Calling all TNs
Comments
-
This is exactly like my Chloe except Chloe is all white
http://bit.ly/19LeNF4" width="317" height="403" />0 -
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.0 -
I forgot Annie! After looking at the picture, now I know why you love The Little Shit so much!
0 -
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
0 -
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.
0 -
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.0 -
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!
0 -
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
0 -
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?
0 -
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!0 -
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.
0 -
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.
0 -
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.
0 -
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
0 -
Is anyone else seeing a crazy looking page here? Is it long and wide for you as well?
Would I still be able to benefit from Metformin, do you all know, if my cholesterol is 100% in the optimum range? I ask, because my PCP gave me the ranges for all the cholesterol numbers, and I hit everything in the Optimum Range, which he said is really rare. So do you think I would still be a good candidate to go on it, or is there a chance that my eating/exercise has been enough to not need Metformin? I want your opinions, and of course, I know you all aren't doctors, but I am very interested in what you know about it in relation to that or anything. Thank you again!
0 -
Congrats Gillyone and Navymom on your 4 year marks.
0 -
You all know me and how I am .... I'm going to be very frustrated if I don't get to go on Metformin.
I'll present my Onc with any research I can find next week and try him again. If he still says no, I'll try the PCP and see what he says. Frankly, I'm a little stressed about this. If it's supposed to be so beneficial to us, why are they so hesitant to allow us to go on it?I saw my PS today, and made sure he checked me really good - I think everyone else is scared to handle me, he is the only one who is all over me. So he did a real thorough upper body exam. He and I decided we would see each other every 6 months, and he liked my idea of putting him on the alternating schedule of my BS at 6 months, so that way every 3 months someone is giving me a real good work up!
Gilly and NavyMom - Congrats on your 4 years and Luah, yours is coming soon! SlowLoris (Doreen) Congrats on the 1 year!
It is such a treat to see all these healthy victories.
Oh yeah, I found a lurking violator in the house! If you all remember, I got rid of everything upon my dx, scared it caused my bc. Out with the laptop, the old telfon pots and pans, etc ... well I forgot that due to allergies, we had plastic covers on our boxsprings and a special mattress cover (below our regular cotton mattress cover). The ones covering the box springs look like plastic shower curtains, and are probably made from non BPA plastic! So yesterday I tore the bed apart, and stripped these plastic allergy covers off and then washed all the bedding again. WHEW! It was a big job managing that king size mattress by myself. But I got it done, and slept much better last night, rolled up right against the invisible dust bunnies, but much happier knowing the plastic was not going to get me.
)Have a great day everyone and thanks for the advice and tips!
- 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!
0 -
I remember something about the metformin only being beneficial during chemo tx. Anyone else have any thoughts?
Maggie0 -
Hi Ladies
Inspired no you aren't seeing things. Not only are the post all the way over my screen, and its a big comp screen, but all the names on the posts are wrong.
I figure you girls are the ones with the good weather so please please send some my way. It is so frecken cold here I am thinking of emigrating to the US. All flights in and out of NZ are cancelled, ferries have stopped running, we are only being advised to travel if an emergency. I just cannot stand the cold weather. Its blowing an inhuman gale and I'm so rugged up with clothes I can hardly walk. I am quite small in build and just not built for cold weather so please send me some of your warmth.
Congratulations to all those ladies who have defied the odds. You go girls and don't stop for anything. You deserve triple your four years and many more. Sympathies to all ladies going through treament but you will get there, so don't give up.
To all those wondering about spending money now or later I say go somewhere and make memories (preferably somewhere warm). Do something you have always wanted to do and blow the cost. Cancer or not we can't take it with us so think of yourselves now you sure as hell deserve it. So go spend if you have it, it will make you feel so much better and will be a kick up cancers arse.
Have a good day and keep warm you lucky sods lol
Annie
0 -
Hi Maggie,
I've read that in can increase the effectiveness of being used with chemo. But I'm not sure if that was the only benefit to Metformin, or if there is benefit to long-term use. I'm reading up on it now though and will post any info that I find out!
http://strittermed.org/breast_equity/?p=44 This
is an authors recap of the impact Metformin had a 2010 San Antonio Breast
Cancer Symposium0 -
Annie...come on over baby..gotba spare room here in florida...only thing is its over 90...not pleasant when your arm is bandaged and body in compression!
Inspired...ther is a long thread about metformin on www.tnbcfoundation.org check it out
Maggie0 -
Cocker - So sorry for your weather! I'm dreading the heat we will be getting in the summer.
