Calling all TNs

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))).

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!

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!!

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

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

Thanks, Melissa!

Lyn

just had my one year follow-up PFC— all good, but I do worry since it is just an exam, no bloodwork or scans, but I am feeling well, so going to trust the professionals!

Good to hear Mncteach!

Farfalla6, what scans are you getting? I've just had mammograms since I finished treatment last year. I know there are differing opinions in the medical world about the value of other types of scans, but I'm always interested to know which ones others are getting and whether they feel they are helpful, even if only to one's mental health! And you are so right about this period of time; I feel like I'm just holding my breath until I get to five years. Only 3.5 more to go!

Wednesday I see my medical oncologist. I guess when I have an appointment coming up I always feel the pull toward these boards because my mind is going to the cancer place again. But really, I have been feeling very well, not thinking too much about it other than the constant Verzenio and Ibrance tv ads on a channel my husband likes to watch. Talk about a trigger! Oh well, there are many people who have it worse than I do. I really do count my many blessings every day.

Congrats Valstim!!!!!!

Popping in to say hello, and to thank you guys for sharing your stories...

I haven’t updated my profile, but have been diagnosed in the last few days with BC in both breasts: my left breast is DCIS, hormone positive; my right breast has a TN-IDC mass that feels larger than 5cm, appeared on Mammo at 4.8, and on US as 3.something... lymph nodes looked good on US... MRI Monday, port placement will be Tuesday and chemo—Carboplatin & Taxotere every three weeks x 6—will begin shortly after... (the concurrent DCIS excludes me from the Immunotherapy trials).

Info from response to chemo and genetic testing will inform my surgery options—and then surgery outcomes will drive the bus from there...

I’m terrified of chemo... have any of you had this particular magic potion? Thoughts, suggestions?

Santabarbarian, thank you for your generous reply!!! I see my MO today, and will keep those ideas in my back pocket! I’m also interested in the integrative therapies, so will find and read your story with great interest! Thanks again!!

Hi all,

Anyone here have bilateral bc? Left side is tn , large tumor with impacted nodes and right side has 2 small er pr + . I had a red spot on my skin which is how I found my lump. Biopsy confirmed it was bc. It did lighten up on ac. Trying to find info about this and how to treat. Tumor seems to have shrunk on ac now on t with 4 treatments left. I am having some inflammation on left underarm. My onc said it is normal but I am concerned.

Thanks

Flvtgirl, You might ask about them adding carboplatin to the taxol. Carboplatin works very well against basal-like (high grade) TNBC.

As you can see by my stats, I was also diagnosed with bilateral breast cancer. Right side was triple negative and left side was er/pr positive. I had seven tumors with five distinct kinds of cancer. I am three and half years out from ACT chemo and three years out from BMX. I also did 8 courses of Xeloda.

I chose not to have radiation and have not been able to stay on an AI due to side effects. So far I'm doing well.

Best wishes for continued healing.

Trish