Calling all TNs
Comments
-
Babs - Are you in the trial? The dr is giving me a lower dose of 500mg x 2 day. Thanks for the tip about eating.
0 -
I realize I'm behind the curve on Metformin. What is the trial and is it supposed to help Triple Negative BC? Is it for lowering chance of reoccurence? Is there a downside to taking it? I could definitely stand to lose at least 25 pounds and have started making big changes to diet and have upped my exercise to start. But if this could also give me a boost on weight loss as well as help lower risk of reoccurence, it sounds like a win-win. I have a physical with my primary care in a couple weeks, so I could talk to her about it. Thanks for any explanations. Sorry if I missed it earlier.
Kathy
0 -
My onc wants me to start at 850mg of Metformin in the morning for the first 4 weeks and then double it to 850mg. added in the evening. I had a great time at my daughters and actually stayed the night. Tonight I am going to Indy with a group of friends and we are going to a fancy dancy restaurant called "Oceanaire: its a wonderful seafood restaurant, which is saying a lot for Indiana. LOL. i'm sure it doesn't touch the seafood you coasters get. Then we are going to Cirque du Soliel. I'm really looking forward to it although I wish I was feeling better. My pain pills don't seem to be working that good today. There is a big part of me that wants to put on my pajamas and just cuddle up under blankets and stay at home. I hope you all have a wonderful evening. I'm thinking of you and it sure would be fun if we could all get together and go out laughing and having a good time wouldn't that be fun.
0 -
Laurajane, I hope you have a fabulous time tonight and your pain pills kick in for you. I would love to get together, this is so sad, its been YEARS since I've had a girls night out!
0 -
Mccrimmon- Yes. I've been on the Metformin trial since last April. From the SE I had (have) from the start (GI problems), I know I'm getting the real stuff. So far so good...........
KSteve- They do this trial because it seems that diabetics on Metformin had less reoccurence and more complete response to chemo. From what I 've read on it, it seems that maybe cancer cell feed and thrive on sugar so "if" Metformin works on that, maybe it could help lowering reoccurences. I chose to be on the trial because like others have said, I didn't have anything to loose since after chemo, I didn't have tamox like ER+ that I could count on.
LJ- Have a great time tonight. It amazes me how much energy you have to go out like this. Hugs.
0 -
Babs37 - Thanks for the information. So if it's related to diabetics, it won't be something I will be able to do. And I supposed that is something I should be thankful for! It will be interesting to see the results from the trial though. Anything that can give TN's something that can be done.
laurajane - Have a great time at the Cirque show. I have seen several different Cirque de Soliel shows in Vegas and have loved them all. They have a special way to draw you in. I hope you can feel good and escape the real world, even if only for a couple hours. However, I do understand what you mean about wanting to put on your pj's and relax at home. There's something to be said for that too! I hope the pain pills kick in and start helping you to enjoy your weekend.
I hope everyone has a nice weekend! TGIF
Kathy
0 -
Not fair on the Metformin. I have a fat ass, Heather, and I didn't get it!!!!
0 -
KSteve- They are trying Metformin on non-diabetics for the trial to see if we will get the same results.If the results from the 5 years trial are conclusive, Metformin could become our "Tamoxifen". Let's pray it works!
0 -
Linda, apparently mines fatter. LOL
0 -
Saw BS yesterday, he thinks my shoulder pain is arthritis. He gave me an order for bone scan, to ease my mind. Now I'm sitting here trying to decide if I can afford the scan. If I ease my mind from knowing I have bone mets, then I will worry about the money. I HATE the American health care system!
The scan is Monday. My doctors are in VA, 2 hours from home. I am staying with different friend's over the weekend - which is wonderful. I had my hair styled and eyebrows waxed this afternoon. Even bought a new lipstick that better suits my new silver hair. It's nice to feel like a pretty girl, in the big city!0 -
Feeling pretty low today. I got a copy of my histology report and it reads Metastatic ductal carcinoma left breast with focal extracapsular spread to surrounding peridonal soft tissue. Grade 3 inductal carcinoma. Does the metastatic mean it has spread already or will spread. I know this cancer is bad but I thought I had a chance. If it means it has spread already what is the point of going through chemo only to feel worse earlier than expected. Why not take the chance and spend as much healthy time as I can with my family, whilst I feel well without the chemo making this worse and all the worry over the scans etc.
My daughter sent away for my grandmothers (My mums mum) death certificate as she does geniology. It reads Carcinoma Left Breast. Same as mine. She died aged 83 yrs. My mum died at age 48 yrs of ovarian cancer.
My biggest fear is that I am handing my beautiful, lovely daughter of 39 years a death sentence. This I couldn't live with.
