Calling all TNs
Comments
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Feeling blue today, too, as I have started my 3rd round of chemo and it didn't go so well. I'm on Xeloda and it's 2 weeks on and 1 week off for 6 months. I only did my first cycle and I already earned a second week off. Also, a young teacher that I used to work with just died on Saturday of pancreatic cancer. She was only 49 and both her children are in high school. Makes me sad and makes me think too much.
I'm up today and actually accomplished a few things so that is a good thing! It's nice to read other people's thoughts and to hear good news!
Blessings to you all!
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Hi, I just happened to pop in today, and Warrior your message caught my eye. I'm sorry to hear that you are have a rough time with chemo. I'd like to offer you a bit oh my news. I'm about 6 1/2 years from dx and I still remember how sick I was with chemo. But I have survived, even thrived once all treatment ended. I've been dancing the slow waltz with NED, but just a few weeks ago my MO said I'm considered CURED and don't need to see her again! Now I'm doing the happy dance every time my mind thinks about cancer. I truly wish the same story for you and the rest of our sisters here.
I've been hoping to hear about our Cocker Annie. Has anyone had any contact?
JAN
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Greatnews, Jan!
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Jan that is the best news!!!! I'm so happy for you. Cured!!!!! Coxo
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Jan so happy for you. Thanks for checking in. It gives us all hope. I know there are a lot of ned tn's out there. I personally know of 2 that are 7 and 6 years out. Its getting better, due to earlier dx and treatments.
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Always wonderful to read good updates!! Let's keep them coming!
I had a little scare recently, but happy to report that it was a cyst that my dr was able to aspirate on Monday! I was nervous for a couple of weeks while I waited to see if the little bump would go away on its own, and then for an appointment! So relieved !
Hoping you are all staying cool and feeling WELL!
No word lately from Annie or Luv or Meadow or a few others. Anyone hear from them?
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JAN69 you may not know it but a post of yours, in 2013, is what gave me so much hope for my wife. I think it was the first I read in this forum. I honestly wish I could remember what it was...but I just remember it was YOU who posted it. Thank you! So glad to hear this news about you!
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JAN...CONGRATULATIONS‼️‼️ YOUR GOOD NEWS GIVES SUCH HOPE TO US
I HOPE THAT SIX YEARS FROM NOW WE ARE ALL POSTING THAT WE ARE CURED.
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Thanks for the notes regarding my good news. ALHusband, I'm touched that you remember me. Tell me, how is your wife doing? I'm sorry that I haven't kept up with this thread.
Weather news on TV tonight sounds like much of our country is having some form of very serious weather. Here in California we are trying to not fry to a crisp. I hope you all are safe. JAN
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Marsha, I am so sorry you are going through this. I hope the problem turns out to be something other than TNBC mets. Your thoughts on year four/five reminded me that things still can happen that "last "year. I'm almost to my 4th year anniversary so your comment really hit home. There was someone on this thread who got diagnosed with mets right as she was getting to the five year mark shortly after I was initially diagnosed. I remember reading how pissed she was that she almost made it to the five year mark and then got it. I was kind of surprised at the time that she was pissed about making it so far only to get mets. I really understand it now. You get your hopes up that you're almost there....and then....bam! Grrr......I really hope they find another cause for your issues and that it's NOT METS. Do you have any idea when you will have a definitive answer?
DIV, I'm also really sorry to hear about the chest mass. I hope you find some fun distracting things to do over the weekend to pass the time until you can talk to your doc....anything to keep that brain from whirling.
My heart goes out to you both.
On a happy/goofy note, I found out yesterday that I won a free raffle at my fitness center so I won't have to pay next month's membership fee. I am always surprised when I win something. It's a good reminder that the odds can occasionally break in our favor!
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I haven't been here in awhile. Just needed a break, but I will echo what Simple said above regarding mets. I'm right at 4 1/2 years from diagnosis and I try to be positive but it seems like lately I'm worried about mets more and more because nothing is guaranteed! I'm like what if this is the year it happens?!! It's like a dark cloud that follows and I still can't go a day without thinking about this stupid disease!! Ugh! Anyway, DIV and Marsha I will put you two at the top of my prayer list. Please keep us posted! Also wish for something from Annie! I miss her on here and hope she's okay!! HUGS to everyone!! Oh and congrats Jan!! So very happy for you!!!
