Calling all TNs
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@denial welcome to the thread. Sorry you are going through this, understand the journey though. Treatments can be tough at times, I find taking them one infusion at a time helps. My hair fell out too on a/c and then grew back really fast after surgery. T/C was easier for me. I found eating a plant based diet and mild exercise really helped through out those treatments. Maple tree cancer alliance has some great advice on eating and moving through treatments, if that is helpful at all. Good luck and we are here for you ! Very supportive bunch of gals here who know about the TN road…. Hugs 🤗
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@denial Welcome! I'm so sorry you're going through this. Did they do a biopsy in 2019? I guess it's possible that the TN was hiding under that tumor and they just didn't know. I started with the T/C, and my hair fell out right on schedule! That was about three weeks after I started chemo, and it got out of control fast. I remember a Saturday saying I wasn't ready to shave it and by Monday I was. Do it when you're ready emotionally. Again I'm so sorry you're going through this. Take one day at a time and before you know it you'll be on the other side of chemo.
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@denial So sorry you find yourself here but glad you found us. We are all here to support you a you navigate through rough waters. I also had A/C and lost my hair after 2-3rd round.I'm sorry you have to go through this. It is an emotional rollercoaster but before you know it you will looking in the rear view mirror. Sending you strength and big hugs💕
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I wasn't told about the mammogram being abnormal in 2019. It was Oct 2024bedore I was told anything about it. . A new Dr replaced the previous one and she told me about it and immediately scheduled a new mammogram.
This was followed up with biopsy on 11/4/24. Was diagnosed with hormone driven C. As close to 0 as could be they said. But when that tumor was removed TN was either in the breast tissue or another tumor (depending on which pathology ya read🤷♀️).0 -
@denial what a confusing situation, and not to have had all the information you needed to take action in a timely manner. Ugh! ❤️ well now at least you have a new doctor and a new plan. Will you be doing chemo or radiation ?
Have a great day 🤗0 -
The dr tells me I have to do 4 rounds of a/c chemo, 12 rounds of t/c then radiation. Seems awfully excessive to me with clear lympnidea and margins. I have completed 2 rounds if a/c. Have had a hard time with 2nd round. I dont believe I will be taking anymore of it. Hair has already fallen out and staying pretty sick. Thanks for messaging 🙂
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@denial Did you have a lumpectomy or a mastectomy? I'm sorry you're having such a hard time with A/C. You may need to call your oncologist and let them know the treatment is too harsh for you. they may be able to tweak it or order different nausea medication.
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Morning Ladies, sorry I have been missing for awhile, husband had to have stents put in had a blockage of 100 and 99%, hope all of you are doing ok, I am doing ok, finished all treatments and will have scans May 19th, kinda wish we could skip them, always so nervous having them done
Trying to read up on all of you
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@pinkone501 Glad you checked in. I hope your hubby is doing better. Happy that you finished your treatments, yay! Worrying about scans is normal. Here's hoping for great results for you! Hugs!
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@pinkone501 Glad to hear your hubby is ok and his blockages were caught and stented. Also nice to hear you finished treatment, congrats! Sending good vibes for a nice clean scan❤️
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hi dear, thank you for you msg 🙂
so nice to know there’s others who understand although I wish no ine elsae has has to deal with this. I messaged oncologist office but havent heard anything back from them yet. I dont think i will be doing anymore a/c after the last time I has it, just to much.0 -
Just wanted to say hi 👋 this is my second time around with TNBC. I'm coming out of the worst of the side effects from my 4th (hopefully last EVER) A/C and will be switching to weekly Taxol soon.
Today is a hard day, physiologically, though I attended a local virtual support group this morning which was helpful. I don't recognize myself when I look in the mirror these days, it's just hard to believe this is my life right now, so I'm taking it a day (hour) at a time.
Nice to connect! Sending love and light to all you out there today ✨️
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@kks_rd Hi, I'm so sorry to hear your dealing with TNBC again. It's so hard to go back to treatment when you think you would never have to do it again! You have the right attitude by taking it one moment at a time. I know the road is long but you will get there and this won't be your life forever. We're all here any time you want to chat. Hugs♥️
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@kks_rd I'm about a year into diagnosis and treatment for the first and hopefully only time, and I can't imagine having to go through this again! I'm so sorry you have to deal with this. One day at a time is the best any of us can do. Hang in there! BIG hugs 🤗
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hi gals, old friends and new ! I jokingly told a friend this journey is not for the faint of heart. ❤️ takes resilience and courage. But we can do it, so many have before us, and so many coming after us. I’m well, sending hugs to all.
