Calling all TNs
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Hi to all the old friends and newbies here!
100% dark chocolate?? Is it sweet at all??
I hope everyone is doing well and catching up on old movies, tv shows and good books during this time of isolation. I know that my house should be neat and immaculate with so much time on my hands, but.....
STAY WELL everyone!0 -
Haha, I did a zoom exercise class today and had a small struggle finding a place to put my camera that looked really neat in the background!
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Hi another NYC girl - in reference to dark chocolate - I am not as brave as Sylvia doing the 100% - I go for 80% which is quite edible and the great thing about it is that it does not want you craving more than just a few squares LOL
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santa, - I understand COMPLETELY!
adagio, - thanks, - i'll try it!
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Hi all! I haven’t been here in awhile. Today is my 48th birthday and it was 3 years ago today that I was diagnosed. It is so hard to believe. I cherish every day and I am so thankful for the support I got here.
To those just starting this horrible journey or in the trenches - I am in your pocket. I never thought I would have a day when I didn’t think about cancer, but I do have them now. Sometimes I just can’t believe that it was me who endured so much - we are really so strong.
I just feel like I was holding my breath until I got to the three year mark.
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VL22 I am so happy for you!! Cheers!!
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Happy Belated Birthday, VL22!
Three years is an important milestone. Congratulations!
Lyn
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Happy Birthday and 3 year mark, VL22!
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Hi all! I just had my first post-treatment mammogram and I'm happy to say it was clear. Still have to talk to the MO about it on Monday, but i didn't realize how much I was dreading it until I had a good cry afterwards.
I have developed a bit of cording in my right arm behind the lymph node incision, along with some fluid retention in the armpit. PT and home exercises should address this; I'm determined to fix it!
I have really unruly, shaggy, short curly hair - not sure what to do about that though, other than just waiting it out!
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HolaGirl, I had my physical chest and arm pit exam today along with blood work, everything was good, and it was such a relief to me also. I'm TN also and I too didnt realize how emotional I would be. All this mental crap wears me down...lol here is to better days
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Great news ladies!! Very inspirational! I had blood work on Monday (first time post chemo and surgery) and I’m sure scans to follow! Also dealing with cording and now swelling on right hand!! Will ask about PT for sure!
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It's so nice to have this site with people who totally get it. I was wondering of anyone that's survived had lymphovascular invasion. My initial biopsy showed none but after my mastectomy, which was march 24th, it showed it. I had clear margins, negative lymph nodes and tumor went from 2.5 cm to 0.6 mm. I have been trying not to focus on a reaccurance or metastasis but it's hard. My PET scan prior was clean but I know that doesn't predict the future. I have a friend who passed a year ago at age 45 from TNBC that metastasized to her lungs and brain so I'm very nervous. Thank you all, you are all amazing survivors..and to you just starting best of luck.
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Statistically speaking most TNBC recurrences happen fast, within the first 3 years. It's normal to have anxiety about recurrence. Hopefully the worry will fade as years pass, because your odds will get lower.
My MO told me the big factor is not stage as much as "does your tumor respond to chemo?" -- yours did!
I am have one more year till I get to three. I manage my anxiety by sticking to a good exercise and diet program, which are factors within my control. I do self exams and I am attentive. i hope to have left this BS in the rearview -- I will feel better in another year!
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Thank you Santabarbarin for your reply. I did not have complete PCR but my tumor went from 3cm to 0.6 mm so it was almost gone. They said it was a good response. I have been exercising and focusing on eating better.
Question, do you get yearly PET scans? I would like to just to be safe but my Dr says they will only do it of I have symptoms. If I have symptoms I feel it's too late. Just wonder what others do.
I truly appreciate your understanding. It's nice to talk to others who have been through it and understand. Best of luck to you for continued health.
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My doc said the same. He also he'd give me a MRI if I were panicking but he advised against it, and I am not panicking. I am getting annual mammo and US, and get breast exam from BS-- staggered. My breasts are not dense, easy to image. Might feel differently if I had tricky breasts.
