Calling all TNs
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Meow - I had dd AC 4 times and then Taxol weekly for 12 weeks. 20 weeks total.
There’s another women who is TN ( her screen name will come to me) who had to quit chemo after her first treatment because of her reaction to it and she’s been cancer free for a few years
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Counting YearsNED - from diagnosis, surgery, last day of treatment?
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My MRI and mammogram came back good today. White counts back down, but because the other numbers are normal they aren’t going to do anything.
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LoveMyViszla - congrats!
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It's great to see members reporting good news. Meadow what a great attitude and picture! LoveMyVizsla good news is always welcome have your white counts been mostly low since finishing treatment? I'm trying to figure out what my MO is going to watch as meaningful changes. It all seems random to me.
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Hello all, Its been so nice to see the older members drop in and saying hello.thank you, it means a lot to me..
I've finished chemo next step surgery. However my MO talks about chemo again if the tumor is larger than 1cm. Last Ultasound showed 1.6 to 1.9 cm. How many have been on another round chemo after surgery? I get to stop blood work, and no date yet about port removal. My MO beleive my GS will use the port. Any other information will be useful .. Sending good vibes.
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urdrago71,
I think it is almost standard practice now for TN's to get more chemo post tx if the tumor is more than 1 cm. I am doing Xeloda, but I have also heard of people doing an IV chemo. I figure it's worth throwing everything we have at it.
Rebekah
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rdeesides, thanks for responding I rather not do more infusions if I dont have to.. at this point my MO said, im a candidate for trial without details of drug since I'm waiting on surgery date of Oct. and than pathology report.
Xeloda is oral pill right? What kind of SE's have u had with it, if any??
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I am currently taking Xeloda. I start my fifth cycle on Friday. The biggest side effects are hand & foot and "loose stools". The symptoms are pretty manageable and your doctor can adjust the dosing and the schedule if the symptoms are too severe. Check out the Xeloda and TNBC page if you haven't already. Lots of handy hints.
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what is the protocol for xeloda? I haven’t been offered anything other than the 4 DD AC and 4 DD taxol. I have one treatment left then that’s it. If there is more I can do I’d like to do it all now.
Thank you for any info
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My surgeon removed my port when I had my re-excision, about a month post chemo.
My white counts are chronically low, and were pre-cancer, due to my version of lupus.
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Thanks for all the congrats. I am having a blast with this tiny new one. Md Anderson and my cancer center count from date of DX. I was told Xeloda is now standard if there is residual tumor 1 cm or more. More in the kitchen sink the better.
I have MO anxiety. Once I talk with her I feel better, but getting there I need meds.
So glad to hear from you ladies. I try to live in the here and now. It’s easier the further I get but any small thing can trigger those recurrence thoughts.
Val
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cccmc2, My understanding is Xeloda is being used if you had chemo first and then surgery and there is residual (live cancer) found at surgery. You can always ask your MO about it since it seems you had surgery first.
I had 7 mm residual and I am on Xeloda. Starting round 6 tomorrow. It made me stage ypT1b.
I am nearing the end of treatment and I too am wondering what's next? I did ask my MO about aspirin or vitamin D. Sounds like aspirin will be recommended. I know there is a clinical trial going on for aspirin for HER- . It's a pretty high dose 325mg, so not a baby aspirin but a regular full strength one.
Val, I take a ativan before going to appts. I hate that I need to but when I didn't I would be sitting in the waiting room with my heart beating out of my chest.
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Thank you Ladies.
Yes, I did have my surgery first. I was misdiagnosed as E+. Very frustrating as I’ll never know if the Chemotherapy is working. However there isn’t anything I can do but move forward and be as positive as I can. I just notice from time to time others with similar doagnosis as me getting other treatments besides AC & Taxol. I have asked about radiation and I guess because I had clean margins, lymph nodes , and Had a mastectomy, I don’t “need” radiation. That’s what my MO told me. I am going to ask about the other chemotherapies. I also asked about getting a prophylactic mastectomy on the other side, as I have very dense breast tissue. My surgeon thinks it’s unnecessary and we should just closely monitor with 3D imaging. She did say that if I’m obsessing over it we can revisit the prophylactic mastectomy. Any thoughts on that? Maybe I just don’t have a very aggressive onc team? I just want to do everything I possibly can now while im in fighting mode. I pray that none of have have to come back to this stage.
