Calling all TNs
Comments
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Laurajane- I don't understand why your onc thinks it would be dangerous for you to take Metformin now? Is your liver ok? Because Metformin is metabolized by the liver.
I know that some doctors do prescribe Metformin for overweight people that have trouble loosing weight and dieting, but that is not why they are trying it on cancer patients. I am not overweight and Metformin did not make me loose weight that much, maybe 2-5 pounds at most (if it's the Metformin that did that for me). I believe that researchers found that Metformin is a powerful antioxydant too.
The only suggestion I have if anybody wants to start taking Metformin is go slow. Start taking half the dosage for the first 4 weeks to see how your GI system will handle it and then go for the full dose.
Anyways here is a research I have found that explains what they see in Metformin working for cancer patients:
http://www.diabetesselfmanagement.com/blog/david-spero/metformin-wonder-drug/print/
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You can always try the metaformin for a month and if it gives you too much stomach issues then you would have your answer. I can say my tumor markers have dropped even lower since starting the trial but as you know that could be from other factors as well.
But really it is a choice you would have to make.
Sending happy vibes to us all.
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Hi beckyv,
Just wanted to let you know that I am 3 weeks out from my last chemo (DD Taxolx4) and I am feeling great! I am now dealing with the 'cosmetic' SEs...bald head, no eyebrows, sparse eyelashes, and funky nails (brown-stained,ridged, but growing out). These are doable! I still have some neuropathy in my fingers and toes, but it lessens each day. (I have MS, so my tingles/numbness may last longer than a 'normal' person's.)
AND...I have hair "nubbins" sprouting!!!
Get ready for that cruise...you're going to be fine!
P.S. Prayers and comforting thoughts for all on this board. Thank you for guiding me through this long journey. ~ Shar
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SoCalLisa - I am so shocked when I hear Onc. say things like that. TN does not mean a death sentence, even if it is mets.
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I'm 44, originally diagnosed in 2006 with stage III TNBC, 3cm tumor in breast, sentinel node biopsy came back negative, bi-lateral mastectomy, chemo and then reconstruction. Metastatic recurrence after 5 years NED, DX stage IV TNBC, same cancer had apparently been in my blood stream all along and did not respond to original 6 rounds of ACT chemo. Since my latest diagnosis in August, I have been through both arms of the oral Xeloda trials. Neither ARM worked for more than two months. Began Ixempra by infusion last week and already the axillary tumor appears to be shrinking. Mets are currently 1 supraclavicular (4 cm) and two axillary lymph nodes completely replaced by tumor (largest axillary tumor is 7 cm), 1 hylar node, multiple mets to both lungs (small at 13 ml right now).
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Karen:
I am so sorry to hear of your recurrence. It's a fear we all live with daily, no matter how well we appear to be doing. I am 3 years out tomorrow the 23rd and I can honestly tell you that I do not feel any more reassured now than I did right after all my treatments ended. You are a perfect example of what I am talking about. With this dreaded disease, I don't believe any of us will ever be on the "safe" side of the timeline and I hate that all of us have to live this way. I just wanted to suggest to you another site that I am on all the time, as well as this one, and that the TNBCfoundation.org site. We have some gals over there that are also in the same situation as you are and they are wonderful, loving, very helpful ladies. If you haven't posted over there yet, I strongly recommend that you have a look at it. I am wishing for you complete success in kicking this beast to the curb.
Linda
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Heidi:
I'm with you as well. I find absolutely nothing offensive in anything that is posted on this forum, and never will. We have all earned the right to come here and post whatever we want in any way we choose after having to deal with the loss of dear friends we have made through this disease, sitting by helplessly as we see other dear sisters being ravaged by this beast while fighting to stay alive, living daily with our scarred and beaten bodies and psyches, and let me not forget the fear that not one of us escapes that this rotten disease has brought into each of our lives.
I will get off my soapbox now......
Linda
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Linda- Couldn't have said it better myself!
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What is OFFENSIVE.. our friends and relatives dying of this freaking disease..that is offensive..
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That's ok Teka..people need to see pics like these....they may be shocking but they are so very true and real...Pics like the scar project and Inmate's show the physical..and also the mental part of breast cancer...
