Calling all TNs
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Hi guys!
Hi Mountain Mia! Long time no post! We made it!
I hit the two-year mark as well last month! On Feb 13th! Super proud! I posted then deleted it just now and now I'm reposting a more HUMBLE posting.
3 years to go! Indeed! Remind me... How DO the numbers go? Does it all just drop off?
- ...how far out of the woods are we at 5 years? Because I've been out of the loop for a while and I kind of forget!
Thank you all so much for all of the support these last two years!
- The last question, do they still have that starting chemo this month groups? I have a friend...who's just getting started...
- Fracking out
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Hello all,
I am newly diagnosed with TNBC on February 11. This tumor popped up quickly and is now in my lymph nodes, I had a CT scan and bone scan and it can back clear, thankfully. Port has been placed and I will start chemo next week, March 10. I'm getting things ready so I'll be prepared. For the most part everyone has been supportive, just frustration with insurance. Your posts are encouraging, I get in a low spot at times and wonder if I'll ever be hiking and camping in Colorado again with my son. Then I came across the post from Martaj, what an great inspiration!
So I'm ready to jump in and fight this, any advice is great!
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Hi NatureYogi!
I'm sorry you had to join the club, but you've come to the right place for questions and moral support.
My story is sounds similar, on 1/31/2020 my mammogram and ultrasound were all clear; exactly a year ago, so about 6 weeks later after the mammogram and ultrasound a tumor popped up and here I am.
I hope your experience with chemo is a tolerable one. Mine was and I'm grateful for that. I was able to go for my daily walks, swim daily (during the summer obviously) and work out. Be sure to take it easy on the days you don't feel well, drink a lot of water and most importantly, be kind to yourself.
I'll be thinking of you on Wednesday and praying that everything goes well.
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Nature Yogi—I am so sorry you find yourself here, but wanted to say welcome. This is a tough time as you wait for your plan. There’s a lot of unknowns and, if you are like me, that is a tough time.
Once you get your treatment plan, take it in steps and give yourself rewards throughout. My best advice is to keep walking. Everyday, even the tough ones. And drinks of water. That being said, also listen to your body. There’s no shame in taking a day on the sofa and finding something mindless to stream. Physically and mentally you’re going through a lot. Breaks are important.
Make sure you trust your treatment team. They will get you through. Don’t hesitate to reach out to your doctor if things don’t feel right. There’s lots of different meds, and different things work for different people. So don’t be afraid to call and ask for something different if you’re not feeling well. My MO was very frank and told me she doesn’t believe anyone should suffer through treatment. She made herself extremely available to me to try different meds until we found what worked best for me. And I was never made to feel guilty for calling after hours or weekends.
This one is easier said then done, but try not to be too overwhelmed. I found so much support from the infusion nurses. They are such special people. Ask them lots of questions and make sure you are comfortable. I also found bringing snacks helped a lot on chemo days. I also found that the snacks that I brought, I no longer enjoy. So don’t take your favorite snacks! Something in my brain links those snacks to chemo. I found saltines, bread, simple sandwiches and grapes worked for me. I also brought a lot of water and Gatorade.
Chemo isn’t easy, but it really is doable. Before I started, My MO told me to forget everything I’ve seen in the movies. Hollywood and the drama aren’t the reality. If I am strong enough to get through it, I know you are, too.
Don’t feel pressured to share with lots of people in your life unless that gives you comfort.. I chose to keep my diagnosis very private. I wouldn’t do it any differently. I know a lot of people take strength from having a full tribe of support. I found by being private, I had pockets of life that I could use to escape to normalcy. That worked for me. It may be different for you. You will find your way and what works best for you. Don’t be surprised if some friends disappoint you. I really think this is one of those experiences that if you haven’t lived, it’s hard to empathize. You’ll probably also find some surprises in people you never thought would step up, but do
You’ve found a great place for support. Please keep us updated. I will be thinking of you Wednesday, and sending lots of positive energy your way. Chemo during covid is different, but doable. Please feel free to reach out with any questions. When I was first diagnosed, a fellow TN told me I had joined a sorority that nobody wanted to join, but once in it we are here for each other. Please know I’m here for you in anyway you need. Feel free to reach out here or by PM. You can do this.