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cccmc2 - I'm in the same boat. I had surgery first because both my biopsy and pathology put me as er+. It was weak but it was there - weak staining of about 10% of cells. The Oncotype put me as under their threshold for er+ and then my MO started treating me as tnbc-like.
I had a lumpectomy so I'm having radiation. I understand that they only do rads post mastectomy if there are lymph nodes or margins are super close to chest wall etc.
I don't think Xeloda is even approved for early stage patients in my province so I doubt anyone will be recommending it to me. I will ask my MO about the aspirin. I think that might be worthwhile trying.
I'll be finished rads in a couple weeks & then I guess we just exercise, eat well, monitor ourselves, go for our checkups and otherwise we go on living our lives.
My mood about this vacillates a lot - sometimes I'm stuck in the "gack, what if it comes back? The odds of it coming back are not insignificant...." and other days I'm more "I'll just assume I'm in the cured camp & will live to a ripe old cranky age" Being busy doing other things helps.And as much as I appreciate this board, I think I will lock myself out for periods of time (I run productivity apps like RescueTime and Cold Turkey on my devices) because I think I need to stop thinking about it, kwim?
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I also have to take breaks from the Board and all things cancer related . I think that’s probaly normal for most. I hope everyone is having a fabulous day!!
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cccmc2, I had surgery first too and was Stage IIA. I wanted a lumpectomy, so had rads. If I had a mastectomy, I wouldn’t have needed rads. If my MO mentioned Xeloda I don’t remember. I do remember her bringing up Zometa, but I’m not a candidate because I have good bones.
Since you guys are my people 😁, do any of you have lymphedema in your arm? I have it in my breast so I know what that Is like, but now I’m wondering if it is kicking off in my arm after I had two mammograms in one day last week. I’m wondering what it feels like. I don’t think I have any visible swelling, but I might have my husband measure my arms to ease my mind.
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i have not had any lymphedema. I’m hoping I don’t with only 2 nodes removed, but I know it’s still possible. Good idea to measure! Hopefully it’s not to uncomfortable..
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I only had four removed, but this is just par for the course for me. Both arms are about the same size.
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Love - I had a mammogram recently and immediately following the side of my Breast was tight and sore feeling. Sometimes my fingers feel stiff. I had a cording issue after surgery in June 2017 and that also returned for a week.
I’ve heard that if you’ve had any nodes removed, you are always at risk to develope lymphedema
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I have lymphedema on my side with lymph nodes removed. It spread to my chest area. I have laser therapy twice weekly. I also have the Flexi touch machine that does at home massage to the affected areas. It's made a difference. We did not notice any lymphedema till my 2 year from dx mark. It was exactly a year after rads.
Val
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Hi All,
I recently passed the 5 year mark and wanted to post here. First, I want to say thank you to Breastcancer.org for having this site and this thread in particular. It was such a huge help to me during treatment and afterward. Second, I want to give hope to people that have residual cancer after neo-adjuvant chemo. I had residual cancer in two lymph nodes at the time of surgery and, thus, didn't get a pCR. Thank goodness, the radiation apparently did it's job and I haven't had a recurrence. TNBC is a scary diagnosis, but is is possible to survive. There is life after breast cancer. Wishing everyone the best.
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Good morning TN friends! I’ve been gone for a couple months. We moved to another state and got the kids started in school. I’m working on getting established with new doctors and I’m participating in an After Breast Cancer program at the Y. So far so good. My new MO is having my path results retested by this facility and then we talk about her recommendations on next steps Sept 12. She seems more inclined than my previous MO to give me Xeloda. I didn’t get PCR but I also didn’t have 1 cm of residual so it’s clear as mud trying figure out what, if anything, I should do.
Glad to read most of you are coming along well. Always love reading the amazing success stories!!