Ah..dang..but cancer sucks...
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Are we over-thinking Teka's comments? I just read it to mean she was "shocked" in that she was surprised to see the pictures, just not expecting them.
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Inmate - I hate that you have shingles. I hope they run their course quickly and that your husband comes home soon.
Heidi - your shirt made me smile
LauraJane - sorry you lost your butt fat! Hope you have the perfect pillow. My mom and I laughed till we cried over finding her the right one. I must have bought 3 dozen to try.
KarenB - I am so sorry the beast returned. I hope you are able to find a way to keep it under control for a long time to come. It just sucks!
Linda - applause - applause! Well said.
Lovelyface - Got Ativan? I hope you get good news... Soon.
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I see my BS tomorrow. Sometimes I think I should stop with the followups and just live without all the scans and stress. I know...0 -
Oh you beautiful ladies - I finally have the news and it is Good News, there was nothing, it was benign, they didn't even find any atypical cells, it was clean. Oh my God, what I have gone through these past few weeks. The Rad who did the biopsy had told me to wait 2 days for the biopsy results. I just thought I would call my Surgeon and give her my correct phone number once she had the results. The receptionist said they had just received the results and the surgeon would call me after she is done with a patient. I started shivering, shaking, my heart racing, and not to mention the tears. I don't think there are any words to describe this anxiety. My co-worker says to me, try to keep calm, you can be calm in the midst of a nightmare... dah, dah and dah. I asked her if she had ever been in a position, where the next moment, her life could change forever, maybe the next moment, she would get a death sentence. She said she went to a class where the teacher was talking about how some people even remain calm when in a fire. I asked her if the teacher was ever in a fire himself. It is so easy to give adivce to other people. I wonder how this co-worker will do if she is in my position.
Anyway, I am in bed right now, trying to make myself comfortable. I don't know how I drove home, as this emotional nightmare made me feel so sick afterwards. I think I even have a fever right now, which maybe from the biopsy. My boss asked me when I will be facing this again, I said in 6 months. I am not sure why they are giving me MRI's every 6 months. Maybe because I have those atypical cells on the right side. But if they didn't find any atypical cells - they took a set of 12 samples from various areas, I think which indicates to me that the atypical cells are gone. I wonder if they can actually go away. Does anyone have any info. on this? I need to read my report.
But ladies, all your good wishes and blessings have brought on this good news for me today. I feel really very bad and guilty having this good news when some of you, my friends, are not doing so well. This seems like a game, isn't it, except that we are all playing with our lives. So far the MRI of the cervical spine and the biopsy of the Right breast are all negative, thank you Dear God! And thank you to each and every one of you who sent me good wishes! Love you all!
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yeah....lovelyface.....some good news is needed here and now.
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Hi Ladies
Teka - please don't be offended about the pic's or the posts. I cannot understand why as a nurse you would be shocked at either. The pic's were so beautful and without those scars Inmate might not be with us. Look at her face as well and see the beauty there. So what to a few fancy swear words and thats all they are words that maybe at the moment even God would understand. It represents so many heartfelt feelings. Most of us wouldn't normally say half the things on here during the normal course of the day but cancer makes you like that, and you feel like saying (all sorts of things) I know I do and I don't give a stuff it it offends cause it makes me feel better abd gets me through the moment.
Gillyone - No I come from New Zealand, a beautiful town called Lake Taupo with all her majestic mountains and beautiful big blue lake. When you look at those everyday you don't want to leave this world. One day last year in Christchurch in the South Island (I live in the North Island) nearly 200 people went to work, shopping or their usual daily happenings and they had a major earthquake. All those peole died so tragically. You can imagine the devastation there was. What I am trying to say is nobody knows what the future will bring so live for today and if a little blaspheming is all it takes then go have a bloody good swear and enjoy it, everyone of the ladies on here would understand that. On a lighter note I read your post on the contrast CT scan which I am to have next Tuesday. You only live 10 mins from the hospital and I live at least one hour away so, OMG, perhaps I should get some nappies!!.
