Calling all TNs
Comments
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I have been off this site for some time , I was just reading through the thread and MBJ I am so sorry about what is going on.... My heart sank as I read each post. I knew you were in the hospital but I didn't know the severity of the problems. I will put you in my prayers and hand it to God, I also hope the meds do wonders for you and that you continue to feel good.
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MJB-Love you girl!
Get stronger and fight. Praying this ER+ gives you the ability to be NED for a long time. If there is anything I can do please let me know. Send me a personal PM if you need to SCREAM. I will call and listen. I am so bent out shape about your situation. I know we can't question GOD but................................................!!!
TifJ-we are too much alike. We have been in our house 2 years and 2 months. And it is pretty much like the builders made it. I am making it my mission this summer to spruce the inside and outside up this year.
Take care ladies!! Weather here is nice and I plan on taking advantage of it.
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MBJ- you didn't miss me, I didn't make it down to Louisville.There is absolutely no way I would come all the way down there and not see you. That would be my priority. I still hope to soon. I just stayed around here. I also wanted to remind you that a year ago November, when my BS, onc and rad doc gave me 2-3 months to live, I believe you, sweet women told me not to believe them stay strong and ignore anyone that gave me an expiration date. Now I am telling you the same thing. stay strong and prove them wrong. We are all here fighting with you. I'm so saddened that you are in so much pain and I hope (hope is such a petty word but I'm not sure what to use in its place) you get stronger and beat this once again. We love you!
I'm looking forward to having my daughter pick me up and take me out to their farm for the day. I'm excited to see all of their new gardens they've installed. They are flower and veggie growers and sell at the farmers market. I am so proud of them. Bonus I get to spend the day with my grandson? Yippee! I just couldn't help myself and bought them lots of surprises yesterday. She is cooking one of my favorite dishes, chicken curry. Yum! By the way, after being on the fence for a couple of weeks,
I have finally made up my mind to start the Metformin on Monday. I'll be anxious to let all of you hear the good news that it is working!0 -
Ihad every single test!
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Laurajane: I have NOT given up hope and I am no in pain with a small amount of drugs and the brace. PT went really well doing LOTS of bed strengthening excercises. Finanally meds feel balanced which really helps. Big hugs and good luck with the new drugs.
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Laurajane - Very happy to hear your starting the Metformin. Have fun with your grandson!
MBJ - I'm so sorry your going thru this crap but I do believe that you will get stronger and the Tamox will do wonders for you. Very glad to hear your not in pain.
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MBJ - so glad to hear from you but sad at the same time you are going through this. I'm sending you healing vibes!!
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MBJ- So good to here from you! Whishing you all the strenght you need to fight this.
LJ- Good for you! I don't know if you saw it but luvRVing answered your post this morning on the METFORMIN AND BREAST CANCER thread. Have a great time with your family today.
Thinking of you Susan...........xx
Lovelyface- Yeah!!!!!! So happy for B9 results!
Big Hugs to everyone!
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Babs - thanks, I had no idea there was a metformin and BC thread. I plan to talk to my Onc. about metformin. Somehow I feel I could benefit from it.
LJ - I can't wait to hear how well you are going to do on Metformin......I have a feeling it will do wonders, as they call it a "wonder" drug. I am so happy we have this as an option now.
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MBJ:
So happy to see you posting and even happier to hear your indomnitable spirit right through your posts. You sound like yourself again, and that is very comforting to us. This progression sucks, bug time, and I truly hate that you are going through this, but I do believe your silver lining in this rotten cloud is that it's switched from negative to positive. Very rarely do you hear of negative switching to positive (although I know it happens), as you hear more of the positive switching to negative. This opens so very many other doors to you that would not have been there as a 3N. Never never think that once you begin with the hospice care that you can't get out. You will just get tremendously wondrous care while you are treated by them - and they are absolute magicians with meds. Stay strong, sweet sister - we've missed you dearly.
LJ: re the metformin. I read somewhere, maybe even on this thread (???) that if you start the metformin at half dose for a week or two, it helps eliminate any tummy problems with it. I have absolutely zilch info re this, but just wanted to pass it on. Hopefully, that won't be a problem for your tummy.
LovelyFace - Wonderful news - I am so very happy that you can be happy!
Gabbi: So extremely sad that you have had to join us, and am glad that you are "home." When you begin your chemo in March, you will not begin it alone, we will all be right there with you - promise.
