Calling all TNs
Comments
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@rlschaller I have the udderly smooth already! I'm just not ready to start taking the pills lol. Following your journey and knowing your case is more complicated than most,makes me feel lucky and blessed and is a reminder, for my myself at least, that things can always be worse. I wish you all the best! Hugs
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@mugsy44 i hear you ! Hang in there. If it helps, it gets better with time. And yes, if it only was a quick fix lol ! I have to say, I’m living my best life ! And yes, I’m dealing with cancer but that’s not the whole of me or my life . and also I’m not going to let a diagnosis rule how I laugh, love, or have fun. All you can control is your response. Keep us posted!
@justsnapd8 lol it can always be worse this is so true. When I read the stories of other stage 4 gals and what they go through, I feel blessed to only have to deal with my skin Mets. I understand about the pills. It was not my favorite treatment , but it is called a miracle drug and I hope it works for you.
Hugs to all !
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hi gals, hope all the TNB gals are doing well. ❤️ hang in there!
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I'm thinking of all of you tonight too. So many of us.
Scans coming up for some of you. I just had an mri after last dose of AC. Inconclusive results. Residual enhancement in Same area difficult to tell from normal due to retracted nipple since surgery in 2008. Have to wait for pathology. You do anyways. I hope everyone here the best scans yet.
@justsnapd8 how is xeloda treating you? And the rest of you?
My dr is leaving the medical group so I get to look forward to new MO. I might like him more! We get a temp guy first. He has 35 yrs experience.
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Xeloda is treating me well, so far. I finally got brave enough to take it without anti-nausea meds first, lol. I do take it after a meal though.
Gail, I hope you love your new MO. I've thought about leaving mine, which in my case wouldn't be that big of a deal because both local cancer centers are under the same big umbrella, so my records would all be readily available. My MO is young, female, probably not even 40 yet, but she's smart! It's not the MO I have a problem with, it's the system. Some staff members tend to forget that we're people with needs.0 -
Does a yone here know, are tumor markers checked for TNBC?
Mine haven't been but they were checked regularly before dx with my ER+. They didn't rise at all.
Also lots of you are just finush8ng up active treatment but I'm wondering the frequency of scans you will be getting. Any ideas? I would guess 3-4 months since TNBC is aggressive. I was going 6-12 months with stable disease.
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Anybody else think a spread sheet to track everyone would be helpful. Ha!
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@gailmary - with my first dx the plan was imaging once a year. With the second it’s every 3 months. Hope the pathology comes back clean. ❤️ Do you still have next steps in this treatment plan or are you finished?I’ve lost track where you are in your treatment plan. Love the spreadsheet idea Lol.
@justsnapd8 glad you are doing ok on the Xeloda. My first MO was very smart and also 40s, she left the hospital I went to , and her replacement is a gal closer to my age, which I like. 40 years of experience , but not a big talker. My other MO is a researcher and about ten years younger than me, also with lots of experience. I like them both. If you do change , glad it would not be a hassle for you.
And yes, as @cookie54 said, I also have tumor markers checked regularly. Love the keep thriving wish for all 🤗 and hugs too for all who need one today.
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Hi Ladies. I Hope everyone is feeling better than me. This is day 11 of Cycle4. And my worst week as predicted by MO. Every day should be better going forward.
Abdominal pain and some diarrhea, WBC down to .5 and a fever put me in EMERGENCY the other day. Sleeping most of the day if I'm not coughing or wiping a drippy nose.
The plan is to continue Keytruda and surgery April 10.
My concern is that CT showed possible colitis starting and not diverticulitis that I suspected. My PA warned me about that about a month ago. So maybe I don't want to continue Keytruda. I thought it might be worth skipping a treatment if not quitting it altogether. Any idea if there is a way to know if it's even working for you? Any thoughts?
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@gailmary I'm sorry you're feeling so poorly. You're now done with AC, aren't you? I hope things get better for you moving forward. Are you saying the cause of your possible colitis might be Keytruda? I hadn't heard of that, and since I also get Keytruda, I thought I would ask. Hope you feel better and better every day!