@pinkone - so nice to read you are doing well. In your pockets for scans on May 19. Sending you and your hubby much light and love for a quick recovery.@kks - it’s a lot to get your mind around. But the good news is that it’s just your mind, you can change your mind. That is where our power lies, how we respond and how we think, at least that’s my perspective lol. Good luck with Taxol.
@denial - A/c is tough.. for some too much I hear you. Perhaps your MO has alternatives or can lower the dose for you.
@ justsnap- how are you ?
Agreed, it’s One day at a time, one treatment at a time. And also, as you can make a list of what you enjoy … for me it’s the birds song, the sunshine streaming in, laughter and flowers.
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@rlschaller Good to hear from you. I'm hangin'. Actually not too bad. Enjoying spring and I'm all about the birds and squirrels too! Life's simple pleasures! Hope you're doing well! 🤗
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Yes , it’s the small joys many times. I’m hanging in too. ❤️ I ran into a young gal I met at the radiation center on the street outside the infusion center. She just finished her first set of treatments and is about to start her 5 years of tamoxifen (not a triple negative treatment option) and she gave me a lollipop, one of her favorite flavors. We laughed and hugged, small joys one day at a time makes life a joy.
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Happy weekend, everyone! Today is better psychologically... though I swear I've had every chemo side effect possible, including done not on the cancer journey BINGO card like shingles! It's all mild and a small price to pay to try to save my own life, but, UGH. Today I'm looking into Hand-Foot Syndrome, has anyone ever experienced this?
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@kks_rd Glad you are doing a bit better emotionally. So sorry to hear your dealing with shingles also, ugh! I need to get my butt to the pharmacy and get my shingles vaccine. I have been delaying it , sometimes ya just don't feel like getting one more shot!
Yes I have been dealing with HFS for a couple years. I have learned to manage it so it has improved over time. What would you like to know? Will you be on Xeloda after Taxol?
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@cookie54 Years?? How do you manage it? Anything beyond the usual advice?
What I think may be HFS started about 2 weeks ago, after my 3rd AC. At the time, the only area was a pink area near the shingles so we thought it was related. Since then it's like I've had eruptions here and there. I have blood blisters / purple areas on the bottoms of my feet and a few raw red areas under my underarms (atypical I know, they got chafed from a sports bra... silly me trying to stay active during treatment lol). It's very painful! Does that sound about right based on your experience?
I have done the cold gloves and booties during treatment but clearly didn't do enough to protect myself in the days after. If it's not HFS I don't know what else it could be. I plan to call my onc and send photos tomorrow. I'll start taxol this week, not dose dense so I'm thinking that's a good thing.
I don't have specific questions... just wanted to connect with someone who's been there and done that. Thanks @cookie54 and any others who reply.
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@kks_rd when I was on Xeloda I had HFS. It manifested as red and peeling on the soles of my feet. I used udderly smooth cream and it was not painful, just ugly lol… I did not like the peeling but the extra moisturizing 2x a day was super helpful. It eventually went away, though my heals need aqua for nightly for dry skin. A/C can cause it as well. I’m going on Doxil on Wednesday, and my MO has said that is the main SE , so I’m getting ready for ultra attention to moisturizing hands and feet again.
Purple areas and pain I did not experience as part of HFS, glad you will talk and share pics with your MO . Always good to share and discuss! Taxol was easier for me than A/C , but every body responds differently to the meds. Keep us posted ! It’s not easy, but you get used to adapting to what arises , given time. Hugs ❤️
@cookie54 how do you manage it? What moisturizer do you use ?
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@kks_rd So my HFS involved peeling skin on my hands and feet, redness and discomfort. The creams that I currently use are Aquaphor and Neutrogena Hand Cream Swiss formula. I have also used in the past, Bag Balm, Udderly Smooth, Grapeseed oil and diclofenac gel. For me by lowering my dose of Xeloda, eating a diet with low folic acid has really improved my HFS. When I do experience a flare up I am sure to lather up and wear gloves and socks for several hours or overnight to let it soak in.
I have never had purple areas or blood blisters. It looks more like the soles of my feet and palms were sunburn and peeling. Glad to hear your calling MO tomorrow, sorry you are suffering with this! Keep us posted.
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The results of my annual bilateral 3D Mammogram on 6/2/25 are normal/benign. No better way to start June.
My last TNBC treatment was during March 2011.
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@teka that's wonderful news! Congratulations!
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@teka fabulous ! Wishing you a glorious summer and joy filled days ❤️
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