Did anyone have the flushing of the face and funny taste in the mouth that they say you could get? AND of course I have to get this one in, did anyone get sick or feel nauseous from the liquid you have to force down before the CT scan.
Lovelyface - I am so glad your scan was benign. Good one. What a beautiful day.
Today I got the results of my bone scan and it was all clear. Yay. Now for a better nights sleep before the next hurdle comes.
Annie
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Hi Annie
My mom and sister/brother live in Auckland New Zealand. I have been there a few times. Lovely place. Nice to meet someone from New Zealand.
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Lovelyface that is so wonderful. I feel like I know somebody on the forum now. Have you ever been to Lake Taupo on one of your visits to NZ. We are about 3½ to four hours from Auckland but go there fairly often. Whereabouts does your family live in Auckland. I am just so chuffed. Annie xx
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Lovelyface I have just read your post again. This cancer plays with our bodies and our minds. Even when we get marvellous news we still doubt some of the results almost as if we don't believe the doc's. Will we always be like this I wonder. Don't be sad that your great news will upset anyone. The ladies on this forum will be absolutely, genuinly pleased for you. Sleep well tonight. Annie
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Hi Annie
I am from New Plymouth . I have been living in Malaysia for the last three and half years and I coming back home on Monday! I am looking forward to being back with my family again. I start chemo beginning of March
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Good morning ladies!
Lovelyface- I have this huge smile from ear to ear. I am beyond elated about your good news. What a wonderful way to wake up, make me coffee and read your lovely post you lovely lady. So so very happy!
Cocker spaniel- what a tragedy. You are correct we never know what each day will bring unless we decide it's going to be a wonderful day. My favorite saying " Life is good unless we decide to make it great!".
I had a great day yesterday. I went on a 4 hr shopping spree with a dear friend of mine. We had so much fun. Talk about shop till you drop. LOL I then went to dinner with my son and then to a movie with a friend of mine. I sure don't recommend the movie. I didn't realize what it was about I just knew I really enjoy looking at that gorgeous man, George Clooney, so when my friend suggested the "Descendents", I went. Don't see this movie unless you really want to be depressed. Awful! But, it was nice seeing my friend and the popcorn was good.0 -
Lovelyface - Congrats on the good news!!! We always need some good news and in your post you said "I don't think there are any words to describe this anxiety" The bittersweet beauty of this thread is you don't need to describe your anxiety to anyone of us. I'm pretty sure every single one of us knows exactly how paralyzing it can be but we're all right there with you. I'm just so thrilled you got good news and you can relax for a bit.
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Laurajane: So sorry I missed you but so happpy you had an amazing day!
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UPDATE: So, Since this (Callling all TN's) has been my home base for 3 three years I don't have the energy to start over nor do I have the desire. I hope that is okay with you!
They say the bone cancer is BC but now 80% + Estrogen + (????) so I started tamox last night.
The concern is that my liver is mostly filled with cancer.
The surgery helped with back pain but I am in a brace an must relearn to walk.
They want me to go home with Hospice, give me 6 months, want me to to have assisted nurse care and PT at home.
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MBJ- I am so sorry to hear this. I am curious though, why do they not want to do anything other than Tamoxifen to help you? There is a whole arsenal of chemos out there that might work. If this is your decision though, of course I support you 100%. I guess I am a little selfish and want you to be here for a long, long time.
Are you home now?
BIG HUG!!
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LovelyFace, Great news!
LauraJane, You need lots of soft pillows all around you.
Karen, Welcome.
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Here is something to ponder the next time you go through airport screening: Many of the full body screening machines in airports use ionizing radiation. http://www.fda.gov/Radiation-EmittingProducts/RadiationEmittingProductsandProcedures/SecuritySystems/ucm227201.htm
Ionizing radiation is linked with DNA damage, and DNA damage is linked with breast cancer. http://www.medicalnewstoday.com/releases/242039.php " expression of the Abraxas mutation caused hypersensitivity to ionizing radiation - a cause of DNA damage -"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3168783/
Personally, I opt out of screening and go through the obnoxious pat-down.
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Tifj: I'm not strong enough for chemo. Right now it's about strengthening bones, (hopefully walking again - my plan - and gathering strength to fight). I feel great but I am in a brace and in bed.