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VL22 & meow,
I am the one that had to stop chemo after 2 doses. December 26th I will be 6 years. I had one lymph node affected. Last PET scan was last December. All clear. I will be 72 in October. I am grateful for every day. I like to stop by now & then. Read up all the back pages & am so glad to see the milestones mount up. I try to just do anything I can do & try to stay active. Trying to live up to my handle (lookingforward66) was 2 months past 66th birthday at dx.
Wishing all continued success.
Marsha
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Hey moth, be sure to let us know what your MO says about taking aspirin (low or regular dose), I'm very curious - I asked mine, and besides being all defensive and snarky with me for having the nerve to ask questions (especially if I need to ask about something that we'd already discussed after getting conflicting information from other doctors), she refused to discuss aspirin after I decided not to do the clinical trial. She said there was some literature that supported aspirin as a preventative measure, but she wouldn't say anything else and she refused to give me the OK to take it, and I was already exhausted in the appointment from having to fight with her to get any answers at all to my other pressing questions, so I just didn't have it in me to keep arguing. If there's a chance it might help, I'm very interested in starting a daily regimen, just to feel like I'm doing something to try to stop this from coming back, however small.
(I chose not to do the trial because I just can't handle the anxiety anymore - a trial means a decade of extra appointments, extra tests, extra thinking about all of this mess, and given how unsupportive and unhelpful the agency has been with me, especially concerning my mental health, I just really don't want to subject myself to more stress from them, especially knowing that I could very well just be taking a sugar pill for a decade. My doctor wasn't very pleased with my decision.)
I do wish I had a MO that was willing to listen and discuss things with me and actually field my questions, I'm tired of talking to doctors that get defensive and mean when I have questions about my health and my life and then get offended with me if I've done my own research and want to discuss things. It's bad enough that I now wake up every single day wondering if today is the day it comes back and it's game over, not being able to have a proper discussion with the doctor tasked with my care (because she gets seriously offended if I do anything besides smile and nod to everything she says) makes it a million times worse, it's like they enjoy sending me off frustrated and in tears (but with no answers) after every appointment.
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Congrats, Simple Life!!!
I, too, had residual CA in two of my lymph nodes so you give me such incredible HOPE!!! I am past my three year mark and am feeling positive about my prognosis.
My biggest question is....what to do NOW with this one precious life? How can I give back and make a difference?
Happy Labor Day to everyone!
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Here re a few things I am doing, with my oncologist's support:
- Metformin (taking 500mg now - people who tae it get fewer metasteses)
- aspirin (taking baby aspiring now)
- Melatonin at bedtime
-heat on site of tumor and axillary node (HW bottle, heating pads) & infrared saunas (look up hyperthermia)
-a brief fast (fasting mimicking diet) prior to chemo ... veggie juices & midlly ketgogenic diet, with healthy carbs post chemo
- supplements and vitamins (Quercetin, Alpha Lipoic Acid, D3, EFA fish oil capsules, Curcumin, B6...). I may try some vitamin infusions as well. For people looking for complimentary stuff I recommend talking to an integrative medicine doctor. The Onccologist was fine with this plan but did not suggest any of it. I feel like doing everything I can to protect my healthy cells and nuke the cancer....
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AnxietyGirl, can you not request to change doctors? I can’t imagine the extra stress of an uncooperative team who are unwilling to answer your questions to set your mind at ease.
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I'm new. I was diagnosed stage 1 IDC triple negative August 9, 2017. Had bilateral mastectomy September 8. Started chemo October 5th. Finished chemo January 11th. Had exchange to implants July 10th....my birthday. I'm 66. Taxol left me with neuropathy in my feet. I also had strange things as I would wake up in the middle of the night and smell cigarette smoke but that wasn't possible. That's just recently stopped. I also was out of whack with my sweat glands. When I got warm I didn't sweat. I felt like ants were stinging me. That too has recently stopped and I sweat once again.
I'm working out at the YMCA. That seems to be helping me regain strength and stamina.
My hair started growing back in late April...black with gray. I have been natural blonde my entire life. My hair stylist colored it for me last month. We compromised with brown.
My year with cancer has been my purgatory. I keep hoping to wake up and be my old self with my breasts and hair.
I hope they find a cure in my lifetime.
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A master switch controls aggressive breast cancer
https://www.sciencedaily.com/releases/2018/08/180830180052.htm
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