Kristen
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You guys are great! I appreciate the support and kind words. Monday is Echocardiogram, Tuesday MRI. They are still searching for the original tumor, it didn't show up on mammogram or ultrasound. They only saw the enlarged lymph nodes and after the node biopsy revealed breast cancer cells. I'm ready for the chemo on Wednesday, I hope I respond to the treatment quickly, my breast is so swollen and red, my arm is swollen and tight also due to circulation. I am getting AC and I guess eventually paclitaxel. She also said something about Neulasta for blood cells? I got my hair cut on Saturday, took about 6 inches off, so it won't be too much of a shock when it falls out. I feel good about everything so far, considering this is cancer and stressful, atleast I have a plan now. Before the unknown was causing anxiety and I couldn't sleep. Knowing I have you all to talk to and you truly understand the emotions that go with this.
Thanks again and I hope you are all doing well with your treatments, surgery, etc.
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To all of you newly diagnosed members. My wife just celebrated her 8 year cancer-versary. It's rough and scary in the beginning, but keep your eye on the prize. It gets better...you'll get past it...and life will resume. There's light at the end of the tunnel. God bless and heal all of you. Prayers and best wishes.
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Thanks, AL. Blessings to you and your wife. May you both continue with good health.
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Wonderful news, ALHusband!
Thank you for encouraging newcomers who unexpectedly find themselves in this sometimes bewildering and scary situation.
Lyn
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Hi all,
I just want to stop by to say hello and up dated my life. I am now over 9 yrs a tn breast cancer survivor. Many new good things have been happenning to me after treatment. I started playing tennis. Travelling aboard often. Now I have to slow down my favorite activities cuz covid19.
Anyway, I truely enjoy my life after cancer treatment.
Newbies hope you dont too much troble with your treatment and you will get well soon.🙏
Khamnuan from Bangkok.❤
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I have been a year with no Evidence of disease. Went through hell and back. after chemo, lumpectomy with reconstuction on both breasts. Nodes removed from right side only. Involved in clinical trial, 3rd phase, so far doing well, I also had many weeks every day of whole breast radiation. MRI in 4 weeks because I had a BARD gene. I wish I could stop thinking about cancer and when it might strike again. Being Triple neg makes me worry. My hair has come back very very white, thin, and was curly but losing the curls. Does anyone stop thinking about it?
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I am here as well, newly diagnosed triple-negative. I will be starting treatment (Chemo, then surgery, then radiation) next week.
Martaj, a year out is a milestone! I hope that the worry can fade as you reach further milestones, and live cancer-free. I am at a different point, but I am really trying to put the worries about things that I have no evidence for aside (ie - what if the tumour does not react to chemo? what if it comes back? etc). I try to put those in a box in my mind, and focus on the things I can control. This is working for me for right now. I tell myself if one of these things happen, I will deal with it at that point.
Can I ask what clinical trial you are in? Is it for a chemo drug? I will be taking the same drugs as you, over 20 weeks.
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I haven't checked in here for quite a while. I feel like I'm in a weird limbo phase where I'm far enough on this journey that I don't need too much support, but not far enough that I can be a beacon of hope for others yet. At the same time I feel like I shouldn't try to decide what might give someone else hope and reassurance and leave that to them. so here it goes,
My first cancerversarry was 2/13 (I think I share this with someone else on this thread but maybe a different year. Since my diagnosis I have been through chemo, childbirth, chemo, surgery, surgery, oral chemo, and I have my tissue expander switch-out in just 2 days. I am waiting to find out if I've been assigned to the medication or monitoring arm for an adjuvant keytruda trial. My fingers are crossed for medication since I'm still trying to throw everything I can at this beast.