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Hello All
Just weighing in on the recurrence/wait worry. I remember the first time I was dx. It's like every anniversary (counted from dx) I was an emotional mess. Year 4 to 5 was the worst. Then I relaxed. I do remember a lot of anxiety the first couple of years. I try to tell myself this time to enjoy each day but it is hard. Being stage 3 TN does not help. Being able to come here and vent helps immensely. Then you get a post from someone like Jan who is 6 years out, stage 3 and I do a happy dance that it is possible.
Prayers and hugs to those waiting on test results. Wondering about Cocker too.
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This was in the news today copied from a Forbes magazine article. I've never seen it so clearly put as to treatment options. My wife's ER/PR+Her2- turned triple negative and Xeloda, according to the latest PET scan, has eradicated some mets and others have been reduced in size and activity. Go Lady X.
Mike W.
1) Mesychemal (metaplastic) are vimentin positive and have PIK3 mutations will get chemotherapy plus an MTOR inhibitor.
2) AR with androgen receptor positive will get chemotherapy plus anti-androgen.
3) Immunomodulated with tumor infiltrating lymphocytes (TIL) will get chemotherapy plus a checkpoint inhibitor.
4) EGFR+ will get chemotherapy plus an EGFR targeting TKI.
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Hi everyone - Just wanted to chime in here regarding the fear of mets. I am approaching my 7 year mark and I can honestly tell you that it does get better. However, even with 7 years, my mind still goes there if I have something unusual occur in my body (i.e., a really bad headache, or aches and pains that normally aren't there, etc.). I do the 2-week rule before calling the Onc and have only had to do that a couple times over the years. I'm afraid that it is one of the unfortunate side effects of having breast cancer. But on the plus side, we are much more aware of our body and tend not to dismiss things immediately (like I used to do before bc). So here's to our awareness, and may we never have to deal with this ugly beast (or anything like it) in the future. My husband and I are excited to be planning for our retirement in 4-1/2 years and that is something I wouldn't even allow myself to think about a couple years ago. I will be 56 and my husband will be 58 when we retire, so we're feeling very grateful to be thinking long term now.
Thinking of everyone undergoing treatment. Keep taking it one day at a time. Sure wish we would here something from Annie (Cocker) or her daughter.
Hugs,
Kathy
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Hi everyone - Just wanted to chime in here regarding the fear of mets. I am approaching my 7 year mark and I can honestly tell you that it does get better. However, even with 7 years, my mind still goes there if I have something unusual occur in my body (i.e., a really bad headache, or aches and pains that normally aren't there, etc.). I do the 2-week rule before calling the Onc and have only had to do that a couple times over the years. I'm afraid that it is one of the unfortunate side effects of having breast cancer. But on the plus side, we are much more aware of our body and tend not to dismiss things immediately (like I used to do before bc). So here's to our awareness, and may we never have to deal with this ugly beast (or anything like it) in the future. My husband and I are excited to be planning for our retirement in 4-1/2 years and that is something I wouldn't even allow myself to think about a couple years ago. I will be 56 and my husband will be 58 when we retire, so we're feeling very grateful to be thinking long term now.
Thinking of everyone undergoing treatment. Keep taking it one day at a time. Sure wish we would here something from Annie (Cocker) or her daughter.
Hugs,
Kathy
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Dear Kathy,
Kathy, Thanks so much for posting.It means so much to those of us, still in the early months, years of this dx. To hear from those further in the journey, is so uplifting.
As i stated earlier I feel it's gets easier, but we never lose that vigilance. My MO says I'm in the surveillance stage. Where we watch and look, and keep an eye out. At first I did not like that term. Now I embrace it. I use the 3 week rule for pains, aches and unusual feelings. So far, so good.
I'm sending hugs to all, but wondering about Annie (her family) and Meadow too.We both have IBC and I"ve not seen her on that thread either. Hope all is well and maybe she is taking a break from the boards.
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All, just looked at my MRI results and 2nd opinion from my biopsy. MRI shows three lymph nodes affected and three tumours instead of only one. Lumpectomy is not an option, but I dont care at this point. Dr. has ordered a PET scan and I'm very scared. The MRI showed all kinds of vascular involvement, which seems bad. So bummed.
Rebekah
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hello, I'm new to posting here, although I've been reading this post since I've joined the forum.
Rebekah, I can relate to how you feel. When I was diagnosed it seemed the details came out little by little and it just kept getting worse. Looking back I'm glad it worked out that way because I don't think I would have handled all the bad news at once. It's normal to feel scared and to worry and dread each test result. I've found all that all coping techniques mentioned on these forums really help. This is the hardest thing we'll ever have to face but it is doable. My heart goes out to you
SuMarie
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hello, I'm new to posting here, although I've been reading this post since I've joined the forum.
