain put back in:( I had 150 cc drained today and my scar has some necrosis so I may need to have it redone. I find out more tomorrow.
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I'm speechless! LOL
Anyway..have you guys read the news about Metforim? not sure if I spelled it right...anyway..it is used for diabetes but they are finding out that it helps prevent reocurrences in ALL cancers..OMG..I'm so excited...I usually ready this stuff and not think to much of it..yawn..another study..no help for us..but maybe this is something.
I'm going to ask my onc about it when I see him in January...wouldn't it be absolutely great if it would help US!!! If anyone gets to their onc before I do please let us know what they say...
It's not so bad this thread is quiet for awhile...here when we need it..and here when we don't..right?
Oh Yikes Bak..new drain huh? Probably just when you were hoping to get the dang thing out?
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Titan - I have been taking metformin for a long time (500 mg) but it wasn't enough to prevent BC. I am now on 1000 mg twice a day. It does a good job of controling my diabetes, keeping weight off, and hopefully disrupting those cancer stem cells! I've posted several links to the clinical trial info.
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Holiday Diet
The following diet is designed to help you cope with the stress, paranoia, depression and delusion that builds during the holidays...
Breakfast:
• 1/2 grapefruit
• 1 slice whole wheat toast
• 8 oz. Skimmed milk
Lunch:
• 4 oz. lean broiled chicken breast
• 1 cup steamed spinach
• 1 cup herb tea
• 1 Oreo cookie
Mid-Afternoon snack:
• The rest of Oreos in the package
• 2 pints Rocky Road ice cream, nuts, cherries and whipped cream
• 1 jar hot fudge sauce
Dinner:
• 2 loaves garlic bread
• 4 cans or 1 large pitcher Beer
• 1 large sausage, mushroom and cheese pizza
• 3 Snickers bars
Late Evening News:
• Entire frozen Sara Lee cheesecake (eaten directly from freezer)0 -
Bernie, I think that's exactly how my diet went this weekend too. LOL
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I too am taking metformin--1000 mg a day. I researched it before my first Onc appt and she hesitantly agreed to give it to me because I showed her the Phase III clinical trial. Hope it really works cuz that would be awesome. Just had a few tummy issues when first started to take it but otherwise no worries.
Maggie
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Metformin 800mg for the pass 5 months other than tumy issues I am fine. I sure hope it does something for us TNegs b'cuz we have nothing after chemo for protection. Hope everyone enjoyed the Holidays. So nice out I went for a walk this morning. Can you believe its Dec and the weather is this nice????
Keeping the faith for us all....fighter_34
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LuvRVing, I hate to ask but would you post another link to the trials, I have my first post chemo onco appt in Jan and I'd love to take that info with me.
Hope everyone is enjoying their holidays.
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Happy Holidays, ladies!
For those who have had BMX, did you choose implants? What type? Are you happy with them?
Or, did you opt for a DIEP procedure? Do they put tissue expanders in for the DIEP procedure? Are you glad you had the procedure rather than implants?
Need advice before I make a decision for surgery in January! Its all so confusing.
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Wow..so many of you on metformin..already...I can hardly wait until my next Onc appt.! (I can't believe I just said that).
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I am going to ask my onc about it when I see him on Jan 5th!
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Hi all! I am not sure if this is the appropriate forum for me to post in so if any of you have suggestions for another forum, please don't hesitate to let me know! At the age of 38 (by 12 days), I was diagnosed with TN IDC on 08-26-11 with the following characteristics: 3.2cm, Stage IIa, Grade III, 0/4 nodes, ER-/PR-, HER2-. I had a lumpectomy on 09-15-11, after which I was told that the surgeon got clear margins. I had the BRCA testing done and I am negative for any gene mutation that they are able to identify at this point. On October 14, I began what is an 8-round chemo regimen - 4 AC followed by 4 Taxol. This Friday, I will have completed the 2nd Taxol - only two more remaining! After the chemo, I will be receiving radiation 5 days/week x 6 weeks - woot. I have managed to work all through my treatment (thank God) and other than feeling pretty crappy sometimes and looking like an alien (lost all of my hair and am beginning to lose my eyelashes and eyebrows), I am hanging in relatively well. I would love any suggestions and tips any of you have to offer. Now that chemo is drawing to a close (the end is in sight, anyway), I find myself a bit fearful of what happens after radiation - the thought of just going on about my business seems kindof scary.
Thanks in advance and blessings to you all...
Michelle
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Hey Michelle,
Sorry you have to be here but I think you've found a great thread. The ladies here are very helpfull and we're all TN.
You and I seem to be pretty similiar. I was diagnosed in April @ 41. 3.3cm, did the lumpectomy, chemo and just finished rads about 2 weeks ago. Since we don't get anymore treatment after radiation I've started exercising like mad, eating as healthy as I can, trying to cut out sugar and also started taking & researching vitamins. I guess I'm going a little nuts with it right now but I'm sure with time I'll ease into a new normal. Just ditched my wig last week, I have a healthy buzz cut and my eyebrows and eyelashes are looking good again so it won't be too long for you.
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I'm in the Metformin clinical trial too. Taking 850mg X 2 a day since April. Had tummy problems too.
Just got back from a beautiful week family vacation in Daytona beach. The weather was great, in the 80s. Went to Magic Kingdom and to the T-Rex café with my little boy. We had a blast.
Take care everyone.
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Hi Everyone and welcome to Michelle. Hope you're all doing well. I've been reading the thread but haven't posted in a bit. I've been away visiting my mom for Christmas and am now trying to get my family ready for our trip to Cancun over New Years. I'm seeing my MO in early January and am going to ask him about Metforim, too.
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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?
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I think there is a correlation between sugar intake and BC rates.
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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.0 -
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.........
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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...
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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!
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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?
Thanks
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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
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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.
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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.
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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
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