Annie: Yes, I had the flushed face during chemo. Probably the only time I had color in my face without the need of makeup!
Sending you all, light, peace and love,
Linda
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Lisa, From what I've learned reading endless journal articles the past year, cancer can mutate in response to treatment. My onc believes mine mutated after TAC from 1% ER receptors to the 5-10% ER receptors they found at surgery.
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Lovelyface- Great to hear some good news!!
MBJ- I am glad you are feeling good and not giving up hope! You are a much needed presence on this board!
LJ- I am anxious too to see how the Metformin does. My onc gave me an absolute NO. maybe I should discuss it with my gyn when I see him in April
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Christina - interesting. I did not know that. Sneaking disease, isn't it.
Although, I don't think that is what my onco was talking about. She seemed to indicate that my TN tumor was probably receptor positive at one point and then mutated to TN. Again, I am going to ask about this. One thing I have always viewed as a positive (no pun intended) about TN is that it seems like our body chemistry is not a contributor. In other words, getting it is a freak, chance occurance rather than and expected outcome of some sort of chemistry issue in our bodies. I would hate to find out that the reality is that I have some extreme imbalance that causes it to not only develop but mutate into TNs. Does that even make sense?? LOL. I hate trying to understand this disease, but so badly want to.
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Just wanted to let all you ladies know you are in my thoughts and prayers.
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I too want to send my thoughts, prayers, and love to all.
I hate this disease and haven't been on this site much recently due to moving but you are all in my heart.
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Thanks for the welcome messages. I still very new to BC and I find reading messages about TN very depressing. I havn't had a chance to met with my oncologist yet so I am not even sure what sort of chemo I will be getting. But it will be starting the day after I get back to New Zealand so I will proberly have Jet lag and chemo at the same time.
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Gabbi:
This is the worst part, it honestly is. Once you get into treatment, although I'm not going to say it's a walk in the park, but it is very doable, you will at least feel as though you are fighting this. Until then, you just sit and think - and the thoughts are never really good ones. It will get easier and we will be here to help you in any way possible. Reading and googling was terribly frightening to all of us in the beginning. It is a beast of a disease, but if you hit it as hard as you possibly can in the beginning, and make sure you have an onc that is proficient in treating triple negative cancers, you can succeed in this war. Try to keep your chin up, and remember there are many of us doing just fine, and think of all the women that none of us even know about that either do not find solace in public bc boards, or have gone on with their lives and have left the forums behind. There are many. Keep us posted as you begin your journey.
Hugs,
Linda
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MBJ-So happy to see you back online! It is mind numbing how quickly things can change with this stupid disease. Very hard to understand how it all happens.
LauraJane-I am very happy that you didn't listen to your docs and accept the 2-3 months! You are like an amazing energizing bunny! The best thing is that you can still shop for 4 hours
Enjoy your day at the farm with your grandson. Last spring we did not do a veggie garden, hoping I get enough energy to do one this year! Our yard, we live on just a bit over an acre, looks like a tornadoe has hit! We still have downed limbs since the last storm. My mo also said no to metformin for me, which I think is strange. I am overweight, a high bmi, but my blood sugar is fine. I will ask him again. He is actually doing a metformin trial, but I don't want in the trial because I want a guarantee that I am getting the drug!
Hi Susan, if you are lurking! Thinking of you and your family!
I could be wrong, but I seem to remember that they used to put everyone on tamoxifen and found that it did not benefit the er/pr neg. I will have to research this a bit.
I am so frustrated with my dogs! Every night after my husband goes to work they start barking! They know he is gone so they start to misbehave!
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Inmate - I too put all the lights on if my husband is away from home and I sleep with them on every night, all night, until he comes home. When I was 16 and my mother was dying of ovarian cancer every light in our home was subdued and I have never been able to stand it. whenever my husband and I have brought a new home it always has to have lots of light and lights. Putting the light on makes me feel better. Who ever thought a person would be pleased to get shingles. So glad its nothing else.
Lovelyface - I have been to Manakau many times as my daughter used to live there. I love Auckland but I'm not too keen on the busy busy motorway.
Gabbie42 - Welcome home. Nice to have another Kiwi on here. Hope everything goes ok with your chemo. I have only just started mine and have had one round which was pretty good thanks to the guys on here. So good luck.