Rebekah, I can relate to how you feel. When I was diagnosed it seemed the details came out little by little and it just kept getting worse. Looking back I'm glad it worked out that way because I don't think I would have handled all the bad news at once. It's normal to feel scared and to worry and dread each test result. I've found all that all coping techniques mentioned on these forums really help. This is the hardest thing we'll ever have to face but it is doable. My heart goes out to you
SuMarie
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Hi SuMarie, thank you for responding to me. This is a roller coaster ride for sure. I was doing ok and then I got the news about the lymph nodes. now I'm terrified for the PET Scan. I wonder if I should get some more Xanax. I stopped it because I was doing better, but maybe I should ask for a refill and take some more until my situation is more stabilized.
How are you doing? I see you are a year out. Are you feeling well? It must be nice to have all the treatment behind you.
Rebekah
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Hi Rebekah,
So sorry you are going through this. No one deserves it and sometimes I look at myself in the mirror and can't believe it's me. I had two known ER+ tumors and surgery was delayed a month due to a false bone nets scare due to MRI. During surgery a third tumor was discovered, hiding behind the others and its triple negative. It's like all I get is bad news. Then no clean margins so surgery again. I start chemo Monday and I'm starting to calm down knowing this. But it's so scary. I say get the Xanax if it helps.
What has helped me the last few days is going back far in the TNBC threads and seeing a lot of survivors - women years out who were grade 3 and positive nodes. I think they vanish because they're getting on with life. Unfortunately, we are in the thick of the battle. Best of luck and please keep us posted
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Hello...my MRI done last week came back with an abnormal lymph node on the left and 1.7cm mass thought to be benign on the right and on Monday, I will be doing a second ultrasound guided biopsy. I have wondered whether I will need to do a PET scan afterwards. Waiting for the biopsy result will be a tough one but one of the many things I found on this forum which is very encouraging is that even with affected lymph nodes, there are treatments and that you can survive it. So even with news which is not the best, there is hope.
I'm at this point double negative and it looks like there wasn't enough sample to test for HER2 - if my reading of the first biopsy's pathology report is correct. Putting this breast cancer puzzle together is taking everything I have to hold it together and you are right Rebekah, emotionally it is exactly like a roller coaster ride that you want to desperately get off of. I lost 11 pounds since the recall mammogram/ultrasound. But finding this forum has been a sanity lifeline, especially since sleeping was difficult and knowing that under the large 8cm of DCIS on the left side, there may well be invasive cancer and if the left lymph node comes back with malignancy, then it won't be DCIS and who knows what the right breast will hold. My prayer to all of us that we hear good news and that we find the strength to walk this journey.
So Rebekah hang in there and SuMarie, I admire your courage to face the news as it developed.
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Sending prayers for everyone, and those newly diagnosed.
Came across this fascinating article today, with some feel good documented miracles in it!
https://www.forbes.com/forbes/2009/0302/074_cancer...
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Thank you for the encouraging article InspiredbyDolce...in terms of the Plan B diet, it means no meat or diary even if labeled organic? Also do you try to purchase only organic items?
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Hi Heart - you know, I think when I added the Metformin to my signature line, I had to reduce some items. I do eat meat and I do trickle in a bit of dairy, but I'm much more aware. I eat a bit of chicken, and nowadays turkey tastes weird to me, so I don't have that anymore. I also have yogurt (Siggi's) once in a while, and if I have coffee, I will put in a dab of half and half in sometimes. Overall, I do eat dry cereal in a cup without milk, to limit dairy. But mainly when I posted my Plan B, it was more about how I actively incorporated those things. I didn't have room to write this, but I nixed alcohol and any soft drinks of any kind the day of my dx. I've been free of them ever since, and nixed coffee until year 4. It wasn't really a strategy about the coffee, just a cold turkey on everything. I eventually gravitated towards adding coffee back in at year 4, but at a reduced amount. I do try to purchase all organic, but if items are not available, I just make sure they are not on the Dirty Dozen list from the EWG site. Organic is much cheaper than it was in 2011, so Safeway has so many items now organic, that it is actually much easier than prior. The fish is wild caught sockeye salmon. Also, I do the 13 hour overnight fasts each night. For me, it's easy to do, but I didn't start that until about a year ago, when I read a good article on it, and decided I could incorporate that fine. And I do either a kale/blueberry smoothie (with kale/blueberry/GardenofLife Raw Vanilla Protein powder/flax seed), or I buy the Evolution Sweet Greens from Sprouts Green Juice - 10 sugars, but all natural. Nothing added.