The diagnosis has really thrown me and I have never felt so depressed. Cazn any of you guys get my logical thoughts going again cause I am all out of them.
OBXK - thank god for arthritis. You don't need the lipstick I can already see you are pretty with your lovely silver hair.
0 -
cocker spaniel --they called mine metastatic too because it was in the lymph nodes. Maybe this is what they meant in your path report too. Have you had a pet scan yet? That is how they determine if it is distant metastasis if it went to your bones, liver, lungs or brain. Try not to panic too much yet about this until you can talk to your doctor. They like to say metastatic if it has left the breast and spread to the auxilla (arm pit) but it is the distant metastasis we do not want.
Maggie
0 -
CS - I'm with Mags, I think it just means it went to the nodes. Someone will no for certain post an answer for you soon,
0 -
I hate reading my path report - I had it out today to send to the University of Washington research team - there is a clinical trial there- "Genomic Analysis of Inherited Breast Cancer Among Women Diagnosed with Triple-Negative Disease or with Diagnosis at Age 40 or Younger." Cocker Spaniel, One reason I am doing this particular study- "Our study includes complete screening of all breast cancer genes, including BRCA1 and BRCA2 and approximately 20 other genes..." is that apparently you get the results six months later - for free. However, you have to have been tested for the BRCA gene first but can be positive or negative (I was negative for both.) I want my daughter to have these results in case it is important for her in the future (she is 35.)
My path report reads "metastatic carcinoma in 2 of 16 lymph nodes..." - but the AJCC stage on it reads "IIA-ypT1c, N1, Mx, G3." That means Stage 2A, the "y" means post neoadjuvant chemo, the tumor size is now 1c, the nodes stage is N1, and Mx means distant metatasis unknown status. G3 is grade 3. So they use the term metastatic in reference to the lymph nodes not distant metastasis. If I had had proven distant metastasis I could not have gotten into the clinical trial I just finished because that was one of the exclusions. Hope that makes you feel better. I think it is confusing how they use the term; I guess I need to look up the definition of "metastasis" because it is probably different from what I think. .
I hope it is okay to put a link here to the TNBCfoundation website, but that is where I found out about this trial.
http://forum.tnbcfoundation.org/corrected-most-important-thread_topic9642.html. All I had to do was fax my pathology report and my BRCA test results. Now I have to fill out a consent and family history and then submit a blood sample.
0 -
Cocer Spaniel: Get the BRCA genetic test. Sounds as though you have some type of genetic thing going on. It doesn't have to be a death sentence, although it sure feels like it at the time. One of my two daughters tested positive for BRCA2. She already has a ventricular septel defect (hole in the heart). It is so hard at her young age of 20 to have to think about when she is going to have bilateral mx, but I tell you this much, at least we have a heads up about it. Genetic predispositions have been around forever. Now, knowing that she has it ahead of time, we can fight this beast before it has a chance to bite. I'm glad we now know, even if it is hard for her. I don't think I could live if something happened to one of my kids and I found out it was "my" fault, but I've also learned it's not "my" fault... it is what it is... no one's fault... and maybe there are positives to being BRCA that they are still finding out about. We all have something genetically incorrect, but most of us will never know what it is because we simply aren't that scietifically advanced yet.0
-
Is there any other TNBC that developed leukemia after chemo and radiation out there?
0 -
Is there any other TNBC that developed leukemia after chemo and radiation out there?
0 -
Cocker spaniel- I remember a year ago November, when the told me 5-6 weeks without surgery and more chemo but 3-4 months even with chemo, I had those same thought. Why do more chemo, I almost didn't because I felt like you, why not feel good until the end. Well I'm sure glad I've done all the chemos I've done because I'm still here. The way I look at it is I've beat the odds and when I go I will know I've done all that I could to try and beat this. When I complain about my pain I try and remember how bad it was about 7-8 weeks ago, that was as close to death as I've ever come and even though the pain is again getting worse by the day it still (knock on wood) isn't as bad as then. Ive really had some great times this last year again so glad I did more chemo.
I had a great time tonight, wish we were all there together. My friends are real sweet and understand when I get tired they are very accommodating I never have to call "shot gun". LOL0 -
Ladies once again you have made me feel better. I am going through the BRAC test, I had a letter about it the other day. So maybe that will shed some light for me.
Thank you all for the info about the metastatis. I feel a lot better and will talk to my oncologist on the 2nd March. I am not sure is the PET scan you talk about is the same as the CT which I am going to have on Tuesday which will show, chest, tummy and pelvis.
I have two daughters. My eldest girl we adopted (hate that word cause she is mine! and I adore her). But my diagnosis will not affect her only my youngest girl who I gave birth to.