I finished my first cycle of Xeloda on Saturday, and bam, diarrhea on Sunday! Perfect timing, or what? I haven't had any other SEs except a teeny tiny blister near my right thumbnail, and maybe a little unusual cramping in my fingers.0 -
@justsnapd8 , yes, exactly that. PA said Keytruda could attack any of the major organs. And it can lead to colitis about half way through treatment. It may clear up when stopped.
I'm done with getting AC but this is day 11 so what's accumulated in my system will still give side effects. Dr said expect it to be the worst week. Now Daughter is telling me to expect more diarrhea from the strong antibiotics I just started. WBC on the rise so hope that helps.
Glad to hear xeloda has been good to you so far. I hope does it's job.
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@gailmary thank you for that information on Keytruda. if I knew that, then I forgot, which wouldn't be a big surprise. I'm due for another infusion and a couple of days. I can see the antibiotics doing that. Try and stay hydrated so you don't end up in the emergency room again. Feel better soon! Hugs
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Hi everyone ! Just reporting back in. I finished up Xeloda and Keytruda, had my PET, CT, & full blood work 2 weeks ago and received the results last week… all clear! Yea! @gailmary as far as frequency, my next scans & bloodwork won't be until October but after that my MO said every 3 months. Not sure why the first one after treatment is at the 6 month mark as I didn't question it at the time.
He also said that with the mastectomy my risk period is now only 2-3 years (vs 3-5 I was told with my lumpectomy), what worries me is that it came back after 7 yrs the first time so I don't really trust these time frames & feel like I will need to keep pushing for regular scans well beyond the 3yrs. For those that had a mastectomy are they still giving you the 3-5 years as highest risk period for recurrence or does it really drop to less?
Did anyone else watch the TNBC webinar that was on here? It was quite good. I had never heard of TILs before. Then just this past week a friend of mine who was recently diagnosed with early stage TNBC was having her TILs checked by her MO, my previous MO, before deciding what chemo she needed (i.e. if she can avoid the red devil) so very exciting new developments happening all the time.
Wishing you all well as you continue your treatments 💕
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Oh one other question…. I lost my fingerprints on Xeloda & they still haven't come back (finished X 6 weeks ago). Has anyone else here finished Xeloda and had your fingerprints come back? Just wondering if my hands will recover or if it is a permanent thing.
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Yay, Dawn for clear scans. Did they declare you cured? I am confused though. If you aren't stage 4 and had mastectomy, are you still getting scans with that frequency? They don't do that with the other types of breast cancer. I know TNBC is usually aggressive, so maybe that's why and that would be great cause I really felt they dropped the ball with my first cancer. I will be checked anyway cause of my other cancer but scans were only once or twice a year.
I guess I imagined I wrote with an update. My mastectomy has been postponed cause my thyroid is really screwed up. Anesthetist said that TSH only needs to be trending down (I think) so maybe only postponing two weeks - if I'm lucky. Increased levothyroxine to 88 mcg. Only 9 days ago.
Meanwhile I'm still pretty miserable with back pain and rib/nerve pain where I collided with piece of equipment. Also belly bloat and pain. (Suggestions anyone?) Cold alot and pretty tired. Most comfortable lying down so that's ok. Drs think it's due to thyroid and not keytruda. Thyroid so high I couldn't get keytruda last Monday which I was prepared to refuse anyway.
Oh and I met the new dr. A real talker! Yay. Could just be temporary though.
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Hey @dawn68, I'm so happy you're doing well and got a good scan result. I just had my bilateral mastectomy in January so I'm a bit behind you. I'm on my second cycle of Xeloda. My fingerprints are still intact so far. At what point did you notice you lost them?
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@gailmary the scans are to check for any spread, metastasis. MO says because it is aggressive, if it is going to show up in other parts of my body, it will most likely be fairly quickly i.e. 2-3 yrs. My regular scans will be X-Ray & US, not PETs, so mostly checking if any spread to my organs. The frequency is not normal here either, but given my history, my MO ok to do it.
@gailmary so sorry to hear your mastectomy postponed, hope your thyroid resolves itself soon.
@justsnapd8 to be honest I'm not sure when I lost them, just realized one day that I couldn't use my fingerprint on my computer. So annoying! Fortunately we can use face recognition on our phones now. Hope you manage Xeloda okay. It was definitely the easiest of all the chemos for me.