Looking at everything that has happened it feels so crazy, but life is almost starting to get back to normal for me. I'm going back to my job in a month and am ecstatic. I took my kids hiking in north carolina for a week and carried both of them at the same time across the 4 river crossings on the way to and back from little bradley falls. My hair is coming back pretty fast and thick as usual. Most of the time I'm able to put my worries about recurrence aside. I'm starting to plan on a disney trip for my oldest in the fall, and am glad to say that I'm fully vaccinated for covid. My daughters first birthday is next month. At the beginning of this I worried that I wouldn't be around to see it. I felt terrible for bringing a child into the world that wasn't going to have a mother. I am planning on being there for her and my son for a long time and I try not to stress too much about the future. I focus a lot on what I can do with my kids now and it helps a lot with those anxieties.
Thank you all for your help when I was first in this crappy boat. Especially the ever lovely beesy. I hope that I can join so many of you in the 5 year club, but while I wait I'm getting in as much living and love as I can. To all the new comers; we're the crappiest club ever, but we definitely have the best members. Hang in there.
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Cle42, I was on taxol, carboplatin, cytoxan, adriamycin and trial drug atezolizumab.
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hawkvand, I logged in just to tell you how much I love this: "we're the crappiest club ever, but we definitely have the best members. "
SO true. Thanks for the update. You've had a busy year, and I wish you many many more of them.
I'm 2 years past diagnosis (end of Feb, 2019) and past lumpectomy (April 18, 2019.) I have a follow-up appointment with the breast surgeon next week. She took me on for annual appointments because the MO didn't see a need for me to continue with him. I'm glad to have 3 appointments per year still, one w PCP, one w BS, and one w the "survivorship clinic" NP, all spaced fairly evenly through the year. I'm hoping that in a couple more years I'll find that many appointments annoying and be glad to switch back to only one or two.
It's still hard to put everything in perspective but it's shifting a little at a time. I'm very busy, which helps let the cancer fade into the background. I got my hair cut yesterday and it's now a short, soft bob after I kept it very short most of last year, so the hair is less of a reminder now. If it weren't for the tinnitus, ever present, I might actually be able to forget about cancer sometimes.
Those of you who are in early days, it's a long road. Be patient with yourself. Do what you can to stay physically active, and mentally involved with other things. If you have depression or anxiety, that isn't something you need to cope with by yourself. There is help available for the asking. Pay attention to today, and look forward only in short time frames. Fill those up and just keep going.
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Good news on horizon for those w TNBC?
https://www.cancernetwork.com/view/datopotamab-deruxtecan-shows-promise-in-heavily-pretreated-triple-negative-breast-cancer0 -
Santabarbarian...thanks for sending that link!
I'm still at beginning phase, finished up 4 dose dense AC treatments, on my first Taxol, 3 more to go. I had good response to the AC, hard as a rock lymph node has gone down completely. I just hope the Taxol is working, after that will be scans. Dr did say something about oral chemo, not sure what it will be and if it will be after the surgery. The survivors on here are great and it really gives me much encouragement and comfort during this scary time. Poppy-90 said something about friends can be disappointing during this time, it is true, I think people don't know what to say or do so they disappear. Then, complete strangers can show so much kindness and love, I have been brought to tears.
Sending good vibes your way, stay safe and healthy!
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You too Nature Yogi!
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Hi guys,
Good to see everyone. I am eternally grateful for being continually "lifted up" by this thread. 😌 Let me just launch right in. I've come for something of course! I know information on Cancer and Covid-Risk isn't readily available yet, but I also know that a year in it has got to be growing. Now that we are all getting vaccinated, I've been FULLY vaccinated with PFIZER since the end of March because I work at a school. Got my second shot on March 23rd so I guess I actually wasn't fully vaccinated until April 7th. Anyway, I am looking for what I know to be true, which is documentation, research, or newsp[aper articles that talk about the fact that while this virus is still circulating, I am still at increased risk, more than the average vaccinated Pfizer American, due to immune system reduction from Cancer treatment, Radiation, and Chemo. It's for a personal reason, not to start. some campaigns trying to appeal to the ANTI-VAXXERS' higher selves to get them to vaccinate so that the immunocompromised are protected too. That's not why. I need it for Jury Duty, Family Court, etc. Chaperoning kids to a movie theatre, etc.
