Calling all TNs
Comments
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5andcounting and Kathryn,
Thanks for checking in and giving the rest of us encouragement. It’s great to hear from you guys.
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LW422,
It is overwhelming, especially at first. I think that this website is very helpful. I wish I had discovered it when I was first diagnosed in June 2019. I’m glad for you that your doctors are doing the PET scan. I had brain MRI, breast MRI, bone scan, full body CT, and echocardiogram before I started chemo but no PET. All the tests were done in a week because they had to rush me into chemo since the tumor seemed to be growing very quickly. I had to get my port implanted after my first infusion because there wasn’t enough time to do it before I began chemo. Once I was in active treatment, I focused on managing side effects from the treatment. This website has great info. on dealing with side effects. For example, I was totally prepared for nausea and vomiting with Adriamycin and cytoxan (which fortunately for me, I didn’t have), but I was not prepared for the hemorrhoids (TMI?) or shingles. My Onc. Nurses were very helpful, but I wish I had discovered this website during my Ac-T chemo treatment. The ladies here will be helpful to you. Hang in there
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LW422, one of the few advantages of being triple negative is we don't need hormone-based treatments. Of course, that's also one of the worst things about triple negative, because we don't have that in our arsenal. But "the whole hormone thing" you mention doesn't really come into play for us. Since you're past menopause, you're probably fairly estrogen stable, assuming your weight/fat is fairly stable. The chemo probably won't affect that at all.
You've entered a portal to a whole new world, with different language and rules. We'll do what we can to make it easier for you. Ask questions as they come up. I'm sure others have recommended you join up with a chemo group to have ongoing support during that process. You can check in with the November and December 2020 threads to get a feel for them, and then jump in with whatever month you begin chemo, yourself.
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Thanks, NorCalS and Mia. Naturally I'm really scared about chemo and hoping side effects are manageable. I have been spending far too much time on this forum, trying to absorb everything, though I'll admit that some information adds to my anxiety. I have an aggressive cancer (IBC) so things have been happening pretty fast which I suppose is a good thing, but it has me reeling.
I appreciate the good wishes and I am hopeful that we all have a good outcome.
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kathrynn, Congrats to you!!!!! What a great milestone to pass, glad to hear good news! Thanks for posting it truly does give me hope when I hear success stories.
Also love the cake, adorable and looks yummy. Hope you enjoyed it! Be well.
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Hello All,
Just wanted to come on here to say that I am 3 YEARS out from a TNBC diagnosis! I had surgery 1/25/18. I pray that I can come back here to say I reached the 5 year milestone
Hugs and best wishes to everyone!
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Congratulations Krissy. Three years is a big deal in the TNBC world. I’m only 1.5 years out, but hope to reach 3, then aim for 5. It’s always good to hear another TN gal doing well. Thanks for checking in
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LW422,
My understanding is that aggressive TN cancer responds well to chemo. The AC part is tough, but doable. I felt like my tumor responded the fastest to AC. I hope the chemo is effective for you as well. There may be some weird side effects, but there are so many ladies who have gone through this on this board, that there will be someone who wean give you some tips and tricks. In fact, I think there is a thread for tips for handling chemo. We’re here for you.
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Krissy! YAY for three years!!!
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Yes, hooray! Three years, big sigh of relief!! Here's to 3 more!
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congrats!! Wonderful words of encouragement for sure!!!!
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Krissy37 congrats on the three years!!
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Today is my one year anniversary since partial mastectomy with reconstruction and lymph node removal. No evidence of disease!!! stage 3 TNBC
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Well, this is a club I never thought I would be a member of. I was diagnosed on 2/4/21 with Triple Negative IDC. I was prepared for the cancer diagnosis but not the triple negative! Terrifying to say the least. Thursday I saw my breast surgeon, plastic surgeon and geneticist. My tumor is on the left side, 3mm in size and no apparent lymph nodes affected. It was decided to do a double mastectomy on 3/3 followed with chemo. I will meet with my oncologist 2 weeks after surgery. I’m in the DC area and feel I have found a good team. I have my game face on for my family and friends and trying to only think positive thoughts but man this is a monster. Glad I found this forum. Need all the good advice and support.