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Annie, I didn't have flushing and the contrast stuff was not very good, but I didn't get nauseous from it. I hope you have great, benign results!
Gabbi, Welcome!
Lovelyface, I am so glad you had good results! I have found that my anxiety takes a few days to settle down after getting the results back. I suffer from terrible anxiety over scans - I believe it was Tif that said you don't have to have words to explain the anxiety here on this board.
MBJ, I'm so sorry for the news and I hope the tamoxifen knocks everything back to the curb where maybe they can even do chemo later. 80% is really high so hopefully it will have a good effect on it quickly.
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MJB - I rarely post in this thread, but still read. I am sorry to hear about your recurrance, but glad to hear you say you are feeling good. I am also glad to see you posting again. I always thought you had such interesting insight into things and are wealth of information.
It is interesting about your change in receptors. When I was diagnosed my onco said something about not knowing when along the line it changed to negative. I never asked any follow up on this, but have since wondered if TNs usually start as positives but somehow change to negatives. And if so, why we are not given the drugs given to the positives as a preventative measure. I am going to have to ask about this when I next see her.
Did you have a PET scan or anything similar at diagnosis? If not, I find myself wondering if you might have had spread before it changed to TN in the breast (assuming I am understanding my onco's comment correctly)?
If you don't want to answer these questions, no problem! I am just curious about how this works. Not that this is really going to provide a lot of answers . . .
I hope those meds do wonders for you and that you continue to feel good!
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Everyone - I have lots to respond to as there are many lovely posts this morning, but I will try to keep it short. First, thanks so much everyone for your kind messages at my good news. I am so very relieved and wish that each and everyone of you have happy news like this all the time.
MBJ - I am so very sorry to hear what you are saying, but I am thrilled that you are starting tamox. One lady in our support group had mets to her spine, once she started taking aridimex, she is really doing very well, very very well, all her lesions have disappeared. I even feel there may be a chance of a "cure". The tamox might even take it all out of your liver. Our Suze chose hospice herself, I think, but I have a feeling she is buying hospice time to get back to health and I do feel she can do it.
Annie - My family in New Zealand lives in a city called Manukau in Auckland. They moved to New Zealand from Fiji, where I was born and spent my childhood and young adulthood. I have been to NZ 3 times, once to my dad's funeral. My mom is 81, healthy and lives with my sister. NZ is like my second home. Unfortunately, I haven't been to Lake Taupo, which sounds like a beautiful place. Mostly, when I go there we have so many family reunions that there is no time for sightseeing. My extended families live there as well. Many Indians from Fiji have moved to New Zealand. When I lived in Fiji, many of my teachers, lecturers were New Zealanders and also we took NZ examinations at school, so I always feel that I am part New Zealander. I am happy we have connected here.
mitymuffin - Talk about ionizing radiation, I have so much to add here. Did you know that many of our scans, especially CT scans, xrays, mammograms all produce ionizing radiation? It is a scientific fact that ionizing radiation does cause "breast" cancer. Here is a great link: http://envirocancer.cornell.edu/factsheet/physical/fs52.radiation.cfm. Then why are they continuing to give us mammos. Lately and even now, I am very highly concerned about the fact that recently they gave me a total of 8 images of my right breast on the mammo, whereas the recommendation is for only 2. I will take this up with the Rad dept. and make sure this is emphasized in a report kept in my file. In case of a future cancer, I will point to this. The Tech. had made a mistake and took 6 images, 3 of which were the wrong ones. I am deeply concerned about this. I suggest to everyone that they make careful decisions about whether a scan is really necessary, depending on their invidual case. Ask for an MRI - many insurance companies don't like to authorize an MRI, instead they give you CT scans. I am trying my very best to get away from scans. In 2008 I had lots of pelvic scans and sometimes I wonder if that might have anything to do with my BC. I had the Rad dept. print me a page which lists all the various scans I have had one since 1999. See it at a glance how much radiation you have had over the years.
LJ - I can see your beautiful smile from here. I am so glad you are having so much fun, which I hope continues forever.
Everyone - have a great day filled with beautiful spring-like weather and lots of good news.
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