So what I am looking for is any info links etc to articles supporting the idea that: the vaccine, although fantastic, does not work as well on people who have had cancer treatment. So that when I mitigate my risk, it's up to me, and forcing me into a work situation with unvaccinated people is unacceptable. Not talking about K-12 students here, those we've gotten wrangled at school - we know what we are doing now. Ventilation, ventilation, ventilation. Winter will be tough though. I myself am also a University student and my University has required that all students be vaccinated if they want to walk the campus when we reopen next fall. Unvaccinated people will need to undergo daily covid testing before being cleared to walk the campus. With a history of five full days of testing leading up to their first day on campus and no gaps in between testing days. Testing is on campus, and with the numbers of unvaccinated being low, there aren't any lines. Because non-vaccinated individuals would need a doctor's note, from a real doctor stating it is medically necessary for them not to be vaccinated rather than to be vaccinated, and that goes before the universities medical center review board. So no private-quack letters will fly. Vaccinated people are required to test only every 150 days. Not sure where they got that number. Masks are still required etc. My university is a safe place for me to be, or it will be in the Fall. So I'm not talking about that either. I am talking about having to appear for Jury Duty and anything else that comes up like family court etc. So I can stay remote in these situations where I would have to sit for long periods of time with the unvaccinated. I need articles and studies if there are any, or maybe advice?
Even airlines require testing. Family Court does not. So I don't want to do court in person. Thank you so much!
Thank you! LMK. I hope all are well, and that all of you 👑Breast Cancers Warriors👑 are burning through this second life of ours, with the light of a thousand stars! Stay Vigilant and keep Staying Alive! Once again, I am eternally grateful for being continually 👑"lifted up"👑 by this thread. 😌
-Frack👑
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Hi Frack!
I work in a judicial agency in Georgia, and have been following very closely the way our state has been handling the issue of COVID and jury duty. And following the way our state does it requires following the way other states do it, at least in general. And at this point, states are generally appearing to be very careful about in-person jury trials. I don't know whether family court in California has jury trials, but if they do, and if you are called in, my best advice would be to call the jury clerk and ask what the COVID-related protections there are for prospective jurors. They will either have them and be able to tell you what they are, or they will tell you what the work-arounds are.
For example, in Georgia, our juvenile court doesn't have juries at all, but for the last year, trials have been held by Zoom or other video-conference platform. In some cases, everyone appears by Zoom even the judge, and in other cases, some people are in the courtroom and others are on Zoom. So my best advice, again, would be to call the jury clerk if you are summoned as a juror. If you are called as a witness, contact the lawyer for the party who sent the subpoena and ask how you are to appear - in-person or by video. Most courts will have a remote option at this point.
So bottom line, you likely won't need to show your own research to take advantage of any of these options. The court systems are being advised by their local and state departments of health, so they probably have the benefit of that research just as you do.
Even so, as we all know, nothing goes as smoothly as we'd like, but I'd say you can be somewhat optimistic that no court proceeding will be considered more important than your health. People are excused all the time even prior to the pandemic for health related reasons. So try not to stress about this!
Anne
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Hi Hawk,
I guess that makes 3 of us unless I'm the second. I am also a Dx of February 13th, 2/13/19. Of course, I also celebrate 3/1/2019, my Surgery day. They are both important! Have to find it to get rid of it right?
Does this crappy club have jackets and if so what are they made of? Do not say crap...it's hope, right? 👑
Stay Vigilant!
- Frack
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I actually have been called to jury duty starting next week. Not sure if it's in person or not. Probably won't know until I call in on Friday. I'm fully vaccinated as of April 15th, and I plan on continuing my Pandemic protocol of mask wearing, social distancing and hand washing/sanitizing in any case. I'm in LA, and our numbers are down to almost nothing. So, even if it is in person, I feel fairly confident that I will be okay.