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Dear Inspired, thank you very much for the explanation. The main reason why I lost weight is because I didn't eat but then this wasn't good for my husband or 14 year old son to witness. So I tried making smoothies but I felt compelled to add plain full fat yogurt and milk or almond milk in order to make the smoothie more drinkable, rather than spoonable - not that there is anything wrong with spooning the smoothie. Does the addition of kale help make the smoothie have more liquid like consistency? I guess I can add grapes or Green Juice as you had mentioned. I'm very new to making smoothies, so that is why I'm inquiring.
In terms of availability and reduced pricing of organic items, a friend mentioned that a local 99 cents store often carries organic produce and fruits. She even texted me a photo to show me what she found at the discount store. So you are right, we have come a long way in terms of availability of organics. Of course what the standard and oversight to be labeled organic are in various countries of import, that may be a whole different tale. Yet it seems to make sense that we can and should be more prudent about eating less processed food, whether you have cancer or not.
Thank you for the insight and I guess the message is that even when in terror and your world is upside down, you still need to treat your body as well as you can. So do try to eat something sensible...
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Hi ladies, been awhile since I have posted! I had a reoccurance in Jan 2016 with mets to lungs and bones. I am doing ok! Probably will start a new chemo next month. I have been off treatments since Feb 2017.
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VL22 - Yes, I think if ever there is a time for Xanax, this must be it? I too have been looking at the boards and there are lots of women with node involvement who seem like they were doing fine, so I hope it will be the same for me. I'm sorry to hear you have to have surgery again, but I'm sure it will feel good if they can get in there and declare clean margins. Let us know how chemo goes. I too am eager to get it started because I feel like it is going to save me.
HeartDesire - It sounds like you are in the thick of it like I am. The news just keeps trickling in so you think you are dealing with one thing, but then they throw something else at you. Hang in there. We will get this part behind us soon enough and once treatment gets started I think we will feel better. I too am being scheduled for another biopsy... this time for my lymph nodes. I didn't think to ask what they will do if they come back positive. Obviously they will remove them, but since I am getting chemo first I'm not sure if they will remove the nodes prior to chemo or after.... Keep us posted on your biopsy and also if they schedule a pet scan.
InspiredbyDolce - I loved that article and am hoping they develop some immunotherapies for TN.
Thanks to all for your support and kind words. I will have more info on Monday when I meet with my Oncologist for the first time. I hope this is the appointment where we get the treatment plan hammered out.
Rebekah
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Hello Rebekah, SuMarie, Heartdesire and all other 'newbies'.
I can't believe I am approaching 2 years. Yes it's very scary to hear the dreaded words of bc and then Triple Negative. Check out my signature. I had all the negatives so to speak. There are so many good survivor stories. The PET scan though daunting does at least give a somewhat clear picture of exactly what is going on. Take it one day at a time and definitely ask for that xanax refill. I had to personally stop googling, because there is a lot of old, and incorrect information, statistics etc out there. My oncologist my first few visits kept asking me if i'd been on dr. google. She is a stage 3 breast cancer survivor like me. She is 10 years out.
It does get a little easier, and not as scary once your treatment plan is in place and then begins. Reach out to us anytime, know that we are sending virtual hugs and will answer according to our personal experience which may help you with yours.
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HeartDesire: The way the smoothie becomes smoothest I have found, is by blending longer. I use cold spring water in it, to keep it cool, and the frozen blueberries keeps it cool while blending. But if you want to experiment, there are a lot of recipes on the internet. If you want it to be quick and easy, than add the words "quick and easy healthy smoothie recipe" and see what comes up in a search. Wow, I will have to check out the 99cent store! I have bought the Kind Organic nut bars from there before!
Now even though I have made these changes, I do want others to know, that everyone's approach to survivor management is different. Some people are survivors for 28+ years that post yearly, other survivors are also past 8 years and have posted they didn't change they just went back to living and enjoying life, and others choose to try a bunch of different things for lifestyle changes. For me and my way of managing things, I personally find if I've been following a routine/lifestyle plan that it helps me psychologically and feel more in control. I am mentioning this, because I don't want new members to feel that it is a must to follow one thing or another, each person operates a different way. You have to manage post diagnosis the way that suits yourself. Some people want info and such, and others want to get the treatment and never think about this again. Either way, it's always a personal choice, and I've seen excellent outcomes either way.
Where do you live HeartDesire?
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