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1414–I am so sorry you are here, but you have found a great place for support. I’m a fellow TN, diagnosed last May. I am not going to say I know how you feel, because it is different for us all. But I remember feeling so overwhelmed with the TN diagnosis. But, I want you to know, treatment was tough but I got through it and it was hard, but not as hard as I had feared. Make sure you find a doctor you trust—once you have that trust it does help getting through treatment.
I remember early in my diagnosis, I found another TN. She told me we are in a sorority that nobody wants to join, but once you do we are here for each other. That meant a lot to me, so I wanted to say the same to you. You’ll find a lot of very smart and supportive people on this site. Please know that I’m here for you, too. To cheer you on, answer any questions, or just to vent to. We are here for all of you—no game face ever required.
You said you would take any advice. Here is mine. Don’t forget, you don’t need to be brave or be strong or be positive for anyone else. Cancer sucks, what you are going through is tough. And you shouldn’t have to pretend to feel anything other than what you are really feeling. The most important thing you have to do right now is toshow up. The second is to be kind to yourself. The rest are details. Sending you a big hug.
Kristen
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1414 - I too am TN, diagnosed last March, in fact it was the the day my state began its stay at home order due to covid. Because of this my MO needed to get me going ASAP so I did chemo first and then surgery. I went from being diagnosed on Thursday to meeting my MO and BS on Tuesday and starting chemo on Wednesday. Everything was so rushed, to say that I was overwhelmed is an understatement, but it was doable.
Chemo was not as bad as I thought it was going to be. I had my moments, but nothing horrible. Recovery from surgery, for me, was a breeze. I was actually surprised how well I felt. I did not need pain meds and was able to get by on Advil and Tylenol. I had an issue with one drain, but it was more of a nuisance than anything else. I hope you have a similar, if not better, experience.
Poppy_90 has given you some great advice, please do be kind to yourself! If you need anything, please feel free to reach out! Sending you a virtual hug!
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Hello fellow TN's! Today is my 4 year cancerversary. I just wanted to offer some words of encouragement to any of you who could use them. Every day I'm thankful that I'm here and that I've been given the opportunity to see my sons grow from 6 years old to 10. I hope to be here for the long haul! Like many others, I do have side effects from treatment and the pandemic hasn't been easy but I try to give myself grace on the hard days. I hope that you do the same for yourself.
Hugs to all!
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Yay, Flynn! Congratulations on hitting your four year mark. I'm coming up on four years since my surgery in April. It's amazing how these anniversaries mean so much to us triple negatives.
Here's hoping for many, many, many more years with your sons.
Trish
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Flynn, thanks so much for sharing this. Four years is something to celebrate! I echo Trishyla and hope you have many, many years together with your sons.
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Martaj & Flynn - congrats on your anniversary, Trishyla on the upcoming anniversary. I hope and pray to get there as I do for all the others going through bc and any other type of cancer.
I see my MO tomorrow after a 8 week break from Xeloda as we thought my body was not tolerating it very well; SE's did not go away during these 8 weeks and now I'm thinking it was the AC & Taxol I did last summer. I'm apprehensive as I'd like to finish my treatment, but worried my body is now reacting to the assault from chemo and previous medical issue, not to mention I still have my TE's and they are causing some achiness; looking forward to the exchange. This frigid weather does not help, so I'm praying for warmer days to come soon. Maybe it's time to start planning a vacation to somewhere warm, near the ocean!
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Ivy,
I have to agree with you. A week on a warm beach sounds amazing. It sounds like we had very similar years in 2020. It’s nice to virtually meet you. I’ll be thinking of you tomorrow. Please keep us posted on how it goes.
Kristen
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Thanks Poppy! Maybe we can compare "notes", for lack of a better term. I will definitely let you know what happens tomorrow.
Depending on what's told to me tomorrow, I will be planning for a vacation. Because of covid there are so many restrictions everywhere, but all I want is the sun, a warm breeze and a beach.
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Martaj!! YES! So glad youchecked in with your good news.
Flynn, I too am so glad you are here with your kids, and doing so well!!
New TN sisters, you have come to the right place This is a very caring group.
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My emotions are all over the place! MO took me off of Madame X indefinitely, she's concerned about possible permanent neurological and muscular damage. So now my mind is constantly racing and thinking of recurrence. I'm doing my best to think positive, but, as I'm sure as you all know very well, it's difficult. I'm trying to stay busy and focus on other things, but I find that cancer is on my mind all of the time. It's so easy to think the worst and I'm trying to find a way of turning that around; I believe that is the first step, but a hard one at that.