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Ah, okay thanks, Piper! Good good! But all that said, I am being dragged into family court. I need to thwart the in-person appearance. I will wait and see how all that plays out, but I will I guess check with how the juries are being handled too. I'd like the scientific evidence anyway, I still have field trips to bow out of, etc.. I want an immunocompromised button or something until all this is done and COVIDs not circulating anymore. And I am a scientist so I want to see it myself. I'm an astronomer but science is science and I have to be shown things. I can't imagine catching COVID and losing one's life because of some ridiculous court rules. Our Family Court Judges aren't known for being reasonable without evidence presented to them. And Family Court is like the Wild West here in California. It's not normal, trust me. I really appreciate it, if you have the actual evidence and could post the links would be great. I will likely have to have my lawyer plead my case for a remote appearance. That's just how that goes. Thanks so much. I said Jury duty really so that it is relatable for everyone. As far as I know, I have not been called for Jury Duty lately and our Family Court does not have juries, so it's not really a jury issue, sorry to misrepresent. Thanks again!
-Frack☺️
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Ah, okay thanks, Piper! And Trishyla! Good good! But all that said, I am being dragged into family court. I need to thwart the in-person appearance. I will wait and see how all that plays out, but I will I guess check with how the juries are being handled too. I'd like the scientific evidence anyway, I still have field trips to bow out of, etc. I want an immunocompromised button or something until all this is done and COVIDs not circulating anymore. And I am a scientist so I want to see it myself. I'm an astronomer but science is science and I have to be shown things. I can't imagine catching COVID and losing one's life because of some ridiculous court rules. Our Family Court Judges aren't known for being reasonable without evidence presented to them. And Family Court is like the Wild West here in the Bay Area of California. It's not normal, trust me. So, if anyone has links to articles or studies, they could post about us being immunocompromised and probably not as well protected by the vaccine I would SO appreciate it. I will likely have to have my lawyer plead my case for a remote appearance. That's just how that goes. Thanks so much. I said Jury duty really so that it is relatable for everyone. As far as I know, I have not been called for Jury Duty lately and our Family Court does not have juries, so it's not really a jury issue, sorry to misrepresent. Thanks again!
And I totally support you're doing Jury duty, Trishyla, I'm also a high school science teacher, I know living with risk, I've been teaching in-person since Early April - and we mitigate that risk and it's fine. But we are VENTILATED at school. To the outside. All of our rooms have huge doors and windows that are open to the outside so air is blowing through constantly. Courts aren't ventilated to the outside. There are huge windowless Halls in general. Ours here are anyway, I'm personally am not risking stepping foot in a courthouse. So for my situation, I need some studies. But this is a great topic and it has generated some conversation! That's great! Does anybody have the articles stating that we are actually immunocompromised? Articles abound. I know someone has them. Thank you so much. I'll keep looking myself. I will also search this site.
Thanks again!
-Frack😌
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Frack can you get a 'doctor' note? Can your MO help you out?
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Here's an article about some conditions that may make the vaccine less effective: https://www.washingtonpost.com/health/2021/05/18/immunocompromised-coronavirus-vaccines-response/
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PiperKay,
Thank you for the article, I appreciate it!
I obtained a letter from my Oncologist and it has helped me in a lot of situations. They even noted that if anyone has any questions or concerns, can call the office direct.
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Glad to help a fellow Georgian, NatureYogi!
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Hello, Fellow TNers,
As of Thursday, I'm now five years out from my diagnosis date, this despite chemo being delayed by needing a second lumpectomy due to DCIS in the tumor margins and a serious infection from draining a seroma. I know cancer in general and the triple negative news in particular is scary so wanted to stop by to offer encouraging news to those feeling anxious about their diagnosis.
Lyn
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Congratulations, Lyn. What a huge milestone. Time to celebrate. 🍾🍾
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Thanks, Trishyla!
Lyn
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