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Hi ladies - I'm a 10+ year survivor of TNBC. My oncologist always told me that it's front loaded so if it's coming back, I'll do so in the first few years. Also, keep in mind chemo is very effective for TN because the cells are fast growing. All the best!
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Hello Sugar 77,
I was looking at the thread and I recognised your name instantly and I could picture your photograph even before i saw it again and I remembered that you were from Canada.
I just wanted to say congratulations on your ten years plus since diagnosis.
I shall be a fifteen year survivor on June 20th this year, just a few weeks to go.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hi TN's, I just got back from my Onco apt for my 6 month checkup and he said that everything is fine except for my while blood count. He said it's low a 3.7 and wants me to get back to him if something changes. I asked like what do I watch for and didn't get a good answer. I wanted to know specifics. He said that with strong chemo I was given, leukemia could happen.off guard I looked up WBC and it talks about Luekopenia. now I can't remember if it was Leukopenia or Leukemia bc I was off guard. We get chemo to rid cancer and have the chance of getting another kind of cancer. My question to you all is, is there anyone that has gone through something like this? If so, what did your Dr. have you do? What would you know for peace of mind ? Now that I am thinking, I may want to have my blood work retested. I could swear that this has happened in the past or at one of my apts and my WBC came back fine. I think it's the way he said it or I'm just concerned for nothing. He also said that bc I am an anxious person he doesn't want me to worry, which is a total contradiction bc I am supposed to be very concern, right!??
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You might want to make sure you are taking the proper supplements which support making WBC... You can ask a naturopathic MD what they would recommend. I know selenium and zinc are on the list. Hyperbaric oxygen is an overall blood and bone marrow booster but not sure about WBC specifically. I hope it resolves soon!
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Meow, sorry for this blood count worry. I got to 6 months past chemo, things had been fine, and then my blood counts were all messed up, too. I'd had a very bad cold, and then another cold a couple weeks later, fell and hit my head. That's when they did the blood tests and found things were amiss. But then I had my regular, annual exam with PCP a month later, regular blood tests with that, and everything was okay again.
SO, I'd say don't worry too much about it for now. Ask your doc if you can have follow-up blood tests in, say, 3 months. Until then, just focus on doing your basic healthy things -- good quality, balanced diet, regular exercise, good sleep.
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Thank you ladies for the information, it helped. I will request another lab in a couple of months and see my reg Dr. as well. Looking back I suppose there were indicators like not sleeping well, sweating at night, and losing energy quickly. These can fall under so many ailments. After all that we have been through it can be difficult to figure out what could be causes our symptoms. We know that chemo has long lasting effects and for myself I have several issues from it besides this low WBC. It helps to know I'm not alone but wish it was for something else
. ((((HUGS))).0 -
Meow 0369, is your Dr aware of the night sweats and fatigue? Those are important separate symptoms that they should be aware of.
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Hi guys! I'm just checking in briefly. I'm almost 10 years NED now, and I swore I would always come back to give hope to those just beginning their journey with triple negative. My daughter is likely going to be having prophylactic mx at some point this year. I'm encouraging her to join the breastcancer.org family because I know there are many women who have had that done. She, like me, is BRCA 2+. She's not even 30 yet, but docs keep telling her she needs to consider this asap. But for those just diagnosed or going through this journey, I want you to know a couple of things. First, you do NOT have an expiration date! This is a hard battle... possibly the hardest one of your life... but don't let docs discourage you. Second, there are more of us out here ALIVE, living our lives, than you see here. Most of those who have come out on the other side of this are not on the group. They may pop in at times to give encouragement like I do. Statistics are scary with this stuff, and I couldn't find hardly anyone to talk to several years out when I went through it which gave me the impression maybe I was doomed. But that's just not true! So keep fighting... keep asking questions... remember the glass is half full... drink lots of water... get rest... think positive. May God bless you all!