Spending money - I inherited a sizable amount of money just before my dx. I took my DD & her family for a big luxury stay in Hawaii and would love to do it again. I hesitate because I have 7 grandkids who will need money for college (they are all brilliant, of course). Also if I have a recurrence I might want to go to a more specialized cancer center away from here. That would be costly. Then, maybe I'll need assisted living as I lose my mind (more than I already have). Or, I could just blow it on fun with family. Jan
0 -
I tried to find the discussion but didn't find it. I'll have to source actual articles from journals for my Onc though. By the way, I did find a new article on TNBC Foundation that said researchers think they have identified 7 Different Subtypes of TNBC.
0 -
Here is the full article, pulled from CancerNetwork.com - it was posted on June 7, 2013:
http://www.cancernetwork.com/conference-reports/asco2013/breast-cancer/content/article/10165/2146205
0 -
Here is a link to each Speaker and their Video from the 2013 ASCO Annual Meeting. There are 12 videos and many of them regarding TNBC.
http://meetinglibrary.asco.org/presentationBySession/6027/1280
0 -
Hi ladies,
Hope you are all doing well. It's been a while since I've posted but all is good with me. Welcome to all the newbies, you'll get lot of support from the wonderful women on this thread.
Here's a link that might be of interest:
http://www.eurekalert.org/pub_releases/2013-06/uocm-fci061713.php
Take care.
0 -
I read the link you gave us Sugar. That was very interesting!
Here is link:
- 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!
0 -
So we've been talking about Metformin, and along the lines of this, is how to regulate glucose or insulin. You know you can find the Glycemic Index on NutritionData website. But what about the Insulin Index?
Well, here is an interesting article (and several others out there that mention the same thing), talking about how "in general" the Glycemic Index has correlated to the Insulin Index, meaning when the GI has been high, so has the Insulin Index and when the GI has been low, so has the Insulin Index. EXCEPT for these foods:
" ... There are some instances, however, where a food has a low glycemic value but a high insulin index value. This applies to dairy foods and to some highly palatable energy-dense "indulgence foods." Some foods (such as meat, fish, and eggs) that contain no carbohydrate, just protein and fat (and essentially have a GI value of zero), still stimulate significant rises in blood insulin ... "
I found this very intriguing, since I have read articles that suggest TNBC patients should limit their animal proteins, I wonder if this is why?!
Anyways, just passing along the link for those of who you follow a low Glycemic Index diet or Modified Mediterranean Diet or are trying to figure out what to eat. http://www.mendosa.com/insulin_index.htm
One day I follow one list, the next day another. It seems you can't get everything on one list. Eat nuts, but too many and I'm over the fat grams suggested for a typical day. Eat something else instead, such as whole wheat wasa crisp, then find out that has a high GI. There's only like one thing that is on all the lists ... broccoli.
Well, maybe there are a few more things ... cauliflower and bell peppers. That's great, I wonder what they taste like at 8AM. 0 -
Sugar - thanks for the link, it was very interesting. It is also nice to see you and know your doing well.
Mags -about the Metformin and chemo. What I remember reading was that when they caught on to the idea that Metformin had an effect in breast cancer they did a retrospective (looked back) at diabetics who where on Metformin during chemo. One of the things they discovered is that they seemed to have a better response to chemo. So yes Metformin does seem to improve the chemo response, but they don't feel that is it's only potential benefit.
Dolce - doctor's are hesitant to write orders for Metformin. It is still in the experimental stage and unproven at this point. You know how it is with studies........a year from now they could completely reverse their thinking about the benefits of taking it.
Annie - your complaints about the cold reminded me of how time flies. Seems it was just yesterday you were telling us how cold it was while you were still receiving your treatments. You've survived another round of the seasons. Oh, and it's still lovely here, come on over.0 -
Re metformin: As I recall, one of the criteria for joining a trial was to be within a year of treatment (I was too late), so they must be researching overall positive effects not just chemo effectiveness. My onc wouldn't prescribe it, as she wants evidence of benefit before prescribing anything. However, I have heard that PCPs are not as reluctant, as they have had years of experience with metformin for their diabetic patients. So that's always an avenue.... I do think, however, that we can take some charge of this without drug prescriptions -- keep a healthy body weight, eat low GI foods, avoid sugar spiking.
On the research front, maybe you heard about this: http://www.theglobeandmail.com/life/health-and-fitness/health/canadian-researchers-develop-sharp-shooter-drug-to-fight-cancer/article12640010/#dashboard/follows/ And a follow-up column today indicates that this treatment may be particularly for TNs, even though it's years away: http://www.theglobeandmail.com/news/national/take-news-of-cancer-breakthrough-with-a-big-grain-of-salt/article12735079/#dashboard/follows/
Hope everyone has a nice weekend, summer officially here.
0