Christina and Linda - thank you for your post on the flushing for the CT scan. Tuesday is coming around so quick and my tummy is doing flip flops already. Hope to hell I can manage to get that ghastly stuff down me.
Laurajane - well thats one movie I won't go to see. Personally I find that George Clooney, although good looking, plays the field too much. I prefer Harrison Ford, yummy.
MBJ - thinking of you and hopeing the Tamox will kick that cancer right out.
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On Metformin subject- When my onc offered me to be in the Metformin trial, I asked if he could give me a prescription for Metformin (so we knew I would be getting the real stuff), he said "no". He explained to me that since it was still in trial phase, they didn't know for sure if it was a good thing or not. So he wouldn't prescribe it for me on his own. I think that maybe doctor stick together on that one, that is why maybe so many of you have gotten a "no" to get Metformin "off" trial. Not because it no good, just because they want people on the trial for data. And like I told LJ, my onc had all the trouble in the world recruting 25 women for the trial because you have to agree not to drink more then 3 glasses of wine PER DAY for 5 years on the trial!!! Women say NO because of that!!! I couldn't believe it.
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Wow I would be in the trial....at least there would be an opportunity..
Lovely New Zealand ladies I made a painting for a wonderful copuple of a kiwi bird as a present form the wife for her husband for their first anniversary. I am going to see if I can add it here.....
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Hi ladies,
Sorry have not had much time to post. I am doing well. My Best friend was diagnosed with BC- They believe she is triple negative. She is been crying non stop for two weeks now. I do not know what else to do to keep her spirits up.
I gave her this link- Her name is Rejane so please give her your love if she join us. Thanks Monika 0 -
BAK - My one dog barks CONSTANTLY when hubby is not home, doesn't make a peep if he is. He's definitely protecting our home and me in hubby's absence. I try so hard to get mad at him but sometimes I just want him to shut up!!!
Metformin - Had my yearly physical today, went armed with all sorts of studies about Metformin and BC. Dr would not prescribe for me for "Cancer", my sugars were fine so he wouldn't prescribe for me on that front either, however, I need to lose weight so he was able to prescribe for me for that reason. HOORAY FOR MY FAT A**!
Thinking of everyone and hoping we all have a good weekend.
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mccrimmon - I didn't know that Metformin can make you lose weight? Really? I am seeing my Onc. on March 2nd, can't wait to ask for it. I am wondering what dosage he prescribed for you?
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Sounds like some bark collars are in order...
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Lovelyface, My onc would not prescribe for me, my family dr did. He explained that as drug companies tighten their belts and are not spending on creating new drugs they are looking for ways that current drugs can be used for different purposes. I guess one way they have decided metformin works is to help aid with weight loss. He said honestly he doesn't know if it help because it helps to stabilize glucose levels or because it upsets your tummy and not to expect much of a weight loss from it. He prescribed it for me in that manner because he "could", although he's well aware that I wanted it due to the studies I've read about BC. It's not "standard" treatment for cancer so that's why the onc's don't prescribe or why he couldn't. It's all politics I suppose. I explained to him that since I don't get tomaxifin or heceptin, I really wanted to try this.
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Paintinmywaythru......I absolutely LOVE the painting. You are so very talented. My Mom and sister both paint. Me, I make jewelry and work with recycled fiber and anything else I can get my hands on. The building part of things seems to be more my style.
Cocker Spaniel......my husband is now home and we are now saving on electricity. Yeah!
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Susan......thinking about you.
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mccrimmon - thanks for the info. Yes, I totally agree that we TN's have nothing at all after treatment is finished. I have a low hormone positive so they tried to give me aridimex, but that drug almost disabled me. My body could not take it at all. I have a feeling that Metformin might help me, as I have always felt that glucose metabolism in my body is not entirely normal, although I don't have diabetes. When I do a non-fast glucose test, it is on the border, such as 98 or so. I don't do well on most drugs as my body tends to reject them, but I feel that I could at least give this a try. Not only will it help with recurrence but help lose weight (I hope). I will ask him, see what he says. But yes, the way you presented your case, that TN's don't have any additional help, that was great! Let us know how it goes. What is the dosage? My Onc. is more liberal with scans and drugs, than my primary care.
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Metformin- The clinical trial dosage is 850mg X2 a day. One in the morning with breakfast and one with supper. ALWAYS eat before taking your Metformin for it can be hard on the stomach if you don't. I always take mine half way through my meal.0