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Found this article today. https://medicalxpress.com/news/2020-05-fine-tuning-treatment-triple-negative-breast-cancer.html
Meow, WBC numbers change daily. I have chronic leukopenia and neutropenia. I rarely get sick, it’s just a quirk of my system.
Maryjv, get that hand looked at ASAP. If it’s lymphedema, you don’t want it to progress any further. Get it under control now.
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Just started reading this post because I’ve mostly been reading the April 2020 start chemo thread. Great information here and to see 10 and 15 yr survivors is wonderful. I have my first TC chemo last Tuesday and except the body aches from neulasta injection the week wasn’t bad. The weekend was the worst but today i took a 2.7 mi walk on the beach
I. Had my CBC drawn today and no results yet but hope not much change. I do notice my HR is is the 80-90’s resting when it used to be in the 60’s, and walking not fast it averaged 122. Interesting to see what my RBC count will be. I am an RN and worked in the lab for 30 years so I’m hoping i’ll be able to share with my patients if they are interested. I work in interventional radiology where they put in ports and drains (i didn’t need either) but the threads here are so helpful since i have no family history. I did find a half sister 1 year ago on ancestry dna who’s sister died from BC so i had genetic testing done and that was negative also..Thank. You all for the advice and information it is so helpful, 3 more round of chemo then 15 radiation treatments then back to travel nursing!!0 -
Same treatment here. Finished my TC in March and 15 radiation treatments May 1st. It all sucked but it was also manageable. Radiation was a breeze compared to the bone pain from the injections. I'm just glad we caught this in the early stage.
Much love to you on this journey. Happy to answer any questions. - Kate0 -
Katej128, you are just about exactly one year behind me with close to identical stats. Think of me as you one year in the future. I just had my second post-treatment diagnostic mammogram, and got the all clear. Also, due to the virus-related restrictions on salons, my hair has been growing in without any restraint at all! Quite wild-looking with all the chemo curls. But I certainly am not complaining - too much, anyway. ;-)
Love to all y'all as we say here in the South!
Anne
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I have a question on TNBC. Given that TNBC has the possibility to recur outside of the breast, why do doctor's only rely on mammo's and breast exam's after diagnosis? Is there a study that indicates the location of recurrence is likely to occur in the breast mostly? I haven't read anything of that nature.
I hope you are all doing well. It's been a while, but a year ago, I was living off these boards. They kept me sane!
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Sueshe55, my heart rate elevated from the very low 70s at rest to 90 bpm during chemo and even walking through my small house briskly would elevate the rate to over 100 bpm. An EKG. echo and chest x-ray didn't reveal anything alarming. In my (luckily limited) experience in person and reading chemo threads here, doctors don't mention that side effect often.
My heart goes out to anyone getting cancer treatment anytime, bur especially those of you pursuing treatment during this challenging time.
Notdefined, I was shocked to realize that we weren't offered more aggressive follow-up testing following treatment. It's my understanding that studies showed no meaningful survivorship benefit to MRIs and PET scans absent symptoms. That means that it's unlikely that insurance would pay for the testing. My oncologist did order one chest x-ray post-treatment because my pre-chemo baseline x-ray showed a couple of spots. Many "vintage" people like me have benign lung spots, I think it's been 25 years since I had bronchitis, there was no growth and I'm not a smoker so I have had no further lung studies. The mammograms present minimal risk in terms of the amount of radiation exposure, aren't invasive and are relatively inexpensive so that seems to be the "go to," even though it's the internal spread that I find frightening.
Thank you to those who come back periodically to offer encouragement. May 20th marked 4 years since my diagnosis and so far, no evidence of the cancer rearing is ugly head again. Since I have lymphedema and peripheral neuropathy in my hands, feet and lower legs from treatment, I don't have days when I don't think about cancer. These are manageable collateral damage issues and I'm grateful that I'm still here to complain about them now and then.
Lyn
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Congratulations Lyn! That is fabulous! I truly appreciate you sharing your insight. Hope everyone is doing well.
Melissa
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