Maybe dying my hair will help! ☺️
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Today is the second anniversary of being diagnosed with tnbc IDC and DCIS. When the young radiology intern called me, she told me I had DCIS. I thought it was good news. The next day I read my chart and saw that wasn't the important part.
My tumor was small, 1.5 cm at surgery in April 2019. That was followed by 2 attempts to run a Taxotere and Cytoxan series, but I reacted to Taxotere. We switched to Adriamycin and Cytoxan, dose dense, and then 20 rads.
There's a lot. You all know. Many of you went through a lot more than I did. Physically I'm in pretty good shape, though lumpy and out of sorts from a long winter and a lot of food. The worst physical side effect (that I'm aware of) is tinnitus, which my MO said wasn't a thing, but is. It's disruptive all the time that is otherwise quiet. I have no quiet.
Mentally, there is continuing health anxiety, at a low level but never really gone, like the ringing in my ears. I had basic blood tests with my annual physical in January. A slightly elevated liver reading, a somewhat dropped kidney reading... What do they mean? And what about that lumpy area on my clavicle? Has it always been there? I look forward to future appointments and follow-up tests, and dread them at the same time.
It feels like holding my breath a lot of the time. We hold our breath for 5 years, if we're lucky. Two down, 3 to go.
Today, along with some murky feelings about the cancer, I'm feeling grateful and optimistic. You see, due to a fluke of scheduling, I was able to get my first covid shot today. My husband had his on Wednesday. By the end of March we'll both have 2 shots. And it will be spring.
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Congratulations on hitting the two year mark, MountainMia. Before you know it, you'll be hitting three years, then five.
As far as the low level health anxiety, someone here called it our cancer radio. At first it's really loud and hard to ignore. But then gradually it starts to fade. It gets quieter and quieter, till finally it's just background noise, easy to ignore.
And we're all a little lumpy and ouf of sorts from not just a long winter, but a very long year since the Pandemic began.
Here's to many more years of continued good health.
Trish
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Congratulations Mountain Mia for hitting the 2 year mark. I have about 3.5 months to go before I get to 2 years. With the pandemic, it seems like time has flown by. However, it also feels like it’s taking forever to hit the 2 year mark.
Trishyla, you’re close to hitting the 5 year mark. Hoping the best for you. It always makes me feel better when a TN makes it to 5
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Big congrats to you Mountain Mia, yes 2 down 3 to go for some mental peace! I agree as we all most likely do, that we spend our days waiting for the next symptom to appear. It is definitely a challenge not to think about cancer on a daily basis but it does start to fade a little in time. I know for me on my first diagnosis as time went on I did think about it less. Now I have to restart the clock and work on getting to that point again. I know it will never truly fade away but I am going to work on it and I know you will get there too!
So happy for you that you got bumped up for vaccine, great news. I got my second about 3 weeks ago and I am returning to work part-time Wednesday...yikes. Not sure if I am ready mentally but it may be a good thing. Just praying for minimal SE with Xeloda, on second round now, so far ok.
Spring is almost here and you will be able to get outside more and enjoy the sunshine! That alone is a great remedy for everyone. Celebrate your anniversary because you deserve it after all you have been through. Sending you hugs and best wishes.
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One year out, completed 18 mile bike ride! Hit my goal0 -
Hi Guys!
Just checking in. Happy second anniversary everyone! We made it! It's been an age since I posted! I just hit the two-year mark too! My surgeon started my phone call with that when I talked to her yesterday for the first time since the summer. TNs have a 5-year recurrence window, right? We have a shorter window of most likely reoccurrence than Positive receptor tumors right? yay us! Silver linings abound!
My two-year mark was 2/13/2021.
PS
I think with the subtype of TN - metaplastic - my window is considered by most possibly shorter still, like 3 years. Some say two! I'll take what ever numbers they want to give me! Happy two years everyone!
Hows everyone weathering the pandemic? Is anyone getting consolation shots of the vaccine? Like, sorry about cancer and all that really hard treatment you had to go through, here's a shot or two of Covid vaccine?
I just got the first shot as a high school educator yesterday and let me tell you it is such a relief!
Love to all!
Frack
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