Calling all TNs

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.

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! ☺️

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

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.

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

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!

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

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.

Wonderful news, ALHusband!

Thank you for encouraging newcomers who unexpectedly find themselves in this sometimes bewildering and scary situation.

Lyn

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?

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.

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.

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!

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👑

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