Everyone of you has helped to make me feel a lot better so thank you all.
Laurajane - thank you for sharing the worst time of your life but I am so glad you pulled through. I hope you enjoy your evening.
Paintingmyway thru - your painting of the Kiwi was gorgeous. One of my daughters and I make cakes and decorate them. I don't know how to get a picture of one on here but it is a good distraction from all of this.
To get through the day I went and cleaned all the windows but only felt worn out, not better, cause I got a lot of windows.
They say laughter is the best medicine so I thought I would share this with you. My daughter sent it to me.
Inner Peace.
I'm passing this on because it worked for me today.
A Dr on TV said to have inner peace we should always finish things we have started and we could all use more calm in our lives.
I looked around my house to find things I'd started and hadn't finished. So I finished off a bottle of Merlot, a bottle of chardonnay, a bodle of wum, tha mainder of valiuminum prscrptuns, and a box o chocletz.
Yu haf no idr how fablus I feel rite now.
Sned this to all who need inner piss and telum u luvum.
Hope you fabulous ladies get as much laughter out of this as I did. Annie
0 -
Cc-is a hole in the heart related to brca? I was born with that and had heart surgery when i was 4!
0 -
Niciopp-do u have leukemia? I have heard that some chemos can cause it.
0 -
A hole in the heart can be genetic. It can also be operated on to correct the problem. Have you asked your GP what can be done about it. I hope you get some answers. Annie
0 -
Niciop:
I know I was told and read on the forms I had to sign prior to chemo that Leukemia is a rare but, unfortunately, a possible side effect, of chemo. I had AC & T. She did tell me that if it happens, it is something that occurs years after chemo. I do not think it is related to radiation as a side effect, just the chemo, as my radiologist never discussed, whereas my onc definitely did bring it to my attention. I have been on several BC boards since my diagnose, and have never read of one case such as yours, so it must be a rare side effect. May I ask how far out from treatment you were when this was diagnosed?
I wish you all the best and am so very sorry that you are faced with this on top of bc.
Linda
0 -
Cocker_Spaniel - Yes Mags is correct. Your doc called it metastatic only because it had gone to the lymph nodes, not because it has traveled anywhere else in the body. That can be known only through a petscan which they should definitely order for you. Chemo is the best drug for TN's and for aggressive tumors. Please find out when you are getting a petscan. Waiting for that result is very difficult because it is then that I feared the result of mets. Butyou should relax now, as this means only that the cancer had mets into the lymph nodes.
0 -
Niciopp-do, I was told by my Onco. that 1 in 1000 get leukemia from the chemo. I did AC and Taxol (not taxotere). Do you know someone or is it you who has been diagnosed with leukemia. I am so sorry. I think about this often as it has been my worst nightmare. 1 in 1000 is not that far fetched.
0 -
Than you for all of the hope and love -- anyone know abou Stge 4 mets to the liver?
0 -
Popping up to wave hello to everyone! MBJ, it is so good to "see" you, even though I am so very sorry about your recurrence.
Even though I do have mets to the liver, they are not really giving me any problems. It is my lungs that are the issue. I know the liver is a very resilient organ and can function even under the direst of circumstances. I also know there are varied treatments - regular chemo, chemo straight to the organ, radiation, and in very rare circumstances resection. I just know, don't read the stats on the Internet, they are very outdated! The women on the Stage IV board can offer you so much more hope.
I've officially started Hospice, and the nurses are just wonderful. I have my hospital bed set up, an aide every other day to help me get cleaned up, and plenty of morphine lol. I won't be doing any more chemo - my goal is to be as comfortable and pain free as possible so that I can enjoy my family.
My kids are holding up very well, they are resilient as kids are. My best moments these days are cuddling in bed with them, watching cooking shows.
Hope everyone is well. I'll try and say hi when I'm feeling up to it
.0 -
MBJ- You may want to PM Coolbreeze. She is stage IV with liver mets and had a liver resection and is currently NED. She did have some complications after surgery, but is getting better. She may be able to give you some answers. She also has a blog butdoctorihatepink.com.
Suze- Good to "see" you! I am happy the hospice staff is wonderful and making you comfortable. I hope each day holds a special memory for you and your family. Thanks for keeping us "in the loop"! Love and hugs!
0 -
Hi Susan. Glad to here that you are comfortable and well taken care of. So good to hear your children are holding up too. Big hugs to you and your kids. xx
0 -
Hi sweet Suze,
Great to hear from you. I'm also glad your kids are holding up. How about you? I'm thinking about you every day. I have become addicted to the cooking shows too! Thank you for taking the time to stop by. Wishing you comfort.
Laura0