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@dawn68 yep it's the computer I'm judging it on. So far so good. Managing Xeloda good, just intestinal discomfort a.k.a. diarrhea toward the end of the cycle, but it's manageable with a little help from Imodium. have a great week!
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@dawn68 yeah ! So glad your scans are clear, that’s great news. I’m glad you will do a 6 month scan and then a 3 months. If it comes back, it does happen fast so good to be ahead of the game. Hopefully it stays dormant from here on in. Yep, I lost my ability to use fingerprints for the phone and iPad. Face recognition saved the day. Not sure if it comes back, I’m off Xeloda over a year .
@gailmary - sorry to read of your discomfort , and thyroid issues. The body ! Hopefully it resolves and heals up and you can move forward with your treatment plan / mastectomy. Fingers crossed that all goes well and soon. Love that your new Dr MO is a talker lol… that’s a nice change .@justsnapd8 - glad that Xeloda is working for you Ok with minimal SE. That’s great.
I’m well, just started radiation for the skin Mets progression. Hugs to all ❤️
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@gailmary my thyroid was pretty screwed up too. I think we've discussed that before though. I was taking 88 mcg, then 112 mcg. my PCP finally increased it to 137 mcg and that dose put the number in the normal range. I hope your surgery goes off and schedule this time and you can get that behind you.
I blame my fatigue on Xeloda. when my thyroid got straightened out I felt good until I started taking Xeloda. I'm curious. Why were you going to refuse Keytruda?
Rhonda - Glad to hear you're doing well. How's the radiation treating you?0 -
@justsnapd8 Radiation is easy. Out of all the treatments, it’s quick in and out of the treatment center, and no serious SE. My skin turns pink , but no pain or skin issues . Moisturizer is key, twice a day to keep the skin hydrated is all. I have full range of motion and just slight fatigue in the evenings. But that could be from the chemo too. I know everybody is different and reacts differently. Ive just started so will keep everyone posted as I progress. Showing signs of improvement already.
How are you feeling?
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@rlschaller I'm on my off week of Xeloda, so I'm actually feeling pretty good. Enjoying spring trying to get out and get some sunshine. Xeloda hasn't been too bad, I'm two weeks on and one off, and it does cause quite a bit of fatigue for me. thanks for the heads up on radiation. I've been lucky and blessed when it comes to having minimal SE during chemo so I think I'll fly through this! I'll keep the moisturizer on hand! Have a wonderful day
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Hi I’m Lisa from Toronto Canada. I was 40 when I was diagnosed with triple negative breast cancer. My ten year anniversary will be in Dec. I can’t believe it will be 10 years. I still go for a yearly MRI and Mammogram. I’m here for anyone who wants to chat. I remember googling triple negative and reading all the info on it and being so scared.
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@blamoms Awesome news ! Congrats on 10 years, and coming onto the thread to share. It’s scary yes, I didn’t know what to expect or what aggressive meant. Living it now, it’s actually OK. I roll with it. So wonderful to read that you are a long time survivor. ❤️ May it continue for much longer.
Hope everyone is doing well out there 🙏🤗 hugs to all
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@blamoms , congratulations and thank you for giving us all hope.
I'm 8 yrs metastatic with Idc er+. Never would have thought.
But now dealing with TNBC. Thyroid thc came down. 100 points quickly! Left mastectomy this morning. Now the wait for pathology.
Hope everyone else is doing well.
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@blamoms Thank you for sharing. Congrats on living with TNBC for almost 10 years. Here's to another 10! 🥂
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@gailmary Good luck with your surgery today and the path reports as well. Please update us when you're able.
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Hi, I’m 66 y.o, diagnosed 11/24. Apparwntly something had shiwn in mammigram 9/2019 but I was never told it was abnormal until 10/2024. Since then it has been a whirlwind. Apparently whatever showed up originally was not tn but when tumor was removed tn was found below it. Confusing. Started a/c 4/18/25, had secons round 4/30/25. Hair is falling out very fast. Of course not feeling the greatest either. Have 2 mire a/c to go the t/c x 12.
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